History > 2012 > USA > Health (II)

Troubled Past for Suspect

in Fatal Subway Push

December 30, 2012
The New York Times
By MARC SANTORA
and ANEMONA HARTOCOLLIS

Long before Erika Menendez was charged with pushing a stranger to his death under an oncoming train at a Queens elevated station, she had years of contact with New York City’s mental health and law enforcement establishments. She was treated by the psychiatric staffs of at least two city hospitals, and caseworkers visited her family home in Queens to provide further help. She was also arrested at least three times, according to the police, twice after violent confrontations.

Ms. Menendez’s years of inner and outer turmoil culminated in the deadly assault on an unsuspecting man who was waiting for a train on Thursday. Beyond stirring fear among riders on crowded platforms across the city, the attack also raised new questions about the safeguards in a patchwork private and public mental health system that is supposed to allow mentally ill people to live as freely as possible in the community while protecting them and the public.

A similar attack more than a decade ago led to a law aimed at forcing mentally ill people with a history of violence to undergo treatment, but it is widely acknowledged to cover only a small portion of those who need help.

D. J. Jaffe, the executive director of the Mental Illness Policy Organization, an advocacy group, said that thousands of troubled individuals with violent histories were released from mental health facilities, and that beyond requiring that they have a home to go to and an outpatient care plan in place, there was little oversight of their activities.

“No one monitors if they are taking their medication,” Mr. Jaffe said. “Or follows up to see if they are a danger to themselves or others.”

The case of Ms. Menendez, 31, puts renewed attention on a mental health system that is a loose amalgam of hospitals, supported housing, shelters and other advocacy and support groups, in which mentally ill people often bounce from one to the other and ultimately fall through the cracks. It is not known precisely where she fit in.

City officials said it would be misleading to conclude that anyone was at fault in her treatment.

“People get well and then they get sick again,” Ana Marengo, a spokeswoman for the city’s Health and Hospitals Corporation, which runs Bellevue and Elmhurst Hospital Centers, said Sunday. Ms. Menendez had been treated at both hospitals, according to friends and law enforcement officials.

Ms. Marengo declined to confirm or deny whether Ms. Menendez had been treated at either hospital, citing confidentiality rules, but said that patients who were treated at city hospitals often were discharged into the care of outpatient mental health providers.

There were ample warnings over the years concerning Ms. Menendez.

In 2003, according to the police, she attacked another stranger, Daniel Conlisk, a retired firefighter, as he took out his garbage in Queens.

“I was covered with blood,” Mr. Conlisk recalled on Sunday. “She was screaming the whole time.”

Just two months earlier, Ms. Menendez was accused of hitting and scratching another man in Queens. She was also arrested on cocaine possession charges the same year.

Since then, according to friends and people familiar with her record, she has been cared for at mental health facilities in Manhattan and Queens as her problems worsened.

Between 2005 and February this year, the police responded five times to calls from relatives reporting difficulties in dealing with Ms. Menendez, reportedly stemming from her failure to take certain medication, according to a law enforcement official who was not authorized to speak publicly about her medical history. In one of these instances, in 2010, she threw a radio at one of the responding officers, the official said.

“She has been in and out of institutions,” another law enforcement official said, speaking on the condition of anonymity.

Within the past year, she was discharged from Bellevue, according to a person with knowledge of her medical history.

An attendant at the psychiatric ward at Elmhurst Hospital Center declined to go into detail about Ms. Menendez’s treatment there, but said that “all I can tell you is we know her very well.”

Ms. Menendez is being charged with murder as a hate crime and, if convicted, faces a possible sentence of life in prison.

For prosecutors, the decision to charge her with a hate crime was based on statements she gave to the police after her arrest on Saturday, when she claimed she attacked the victim, Sunando Sen, 46, because she hated Muslims and Hindus. Mr. Sen was born in India and, according to a roommate, was raised Hindu.

A family friend who identified himself only as Mike said Ms. Menendez was not a racist. But he acknowledged her troubled mental history and calls to the police regarding her behavior. He said she was supposed to be monitored as part of an outpatient program for the mentally ill run by Elmhurst.

“We had someone come to the house, spend six minutes, asked how she was doing, giving medication,” he said by telephone. “I used to tell them, ‘Listen, she’s not home.’ And then they would come back the next week. They’d leave you the medication and come back in the next week.”

The exact nature of what Ms. Menendez was being treated for could not be learned. It was also unclear if she was currently on medication or had lapsed in her treatment.

When she was arraigned on Saturday night, the judge ordered that she be held without bail and undergo a psychiatric evaluation.

The attack, which occurred at the 40th Street-Lowery Street station in Sunnyside, was the second time in less than a month that a commuter was pushed to his death at a New York City subway station.

In the first case, Ki-Suck Han, 58, of Elmhurst, Queens, died under the Q train at the 49th Street and Seventh Avenue station on Dec. 3. Naeem Davis, 30, was charged with second-degree murder in that case.

Both attacks are reminiscent of two strikingly similar subway attacks that occurred in 1999 and galvanized the city.

In the attack with the most lasting effect, Andrew Goldstein pushed Kendra Webdale, 32, into the path of an N train at the 23rd Street station that January, killing her.

The death of Ms. Webdale, a journalist and photographer who had moved to the city from Buffalo, unnerved New Yorkers who had come to think of their city as the safest it had been in years.

Mr. Goldstein was convicted of second-degree murder, a decision that was overturned. But he ultimately pleaded guilty to manslaughter. Although he stopped taking medication for schizophrenia, the insanity defense did not convince a jury.

Yet in the outrage after Ms. Webdale’s death, the State Legislature passed Kendra’s Law, which allows judges to order closely supervised outpatient treatment for mentally ill patients who had a history of refusing to take their medication and who had been put in jail or hospitalized repeatedly or become violent.

The latest attacks show the flaws in the system, according to some advocates for the mentally ill.

“If you are involuntarily committed, once you are no longer dangerous, you are discharged,” Mr. Jaffe said.

Ms. Menendez often stayed in Rego Park, Queens, with her mother and stepfather in their 14-story apartment building. That was the address where family friends said she was visited by outpatient mental health workers from Elmhurst hospital.

When she was arrested in 2003, she was staying in Ridgewood, Queens.

In an interview, Mr. Conlisk, now 65, said he had never seen her before the confrontation. He said she approached him from behind, screaming and accusing him of sleeping with her mother.

“She goes into a boxer’s stance, and then she punches my face,” he said. He pressed charges and had a restraining order against her for a year, he added, but never saw her again.

“I think I would have been dead if she had a weapon,” he said.

Reporting was contributed by Daniel Krieger, Michael Schwirtz, Julie Turkewitz

and Benjamin Weiser.

    Troubled Past for Suspect in Fatal Subway Push, NYT, 30.12.2012,
    http://www.nytimes.com/2012/12/31/nyregion/erika-menendez-suspect-in-fatal-subway-push-had-troubled-past.html

Guns and Mental Illness

December 28, 2012
The New York Times
By JOE NOCERA

Many years ago, when I was a young reporter at Texas Monthly magazine, I spent the better part of six months in the company of a man who suffered from schizophrenia. His name was Fred Thomas; he was 23 years old; and he had been steadily deteriorating since high school, which is when most men first show symptoms of the disease.

I watched Fred as he was shuttled in and out of the state hospital in Austin, Tex. — one of the few that had not been closed down by the mid-1980s — where he was wildly overmedicated, and then released to either his mother’s home, which was invariably disastrous, or a halfway house ill equipped to help someone as delusional as he was.

I learned about the group homes that had sprung up after the closure of the mental hospitals. They were so gruesome that one outplacement worker told me she had never been to one “because I don’t want to know where I am sending them.” I spent time at a homeless shelter that had become, in effect, a mental institution without doctors or aides. Ultimately, the article I wrote was about how the “deinstitutionalization movement” of the 1960s and early 1970s — a movement prompted by the same liberal impulses that gave us civil rights and women’s rights — had become a national disgrace.

What spurs this recollection are two things. The first is Nina Bernstein’s powerful report in The Times this week about the plight of the mentally ill in New York. Although the article was pegged to the loss of services after Hurricane Sandy, in truth, Sandy only exacerbated a situation that was already terrible. With the mentally ill rarely institutionalized for any length of time — on the theory that their lives will be better if they are not confined in a hospital — other institutions have sprung up to take their place.

Prisons, for instance. According to E. Fuller Torrey, a psychiatrist who founded the Treatment Advocacy Center, a staggering 20 percent of the prison population is seriously mentally ill. Around a third of the homeless are mentally ill.

And one more statistic: “Ten percent of homicides are committed by seriously mentally ill people who are not being treated,” says Torrey.

In the wake of the massacres in Aurora, Colo., and Newtown, Conn., there have been essentially two central arguments about the cause. Liberals have stressed the need for new gun regulations that would make it more difficult for the likes of James Holmes and Adam Lanza to get ahold of killing machines like semiautomatics. There is no lack of sensible ideas: background checks for all gun purchasers, a national registry that would allow guns to be traced, an assault weapons ban, controls on ammunition, and so on. Nouriel Roubini, the economist, wrote in a Twitter message that gun owners should be required to have liability insurance, an intriguing idea. Some legislators who once blindly followed the bidding of the National Rifle Association are now saying they are reconsidering in the wake of Newtown.

Many conservatives, however, have placed the blame for the recent rash of mass shootings not on the proliferation of guns but on the fact that James Holmes and Adam Lanza were allowed to go about their business unfettered, despite their obvious mental illness. The editorial writers at The Wall Street Journal recently wrote that changing the way we treat the mentally ill “strikes us as a more promising path” for reducing mass killings than a fight over gun control.

In truth, both are necessary. If conservatives need to face the need for gun regulations — controls that will make guns less ubiquitous while still staying on the right side of the Second Amendment — liberals need to acknowledge that untreated mental illness is also an important part of the reason mass killings take place. Yes, it is true, as has been noted in recent weeks, that most mentally ill people don’t commit crimes. But it is equally true that anyone who goes into a school with a semiautomatic and kills 20 children and six adults is, by definition, mentally ill.

The state and federal rules around mental illness are built upon a delusion: that the sickest among us should always be in control of their own treatment, and that deinstitutionalization is the more humane route. That is not always the case. Torrey told me that Connecticut’s laws are so restrictive in terms of the proof required to get someone committed that Adam Lanza’s mother would probably not have been able to get him help even if she had tried.

“Mentally ill street people shame the society that lets them live as they do,” I wrote toward the end of that article in Texas Monthly. It has been 50 years since deinstitutionalization became the way we dealt with the mentally ill.

How much more proof do we need that it hasn’t worked?

    Guns and Mental Illness, NYT, 28.12.2012,
    http://www.nytimes.com/2012/12/29/opinion/nocera-guns-and-mental-illness.html

Republicans Must Support

Public Financing for Contraception

December 27, 2012
The New York Times
By JULEANNA GLOVER

Washington

TWO weeks ago, Gov. Bobby Jindal of Louisiana, a potential Republican presidential candidate in 2016, proposed making oral contraceptives available “over the counter.” This was a remarkable — and wholly positive — postelection development. It is just the sort of bold thinking the Republican Party needs to overcome its reputation for being unsympathetic to women’s concerns. (Last month, President Obama won the women’s vote by a margin of 10 percentage points.)

Making the party more appealing to women, however, should not — and need not — involve undermining the most basic Republican values. In the case of childbirth, the Republicans’ primary commitment is to the pro-life cause — and hence to reducing the number of abortions in the country. But abortion opponents should be pro-contraception, since making contraception as affordable and available as possible reduces the number of unwanted pregnancies and thus abortions.

In fact, historically, Republican lawmakers have voted to maintain or increase financing for the Title X Family Planning Program, which was enacted in 1970 under President Richard M. Nixon and currently provides about $300 million a year to state and local organizations for contraceptive care for low-income women. According to a 2009 Congressional Research Service report, Title X prevents almost a million unwanted pregnancies each year.

But in 2011 and 2012, the Republican Study Committee, a caucus of conservatives in the House of Representatives, proposed defunding Title X. The reason? Twenty-five percent of Title X funds go to Planned Parenthood, which not only provides contraceptive care but noisily advocates for abortion rights. Though federal law prohibits the use of Title X funds for abortions, the close association between Planned Parenthood and the abortion-rights movement has discouraged Republicans from channeling funds to the organization. This creates a serious public-relations problem for the Republicans. By trying to defund Planned Parenthood, Republicans can seem unsympathetic not just to abortion, but also to the plight of low-income and underinsured women who receive contraceptive care through the group’s clinics.

Throughout my career, I have worked with leaders of the pro-life movement. I have campaigned for Senator Jesse Helms of North Carolina, worked with the activist Phyllis Schlafly and for the conservative thinker Bill Kristol, as well as for Vice President Dick Cheney. In 1999, when Mayor Rudolph W. Giuliani of New York City, who supports abortion rights, formed a committee to explore a Senate run, I sought and won special dispensation from my pro-life mentors. (He was planning a run against Hillary Rodham Clinton, then the first lady, so that was easy.) I now work with a champion of the conservative movement, John Ashcroft, a former senator from Missouri who was attorney general under President George W. Bush. While my pro-life credentials are in good order, I urge my fellow Republicans to rethink our approach to pro-life advocacy.

Like Mr. Jindal, I believe we need to empower women to avoid unplanned pregnancies. Encouraging abstinence among young women is positive and necessary, but not enough. Supporting Title X is critical to reducing unwanted pregnancies. Pro-life Republicans must strive to ensure that no woman finds herself pregnant because she cannot afford effective contraception, as these women will either have abortions or give birth under Medicaid coverage, which increases the burden on taxpayers.

Maintaining a federal role in contraceptive care for low-income women is a far more moral, empathetic and fiscally responsible approach to the problem of unwanted pregnancies than simply condemning abortion — notwithstanding conservative principles of personal responsibility and limited government. If every woman who wanted reliable contraceptive care got it, irrespective of income, we should expect that abortion services would substantially decrease. This would not only reduce government spending on Medicaid — a dollar spent on contraceptive care is associated with a $2 to $6 reduction in health care costs — but, more important, avert the tragedy and anguish involved in abortion. And it would empower women to decide for themselves when they want to have children, advance their education or pursue career opportunities.

In the next round of budget proposals, the Republican-controlled House should take the opportunity to outflank President Obama and the Senate Democrats by proposing a budget that increases the baseline financing for Title X. At the same time, to make their pro-life position emphatically clear, they should vote on a bill denying federal funds to any group that performs abortions. The moral and financial costs of restricting contraceptive access far outweigh conservative concerns motivating Republicans’ recent opposition to Title X.

We pro-life advocates need to lead the Title X charge. Mr. Jindal’s proposal for over-the-counter contraceptives is an excellent policy objective, but it is likely to take years of study before the Food and Drug Administration could clear such sales. In contrast, increasing Title X funding would be an immediate step that the Republican Party could take to reach out to women. Through promoting wider access to contraceptives in this way, Republicans would be making a tangible effort to reduce the number of abortions — which was our real goal all along.

Juleanna Glover is a Republican strategist and an adviser to the National Campaign

to Prevent Teen and Unplanned Pregnancy.

    Republicans Must Support Public Financing for Contraception, NYT, 27.12.2012,
    http://www.nytimes.com/2012/12/28/opinion/republicans-must-support-public-financing-for-contraception.html

Elwood V. Jensen,

Pioneer in Breast Cancer Treatment,

Dies at 92

December 26, 2012
The New York Times
By DANIEL E. SLOTNIK

Elwood V. Jensen, a medical researcher whose studies of steroid hormones led to new treatments for breast cancer that have been credited with saving or extending hundreds of thousands of lives, died on Dec. 16 in Cincinnati. He was 92.

The cause was complications of pneumonia, his son, Thomas Jensen, said.

In 2004 Dr. Jensen received the Albert Lasker Basic Medical Research Award, one of the most respected science prizes in the world.

When Dr. Jensen started his research at the University of Chicago in the 1950s, steroid hormones, which alter the functioning of cells, were thought to interact with cells through a series of chemical reactions involving enzymes.

However, Dr. Jensen used radioactive tracers to show that steroid hormones actually affect cells by binding to a specific receptor protein inside them. He first focused on the steroid hormone estrogen.

By 1968, Dr. Jensen had developed a test for the presence of estrogen receptors in breast cancer cells. He later concluded that such receptors were present in about a third of those cells.

Breast cancers that are estrogen positive, meaning they have receptors for the hormone, can be treated with medications like Tamoxifen or with other methods of inhibiting estrogen in a patient’s system, like removal of the ovaries. Women with receptor-rich breast cancers often go into remission when estrogen is blocked or removed.

By the mid-1980s, a test developed by Dr. Jensen and a colleague at the University of Chicago, Dr. Geoffrey Greene, could be used to determine the extent of estrogen receptors in breast and other cancers. That test became a standard part of care for breast cancer patients.

Scientists like Dr. Pierre Chambon and Dr. Ronald M. Evans, who shared the 2004 Lasker prize with Dr. Jensen, went on to show that many types of receptors exist. The receptors are crucial components of the cell’s control system and transmit signals in an array of vital functions, from the development of organs in the womb to the control of fat cells and the regulation of cholesterol.

Dr. Jensen’s work also led to the development of drugs that can enhance or inhibit the effects of hormones. Such drugs are used to treat prostate and other cancers.

Elwood Vernon Jensen was born in Fargo, N.D., on Jan. 13, 1920, to Eli and Vera Morris Jensen. He majored in chemistry at what was then Wittenberg College in Springfield, Ohio, and had begun graduate training in organic chemistry at the University of Chicago when World War II began.

Dr. Jensen wanted to join the Army Air Forces, but his poor vision kept him from becoming a pilot. During the war he synthesized poison gases at the University of Chicago, exposure to which twice put him in the hospital. His work on toxic chemicals, he said, inspired him to pursue biology and medicine.

Dr. Jensen studied steroid hormone chemistry at the Swiss Federal Institute of Technology on a Guggenheim Fellowship after the war. While there, he climbed the Matterhorn, one of the highest peaks in the Alps, even though he had no mountaineering experience. He often equated his successful research to the novel approach taken by Edward Whymper, the first mountaineer to reach the Matterhorn’s summit. Mr. Whymper went against conventional wisdom and scaled the mountain’s Swiss face, after twice failing to reach the summit on the Italian side.

Dr. Jensen joined the University of Chicago as an assistant professor of surgery in 1947, working closely with the Nobel laureate Charles Huggins. He became an original member of the research team at the Ben May Laboratory for Cancer Research (now the Ben May Department for Cancer Research) in 1951, and became the director after Dr. Huggins stepped down.

He came to work at the University of Cincinnati in 2002, and continued to do research there until last year.

His first wife, the former Mary Collette, died in 1982. In addition to his son, Dr. Jensen is survived by his second wife, the former Hiltrud Herborg; a daughter, Karen C. Jensen; a sister, Margaret Brennan; two grandchildren; and three great-grandchildren.

Dr. Jensen’s wife was found to have breast cancer in 2005. She had the tumor removed, he said in an interview, but tested positive for the estrogen receptor and was successfully treated with a medication that prevents estrogen synthesis.

    Elwood V. Jensen, Pioneer in Breast Cancer Treatment, Dies at 92, NYT, 26.12.2012,
    http://www.nytimes.com/2012/12/27/us/elwood-v-jensen-pioneer-in-breast-cancer-treatment-dies-at-92.html

Storm Exposes Fragility of Mental Health System in City

December 26, 2012
The New York Times
By NINA BERNSTEIN

When a young woman in the grip of paranoid delusions threatened a neighbor with a meat cleaver one Saturday last month, the police took her by ambulance to the nearest psychiatric emergency room. Or rather, they took her to Beth Israel Medical Center, the only comprehensive psychiatric E.R. functioning in Lower Manhattan since Hurricane Sandy shrank and strained the city’s mental health resources.

The case was one of 9,548 “emotionally disturbed person” calls that the New York Police Department answered in November, and one of the 2,848 that resulted in transportation to a hospital. But the woman was discharged within hours, to the shock of the mental health professionals who had called the police. It took four more days, and strong protests from her psychiatrist and caseworkers, to get her admitted for two weeks of inpatient treatment, said Tony Lee, who manages the apartment building where she lives, run on the Lower East Side by Community Access, a nonprofit agency that provides supportive housing to people with mental illness.

Psychiatric hospital admission is always a judgment call. But in New York City, according to hospital records and interviews with psychiatrists and veteran advocates of community care, the odds of securing mental health treatment in a crisis have worsened significantly since Hurricane Sandy. The storm’s surge knocked out several of the city’s largest psychiatric hospitals, disrupted outpatient services and flooded scores of coastal nursing homes and “adult homes” where many mentally ill people had found housing of last resort.

Beth Israel, for example, recorded a 69 percent spike in psychiatric emergency room cases last month, with its inpatient slots overflowing. Instead of admitting more than one out of three such cases, as it did in November 2011, it admitted only one out of four of the 691 emergency arrivals this November, records show. Capacity was so overtaxed that ambulances had to be diverted to other hospitals 15 times in the month, almost double last year’s rate, in periods typically lasting for eight hours, officials said.

Dr. Richard Rosenthal, physician in chief of behavioral services for Continuum Health Partners, Beth Israel’s parent organization, said he was proud of how much Continuum’s hospitals had done to handle psychiatric overflow since storm damage shuttered Bellevue Hospital Center, the city’s flagship public hospital; NYU Langone Medical Center; and the Veterans Affairs Hospital. But these days, he said, as he walks on Amsterdam Avenue between Continuum’s Roosevelt hospital on West 59th Street and its St. Luke’s hospital on West 114th Street, he notices more mentally ill people in the streets than he has seen in years.

“When you have the most vulnerable folks, all you need is one chink in the system and you lose them,” Dr. Rosenthal said. “Whether they lost their housing, or the outpatient services they usually go to were closed and they were lost to follow-up, they have become disconnected, with predictable results.”

Similar patterns are playing out in Brooklyn, where Maimonides Medical Center has been overwhelmed with mental health emergencies from Coney Island ZIP codes since Coney Island Hospital, one of the city’s largest acute care psychiatric hospitals, suspended operations, hospital officials said.

“Triage has reached a different level: You have to get sicker to get in,” said Dr. Andrew Kolodny, the chairman of psychiatry at Maimonides, citing a 56 percent increase in psychiatric emergency room visits from Oct. 26 to Dec. 7, compared with the same period last year, and a 24 percent rise in admissions. The increase in admissions was possible only with emergency permission from the state to exceed licensed limits.

“Not only is there decreased capacity, because Bellevue and Coney Island are off line,” Dr. Kolodny added, “but there’s increased demand because the storm or the loss of their residence has been a stressor for mental illness.”

The storm battered a mental health system that still relies heavily on private nursing homes and substandard adult homes to house people with mental illness. Such institutions have a sordid history of neglect and exploitation, and the courts have repeatedly found their overuse by the state isolates thousands of people in violation of the Americans With Disabilities Act.

Plans are under way to increase supportive housing — dwellings where mentally ill people can live relatively independently, with support services. But even before Hurricane Sandy, the expansion fell far short of demand.

The storm underscored the fragility of the system. Many disabled evacuees who were sent first to makeshift school shelters lost access to the psychiatric medications that kept their symptoms at bay, Dr. Kolodny said. Even those lucky enough to have the drugs they need are at greater risk of relapse as they experience crowded living conditions. “If they’re now sleeping in a gym with 100 people, that can tip them over the edge and start making them really paranoid,” he said.

On Staten Island, where the chief of psychiatry at Richmond University Medical Center says psychiatric resources have been stretched to the limit, clergy members report that mentally ill people transferred to a large adult home in New Brighton from one that was washed away in Far Rockaway, Queens, are now showing up at church rectories, begging for socks and underwear.

“It’s heartbreaking, because they just found us by chance,” said Margaret Moschetto, a missionary at the Church of Assumption-St. Paul in New Brighton. “They were just walking around the neighborhood. They really didn’t know where they were.”

Ana Marengo, a spokeswoman for the Health and Hospitals Corporation, which operates city’s public hospitals, would not answer questions about where emotionally disturbed people were being taken for evaluation in the absence of Bellevue and Coney Island, which were not expected to reopen before February. Nor would she say where the city had transferred hundreds of psychiatric patients when the two hospitals were evacuated, or how many outpatients had been lost to follow-up.

She referred inquiries to Samantha Levine, a spokeswoman in the mayor’s office, who said in an e-mail, “All the patients evacuated from Bellevue are being cared for at other facilities and new patients are being treated at other hospitals that have expanded capacity to meet the community’s needs.”

Watchdog groups and legal advocates for the mentally ill filled in some of the blanks. Some painted a picture of heroic efforts by the state to help safely relocate patients, including 28 men who had been awaiting criminal arraignment in Bellevue’s forensic unit and were transferred to Kirby Forensic Psychiatric Center on Wards Island, and more than 300 chronic patients who were sent from Staten Island’s South Beach state mental hospital to Creedmoor in Queens and the Bronx Psychiatric Hospital.

Bellevue psychiatric patients went to private hospitals or to other city hospitals, including Metropolitan in East Harlem and Kings County in Brooklyn, where the psychiatric units are under supervision by federal court monitors after a 2009 settlement that tackled patient neglect, violence and excessive use of restraints.

In the confusion, some patients lost contact with their families and caseworkers. At Community Access, the same case managers who struggled to get hospital treatment for the young woman with the meat cleaver had to hunt for an elderly female tenant who had been taken to Bellevue by the police before the storm. The police had picked up the older woman for public urination near a schoolyard. But two weeks after the storm, which knocked out Internet access and telephone service at the apartment building, neither the staff nor her sister could find her.

Dorca Rosa, the elderly woman’s case manager, eventually located her at Gracie Square Hospital on the Upper East Side, behind several locked doors.

“I cried when I saw her,” Ms. Rosa said. “I found her in horrible conditions. She was lying in her own feces, she had a fractured leg and the provider could not explain how her leg was fractured.”

Frank Bruno, chief executive of the hospital, said he was unaware of the episode, and in any case could not comment because of patient privacy laws.

Acute psychiatric patients are rarely kept longer than 30 days; those involuntarily committed are released when they no longer pose a danger to themselves or others. The major problem is where to discharge people to make room for the next emergency cases.

“The dominoes start falling backwards,” said Yves Ades, 61, a psychologist and the chief operating officer of Services for the UnderServed, which runs 36 supportive housing developments for people with mental illness across the city, including one in the Rockaways that lost 80 units to flooding. “It was always a strained system, but it was functioning. Now, it’s breaking.”

    Storm Exposes Fragility of Mental Health System in City, NYT, 26.12.2012,
    http://www.nytimes.com/2012/12/27/nyregion/new-yorks-mental-health-system-thrashed-by-services-lost-to-storm.html

Stop Subsidizing Obesity

December 25, 2012
7:34 pm
The New York Times
By MARK BITTMAN

Not long ago few doctors - not even pediatricians - concerned themselves much with nutrition. This has changed, and dramatically: As childhood obesity gains recognition as a true health crisis, more and more doctors are publicly expressing alarm at the impact the standard American diet is having on health.

"I never saw Type 2 diabetes during my training, 20 years ago," David Ludwig, a pediatrician, told me the other day, referring to what was once called "adult-onset" diabetes, the form that is often caused by obesity. "Never. Now about a quarter of the new diabetes cases we're seeing are Type 2."

Ludwig, who is director of the New Balance Foundation Obesity Prevention Center in Boston, is one of three authors, all medical doctors of an essay ("Viewpoint") in the current issue of the Journal of the American Medical Association titled "Opportunities to Reduce Childhood Hunger and Obesity."

That title that would once have been impossible, but now it's merely paradoxical. Because the situation is this: 17 percent of children in the United States are obese, 16 percent are food-insecure (this means they have inconsistent access to food), and some number, which is impossible to nail down, are both. Seven times as many poor children are obese as those who are underweight, an indication that government aid in the form of food stamps, now officially called SNAP, does a good job of addressing hunger but encourages the consumption of unhealthy calories.

The doctors' piece, which addresses these issues, was written by Ludwig along with Susan Blumenthal, a former assistant Surgeon General and U.S.D.A. medical adviser, and Walter Willett, chair of Harvard's Department of Nutrition (and a stalwart of sound nutrition research for more than 30 years). It's essentially a plea to tweak SNAP regulations Supplemental Nutrition Assistance Benefits, the program formerly and more familiarly known as Food Stamps) so that the program concerns itself with the quality of calories instead of just their quantity.

"It's shocking," says Ludwig, "how little we consider food quality in the management of chronic diseases. And in the case of SNAP that failure costs taxpayers twice: We pay once when low-income families buy junk foods and sugary beverages with SNAP benefits, and we pay a second time when poor diet quality inevitably increases the costs of health care in general, and Medicaid and Medicare in particular."

The argument that soda and other junk masquerading as food should be made ineligible for purchase by food stamps, as are alcohol and tobacco, is one that's been gaining momentum in the last few years. It's also one that has led to a split in what might be called the nutrition advocacy community.

On the one side are "anti-hunger" groups who want to maintain SNAP's status quo; on the other are those who believe SNAP must be protected but also that it must be adjusted to take into account the changes in agriculture, marketing and diet that have occurred since SNAP was born 50 years ago, changes that have led to the obesity crisis.

I'm in that second camp, as are the authors of this article, who make a case that the rift is artificial, though both sides share the same fear: if we advocate any tinkering with SNAP, it may make the program more vulnerable to cuts which it can ill afford.

But the reality is that some billions of SNAP dollars (exact figures are unavailable, but the number most experts use is four) are being spent on soda, which is strictly speaking not food, and certainly not a nutritious substance, and is a leading cause of obesity. Seven percent of our calories come from sugar-sweetened beverages, none of them doing any of us any good.

Though there were those who argued against including soda when food stamps were created, the most pressing need was to address calorie deficiency, and that remains important. But the situation is different now: we recognize the harmful properties of added sugar, the importance of high-quality nutrients in children has been better analyzed, and obesity is a bigger problem than hunger. So funding low-quality, harmful calories is detrimental to both funders and recipients.

"It's time," says Ludwig, "for us to realize that the goals of anti-hunger and obesity prevention are not at cross purposes. In fact poor quality foods can actually increase hunger because they are inherently less filling." A child will become hungrier, sooner, after consuming 200 calories from a sugary beverage, compared to an apple and peanut butter with the same calories.

What's to be done? How to improve the quality of calories purchased by SNAP recipients? The answer is easy: Make sure that SNAP dollars are spent on nutritious food.

This could happen in two ways: first, remove the subsidy for sugar-sweetened beverages, since no one without a share in the profits can argue that the substance plays a constructive role in any diet. "There's no rationale for continuing to subsidize them through SNAP benefits," says Ludwig, "with the level of science we have linking their consumption to obesity, diabetes and heart disease." New York City proposed a pilot program that would do precisely this back in 2011; it was rejected by the Department of Agriculture (USDA) as "too complex."

Simultaneously, make it easier to buy real food; several cities, including New York, have programs that double the value of food stamps when used for purchases at farmers markets. The next step is to similarly increase the spending power of food stamps when they're used to buy fruits, vegetables, legumes and whole grains, not just in farmers markets but in supermarkets - indeed, everywhere people buy food.

Both of these could be set up as pilot programs by the USDA. Their inevitable success would lead to their expansion, and ultimately to better health for SNAP participants, who now number nearly 50 million. The impact of improving the diet of that many Americans would be profound; the impact of not doing so is tragic.

    Stop Subsidizing Obesity, NYT, 25.12.2012,
    http://opinionator.blogs.nytimes.com/2012/12/25/stop-subsidizing-obesity/

Our Failed Approach to Schizophrenia

December 25, 2012
The New York Times
By PAUL STEINBERG

Washington

TOO many pendulums have swung in the wrong directions in the United States. I am not referring only to the bizarre all-or-nothing rhetoric around gun control, but to the swing in mental health care over the past 50 years: too little institutionalizing of teenagers and young adults (particularly men, generally more prone to violence) who have had a recent onset of schizophrenia; too little education about the public health impact of untreated mental illness; too few psychiatrists to talk about and treat severe mental disorders — even though the medications available in the past 15 to 20 years can be remarkably effective.

Instead we have too much concern about privacy, labeling and stereotyping, about the civil liberties of people who have horrifically distorted thinking. In our concern for the rights of people with mental illness, we have come to neglect the rights of ordinary Americans to be safe from the fear of being shot — at home and at schools, in movie theaters, houses of worship and shopping malls.

“Psychosis” — a loss of touch with reality — is an umbrella term, not unlike “fever.” As with fevers, there are many causes, from drugs and alcohol to head injuries and dementias. The most common source of severe psychosis in young adults is schizophrenia, a badly named disorder that, in the original Greek, means “split mind.” In fact, schizophrenia has nothing to do with multiple personality, a disorder that is usually caused by major repeated traumas in childhood. Schizophrenia is a physiological disorder caused by changes in the prefrontal cortex, an area of the brain that is essential for language, abstract thinking and appropriate social behavior. This highly evolved brain area is weakened by stress, as often occurs in adolescence.

Psychiatrists and neurobiologists have observed biochemical changes and alterations in brain connections in patients with schizophrenia. For example, miscommunications between the prefrontal cortex and the language area in the temporal cortex may result in auditory hallucinations, as well as disorganized thoughts. When the voices become commands, all bets are off. The commands might insist, for example, that a person jump out of a window, even if he has no intention of dying, or grab a set of guns and kill people, without any sense that he is wreaking havoc. Additional symptoms include other distorted thinking, like the notion that something — even a spaceship, or a comic book character — is controlling one’s thoughts and actions.

Schizophrenia generally rears its head between the ages of 15 and 24, with a slightly later age for females. Early signs may include being a quirky loner — often mistaken for Asperger’s syndrome — but acute signs and symptoms do not appear until adolescence or young adulthood.

People with schizophrenia are unaware of how strange their thinking is and do not seek out treatment. At Virginia Tech, where Seung-Hui Cho killed 32 people in a rampage shooting in 2007, professors knew something was terribly wrong, but he was not hospitalized for long enough to get well. The parents and community-college classmates of Jared L. Loughner, who killed 6 people and shot and injured 13 others (including a member of Congress) in 2011, did not know where to turn. We may never know with certainty what demons tormented Adam Lanza, who slaughtered 26 people at an elementary school in Newtown, Conn., on Dec. 14, though his acts strongly suggest undiagnosed schizophrenia.

I write this despite the so-called Goldwater Rule, an ethical standard the American Psychiatric Association adopted in the 1970s that directs psychiatrists not to comment on someone’s mental state if they have not examined him and gotten permission to discuss his case. It has had a chilling effect. After mass murders, our airwaves are filled with unfounded speculations about video games, our culture of hedonism and our loss of religious faith, while psychiatrists, the ones who know the most about severe mental illness, are largely marginalized.

Severely ill people like Mr. Lanza fall through the cracks, in part because school counselors are more familiar with anxiety and depression than with psychosis. Hospitalizations for acute onset of schizophrenia have been shortened to the point of absurdity. Insurance companies and families try to get patients out of hospitals as quickly as possible because of the prohibitively high cost of care.

As documented by writers like the law professor Elyn R. Saks, author of the memoir “The Center Cannot Hold: My Journey Through Madness,” medication and treatment work. The vast majority of people with schizophrenia, treated or untreated, are not violent, though they are more likely than others to commit violent crimes. When treated with medication after a rampage, many perpetrators who have shown signs of schizophrenia — including John Lennon’s killer and Ronald Reagan’s would-be assassin — have recognized the heinousness of their actions and expressed deep remorse.

It takes a village to stop a rampage. We need reasonable controls on semiautomatic weapons; criminal penalties for those who sell weapons to people with clear signs of psychosis; greater insurance coverage and capacity at private and public hospitals for lengthier care for patients with schizophrenia; intense public education about how to deal with schizophrenia; greater willingness to seek involuntary commitment of those who pose a threat to themselves or others; and greater incentives for psychiatrists (and other mental health professionals) to treat the disorder, rather than less dangerous conditions.

Too many people with acute schizophrenia have gone untreated. There have been too many Glocks, too many kids and adults cut down in their prime. Enough already.

Paul Steinberg is a psychiatrist in private practice.

    Our Failed Approach to Schizophrenia, NYT, 25.12.2012,
    http://www.nytimes.com/2012/12/26/opinion/our-failed-approach-to-schizophrenia.html

Anatomy of a Murder-Suicide

December 22, 2012
The New York Times
By ANDREW SOLOMON

SUICIDE is not as newsworthy as homicide. A person’s disaffection with his own life is less threatening than his rage to destroy others. So it makes sense that since the carnage in Newtown, Conn., the press has focused on the victims — the heartbreaking, senseless deaths of children, and the terrible pain that their parents and all the rest of us have to bear. Appropriately, we mourn Adam Lanza’s annihilation of others more than his self-annihilation.

But to understand a murder-suicide, one has to start with the suicide, because that is the engine of such acts. Adam Lanza committed an act of hatred, but it seems that the person he hated the most was himself. If we want to stem violence, we need to begin by stemming despair.

Many adolescents experience self-hatred; some express their insecurity destructively toward others. They are needlessly sharp with their parents; they drink and drive, regardless of the peril they may pose to others; they treat peers with gratuitous disdain. The more profound their self-hatred, the more likely it is to be manifest as externally focused aggression. Adam Lanza’s acts reflect a grotesquely magnified version of normal adolescent rage.

In his classic work on suicide, the psychiatrist Karl Menninger said that it required the coincidence of the wish to kill, the wish to be killed and the wish to die. Adam Lanza clearly had all three of these impulses, and while the gravest crime is that his wish to kill was so much broader than that of most suicidal people, his first tragedy was against himself.

Blame is a great comfort, because a situation for which someone or something can be blamed is a situation that could have been avoided — and so could be prevented next time. Since the shootings at Newtown, we’ve heard blame heaped on Adam Lanza’s parents and their divorce; on Adam’s supposed Asperger’s syndrome and possible undiagnosed schizophrenia; on the school system; on gun control policies; on violence in video games, movies and rock music; on the copycat effect spawned by earlier school shootings; on a possible brain disorder that better imaging will someday allow us to map.

Advocates for the mentally ill argue that those who are treated for various mental disorders are no more violent than the general population; meanwhile an outraged public insists that no sane person would be capable of such actions. This is an essentially semantic argument. A Harvard study gave doctors edited case histories of suicides and asked them for diagnoses; it found that while doctors diagnosed mental illness in only 22 percent of the group if they were not told that the patients had committed suicide, the figure was 90 percent when the suicide was included in the patient profile.

The persistent implication is that, as with 9/11 or the attack in Benghazi, Libya, greater competence from trained professionals could have ensured tranquillity. But retrospective analysis is of limited utility, and the supposition that we can purge our lives of such horror is an optimistic fiction.

In researching my book “Far From the Tree,” I interviewed the parents of Dylan Klebold, one of the perpetrators of the Columbine massacre in Littleton, Colo., in 1999. Over a period of eight years, I spent hundreds of hours with the Klebolds. I began convinced that if I dug deeply enough into their character, I would understand why Columbine happened — that I would recognize damage in their household that spilled over into catastrophe. Instead, I came to view the Klebolds not only as inculpable, but as admirable, moral, intelligent and kind people whom I would gladly have had as parents myself. Knowing Tom and Sue Klebold did not make it easier to understand what had happened. It made Columbine far more bewildering and forced me to acknowledge that people are unknowable.

When people ask me why the Klebolds didn’t search Dylan’s room and find his writings, didn’t track him to where he’d hidden his guns, I remind them that intrusive behavior like this sometimes prompts rather than prevents tragedy and that all parents must sail between what the British psychoanalyst Rozsika Parker called “the Scylla of intrusiveness and the Charybdis of neglect.” Whether one steered this course well is knowable only after the fact. We’d have wished for intrusiveness from the Klebolds and from Nancy Lanza, but we can find other families in which such intrusiveness has been deeply destructive.

THE perpetrators of these horrific killings fall along what one might call the Loughner-Klebold spectrum. Everyone seems to have known that Jared Loughner, who wounded Representative Gabrielle Giffords and killed six others at a meet-and-greet in Tucson in 2011, had something seriously wrong with him.

In an e-mail months before the shootout, a fellow student said: “We have a mentally unstable person in the class that scares the living crap out of me. He is one of those whose picture you see on the news, after he has come into class with an automatic weapon.” The problem was obvious, and no one did anything about it.

No one saw anything wrong with Dylan Klebold. After he was arrested for theft, Mr. Klebold was assigned to a diversion program that administered standardized psychological tests that his mother said found no indication that he was suicidal, homicidal or depressed. Some people who are obviously troubled receive no treatment, and others keep their inner lives completely secret; most murder-suicides are committed by people who fall someplace in the middle of that spectrum, as Adam Lanza appears to.

So what are we to do? I was in Newtown last week, one of the slew of commentators called in by the broadcast media. Driving into town, I felt as though the air were full of gelatin; you could hardly wade through the pain. As I hung out in the CNN and NBC trailers, eating doughnuts and exchanging sadnesses with other guests as we waited for our five minutes on camera, I was struck by a troubling dichotomy. People who are dealing with a loss of this scale require the dignity of knowing that the world cares. Public attention serves, like Victorian mourning dress, to acknowledge that nothing is normal, and that those who are not lost in grief should defer to those who are. When I stopped in a diner on Newtown’s main drag, I did not sense hostility between the locals and the rest of us but I did sense a palpable gulf between us. We need to but cannot know Adam Lanza; we wish to but cannot know his victims, either.

In a metaphoric blog post called “I Am Adam Lanza’s Mother,” a woman in Boise, Idaho, who clearly loves her son but is afraid of him worries that he will turn murderous. Many American families are in denial about who their children are; others see problems they don’t know how to stanch. Some argue that increasing mental health services for children would further burden an already bloated government budget. But it would cost us far less, in dollars and in anguish, than a system in which such events as Newtown take place.

Robbie Parker, the father of one of the victims, spoke out within 24 hours of the shooting and said to Adam Lanza’s family, “I can’t imagine how hard this experience must be for you, and I want you to know that our family and our love and our support goes out to you as well.” His spirit of building community instead of reciprocating hatred presents humbling evidence of a bright heart. It also serves a pragmatic purpose.

My experiences in Littleton suggest that those who saw the tragedy as embracing everyone, including the families of the killers, were able to move toward healing, while those who fought grief with anger tended to be more haunted by the events in the years that followed. Anger is a natural response, but trying to wreak vengeance by apportioning blame to others, including the killer’s family, is ultimately counterproductive. Those who make comprehension the precondition of acceptance destine themselves to unremitting misery.

Nothing we could have learned from Columbine would have allowed us to prevent Newtown. We have to acknowledge that the human brain is capable of producing horror, and that knowing everything about the perpetrator, his family, his social experience and the world he inhabits does not answer the question “why” in any way that will resolve the problem. At best, these events help generate good policy.

The United States is the only country in the world where the primary means of suicide is guns. In 2010, 19,392 Americans killed themselves with guns. That’s twice the number of people murdered by guns that year. Historically, the states with the weakest gun-control laws have had substantially higher suicide rates than those with the strongest laws. Someone who has to look for a gun often has time to think better of using it, while someone who can grab one in a moment of passion does not.

We need to offer children better mental health screenings and to understand that mental health service works best not on a vaccine model, in which a single dramatic intervention eliminates a problem forever, but on a dental model, in which constant care is required to prevent decay. Only by understanding why Adam Lanza wished to die can we understand why he killed. We would be well advised to look past the evil against others that most horrifies us and focus on the pathos that engendered it.

Andrew Solomon is the author, most recently, of “Far From the Tree:

Parents, Children and the Search for Identity.”

    Anatomy of a Murder-Suicide, NYT, 22.12.2012,
    http://www.nytimes.com/2012/12/23/opinion/sunday/anatomy-of-a-murder-suicide.html

Drugs Aim to Make Several Types of Cancer Self-Destruct

December 22, 2012
The New York Times
By GINA KOLATA

For the first time ever, three pharmaceutical companies are poised to test whether new drugs can work against a wide range of cancers independently of where they originated — breast, prostate, liver, lung. The drugs go after an aberration involving a cancer gene fundamental to tumor growth. Many scientists see this as the beginning of a new genetic age in cancer research.

Great uncertainties remain, but such drugs could mean new treatments for rare, neglected cancers, as well as common ones. Merck, Roche and Sanofi are racing to develop their own versions of a drug they hope will restore a mechanism that normally makes badly damaged cells self-destruct and could potentially be used against half of all cancers.

No pharmaceutical company has ever conducted a major clinical trial of a drug in patients who have many different kinds of cancer, researchers and federal regulators say. “This is a taste of the future in cancer drug development,” said Dr. Otis Webb Brawley, the chief medical and scientific officer of the American Cancer Society. “I expect the organ from which the cancer came from will be less important in the future and the molecular target more important,” he added.

And this has major implications for cancer philanthropy, experts say. Advocacy groups should shift from fund-raising for particular cancers to pushing for research aimed at many kinds of cancer at once, Dr. Brawley said. John Walter, the chief executive officer of the Leukemia and Lymphoma Society, concurred, saying that by pooling forces “our strength can be leveraged.”

At the heart of this search for new cancer drugs are patients like Joe Bellino, who was a post office clerk until his cancer made him too sick to work. Seven years ago, he went into the hospital for hernia surgery, only to learn he had liposarcoma, a rare cancer of fat cells. A large tumor was wrapped around a cord that connects the testicle to the abdomen. “I was shocked,” he said in an interview this summer.

Companies have long ignored liposarcoma, seeing no market for drugs to treat a cancer that strikes so few. But it is ideal for testing Sanofi’s drug because the tumors nearly always have the exact genetic problem the drug was meant to attack — a fusion of two large proteins. If the drug works, it should bring these raging cancers to a halt. Then Sanofi would test the drug on a broad range of cancers with a similar genetic alteration. But if the drug fails against liposarcoma, Sanofi will reluctantly admit defeat.

“For us, this is a go/no-go situation,” said Laurent Debussche, a Sanofi scientist who leads the company’s research on the drug.

The genetic alteration the drug targets has tantalized researchers for decades. Normal healthy cells have a mechanism that tells them to die if their DNA is too badly damaged to repair. Cancer cells have grotesquely damaged DNA, so ordinarily they would self-destruct. A protein known as p53 that Dr. Gary Gilliland of Merck calls the cell’s angel of death normally sets things in motion. But cancer cells disable p53, either directly, with a mutation, or indirectly, by attaching the p53 protein to another cellular protein that blocks it. The dream of cancer researchers has long been to reanimate p53 in cancer cells so they will die on their own.

The p53 story began in earnest about 20 years ago. Excitement ran so high that, in 1993, Science magazine anointed it Molecule of the Year and put it on the cover. An editorial held out the possibility of “a cure of a terrible killer in the not too distant future.”

Companies began chasing a drug to restore p53 in cells where it was disabled by mutations. But while scientists know how to block genes, they have not figured out how to add or restore them. Researchers tried gene therapy, adding good copies of the p53 gene to cancer cells. That did not work.

Then, instead of going after mutated p53 genes, they went after half of cancers that used the alternative route to disable p53, blocking it by attaching it to a protein known as MDM2. When the two proteins stick together, the p53 protein no longer functions. Maybe, researchers thought, they could find a molecule to wedge itself between the two proteins and pry them apart.

The problem was that both proteins are huge and cling tightly to each other. Drug molecules are typically tiny. How could they find one that could separate these two bruisers, like a referee at a boxing match?

In 1996, researchers at Roche noticed a small pocket between the behemoths where a tiny molecule might slip in and pry them apart. It took six years, but Roche found such a molecule and named it Nutlin because the lab was in Nutley, N.J.

But Nutlins did not work as drugs because they were not absorbed into the body.

Roche, Merck and Sanofi persevered, testing thousands of molecules.

At Sanofi, the stubborn scientist leading the way, Dr. Debussche, maintained an obsession with p53 for two decades. Finally, in 2009, his team, together with Shaomeng Wang at the University of Michigan and a biotech company, Ascenta Therapeutics, found a promising compound.

The company tested the drug by pumping it each day into the stomachs of mice with sarcoma.

A week later, Cedric Barriere, the scientist conducting the experiment, went to his boss, Dr. Debussche, saying, “Laurent, I have a problem.” He confessed that he had treated some of the mice only once. And their tumors had vanished.

Dr. Debussche was stunned. “We have to reproduce it,” he said. They did.

Dr. Debussche popped open a bottle of Champagne, but his team tempered its hope.

“The joke is if we were trying to cure mouse cancer we would have done it 30 years ago,” said Dr. Donald Bergstrom, a vice president at Sanofi.

As research progressed, all three companies worried about the unprecedented challenges of testing a drug in many types of cancers at once. Such a clinical trial would most likely involve just a few patients in each of many medical centers. But keeping a trial going involves mounds of paperwork and documentation. Medical centers are often loath to do it for just a handful of patients.

Roche was the first to start testing a p53 drug in patients. The company began, as required, with an attempt to establish a dose strong enough to be effective but not too toxic. It took a surprisingly long time — three years — because Roche was cautious, starting with a tiny dose and gradually escalating it.

Health authorities in the United States and Europe worried that the medicines might have unexpected effects.

“Drugs of this type had never been given to a human being,” Dr. Gwen Nichols of Roche said.

The studies looked only at safety, but Dr. Nichols said there were encouraging hints that the drugs might be working. In biopsies and scans, cancer cells appeared to be dying. Rigorous efficacy studies are next. If they are successful, they will be followed by clinical trials across cancer types.

More recently, Merck began its study to find a safe dose. It is enrolling only patients with acute myelogenous leukemia, a cancer in which p53 is almost always disabled by the blocking protein MDM2.

Once the company finds the best dose, it plans to give its drug to just 15 to 30 patients and look for efficacy. And if the drug fails to break apart the two huge proteins and enable the angel of death to do its job?

“Then we will not bring the drug forward,” Dr. Gilliland said.

Sanofi is in much the same position. It just started its safety tests in Europe. Medical centers in the United States will be added next year. Like Merck, it will focus solely on patients who are most likely to respond to its own drug — in this case, patients with liposarcoma like Mr. Bellino.

Their tumors can be as big as a watermelon, says Dr. Andrew J. Wagner, an expert at the Dana-Farber Cancer Institute and one of Mr. Bellino’s doctors. They often start at the back of a patient’s belly, where they go unnoticed unless the person is very thin. “There is a lot of space back there,” Dr. Wagner explained. Surgeons try to remove the tumors, but they usually grow back and spread.

Liposarcoma is so rare — only about 2,000 or so cases each year — that no drugs have ever been specifically tested on patients with this type of cancer. Mr. Bellino said over the summer that he hoped he could be among the first to try it. When the call goes out for study subjects, he said, “I will be waving my hands.”

But the test will come too late for him. He died from his cancer on Nov. 13.

    Drugs Aim to Make Several Types of Cancer Self-Destruct, NYT, 22.12.2012,
    http://www.nytimes.com/2012/12/23/health/new-drugs-aim-to-make-cells-destroy-cancer.html

Alabama to End Isolation of Inmates With H.I.V.

December 21, 2012
The New York Times
By ROBBIE BROWN

A federal judge on Friday ordered Alabama to stop isolating prisoners with H.I.V.

Alabama is one of two states, along with South Carolina, where H.I.V.-positive inmates are housed in separate prisons, away from other inmates, in an attempt to reduce medical costs and stop the spread of the virus, which causes AIDS.

Judge Myron H. Thompson of the Middle District of Alabama ruled in favor of a group of inmates who argued in a class-action lawsuit that they had been stigmatized and denied equal access to educational programs. The judge called the state’s policy “an unnecessary tool for preventing the transmission of H.I.V.” but “an effective one for humiliating and isolating prisoners living with the disease.”

After the AIDS epidemic of the 1980s, many states, including New York, quarantined H.I.V.-positive prisoners to prevent the virus from spreading through sexual contact or through blood when inmates tattooed one another. But most states ended the practice voluntarily as powerful antiretroviral drugs reduced the risk of transmission.

In Alabama, inmates are tested for H.I.V. when they enter prison. About 250 of the state’s 26,400 inmates have tested positive. They are housed in special dormitories at two prisons: one for men and one for women. No inmates have developed AIDS, the state says.

H.I.V.-positive inmates are treated differently from those with other viruses like hepatitis B and C, which are far more infectious, according to the World Health Organization. Inmates with H.I.V. are barred from eating in the cafeteria, working around food, enrolling in certain educational programs or transferring to prisons near their families.

Prisoners have been trying to overturn the policy for more than two decades. In 1995, a federal court upheld Alabama’s policy. Inmates filed the latest lawsuit last year.

“Today’s decision is historic,” said Margaret Winter, the associate director of the National Prison Project of the American Civil Liberties Union, which represented the inmates. “It spells an end to a segregation policy that has inflicted needless misery on Alabama prisoners with H.I.V. and their families.”

Brian Corbett, a spokesman for the Alabama Department of Corrections, said the state is “not prejudiced against H.I.V.-positive inmates” and has “worked hard over the years to improve their health care, living conditions and their activities.”

“We will continue our review of the court’s opinion and determine our next course of action in a timely manner,” he wrote.

During a monthlong trial in September, lawyers for the department argued that the policy improved the treatment of H.I.V.-positive inmates. Fewer doctors are needed if specialists in H.I.V. focus on 2 of the 29 state’s prisons.

The state spends an average of $22,000 per year on treating individual H.I.V.-positive inmates. The total is more than the cost of medicine for all other inmates, said Bill Lunsford, a lawyer for the Corrections Department.

South Carolina has also faced legal scrutiny. In 2010, the Justice Department notified the state that it was investigating the policy and might sue to overturn it.

    Alabama to End Isolation of Inmates With H.I.V., NYT, 21.12.2012,
    http://www.nytimes.com/2012/12/22/us/alabama-to-end-isolation-of-inmates-with-hiv.html

One Boy’s Death Moves State to Action to Prevent Others

December 20, 2012
The New York Times
By JIM DWYER

Prompted by the death of a 12-year-old Queens boy in April, New York health officials are poised to make their state the first in the nation to require that hospitals aggressively look for sepsis in patients so treatment can begin sooner. Under the regulations, which are now being drafted, the hospitals will also have to publicly report the results of their efforts.

The action by New York has elated sepsis researchers and experts, including members of a national panel who this month formally recommended that the federal government adopt standards similar to what the state is planning.

Though little known, sepsis, an abnormal and self-destructive immune response to infection or illness, is a leading cause of death in hospitals. It often progresses to severely low blood pressure, shock and organ failure.

Over the last decade, a global consortium of doctors, researchers, hospitals and advocates has developed guidelines on early identification and treatment of sepsis that it says have led to significant drops in mortality rates. But first hints of the problem, like a high pulse rate and fever, often are hard for clinicians to tell apart from routine miseries that go along with the flu or cold.

“First and foremost, they need to suspect sepsis,” Dr. Mitchell M. Levy, a professor at Brown University School of Medicine and a lead author of a paper on the latest sepsis treatment guidelines to be published simultaneously next month in the United States in a journal, Critical Care Medicine, and in Europe in Intensive Care Medicine.

“It’s the most common killer in intensive care units,” Dr. Levy said. “It kills more people than breast cancer, lung cancer and stroke combined.”

If started early enough, the treatment, which includes antibiotics and fluids, can help people escape from the drastic vortex of sepsis, according to findings by researchers working with the Surviving Sepsis Campaign, the global consortium. The tactics led to a reduction of “relative risk mortality by 40 percent,” Dr. Levy said.

Although studies of 30,000 patients show that the guidelines save lives, “the problem is that many hospitals are not adhering to them,” said Dr. Clifford S. Deutschman, director of the sepsis research program at the Perelman School of Medicine at the University of Pennsylvania and the president of the Society of Critical Care Medicine.

About 300 hospitals participate in the study, and the consortium has a goal of having 10,000. “The case is irrefutable: if you take these sepsis measures, and you build a program to help clinicians and hospitals suspect sepsis and identify it early, that will mean more people will survive,” Dr. Levy said.

At a symposium in October, the New York health commissioner, Dr. Nirav R. Shah, said that he would require state hospitals to adopt best practices for early identification and treatment of sepsis. Gov. Andrew M. Cuomo intends to make it a major initiative in 2013, said Josh Vlasto, a spokesman for the governor. “The state is taking unprecedented measures to prevent and effectively treat sepsis in health care facilities across the state and is looking at a wide range of additional measures to better protect patients,” Mr. Vlasto said.

In April, Rory Staunton, a sixth grader from Queens, died of severe septic shock after he became infected, apparently through a cut he suffered while playing basketball. The severity of his illness was not recognized when he was treated in the emergency room at NYU Langone Medical Center. He was sent home with a diagnosis of an ordinary bellyache. Hours later, alarming laboratory results became available that suggested he was critically ill, but neither he nor his family was contacted. For an About New York column in The New York Times, Rory’s parents, Ciaran and Orlaith Staunton, publicly discussed their son’s final days. Their revelations prompted doctors and hospitals across the country to seek new approaches to heading off medical errors.

In addition, Commissioner Shah in New York convened a symposium on sepsis, which included presentations from medical experts and Rory’s parents.

At the end of the meeting, Dr. Shah said that he had listened to all the statistics on the prevalence of the illness, and that one had stuck in his memory: “Twenty-five percent,” he said — the portion of the Staunton family lost to sepsis.

He said he would issue new regulations requiring hospitals to use best practices in identifying and treating sepsis, actions that, he said, he was taking “in honor of Rory Staunton.”

The governor’s spokesman, Mr. Vlasto, said that “the Staunton family’s advocacy has been essential to creating a strong public will for action.”

Dr. Levy said New York’s actions were “bold, pioneering and grounded in good scientific evidence,” adding, “The commissioner has taken the first step even before the federal government.”

Dr. Deutschman said that initiatives like those in New York were needed to overcome resistance among doctors. “You’re talking about a profession that has always prided itself on its autonomy,” he said. “They don’t like to be told that they’re wrong about something.”

The availability of proven therapies should move treatment of sepsis into a new era, experts say, comparing it to how heart attacks were handled not long ago. People arriving in emergency rooms with chest pains were basically put to bed because not much could be done for them, said Dr. Kevin J. Tracey, the president of the Feinstein Institute for Medical Research at North Shore-Long Island Jewish Health System. Dr. Tracey, a neurosurgeon, has made major discoveries about the relationship between the nervous system and the runaway immune responses of sepsis.

If physicians and nurses were trained to watch for sepsis, as they now routinely do for heart attacks, many of its most dire problems could be headed off before they got out of control, he said. The Stauntons have awakened doctors and nurses to the possibility of danger camouflaged as a stomach bug.

“We are with sepsis where we were with heart attack in the early 1980s,” Dr. Tracey said.

“If you don’t think of it as a possibility, this story can happen again and again. This case could change the world.”

    One Boy’s Death Moves State to Action to Prevent Others, NYT, 20.12.2012,
    http://www.nytimes.com/2012/12/21/nyregion/one-boys-death-moves-state-to-action-to-prevent-others.html

Spencer Cox, AIDS Activist, Dies at 44

December 21, 2012
The New York Times
By BRUCE WEBER

Spencer Cox, an AIDS activist whose work with a cadre of lay scientists helped push innovative antiretroviral drugs to market, creating the first effective drug protocols to combat the syndrome, died on Tuesday in Manhattan. He was 44.

His death of AIDS-related causes at the Allen Hospital in Upper Manhattan was confirmed by his brother, Nick.

Mr. Cox was a prominent voice in the fight against AIDS for more than two decades. After three years as a student at Bennington College in Vermont, he moved to New York. By 1989, at age 20, he had joined the AIDS Coalition to Unleash Power, better known as Act Up, the organization devoted to pushing government and private industry, often with demonstrations, sit-ins and other tactics, to dedicate more resources for AIDS treatment and prevention.

In 1992, he was among the Act Up members who formed the Treatment Action Group, known as TAG, to focus on accelerating treatment research.

Along with other TAG colleagues, Mr. Cox schooled himself in the science of AIDS, the workings of drug trials and the government approval process. While still in his 20s he represented people with AIDS in high-level meetings with the Federal Drug Administration and other agencies and private companies.

“You can’t understand how incredibly scary it was for him to sit down at the table of the F.D.A. Anti-Viral Advisory Committee as the ‘P.W.A. representative’ and take on the scientific establishment,” David Barr, an original TAG member, wrote in a Facebook post about Mr. Cox. He added: “It took incredible courage and a whole lot of arrogance. You need to understand how lonely it was to sit at those tables, how much you felt like a complete fraud, yet also right and right to be there.”

In 1995, when antiretroviral drugs known as protease inhibitors began to show promise for treating AIDS patients, Mr. Cox designed a human drug trial for one of the earliest, ritonavir, which was being developed by Abbott Laboratories. The trial created two groups: one would continue taking the medications already prescribed by their doctors and receive a placebo, the other would continue on their medications and also receive ritonavir.

The plan was controversial because no one wanted to receive a placebo, and many AIDS patients and activists believed the best course of action was to approve the drug first and test later. Mr. Cox’s design, however, allowed for both speedy data gathering and a relatively accelerated approval process.

After six months, those on the ritonavir had half the mortality rate of those on the placebo; the drug was approved on Feb. 28, 1996. The next day, a rival drug developed by Merck, indinavir, was approved as well.

“Spencer pushed for data-driven decisions,” Dr. Anthony S. Fauci, director of the National Institute of Allergy and Infectious Diseases, said in an interview on Wednesday. “He wanted the facts and was always very meticulous about getting good data rather than just screaming for getting something approved. It’s a great loss. He was part of a historic group of people.”

Patrick Spencer Cox was born in Atlanta on March 10, 1968. His parents, Jerry and Beverly, were both accountants. At Bennington, he studied theater and literature and aspired to be an actor and playwright. He discovered he was H.I.V. positive shortly after arriving in New York. His mother and brother survive him.

A young Mr. Cox can be seen in the documentary about Act Up, “How to Survive a Plague.” In recent years he wrote on AIDS issues for POZ and other publications, and founded a short-lived organization called the Medius Institute for Gay Men’s Health, which was concerned with issues faced by those growing older with AIDS, among them loneliness, depression and substance abuse.

Mark Harrington, the executive director of TAG, said Mr. Cox himself struggled with an addiction to methamphetamines. Some months ago, he said, a despairing Mr. Cox had apparently stopped taking his medication.

“He saved the lives of millions, but he couldn’t save his own,” Mr. Harrington said.

    Spencer Cox, AIDS Activist, Dies at 44, NYT, 21.12.2012,
    http://www.nytimes.com/2012/12/21/nyregion/spencer-cox-aids-activist-dies-at-44.html

Adam Lanza,

Asperger’s and a Misleading Connection With Violence

December 18, 2012
2:10 pm
The New York Times
By MARGARET SULLIVAN

1. Did Adam Lanza, who authorities have identified as the gunman in Newtown, Conn., ever receive a diagnosis of Asperger's syndrome?
2. If so, would that be relevant?
3. And has The Times been scrupulously responsible in the way it has reported on this aspect of Friday's massacre at the Sandy Hook Elementary School?

In brief, here are my conclusions, based on my own reading and a number of interviews and conversations this week.

1. Possibly.
2. It would not matter to the killing; it would help in understanding the personality and experiences of the gunman.
3. The Times's early reporting and presentation of the information was well-intentioned but flawed. (It began to remedy those flaws in a blog post Monday afternoon but had not yet done so in print on Tuesday.)

This subject is important to many of those whose lives are affected by Asperger's or other forms of Autism Spectrum Disorder. They are troubled and angered by how the topic has been treated in The Times and other news organizations over the past several days.

Joe McGinniss, the well-known author and the father of a son who has Asperger's, is among the many who wrote to me.

"The suggestion that Asperger's might be a clue to why this happened is offensive to me," he said in a telephone interview Tuesday. "It's misleading to suggest that quiet people who don't pick up on social cues are more likely to become killers."

Dr. Ami Klin, an expert on autism at the Emory University School of Medicine in Atlanta, said that any tie between the Newtown shootings and Asperger's or autism "is an enormous disservice" to those whose lives are affected by these developmental disorders, which should not be confused with mental illness.

"Any human condition can coexist with violence," he said, but no correlation should be drawn.

In fact, he said, those with Asperger's "are much more likely to be victims rather than victimizers."

"This is not about autism," Dr. Klin said. "It's about mental illness and guns that those with mental illness should have no access to."

The Times was understated in its reporting on this subject and, if you were a casual reader, the reference might not have jumped out. But for those close to the situation - often because they are parents of autistic children - it certainly did.

This was the initial reference, in a Saturday print edition profile of Mr. Lanza, written on deadline:

Matt Baier, now a junior at the University of Connecticut, and other high school classmates recalled how deeply uncomfortable Mr. Lanza was in social situations.

Several said in separate interviews that it was their understanding that he had a developmental disorder. They said they had been told that the disorder was Asperger's syndrome, which is considered a high functioning form of autism.

"It's not like people picked on him for it," Mr. Baier said. "From what I saw, people just let him be, and that was that."

Law enforcement officials said Friday that they were closely examining whether Mr. Lanza had such a disorder.

I interviewed David Halbfinger, a reporter who was the article's author. He told me that he did not write that reference to Asperger's, but approved it after it had been inserted by an editor. He also said that the idea behind this first-day story was to find out and communicate as much as possible about Mr. Lanza.

"The fear that's being expressed is that there's an implied cause, but we didn't say they were investigating it as a cause," Mr. Halbfinger said. "On the first day, law enforcement is investigating everything. To impute cause and effect is to make a giant leap that we didn't do."

The Metro editor, Carolyn Ryan, responded in an e-mail:

We were told Adam Lanza had Asperger's from so many people who knew him that it would have been irresponsible to withhold that from readers. However, we were very careful with the language, saying that people who knew him understood he had a developmental disorder and had been told it was Asperger's. I wanted to make sure readers understood where the information was coming from, and that law enforcement had not confirmed this or officially described him as having Asperger's. The "closely examining" language was not intended to suggest that Asperger's accounted for the motive or cause, but that law enforcement officials had been told he had Asperger's and were trying to understand his condition and his behavior.

Critics, though, say that if you want to understand how such a statement might be taken, try this hypothetical substitution: "Law enforcement officials said they were closely examining whether Mr. Lanza is gay." There is, for a reasonable person, the suggestion of cause and effect. It is very unlikely that that sentence would have appeared in The Times without further explanation.

References to Asperger's have now appeared in several Times articles, all based on anonymous sources or on named sources who were reporting what they had heard from someone else. It has been, in short, repeated conjecture by those who don't know. On Monday, The Associated Press reported that a divorce mediator, who was named, was told by the Lanzas that their son had Asperger's, and The Times began reporting that on The Lede blog. The blog post did a great deal to explain the issue clearly and responsibly.

If there were solid sourcing last week of the Asperger's diagnosis, the issue of its relevance could have been handled in a clarifying follow-up sentence -- for example: "Autism and Asperger's are developmental disorders, not mental illnesses; and there is no connection between them and violent behavior."

Mr. Halbfinger protested when I suggested the idea of such an explanation, particularly in a first-day story. "To me, it seems kind of ridiculous; that's the journalistic equivalent of a nanny state," he said. He added, though, that as a parent himself, he does understand how parents feel about this subject. And he sees that there may be a "knowledge deficit" - people may not know very much about autism and Asperger's.

The story by The A.P. did have such a sentence as its last paragraph.

I think that is helpful and necessary. Cause and effect had been suggested; and something should have been done - and still can be -- to clear up that troubling misconception. And while this may be of greatest concern to those who have a family member with Asperger's or autism, it's broader than that. These are questions of clarity and accuracy -- and those affect everyone. But more optimistically, there is now an opportunity to do some educating. I hope that happens.

    Adam Lanza, Asperger’s and a Misleading Connection With Violence, NYT, 18.12.2012,
    http://publiceditor.blogs.nytimes.com/2012/12/18/adam-lanza-aspergers-and-a-misleading-connection-with-violence/

Don’t Blame Autism for Newtown

December 17, 2012
The New York Times
By PRISCILLA GILMAN

LAST Wednesday night I listened to Andrew Solomon, the author of the extraordinary new book “Far From the Tree,” talk about the frequency of filicide in families affected by autism. Two days later, I watched the news media attempt to explain a matricide and a horrific mass murder in terms of the killer’s supposed autism.

It began as insinuation, but quickly flowered into outright declaration. Words used to describe the killer, Adam Lanza, began with “odd,” “aloof” and “a loner,” shaded into “lacked empathy,” and finally slipped into “on the autism spectrum” and suffering from “a mental illness like Asperger’s.” By Sunday, it had snowballed into a veritable storm of accusation and stigmatization.

Whether reporters were directly attributing Mr. Lanza’s shooting rampage to his autism or merely shoddily lumping together very different conditions, the false and harmful messages were abundant.

Let me clear up a few misconceptions. For one thing, Asperger’s and autism are not forms of mental illness; they are neurodevelopmental disorders or disabilities. Autism is a lifelong condition that manifests before the age of 3; most mental illnesses do not appear until the teen or young adult years. Medications rarely work to curb the symptoms of autism, but they can be indispensable in treating mental illness like obsessive-compulsive disorder, schizophrenia and bipolar disorder.

Underlying much of this misreporting is the pernicious and outdated stereotype that people with autism lack empathy. Children with autism may have trouble understanding the motivations and nonverbal cues of others, be socially naïve and have difficulty expressing their emotions in words, but they are typically more truthful and less manipulative than neurotypical children and are often people of great integrity. They can also have a strong desire to connect with others and they can be intensely empathetic — they just attempt those connections and express that empathy in unconventional ways. My child with autism, in fact, is the most empathetic and honorable of my three wonderful children.

Additionally, a psychopathic, sociopathic or homicidal tendency must be separated out from both autism and from mental illness more generally. While autistic children can sometimes be aggressive, this is usually because of their frustration at being unable to express themselves verbally, or their extreme sensory sensitivities. Moreover, the form their aggression takes is typically harmful only to themselves. In the very rare cases where their aggression is externally directed, it does not take the form of systematic, meticulously planned, intentional acts of violence against a community.

And if study after study has definitively established that a person with autism is no more likely to be violent or engage in criminal behavior than a neurotypical person, it is just as clear that autistic people are far more likely to be the victims of bullying and emotional and physical abuse by parents and caregivers than other children. So there is a sad irony in making autism the agent or the cause rather than regarding it as the target of violence.

In the wake of coverage like this, I worry, in line with concerns raised by the author Susan Cain in her groundbreaking book on introverts, “Quiet”: will shy, socially inhibited students be looked at with increasing suspicion as potentially dangerous? Will a quiet, reserved, thoughtful child be pegged as having antisocial personality disorder? Will children with autism or mental illness be shunned even more than they already are?

This country needs to develop a better understanding of the complexities of various conditions and respect for the profound individuality of its children. We need to emphasize that being introverted doesn’t mean one has a developmental disorder, that a developmental disorder is not the same thing as a mental illness, and that most mental illnesses do not increase a person’s tendency toward outward-directed violence.

We should encourage greater compassion for all parents facing an extreme challenge, whether they have children with autism or mental illness or have lost their children to acts of horrific violence (and that includes the parents of killers).

Consider this, posted on Facebook yesterday by a friend of mine from high school who has an 8-year-old, nonverbal child with severe autism:

“Today Timmy was having a first class melt down in Barnes and Nobles and he rarely melts down like this. He was throwing his boots, rolling on the floor, screaming and sobbing. Everyone was staring as I tried to pick him up and [his brother Xander] scrambled to pick up his boots. I was worried people were looking at him and wondering if he would be a killer when he grows up because people on the news keep saying this Adam Lanza might have some spectrum diagnosis ... My son is the kindest soul you could ever meet. Yesterday, a stranger looked at Timmy and said he could see in my son’s eyes and smile that he was a kind soul; I am thankful that he saw that.”

Rather than averting his eyes or staring, this stranger took the time to look, to notice and to share his appreciation of a child’s soul with his mother. The quality of that attention is what needs to be cultivated more generally in this country.

It could take the form of our taking the time to look at, learn about and celebrate each of the tiny victims of this terrible shooting. It could manifest itself in attempts to dismantle harmful, obfuscating stereotypes or to clarify and hone our understanding of each distinct condition, while remembering that no category can ever explain an individual. Let’s try to look in the eyes of every child we encounter, treat, teach or parent, whatever their diagnosis or label, and recognize each child’s uniqueness, each child’s inimitable soul.

Priscilla Gilman is the author of “The Anti-Romantic Child:

A Memoir of Unexpected Joy.”

    Don’t Blame Autism for Newtown, NYT, 17.12.2012,
    http://www.nytimes.com/2012/12/18/opinion/dont-blame-autism-for-newtown.html

Dr. William F. House,

Inventor of Pioneering Ear-Implant Device,

Dies at 89

December 15, 2012
By DOUGLAS MARTIN

Dr. William F. House, a medical researcher who braved skepticism to invent the cochlear implant, an electronic device considered to be the first to restore a human sense, died on Dec. 7 at his home in Aurora, Ore. He was 89.

The cause was metastatic melanoma, his daughter, Karen House, said.

Dr. House pushed against conventional thinking throughout his career. Over the objections of some, he introduced the surgical microscope to ear surgery. Tackling a form of vertigo that doctors had believed was psychosomatic, he developed a surgical procedure that enabled the first American in space to travel to the moon. Peering at the bones of the inner ear, he found enrapturing beauty.

Even after his ear-implant device had largely been supplanted by more sophisticated, and more expensive, devices, Dr. House remained convinced of his own version’s utility and advocated that it be used to help the world’s poor.

Today, more than 200,000 people in the world have inner-ear implants, a third of them in the United States. A majority of young deaf children receive them, and most people with the implants learn to understand speech with no visual help.

Hearing aids amplify sound to help the hearing-impaired. But many deaf people cannot hear at all because sound cannot be transmitted to their brains, however much it is amplified. This is because the delicate hair cells that line the cochlea, the liquid-filled spiral cavity of the inner ear, are damaged. When healthy, these hairs — more than 15,000 altogether — translate mechanical vibrations produced by sound into electrical signals and deliver them to the auditory nerve.

Dr. House’s cochlear implant electronically translated sound into mechanical vibrations. His initial device, implanted in 1961, was eventually rejected by the body. But after refining its materials, he created a long-lasting version and implanted it in 1969.

More than a decade would pass before the Food and Drug Administration approved the cochlear implant, but when it did, in 1984, Mark Novitch, the agency’s deputy commissioner, said, “For the first time a device can, to a degree, replace an organ of the human senses.”

One of Dr. House’s early implant patients, from an experimental trial, wrote to him in 1981 saying, “I no longer live in a world of soundless movement and voiceless faces.”

But for 27 years, Dr. House had faced stern opposition while he was developing the device. Doctors and scientists said it would not work, or not work very well, calling it a cruel hoax on people desperate to hear. Some said he was motivated by the prospect of financial gain. Some criticized him for experimenting on human subjects. Some advocates for the deaf said the device deprived its users of the dignity of their deafness without fully integrating them into the hearing world.

Even when the American Academy of Ophthalmology and Otolaryngology endorsed implants in 1977, it specifically denounced Dr. House’s version. It recommended more complicated versions, which were then under development and later became the standard.

But his work is broadly viewed as having sped the development of implants and enlarged understanding of the inner ear. Jack Urban, an aerospace engineer, helped develop the surgical microscope as well as mechanical and electronic aspects of the House implant.

Karl White, founding director of the National Center for Hearing Assessment and Management, said in an interview that it would have taken a decade longer to invent the cochlear implant without Dr. House’s contributions. He called him “a giant in the field.”

After embracing the use of the microscope in ear surgery, Dr. House developed procedures — radical for their time — for removing tumors from the back portion of the brain without causing facial paralysis; they cut the death rate from the surgery to less than 1 percent from 40 percent.

He also developed the first surgical treatment for Meniere’s disease, which involves debilitating vertigo and had been viewed as a psychosomatic condition. His procedure cured the astronaut Alan B. Shepard Jr. of the disease, clearing him to command the Apollo 14 mission to the moon in 1971. In 1961, Shepard had become the first American launched into space.

In presenting Dr. House with an award in 1995, the American Academy of Otolaryngology-Head and Neck Surgery Foundation said, “He has developed more new concepts in otology than almost any other single person in history.”

William Fouts House was born in Kansas City, Mo., on Dec. 1, 1923. When he was 3 his family moved to Whittier, Calif., where he grew up on a ranch. He did pre-dental studies at Whittier College and the University of Southern California, and earned a doctorate in dentistry at the University of California, Berkeley. After serving his required two years in the Navy — and filling the requisite 300 cavities a month — he went back to U.S.C. to pursue an interest in oral surgery. He earned his medical degree in 1953. After a residency at Los Angeles County Hospital, he joined the Los Angeles Foundation of Otology, a nonprofit research institution founded by his brother, Howard. Today it is called the House Research Institute.

Many at the time thought ear surgery was a declining field because of the effectiveness of antibiotics in dealing with ear maladies. But Dr. House saw antibiotics as enabling more sophisticated surgery by diminishing the threat of infection.

When his brother returned from West Germany with a surgical microscope, Dr. House saw its potential and adopted it for ear surgery; he is credited with introducing the device to the field. But again there was resistance. As Dr. House wrote in his memoir, “The Struggles of a Medical Innovator: Cochlear Implants and Other Ear Surgeries” (2011), some eye doctors initially criticized his use of a microscope in surgery as reckless and unnecessary for a surgeon with good eyesight.

Dr. House also used the microscope as a research tool. One night a week he would take one to a morgue for use in dissecting ears to gain insights that might lead to new surgical procedures. His initial reaction, he said, was how beautiful the bones seemed; he compared the experience to one’s first view of the Grand Canyon. His wife, the former June Stendhal, a nurse, often helped.

She died in 2008 after 64 years of marriage. In addition to his daughter, Dr. House is survived by a son, David; three grandchildren; and two great-grandchildren.

The implant Dr. House invented used a single channel to deliver information to the hearing system, as opposed to the multiple channels of competing models. The 3M Company, the original licensee of the House implant, sold its rights to another company, the Cochlear Corporation, in 1989. Cochlear later abandoned his design in favor of the multichannel version.

But Dr. House continued to fight for his single-electrode approach, saying it was far cheaper, and offered voluminous material as evidence of its efficacy. He had hoped to resume production of it and make it available to the poor around the world.

Neither the institute nor Dr. House made any money on the implant. He never sought a patent on any of his inventions, he said, because he did not want to restrict other researchers. A nephew, Dr. John House, the current president of the House institute, said his uncle had made the deal to license it to the 3M Company not for profit but simply to get it built by a reputable manufacturer.

Reflecting on his business decisions in his memoir, Dr. House acknowledged, “I might be a little richer today.”

    Dr. William F. House, Inventor of Pioneering Ear-Implant Device, Dies at 89, NYT, 15.12.2012,   
    http://www.nytimes.com/2012/12/16/health/dr-william-f-house-inventor-of-cochlear-implant-dies.html

When the Doctor Is Not Needed

December 15, 2012
The New York Times

There is already a shortage of doctors in many parts of the United States. The expansion of health care coverage to millions of uninsured Americans under the Affordable Care Act will make that shortage even worse. Expanding medical schools and residency programs could help in the long run.

But a sensible solution to this crisis — particularly to address the short supply of primary care doctors — is to rely much more on nurse practitioners, physician assistants, pharmacists, community members and even the patients themselves to do many of the routine tasks traditionally reserved for doctors.

There is plenty of evidence that well-trained health workers can provide routine service that is every bit as good or even better than what patients would receive from a doctor. And because they are paid less than the doctors, they can save the patient and the health care system money.

Here are some initiatives that use non-doctors to provide medical care, with very promising results:

PHARMACISTS A report by the chief pharmacist of the United States Public Health Service a year ago argued persuasively that pharmacists are “remarkably underutilized” given their education, training and closeness to the community. The chief exceptions are pharmacists who work in federal agencies like the Department of Veterans Affairs, the Department of Defense and the Indian Health Service, where they deliver a lot of health care with minimal supervision. After an initial diagnosis is made by a doctor, federal pharmacists manage the care of patients when medications are the primary treatment, as is very often the case.

They can start, stop or adjust medications, order and interpret laboratory tests, and coordinate follow-up care. But various state and federal laws make it hard for pharmacists in private practice to perform such services without a doctor’s supervision, even though patients often like dealing with a pharmacist, especially for routine matters.

NURSE PRACTITIONERS In 2012, 18 states and the District of Columbia allowed nurse practitioners, who typically have master’s degrees and more advanced training than registered nurses, to diagnose illnesses and treat patients, and to prescribe medications without a doctor’s involvement.

Substantial evidence shows that nurse practitioners are as capable of providing primary care as doctors and are generally more sensitive to what a patient wants and needs.

In a report in October 2010, the Institute of Medicine, a unit of the National Academy of Sciences, called for the removal of legal barriers that hinder nurse practitioners from providing medical care for which they have been trained. It also urged that more nurses be given higher levels of training, and that better data be collected on the number of nurse practitioners and other advance practice nurses in the country and the roles they are performing. Tens of thousands will probably be needed, if not more.

Mary Mundinger, dean emeritus of Columbia University School of Nursing, believes highly trained nurses are actually better at primary care than doctors are, and they have experience working in the community, in nursing homes, patients’ homes and schools, and are better at disease prevention and helping patients follow medical regimens.

RETAIL CLINICS Hundreds of clinics, mostly staffed by nurse practitioners, have been opened in drugstores and big retail stores around the country, putting basic care within easy reach of tens of millions of people. The CVS drugstore chain has opened 640 retail clinics, and Walgreens has more than 350. The clinics treat common conditions like ear infections, administer vaccines and perform simple laboratory tests.

A study by the RAND Corporation of CVS retail clinics in Minnesota found that in many cases they delivered better and much cheaper care than doctor’s offices, urgent care centers and emergency rooms.

TRUSTED COMMUNITY AIDES One novel approach trains local community members who have experience caring for others to deliver routine services for patients at home. Two pediatric Medicaid centers in Houston and Harrisonburg, Va., have tested this concept to see if it can reduce the cost of home care and avoid unnecessary admissions to a clinic or hospital.

The aides are trained to consult with patients over the phone by asking questions devised by experts. A supervising nurse makes the final decisions on the care a patient requires. The community aide may visit the patient, provide care in the home and send photos or videos back to the supervising nurse by cellphone.

The aides are typically paid about $25,000 a year, according to an article in Health Affairs by the pilot study’s leaders. The study concluded that the program would have averted 62 percent of the visits to a Houston clinic and 74 percent of the emergency room visits in Harrisonburg.

The aides cost $17 per call or visit, compared with Medicaid payment rates of $200 for a clinic visit in Houston and $175 for an emergency room in Harrisonburg.

SELF-CARE AT HOME A program run by the Vanderbilt University Medical Center and its affiliates lets patients with hypertension, diabetes and congestive heart failure decide whether they want a care coordinator to visit them at home or prefer to measure their own blood pressure, pulse or glucose levels and enter the results online, where the data can be immediately reviewed by their primary care doctor. The patient could consult by phone or e-mail with a nurse about his insulin dosage, but there would be no need for a costly visit to a doctor.

Taking this idea a step further, a hospital in Sweden, prodded by a kidney dialysis patient who thought he could do his own hemodialysis better than the nursing staff, allowed him to do so and then teach other patients, according to the Institute for Healthcare Improvement, a nonprofit organization in Cambridge, Mass. Now most dialysis at that hospital is administered by the patients themselves. Costs have been cut in half, and complications and infections have been greatly reduced.

HEALTH REFORM LAW The Affordable Care Act contains many provisions that should help relieve the shortage of primary care providers, both doctors and other health care professionals.

It provides money to increase the number of medical residents, nurse practitioners and physician assistants trained in primary care, yielding more than 1,700 new primary care providers by 2015. It offers big bonuses for up to five hospitals to train advanced practice nurses and has demonstration projects to promote primary care coordination of complex illnesses, incorporating pharmacists and social workers in some cases. And it offers financial incentives for doctors to practice primary care — like family medicine, internal medicine and pediatrics — as opposed to specialties.

These are all moves in the right direction, but they will need to be followed by even bigger steps and protected from budget cuts in efforts to reduce the deficit.

•

This is part of a continuing examination of ways to cut the costs of medical care

while improving quality.

    When the Doctor Is Not Needed, NYT, 15.12.2012,
    http://www.nytimes.com/2012/12/16/opinion/sunday/when-the-doctor-is-not-needed.html

Looking for America

December 14, 2012
The New York Times
By GAIL COLLINS

“I’m sorry,” said Representative Carolyn McCarthy, her voice breaking. “I’m having a really tough time.”

She’s the former nurse from Long Island who ran for Congress in 1996 as a crusader against gun violence after her husband and son were victims of a mass shooting on a commuter train. On Friday morning, McCarthy said, she began her day by giving an interview to a journalist who was writing a general story about “how victims feel when a tragedy happens.”

“And then 15 minutes later, a tragedy happens.”

McCarthy, whose husband died and son was critically wounded, is by now a practiced hand at speaking out when a deranged man with a lot of firepower runs amok. But the slaughter of 20 small children and seven adults in Connecticut left her choked up and speechless.

“I just don’t know what this country’s coming to. I don’t know who we are any more,” she said.

President Obama was overwhelmed as well, when he attempted to comfort the nation. It was his third such address in the wake of a soul-wrenching mass shooting. “They had their entire lives ahead of them,” he said, and he had trouble saying anything more.

It was, of course, a tragedy. Yet tragedies happen all the time. Terrible storms strike. Cars crash. Random violence occurs. As long as we’re human, we’ll never be invulnerable.

But when a gunman takes out little children in a bucolic Connecticut suburb, three days after a gunman shot up a mall in Oregon, in the same year as fatal mass shootings in Minneapolis, in Tulsa, in a Sikh temple in Wisconsin, in a theater in Colorado, a coffee bar in Seattle and a college in California — then we’re doing this to ourselves.

We know the story. The shooter is a man, usually a young man, often with a history of mental illness. Sometimes in a rage over a lost job, sometimes just completely unhinged. In the wake of the Newtown shootings, the air was full of experts discussing the importance of psychological counseling. “We need to look at what drives a crazy person to do these kind of actions,” said Representative Cathy McMorris Rodgers of Washington, one of the highest-ranking Republicans in the House.

Every country has a sizable contingent of mentally ill citizens. We’re the one that gives them the technological power to play god.

This is all about guns — access to guns and the ever-increasing firepower of guns. Over the past few years we’ve seen one shooting after another in which the killer was wielding weapons holding 30, 50, 100 bullets. I’m tired of hearing fellow citizens argue that you need that kind of firepower because it’s a pain to reload when you’re shooting clay pigeons. Or that the founding fathers specifically wanted to make sure Americans retained their right to carry rifles capable of mowing down dozens of people in a couple of minutes.

Recently the Michigan House of Representatives passed and sent to the governor a bill that, among other things, makes it easy for people to carry concealed weapons in schools. After the massacre at Sandy Hook Elementary School Friday, a spokesman for House Speaker Jase Bolger said that it might have meant “the difference between life and death for many innocent bystanders.” This is a popular theory of civic self-defense that discounts endless evidence that in a sudden crisis, civilians with guns either fail to respond or respond by firing at the wrong target.

It was perhaps the second-most awful remark on one of the worst days in American history, coming up behind Mike Huckabee’s asking that since prayer is banned from public schools, “should we be so surprised that schools would become a place of carnage?”

We will undoubtedly have arguments about whether tougher regulation on gun sales or extra bullet capacity would have made a difference in Connecticut. In a way it doesn’t matter. America needs to tackle gun violence because we need to redefine who we are. We have come to regard ourselves — and the world has come to regard us — as a country that’s so gun happy that the right to traffic freely in the most obscene quantities of weapons is regarded as far more precious than an American’s right to health care or a good education.

We have to make ourselves better. Otherwise, the story from Connecticut is too unspeakable to bear.

Nearly two years ago, after Representative Gabrielle Giffords was shot in the head in a mass shooting in Arizona, the White House sent up signals that Obama was preparing to do something. “I wouldn’t rule out that at some point the president talks about the issues surrounding gun violence,” said his press secretary at the time, Robert Gibbs.

On Friday, the president said: “We’re going to have to come together and take meaningful action to prevent more tragedies like this, regardless of the politics.”

Time passes. And here we are.

    Looking for America, NYT, 14.12.2012,
    http://www.nytimes.com/2012/12/15/opinion/collins-looking-for-america.html

A Tragedy of Silence

December 14, 2012
The New York Times
By CHARLES M. BLOW

Another day, another mass shooting in America. When, and how, will this end? In fact, will it ever end?

On Friday, a gunman identified as 20-year-old Adam Lanza, killed 26 people, including 20 children between the ages 5 and 10, at a Connecticut elementary school. He is reported to have also killed his mother, a kindergarten teacher at the school, and committed suicide.

This comes after Jacob Roberts, a 22-year-old man, armed with a semiautomatic AR-15, carrying extra magazines and wearing a hockey mask walked into a shopping mall in Oregon filled with 10,000 people and began shooting. He killed two people, and then took his own life.

A visibly shaken President Obama said after the shooting at the school, “As a country, we have been through this too many times.” He continued, “We’re going to have to come together and take meaningful action to prevent tragedies like this, regardless of the politics.”

I agree. I only hope that in coming days we flesh out what “meaningful action” means in policy terms. If not now, when? After the next shooting?

How many more deaths and mass shootings will it take for Washington to begin to lead the country in a deeper conversation about sensible gun controls? What will it take for our politicians to take firm and principled positions on gun policies and stand up to the gun lobby in this country? Surely this is a moment that calls all of us to reckoning.

In the vacuum of strong advocacy, too many Americans respond to tragedies like these in undesirable ways.

According to an August report from Bloomberg News, “background checks for gun purchases spiked 41 percent in Colorado after 12 people were killed inside a suburban Denver movie theater, according to state data.”

And while gun control advocates grow more quiet, the gun lobby grows stronger and louder. According to a report issued Friday by the Center for Responsive Politics’ OpenSecrets.org, “For gun rights groups, 2012 was the most active election cycle since 2000. They contributed a total of $3 million to candidates, 96 percent of them Republicans.” By contrast, the group pointed out that “gun control groups contributed less in this election cycle than in any cycle as far back as OpenSecrets has data (1990).”

According to the Web site ThinkProgress, Larry Pratt, the executive director of Gun Owners of America, wasted no time trying to pin Friday’s shooting on gun control advocates. ThinkProgress quoted a statement of his that read, in part: “Gun control supporters have the blood of little children on their hands. Federal and state laws combined to ensure that no teacher, no administrator, no adult had a gun at the Newtown school where the children were murdered. This tragedy underscores the urgency of getting rid of gun bans in school zones.”

Outrageous.

This is a sad, sad state of affairs.

No wonder public opinion is shifting away from gun control. Gallup found that the number of Americans who believe that these laws should be stricter fell more than 40 percent from 1991 to 2011.

Gallup also found, for the first time last year, “greater opposition to than support for a ban on semiautomatic guns or assault rifles, 53 percent to 43 percent. In the initial asking of this question in 1996, the numbers were nearly reversed, with 57 percent for and 42 percent against an assault rifle ban.”

Both the Oregon and Connecticut shooters had semiautomatic weapons.

And screening prospective gun buyers for criminal records and for mental illness is helpful, but it is not enough and isn’t always done.

And mass shooters don’t necessarily have criminal records and seem to have no problem obtaining legal guns.

An analysis published earlier this year by Mother Jones of the 61 mass shootings in America over the last 30 years found that: “Of the 139 guns possessed by the killers, more than three-quarters were obtained legally.”

(The Oregon shooter stole his gun. The Connecticut shooter’s guns are reported to have been legally purchased in his mother’s name.)

We must reinstate the assault weapons ban. Military-style guns belong in the hands of military personnel, and maybe police officers, but not in the hands of civilians.

A vast majority of mass shootings in the last three decades involved assault weapons and semiautomatic handguns, according to Mother Jones.

Even if you believe, as most Americans do, that the Second Amendment grants Americans the right to bear arms, one must also acknowledge the right of other Americans to not bear arms and be safe.

Where are the voices for those who choose not to — or are not old enough to — own guns? Are the gunless to have no advocate? Will our politicians forever cower before the gun lobby?

    A Tragedy of Silence, NYT, 14.12.2012,
    http://www.nytimes.com/2012/12/15/opinion/blow-a-tragedy-of-silence.html

The 2,000-Year-Old Wonder Drug

December 11, 2012
The New York Times
By DAVID B. AGUS

Los Angeles

THE inexorable rise in health care spending, as all of us know, is a problem. But what’s truly infuriating, as we watch America’s medical bill soar, is that our conversation has focused almost exclusively on how to pay for that care, not on reducing our need for it. In the endless debate about “health care reform,” few have zeroed in on the practical actions we should be taking now to make Americans healthier.

An exception is Mayor Michael R. Bloomberg of New York, who is setting new standards that we would do well to adopt as a nation. In the last several years, he’s changed the city’s health code to mandate restrictions on sodas and trans fats — products that, when consumed over the long term, harm people. These new rules will undoubtedly improve New Yorkers’ health in years to come.

Such bold moves prompt a provocative question: when does regulating a person’s habits in the name of good health become our moral and social duty? The answer, I suggest, is a two-parter: first, when the scientific data clearly and overwhelmingly demonstrate that one behavior or another can substantially reduce — or, conversely, raise — a person’s risk of disease; and second, when all of us are stuck paying for one another’s medical bills (which is what we do now, by way of Medicare, Medicaid and other taxpayer-financed health care programs).

In such cases, encouraging a healthy behavior, or discouraging an unhealthy one, ought to be a matter of public policy — which is why, for instance, we insist on vaccinating children for the measles, mumps, rubella and polio; we know these preventive strategies save lives.

Under that rationale, then, why not make it public policy to encourage middle-aged people to use aspirin?

Developed in 1897 by the German chemist Felix Hoffmann, aspirin, or acetylsalicylic acid, has long proved its value as an analgesic. Two millenniums before that, Hippocrates, the father of modern medicine, used its active ingredient — which he extracted from the bark and leaves of the willow tree — to help alleviate pain and fevers.

Since then, we’ve gained insight into both the biological mechanism and the effects of this chemical compound. Many high-quality research studies have confirmed that the use of aspirin substantially reduces the risk of cardiovascular disease. Indeed, the evidence for this is so abundant and clear that, in 2009, the United States Preventive Services Task Force strongly recommended that men ages 45 to 79, and women ages 55 to 79, take a low-dose aspirin pill daily, with the exception for those who are already at higher risk for gastrointestinal bleeding or who have certain other health issues. (As an anticoagulant, aspirin can increase the risk of bleeding — a serious and potentially deadly issue for some people.)

New reports about aspirin’s benefits in cancer prevention are just as convincing. In 2011, British researchers, analyzing data from some 25,000 patients in eight long-term studies, found that a small, 75-milligram dose of aspirin taken daily for at least five years reduced the risk of dying from common cancers by 21 percent.

In March, The Lancet published two more papers bolstering the case for this ancient drug. The first, reviewing five long-term studies involving more than 17,000 patients, found that a daily low-dose aspirin lowered the risk of getting adenocarcinomas — common malignant cancers that develop in the lungs, colon and prostate — by an average of 46 percent.

In the second, researchers at Oxford and other centers compared patients who took aspirin with those who didn’t in 51 different studies. Investigators found that the risk of dying from cancer was 37 percent lower among those taking aspirin for at least five years. In a subsection of the study group, three years of daily aspirin use reduced the risk of developing cancer by almost 25 percent when compared with the aspirin-free control group.

The data are screaming out to us. Aspirin, one of the oldest remedies on the planet, helps prevent heart disease through what is likely to be a variety of mechanisms, including keeping blood clots from forming. And experts believe it helps prevent cancer, in part, by dampening an immune response called inflammation.

So the question remains: given the evidence we have, why is it merely voluntary for physicians to inform their patients about a health care intervention that could not only help them, but also save untold billions in taxpayer dollars each year?

For some men over the age of 45 and women over 55, the risks of taking aspirin outweigh any benefits — and patients should talk with their doctors before taking any medication, including something as familiar as aspirin.

But with such caveats in place, it still ought to be possible to encourage aspirin’s use in those for whom the potential benefits would be obvious and the risks minimal. Just as we discourage smoking through advertising campaigns, for example, shouldn’t we suggest that middle-aged Americans speak to their doctors about aspirin? Perhaps pharmacists or even health insurance companies should be enlisted to help spread the word about this disease-prevention drug?

The right policy will have to be hammered out, of course. But if we’re going to address the country’s sky-high medical bill, we’re going to have to address the need for Americans to be active in protecting their own health.

Everyone may want the right to use tobacco products and engage in other behaviors that are unequivocally linked with disease — or have the right not to wear a seat belt and refrain from other actions that may protect their well-being. But, if so, should society have the obligation to cover the costs of the consequences?

As the former Supreme Court justice Potter Stewart once said, “There is a big difference between what we have the right to do and what is right to do.” Health care reform should, at long last, focus on the latter.

David B. Agus is a professor of medicine and engineering

at the University of Southern California and the author of “The End of Illness.”

    The 2,000-Year-Old Wonder Drug, NYT, 11.12.2012,
    http://www.nytimes.com/2012/12/12/opinion/the-2000-year-old-wonder-drug.html

States Cut Antismoking Outlays

Despite Record Tobacco Revenue

December 6, 2012
The New York Times
By SABRINA TAVERNISE

Faced with tight budgets, states have spent less on tobacco prevention over the past two years than in any period since the national tobacco settlement in 1998, despite record high revenues from the settlement and tobacco taxes, according to a report to be released on Thursday.

States are on track to collect a record $25.7 billion in tobacco taxes and settlement money in the current fiscal year, but they are set to spend less than 2 percent of that on prevention, according to the report, by the Campaign for Tobacco-Free Kids, which compiles the revenue data annually. The figures come from state appropriations for the fiscal year ending in June.

The settlement awarded states an estimated $246 billion over its first 25 years. It gave states complete discretion over the money, and many use it for programs unrelated to tobacco or to plug budget holes. Public health experts say it lacks a mechanism for ensuring that some portion of the money is set aside for tobacco prevention and cessation programs.

“There weren’t even gums, let alone teeth,” Timothy McAfee, the director of the Office on Smoking and Health at the Centers for Disease Control and Prevention, said, referring to the allocation of funds for tobacco prevention and cessation in the terms of the settlement.

Spending on tobacco prevention peaked in 2002 at $749 million, 63 percent above the level this year. After six years of declines, spending ticked up again in 2008, only to fall by 36 percent during the recession, the report said.

Tobacco use is the No. 1 cause of preventable death in the United States, killing more than 400,000 Americans every year, according to the C.D.C.

The report did not count federal money for smoking prevention, which Vince Willmore, the vice president for communications at the Campaign for Tobacco-Free Kids, estimated to be about $522 million for the past four fiscal years. The sum — about $130 million a year — was not enough to bring spending back to earlier levels.

The $500 million a year that states spend on tobacco prevention is a tiny fraction of the $8 billion a year that tobacco companies spend to market their products, according to a Federal Trade Commission report in September.

Nationally, 19 percent of adults smoke, down from over 40 percent in 1965. But rates remain high for less-educated Americans. Twenty-seven percent of Americans with only a high school diploma smoke, compared with just 8 percent of those with a college degree or higher, according to C.D.C. data from 2010. The highest rate — 34 percent — was among black men who did not graduate from high school.

“Smoking used to be the rich man’s habit,” said Danny McGoldrick, the vice president for research at the Campaign for Tobacco-Free Kids, “and now it’s decidedly a poor person’s behavior.”

Aggressive antismoking programs are the main tools that cities and states have to reach the demographic groups in which smoking rates are the highest, making money to finance them even more critical, Mr. McGoldrick said.

The decline in spending comes amid growing certainty among public health officials that antismoking programs, like help lines and counseling, actually work. California went from having a smoking rate above the national average 20 years ago to having the second-lowest rate in the country after modest but consistent spending on programs that help people quit and prevent children from starting, Dr. McAfee said.

An analysis by Washington State, cited in the report, found that it saved $5 in tobacco-related hospitalization costs for every $1 spent during the first 10 years of its program.

Budget cuts have eviscerated some of the most effective tobacco prevention programs, the report said. This year, state financing for North Carolina’s program has been eliminated. Washington State’s program has been cut by about 90 percent in recent years, and for the third year in a row, Ohio has not allocated any state money for what was once a successful program, the report said.

    States Cut Antismoking Outlays Despite Record Tobacco Revenue, NYT, 5.12.2012,
    http://www.nytimes.com/2012/12/06/health/antismoking-outlays-drop-despite-tobacco-revenue.html

Coating on Buffered Aspirin

May Hide Its Heart-Protective Effects

December 4, 2012
The New York Times
By KATIE THOMAS

While aspirin may prevent heart attacks and strokes, a commonly used coating to protect the stomach may obscure the benefits, leading doctors to prescribe more expensive prescription drugs, according to a study published Tuesday in the journal Circulation.

The conclusion about coated aspirin was only one finding in the study, whose main goal was to test the hotly disputed idea that aspirin does not help prevent heart attacks or stroke in some people.

For more than a decade, cardiologists and drug researchers have posited that anywhere from 5 to 40 percent of the population is “aspirin resistant,” as the debated condition is known. But some prominent doctors say that the prevalence of the condition has been exaggerated by companies and drug makers with a commercial interest in proving that aspirin — a relatively inexpensive, over-the-counter drug whose heart benefits have been known since the 1950s — does not always work.

The authors of the new study, from the University of Pennsylvania, claim that they did not find a single case of true aspirin resistance in any of the 400 healthy people who were examined. Instead, they claim, the coating on aspirin interfered with the way that the drug entered the body, making it appear in tests that the drug was not working.

The study was partly financed by Bayer, the world’s largest manufacturer of brand-name aspirin, much of which is coated.

Aside from whether coating aspirin conceals its effects in some people, there is little evidence that it protects the stomach better than uncoated aspirin, said Dr. Garret FitzGerald, chairman of pharmacology at the University of Pennsylvania and one of the study’s authors.

“These studies question the value of coated, low-dose aspirin,” he said in a statement accompanying the article. “This product adds cost to treatment, without any clear benefit. Indeed, it may lead to the false diagnosis of aspirin resistance and the failure to provide patients with an effective therapy.”

In a statement, Bayer took issue with some of the study’s conclusions and methods and said previous studies of coated aspirin, also called enteric-coated aspirin, have been shown to stop blood platelets from sticking together — which can help prevent heart attacks and stroke — at levels comparable to uncoated aspirin. Bayer also noted that the price difference between its coated and uncoated aspirin was negligible, although Dr. FitzGerald argued there was no reason patients should use anything other than uncoated generic aspirin, which is cheaper.

“When used as directed,” the company said, “both enteric and nonenteric coated aspirin provides meaningful benefits, is safe and effective and is infrequently associated with clinically significant side effects.”

Although researchers had long observed that, as is true with most drugs, aspirin’s effects varied among patients, the existence of “aspirin resistance” gained currency in the 1990s and early 2000s. One often-cited study, published in 2003, found that about 5 percent of cardiovascular patients were aspirin-resistant and that that group was more than three times as likely as those not aspirin-resistant to suffer a major event like a heart attack.

But some said the popularity of aspirin resistance got a boost in part because of the development of urine and blood tests to measure it and the arrival on the market of drugs like Plavix, a more expensive prescription drug sold by Bristol-Myers Squibb that also thins the blood.

In the most recent study, the patients who initially tested positive for aspirin resistance later tested negative for it and by the end of the study, Dr. FitzGerald said, none of the patients showed true resistance. “Nobody had a stable pattern of resistance that was specific to coated aspirin,” he said. If resistance to aspirin exists, he said, “I think that the incidence is vanishingly small.”

Dr. Eric Topol, one of the authors of the 2003 study, said he strongly disagreed with Dr. FitzGerald’s conclusions, noting that it looked only at healthy volunteers, “which is very different than studying people who actually have heart disease or other chronic illnesses who are taking various medications.” Those conditions or medications could affect the way aspirin works in the body, he said.

But Dr. Topol and Dr. FitzGerald did agree that there was little value in testing for whether someone was aspirin-resistant, in part because there was little evidence that knowing someone is resistant to aspirin will prevent a heart attack or stroke.

Representatives for Accumetrics, which sells a blood test, and Corgenix, which sells a urine test, maintained that there was value in determining how well aspirin worked in individual patients, and said more recent research on the issue has moved away from a stark determination of whether someone is resistant to aspirin. “This whole concept of drug resistance has moved past that term and moved into the level of response that someone has,” said Brian Bartolomeo, market development manager at Accumetrics.

    Coating on Buffered Aspirin May Hide Its Heart-Protective Effects, NYT, 4.12.2012,
    http://www.nytimes.com/2012/12/05/business/coating-on-buffered-aspirin-may-hide-its-heart-protective-effects.html

Joseph E. Murray,

Transplant Doctor and Nobel Prize Winner,

Dies at 93

November 27, 2012
The New York Times
By CORNELIA DEAN

Dr. Joseph E. Murray, who opened a new era of medicine with the first successful human organ transplant, died on Monday. He was 93 and lived in Wellesley and Edgartown, Mass.

He died in Boston at Brigham and Women’s Hospital, where he performed his first transplant, said Tom Langford, a hospital spokesman. The cause was complications from a stroke he suffered on Thursday, Mr. Langford said. Dr. Murray’s groundbreaking surgical feat came in 1954, when he removed a healthy kidney from a 23-year-old man and implanted it in his ailing identical twin. Dr. Murray went on to pioneer techniques that over the years changed the lives of tens of thousands of patients who received new kidneys, hearts, lungs, livers or other organs after their own had failed.

In 1990, he was awarded the Nobel Prize in Physiology or Medicine.

As director of the Surgical Research Laboratory at Harvard Medical School and at Peter Bent Brigham Hospital in Boston, which became Brigham and Women’s, Dr. Murray was a leader in the study of transplant techniques, the mechanisms of organ rejection and the use of drugs to thwart it.

Among other procedures, he performed kidney transplants involving more than two dozen pairs of identical twins. He recorded the first successful transplant to a nonidentical recipient, in 1959, and the first using a cadaver kidney, in 1962. And he trained doctors who became leaders in transplantation around the world.

Though Dr. Murray devoted most of his career to reconstructive plastic surgery, he was most famous as a transplant surgeon, especially after receiving the Nobel. He shared the $703,000 prize with Dr. E. Donnall Thomas, a pioneer in bone marrow transplantation. The award was unusual in that the Nobel Committee typically honors researchers rather than clinical practitioners.

Joseph Edward Murray was born April 1, 1919, in Milford, Mass., the son of William Murray, a judge, and Mary DePasquale Murray, a schoolteacher. He attended the College of the Holy Cross and Harvard Medical School, from which he graduated in 1943. After an abbreviated internship at Brigham, he entered the Army Medical Corps in 1944.

It was his experience as an Army doctor, especially using cadaver skin to treat burned soldiers, that led him to both transplantation and facial reconstruction, Dr. Murray said in an interview in 2001. Though the transplanted skin would survive for only 8 or 10 days before it would “begin to melt around the edges,” Dr. Murray recalled, the experience taught him that tissue from one person might survive for a time in another and that it might be possible to use “tissue from a dead person to save a human life.”

So when he returned to civilian life and began practicing as a plastic and general surgeon at Brigham, he joined colleagues in investigating the possibilities of organ transplants. At the time, he recalled, organ transplantation was considered such a wild dream that a medical school mentor advised him to abandon the idea as a clinical dead end. At Brigham, the work “was considered a fringe project,” he wrote in his autobiography, “Surgery of the Soul,” published in 2001 by History Publications/USA.

But he and his colleagues began testing surgical techniques with dogs, removing and reimplanting kidneys. Then, in October 1954, Richard Herrick, a Massachusetts man dying of chronic nephritis, a kidney disease, was admitted to the hospital, and his doctors referred him to Dr. Murray as a possible transplant recipient. The man’s identical twin, Ronald, was willing to give him a kidney. Would Dr. Murray perform the surgery?

It was a daunting prospect. Dr. Murray worried about “taking a normal person and doing a major operation not for his benefit but for another person’s,” he said in the 2001 interview.

“We were criticized for playing God,” he said.

After consulting with clergy members from a range of denominations, and comparing the Herricks’ fingerprints to be sure they were identical and not merely fraternal twins, Dr. Murray and his colleagues decided to go ahead. They first practiced their surgical techniques on a cadaver. The donor kidney “was the only kidney in the universe that was compatible,” Dr. Murray said, “and I did not want to goof it up for technical reasons.”

The surgery took place on Dec. 23, 1954. As Dr. Murray wrote later, “There was a collective hush in the operating room” as blood began to flow into the implanted kidney and urine began to flow out of it.

Richard Herrick, who later married one of his nurses, survived until 1962, when he died of a recurrence of his original disease.

Two other patients were important to Dr. Murray’s medical career, both professionally and personally.

The first was Charles Woods, a 22-year-old Army flier who had been badly burned in December 1944 when his plane crashed in Burma (now Myanmar). He was flown to Valley Forge General Hospital, in Pennsylvania, where Dr. Murray was a junior member of the medical team that treated Mr. Woods with scores of skin grafts and operations to reconstruct his destroyed face and hands.

Dr. Murray was mightily impressed with his patient’s fortitude, pluck and faith, and they stayed in touch over the years as Mr. Woods — recovered but still disfigured — reared a family and became a successful businessman in Alabama.

“He taught all of us who cared for him how a will to live can overcome enormous odds,” Dr. Murray wrote in his autobiography.

The second patient was Raymond Francis McMillan, who was born with Moebius syndrome, a condition involving heart defects and facial deformities so severe that he was abandoned as a child to a mental institution. In 1964, when he was released at age 21, people who knew him referred him to Dr. Murray.

Step by step, in a series of operations, Dr. Murray and his colleagues reconstructed and repositioned Mr. McMillan’s jaw so that for the first time he could swallow normally, control saliva and smile. They then repaired his palate and his nose. Other doctors repaired his heart defects.

Although the doctors were never able to give him an ordinary appearance, Mr. McMillan took his place in the world. The doctors had encouraged him to earn his high school equivalency diploma and arranged work for him in hospital labs.

Surgery had enabled “his inner self to grow and glow,” Dr. Murray wrote. The title of his autobiography, “Surgery of the Soul,” was the phrase he used to describe the phenomenon.

In 1971, Dr. Murray resigned as chief of transplant surgery at Brigham to concentrate on plastic surgery — a field, he often said with regret, that had become wrongly associated with mere cosmetic procedures.

In this country and abroad, he treated hundreds of children and adults with congenital facial deformities, survivors of drastic surgery for head and neck cancers, and patients with injuries or other problems. He often used techniques pioneered by Dr. Paul Tessier of France to treat Crouzon syndrome, which produces congenital facial deformities.

In 1945, Dr. Murray married Virginia Link, an aspiring singer he had met at a Boston Symphony Orchestra concert while he was in medical school. Mrs. Murray, known as Bobby, survives him, along with six children and 18 grandchildren.

Dr. Murray was for many years a prominent summer resident of Chappaquiddick Island, off Martha’s Vineyard in Massachusetts, where he and Mrs. Murray bought a plot of land in 1970 and camped on it with their family until they could build a house there.

Dr. Murray was elected to the National Academy of Sciences and the Institute of Medicine. A Roman Catholic, he was also a member of the Pontifical Academy of Sciences, which advises the Vatican on science issues. He donated his share of the $703,000 Nobel award to Harvard Medical School, Brigham and Women’s Hospital and Boston Children’s Hospital, where he had also treated plastic surgery patients.

After he retired, he remained in high demand as a speaker, mostly addressing medical students and telling them to “keep your eye on helping the patient,” he said in the 2001 interview.

“It’s the best time ever to be a doctor,” he would tell them, “because you can heal and treat conditions that were untreatable even a few years ago.”

Michael Schwirtz contributed reporting.

    Joseph E. Murray, Transplant Doctor and Nobel Prize Winner, Dies at 93, NYT, 27.11.2012,
    http://www.nytimes.com/2012/11/28/health/dr-joseph-e-murray-transplant-doctor-and-nobel-winner-dies-at-93.html

Care at the End of Life

November 24, 2012
The New York Times

Three years ago, at the height of the debate over health care reform, there was an uproar over a voluntary provision that encouraged doctors to discuss with Medicare patients the kinds of treatments they would want as they neared the end of life. That thoughtful provision was left out of the final bill after right-wing commentators and Republican politicians denounced it falsely as a step toward euthanasia and “death panels.”

Fortunately, advance planning for end-of-life decisions has been going on for years and is continuing to spread despite the demagogy on the issue in 2009. There is good evidence that, done properly, it can greatly increase the likelihood that patients will get the care they really want. And, as a secondary benefit, their choices may help reduce the cost of health care as well.

Many people sign living wills that specify the care they want as death nears and powers of attorney that authorize relatives or trusted surrogates to make decisions if they become incapacitated. Those standard devices have been greatly improved in recent years by adding medical orders signed by a doctor — known as Physician Orders for Life Sustaining Treatment, or POLST — to ensure that a patient’s wishes are followed, and not misplaced or too vague for family members to be sure what a comatose patient would want.

Fifteen states, including New York, have already enacted laws or regulations to authorize use of these forms. Similar efforts are under development in another 28 states. The laws generally allow medical institutions to decide whether to offer the forms and always allow patients and families to decide voluntarily whether to use them.

With these physician orders, the doctor, or in some states a nurse practitioner or physician assistant, leads conversations with patients, family members and surrogates to determine whether a patient with advanced illness wants aggressive life-sustaining treatment, a limited intervention or simply palliative or hospice care.

The health care professional then signs a single-page medical order telling emergency medical personnel and other health care providers what to do if the patient is incapacitated. In most states, the patient or surrogate must also sign the medical order to indicate informed consent. The orders are conspicuously highlighted in a patient’s electronic medical record and follow patients from one setting to another — such as a hospital emergency room or nursing home — so that any health professional handling the case will know what interventions the patient might want.

This comprehensive approach to end-of-life decisions started in Oregon in the early 1990s and is now used voluntarily by virtually all hospices and skilled nursing homes in that state. At least 50,000 Oregonians with advanced illness are covered by orders signed by a nurse or doctor. The program has provided care consistent with a patient’s wishes to limit treatment more than 90 percent of the time and has significantly reduced unwanted — and costly — hospitalizations, presumably reducing the overall cost of care.

The Oregon model has been adopted by the Gundersen Lutheran Health System in Wisconsin, where the forms now cover virtually all patients in facilities for long-term care or hospice care. Families are pleased and costs have come down. The Dartmouth Atlas of Health Care, which compares Medicare costs among various regions of the country, found that, in 2010, Gundersen was among the lowest-cost hospitals in the nation in treating patients at the end of life.

The Wisconsin Medical Society moved to organize voluntary pilot projects with doctors using Gundersen’s approach in other areas of the state. But the society backed down from using the physicians’ order forms because of opposition from the state’s Roman Catholic bishops, who contended that the orders might raise the risk of euthanasia. As a result, the pilot projects will only encourage healthy adults to do advance planning and create powers of attorney well before they face a medical crisis.

No matter what the death-panel fearmongers say, end-of-life conversations and medical orders detailing what care to provide increase the confidence of patients that they will get the care they really want. In some cases, that could well mean the request to be spared costly tests, procedures and heroic measures that provide no real medical benefit.

    Care at the End of Life, NYT, 24.11.2012,
    http://www.nytimes.com/2012/11/25/opinion/sunday/end-of-life-health-care.html

For Alzheimer’s,

Detection Advances Outpace Treatment Options

November 15, 2012
The New York Times
By GINA KOLATA

When Awilda Jimenez started forgetting things last year, her husband, Edwin, felt a shiver of dread. Her mother had developed Alzheimer’s in her 50s. Could his wife, 61, have it, too?

He learned there was a new brain scan to diagnose the disease and nervously agreed to get her one, secretly hoping it would lay his fears to rest. In June, his wife became what her doctor says is the first private patient in Arizona to have the test.

“The scan was floridly positive,” said her doctor, Adam S. Fleisher, director of brain imaging at the Banner Alzheimer’s Institute in Phoenix.

The Jimenezes have struggled ever since to deal with this devastating news. They are confronting a problem of the new era of Alzheimer’s research: The ability to detect the disease has leapt far ahead of treatments. There are none that can stop or even significantly slow the inexorable progression to dementia and death.

Families like the Jimenezes, with no good options, can only ask: Should they live their lives differently, get their affairs in order, join a clinical trial of an experimental drug?

“I was hoping the scan would be negative,” Mr. Jimenez said. “When I found out it was positive, my heart sank.”

The new brain scan technology, which went on the market in June, is spreading fast. There are already more than 300 hospitals and imaging centers, located in most major metropolitan areas, that are ready to perform the scans, according to Eli Lilly, which sells the tracer used to mark plaque for the scan.

The scans show plaques in the brain — barnaclelike clumps of protein, beta amyloid — that, together with dementia, are the defining feature of Alzheimer’s disease. Those who have dementia but do not have excessive plaques do not have Alzheimer’s. It is no longer necessary to wait until the person dies and has an autopsy to learn if the brain was studded with plaques.

Many insurers, including Medicare, will not yet pay for the new scans, which cost several thousand dollars. And getting one comes with serious risks. While federal law prevents insurers and employers from discriminating based on genetic tests, it does not apply to scans. People with brain plaques can be denied long-term care insurance.

The Food and Drug Administration, worried about interpretations of the scans, has required something new: Doctors must take a test showing they can read them accurately before they begin doing them. So far, 700 doctors have qualified, according to Eli Lilly. Other kinds of diagnostic scans have no such requirement.

In another unusual feature, the F.D.A. requires that radiologists not be told anything about the patient. They are generally trained to incorporate clinical information into their interpretation of other types of scans, said Dr. R. Dwaine Rieves, director of the drug agency’s Division of Medical Imaging Products.

But in this case, clinical information may lead radiologists to inadvertently shade their reports to coincide with what doctors suspect is the underlying disease. With Alzheimer’s, Dr. Rieves said, “clinical impressions have been misleading.”

“This is a big change in the world of image interpretation,” he said.

Like some other Alzheimer’s experts, Dr. Fleisher used the amyloid scan for several years as part of a research study that led to its F.D.A. approval. Subjects were not told what the scans showed. Now, with the scan on the market, the rules have changed.

Dr. Fleisher’s first patient was Mrs. Jimenez. Her husband, the family breadwinner, had lost his job as a computer consultant when the couple moved from New York to Arizona to take care of Mrs. Jimenez’s mother. Paying several thousand dollars for a scan was out of the question. But Dr. Fleisher found a radiologist, Dr. Mantej Singh Sra of Sun Radiology, who was so eager to get into the business that he agreed to do Mrs. Jimenez’s scan free. His plan was to be the first in Arizona to do a scan, and advertise it.

After Dr. Sra did the scan, the Jimenezes returned to Dr. Fleisher to learn the result.

Dr. Fleisher, sad to see so much plaque in Mrs. Jimenez’s brain, referred her to a psychiatrist to help with anxiety and suggested she enter clinical trials of experimental drugs.

But Mr. Jimenez did not like that idea. He worried about unexpected side effects.

“Tempting as it is, where do you draw the line?” he asks. “At what point do you take a risk with a loved one?”

At Mount Sinai Medical Center in New York, Dr. Samuel E. Gandy found that his patients — mostly affluent — were unfazed by the medical center’s $3,750 price for the scan. He has been ordering at least one a week for people with symptoms ambiguous enough to suggest the possibility of brain plaques.

Most of his patients want their names kept confidential, fearing an inability to get long-term care insurance, or just wanting privacy.

A woman from New Zealand was told by one doctor that she had Alzheimer’s and by another that she had frontotemporal dementia, a rare brain disease that strikes people at younger ages than Alzheimer’s and progresses faster. She had a scan. The result was clear — no significant accumulation of plaques. She had frontotemporal dementia. Unfortunately, Dr. Gandy said, there was nothing he could offer her, not even a clinical drug trial.

A man given a diagnosis of Parkinson’s disease was totally immobile and demented. Could he have had Alzheimer’s all along?

A scan showed he did.

Dr. Gandy’s first patient, Alexander Dreyfoos, an 80-year-old electronics engineer and businessman, was one of the very few willing to be open about his experience. He is independently wealthy and was not worried about privacy or insurance.

But he was very worried about Alzheimer’s. His mother, who died at age 79, had it. “I watched her deteriorate to the point where she couldn’t even recognize me,” Mr. Dreyfoos said. And he had begun seeing signs that his memory was slipping.

“A few years ago, I realized I wasn’t at the top of my game,” he said.

Mr. Dreyfoos had his DNA sequenced by a commercial company and learned that he had a gene, ApoE4, that increases the risk of Alzheimer’s. At Massachusetts General Hospital, he learned he had shrinkage of his brain — typical of Alzheimer’s. After doctors tested his memory and reasoning, he said, they told him he was right to worry.

Finally, Mr. Dreyfoos went to Dr. Gandy at Mount Sinai, looking for an experimental treatment for the Alzheimer’s he was sure he had. Dr. Gandy also suspected he had the disease, but suggested a scan.

The scan did not show an abnormal accumulation of amyloid. As far as Dr. Gandy is concerned, Mr. Dreyfoos does not have Alzheimer’s.

Mr. Dreyfoos was surprised, “wonderfully so,” he said.

Dr. Gandy said that as many as 30 percent of people who seem to have Alzheimer’s turn out not to have it when they get the scan. But those who get bad news struggle to cope.

Desperate to slow the progression of his wife’s disease, Mr. Jimenez is now giving her turmeric, coenzyme Q10, astaxanthin, krill oil, ginkgo biloba and coconut oil — remedies he found on the Internet. There is no good evidence they work, and each costs about $5 to $15 a month. But, Mr. Jimenez says: “What am I going to do? People feel so helpless with this disease that they are willing to try anything.”

He worries about the future and how they will survive financially. He wonders if it might have been better not to know the diagnosis.

“It is financially, emotionally and spiritually draining,” Mr. Jimenez said. “Everything hangs by a thread.”

    For Alzheimer’s, Detection Advances Outpace Treatment Options, NYT, 15.11.2012,
    http://www.nytimes.com/2012/11/16/health/for-alzheimers-detection-advances-outpace-treatment-options.html

F.D.A. Posts Injury Data for 3 Drinks

November 15, 2012
The New York Times
By BARRY MEIER

As its policy on highly caffeinated energy drinks is scrutinized, the Food and Drug Administration publicly released records on Thursday about fatality and injury filings that mentioned the possible involvement of three top-selling products.

The Web posting of the records by the agency included 13 previously undisclosed injury filings that mentioned Rockstar Energy. The F.D.A. also released filings related to 5-Hour Energy, a popular energy shot, and Monster Energy, another popular brand.

The agency’s action comes a day after The New York Times reported that the agency had received more than 90 filings about 5-Hour Energy, including reports that cited its possible involvement in 13 fatalities. In late October, the F.D.A. confirmed that it had received five fatality reports that cited Monster Energy.

The filing of an incident report with the F.D.A. does not mean that a product was responsible for a death or an injury or contributed to it in any way. The makers of 5-Hour Energy and Monster Energy have insisted their products are safe and unrelated to the problems reported to the F.D.A.

Officials of Rockstar Energy Drink, which is based in Las Vegas, did not return calls on Thursday seeking comment

The release of the filings may represent a turnabout in agency policy. While units within the F.D.A. that oversee prescription drugs and medical devices make so-called adverse event reports about those products available to the public through Web sites or other means, the unit that oversees dietary supplements routinely does not do so.

Shelly Burgess, an agency spokeswoman, said the agency had decided to release the records “in an effort to be transparent.” She added that the filing of a report did not show a product was at fault.

“If we find a relationship between consumption of the product and harm, F.D.A. will take appropriate action to reduce or eliminate the risk,” Ms. Burgess said.

Meanwhile, two senators, Richard Durbin of Illinois and Richard Blumenthal of Connecticut, sent a letter on Thursday to the F.D.A. commissioner, Dr. Margaret A. Hamburg, seeking a meeting to discuss energy drinks. Mr. Durbin and Mr. Blumenthal are Democrats.

Both lawmakers have pressed the agency to tighten regulations of energy drinks, but it has said that it has not yet seen sufficient evidence to do so.

“There has been alarming evidence that energy drinks pose a potential threat to the public’s health,” the two senators wrote.

Many medical experts say healthy adults can safely consume 400 milligrams or more of caffeine daily, or about as much caffeine as in several 8-ounce cups of coffee or in two 16-ounce cans of many energy drinks.

There is scant data, however, about whether such levels are safe for young teenagers to whom energy drinks are frequently marketed. Along with caffeine, energy drinks typically contain other ingredients like high levels of certain B vitamins and a substance called taurine, which exists inside the body.

The records released on Thursday by the F.D.A. cover a period from 2004 to last month. But the vast majority of filings are from the last four years; beginning in late 2008, makers of dietary supplements were required to notify the F.D.A. of a report of a fatality or injury that might have been associated with their products.

The three products involved in the release — Rockstar Energy, 5-Hour Energy and Monster Energy — are all marketed as dietary supplements. Other energy drinks like Red Bull, NOS and AMP are marketed by their producers as beverages. There is not a mandatory reporting requirement for beverages, though makers can do so voluntarily.

In releasing the filings, the F.D.A. said it thought that even with the mandatory reporting requirement for dietary supplements, “only a small fraction of adverse events associated with any product is reported.”

Last year, the F.D.A. received about 2,000 such reports about dietary supplements and weight-loss products, two broad categories that include more than 50,000 products.

Officials of the F.D.A. dietary supplement unit have said they were working on ways to make reports of adverse events public, but they have not set a timetable to do so. The records related to Monster Energy and 5-hour Energy came to light because they were released by the F.D.A. under the Freedom of Information Act.

Over all, sales of energy drinks in the United States grew an estimated 16 percent last year to $8.9 billion, a record level, according to Beverage Digest, a trade publication.

A report last year by the federal Substance Abuse and Mental Health Services Administration found that the annual number of emergency room visits in this country linked to energy drinks rose to more than 12,000 in 2009, the latest year for which data was available. The figure represents a tenfold jump from the number of such visits reported in 2005.

    F.D.A. Posts Injury Data for 3 Drinks, NYT, 15.11.2012,
    http://www.nytimes.com/2012/11/16/business/scrutiny-of-energy-drinks-grows.html

Alzheimer’s Tied to Mutation Harming Immune Response

November 14, 2012
The New York Times
By GINA KOLATA

Alzheimer’s researchers and drug companies have for years concentrated on one hallmark of Alzheimer’s disease: the production of toxic shards of a protein that accumulate in plaques on the brain.

But now, in a surprising coincidence, two groups of researchers working from entirely different starting points have converged on a mutated gene involved in another aspect of Alzheimer’s disease: the immune system’s role in protecting against the disease. The mutation is suspected of interfering with the brain’s ability to prevent the buildup of plaque.

The discovery, researchers say, provides clues to how and why the disease progresses. The gene, known as TREM2, is only the second found to increase Alzheimer’s risk substantially in older people.

“It points very specifically to a potential metabolic pathway that you could intervene in to change the course of Alzheimer’s disease,” said William Thies, chief medical and scientific officer of the Alzheimer’s Association.

Much work remains to be done before scientists understand precisely how the newly discovered gene mutation leads to Alzheimer’s, but already there are some indications from studies in mice. When the gene is not mutated, white blood cells in the brain spring into action, gobbling up and eliminating the plaque-forming toxic protein, beta amyloid. As a result, Alzheimer’s can be staved off or averted.

But when the gene is mutated, the brain’s white blood cells are hobbled, making them less effective in their attack on beta amyloid.

People with the mutated gene have a threefold to fivefold increase in the likelihood of developing Alzheimer’s disease in old age.

The intact gene, says John Hardy of University College London, “is a safety net.” And those with the mutation, he adds, “are living life without a safety net.” Dr. Hardy is lead author of one of the papers.

The discovery also suggests that a new type of drug could be developed to enhance the gene’s activity, perhaps allowing the brain’s white blood cells to do their work.

“The field is in desperate need of new therapeutic agents,” said Alison Goate, an Alzheimer’s researcher at Washington University in St. Louis who contributed data to Dr. Hardy’s study. “This will give us an alternative approach.”

The fact that two research groups converged on the same gene gives experts confidence in the findings. Both studies were published online Wednesday in The New England Journal of Medicine. “Together they make a good case that this really is an Alzheimer’s gene,” said Gerard Schellenberg, an Alzheimer’s researcher at the University of Pennsylvania who was not involved with the work.

The other gene found to raise the odds that a person will get Alzheimer’s, ApoE4, is much more common and confers about the same risk as the mutated version of TREM2. But it is still not clear why ApoE4, discovered in 1993, makes Alzheimer’s more likely.

Because the mutations in the newly discovered gene are rare, occurring in no more than 2 percent of Alzheimer’s patients, it makes no sense to start screening people for them, Dr. Thies said. Instead, the discovery provides new clues to the workings of Alzheimer’s disease.

To find the gene, a research group led by Dr. Kari Stefansson of deCODE Genetics of Iceland started with a simple question.

“We asked, ‘Can we find anything in the genome that separates those who are admitted to nursing homes before the age of 75 and those who are still living at home at 85?’ ” he said.

Scientists searched the genomes of 2,261 Icelanders and zeroed in on TREM2. Mutations in that gene were more common among people with Alzheimer’s, as well as those who did not have an Alzheimer’s diagnosis but who had memory problems and might be on their way to developing Alzheimer’s.

The researchers confirmed their results by looking for the gene in people with and without Alzheimer’s in populations studied at Emory University, as well as in Norway, the Netherlands and Germany.

The TREM2 connection surprised Dr. Stefansson. Although researchers have long noticed that the brain is inflamed in Alzheimer’s patients, he had dismissed inflammation as a major factor in the disease.

“I was of the opinion that the immune system would play a fairly small role, if any, in Alzheimer’s disease,” Dr. Stefansson said. “This discovery cured me of that bias.”

Meanwhile, Dr. Hardy and Rita Guerreiro at University College London, along with Andrew Singleton at the National Institute on Aging, were intrigued by a strange, rare disease. Only a few patients had been identified, but their symptoms were striking. They had crumbling bones and an unusual dementia, sclerosing leukoencephalopathy.

“It’s a weird disease,” Dr. Hardy said.

He saw one patient in her 30s whose brain disease manifested in sexually inappropriate behavior. Also, her bones kept breaking. The disease was caused by mutations that disabled both the copy of TREM2 that she had inherited from her mother and the one from her father.

Eventually the researchers searched for people who had a mutation in just one copy of TREM2. To their surprise, it turned out that these people were likely to have Alzheimer’s disease.

They then asked researchers around the world who had genetic data from people with and without Alzheimer’s to look for TREM2 mutations.

“Sure enough, they had good evidence,” Dr. Hardy said. The mutations occurred in one-half of 1 percent of the general population but in 1 to 2 percent of patients with Alzheimer’s disease.

“That is a big effect,” Dr. Hardy said.

    Alzheimer’s Tied to Mutation Harming Immune Response, NYT, 14.11.2012,
    http://www.nytimes.com/2012/11/15/health/gene-mutation-that-hobbles-immune-response-is-linked-to-alzheimers.html

Amid Purity Questions, Drug Company Recalls Products

October 31, 2012
The New York Times
By SABRINA TAVERNISE

A drug producer linked to the pharmacy at the center of a national meningitis outbreak announced a recall of all of its products Wednesday after federal regulators found that it had not provided enough assurance that all the medicines it made were sterile.

The company, Ameridose, which is based in Massachusetts and is a major supplier of sterile injectable medications to hospitals across the country, underscored that there had been no reports of impurities in any of its products and said that it had announced the recall “out of an abundance of caution.”

The company sells more than 2,200 blended drug products, including tranquilizers, anesthetics and antibiotics, according to its Web site. The drugs are pumped into both injectable and oral syringes, as well as intravenous medicine bags. It said it would post the precise list of all the products on its Web site, ameridose.com.

The announcement represented another blow to the family behind Ameridose and its sister company, the New England Compounding Center, whose fungal-tainted steroid medication was responsible for the deaths of 29 people. Ameridose has taken pains to emphasize that it is legally distinct from New England Compounding. But the companies are owned by some of the same people. Federal officials have said Ameridose is part of the investigation because of concerns that it had some of the same business practices as New England Compounding.

Federal and state regulators have suspended operations at Ameridose until Monday. The Massachusetts Department of Public Health said Wednesday that the agreement with the company was “under review.”

Dr. Janet Woodcock, the director of the Center for Drug Evaluation and Research at the Food and Drug Administration, said in a telephone interview that the company offered to recall all of its products after federal officials shared the results of their inspection, which found fault with some of its sterility “assurances.”

Ameridose said in a statement that the F.D.A. had notified the company that the agency would “be seeking improvements in Ameridose’s sterility testing process.”

Dr. Woodcock emphasized that the recall was different from that of New England Compounding, where there was known contamination. The agency is not asking health care providers to track down patients who were given Ameridose products, she said, because there have been no reports of problems. Instead, providers are being asked to send the products back to the company.

In a statement, Ameridose said it had shipped more than 70 million “units of product” since its founding in 2006 without problems.

It said it had agreed to recall its products “because customer confidence is paramount to its business.”

Hospitals have reported difficulties in obtaining certain types of injectable medications that Ameridose produces since the company first suspended its operations, and Wednesday’s recall was likely to exacerbate those shortages.

Dr. Woodcock said that the agency was working to mitigate the shortages, in part by asking other manufacturers to increase production. But she added that concerns about lack of sterility were also important.

“We have to balance the risk of lack of sterility assurance against the issues of products not being available,” she said. “That’s a line we walk every day.”

    Amid Purity Questions, Drug Company Recalls Products, NYT, 31.10.2012,
    http://www.nytimes.com/2012/11/01/us/ameridose-announces-recall-amid-questions-about-drugs-sterility.html

Suicide by Choice? Not So Fast

October 31, 2012
The New York Times
By BEN MATTLIN

NEXT week, voters in Massachusetts will decide whether to adopt an assisted-suicide law. As a good pro-choice liberal, I ought to support the effort. But as a lifelong disabled person, I cannot.

There are solid arguments in favor. No one will be coerced into taking a poison pill, supporters insist. The “right to die” will apply only to those with six months to live or less. Doctors will take into account the possibility of depression. There is no slippery slope.

Fair enough, but I remain skeptical. There’s been scant evidence of abuse so far in Oregon, Washington and Montana, the three states where physician-assisted death is already legal, but abuse — whether spousal, child or elder — is notoriously underreported, and evidence is difficult to come by. What’s more, Massachusetts registered nearly 20,000 cases of elder abuse in 2010 alone.

My problem, ultimately, is this: I’ve lived so close to death for so long that I know how thin and porous the border between coercion and free choice is, how easy it is for someone to inadvertently influence you to feel devalued and hopeless — to pressure you ever so slightly but decidedly into being “reasonable,” to unburdening others, to “letting go.”

Perhaps, as advocates contend, you can’t understand why anyone would push for assisted-suicide legislation until you’ve seen a loved one suffer. But you also can’t truly conceive of the many subtle forces — invariably well meaning, kindhearted, even gentle, yet as persuasive as a tsunami — that emerge when your physical autonomy is hopelessly compromised.

I was born with a congenital neuromuscular weakness called spinal muscular atrophy. I’ve never walked or stood or had much use of my hands. Roughly half the babies who exhibit symptoms as I did don’t live past age 2. Not only did I survive, but the progression of my disease slowed dramatically when I was about 6 years old, astounding doctors. Today, at nearly 50, I’m a husband, father, journalist and author.

Yet I’m more fragile now than I was in infancy. No longer able to hold a pencil, I’m writing this with a voice-controlled computer. Every swallow of food, sometimes every breath, can become a battle. And a few years ago, when a surgical blunder put me into a coma from septic shock, the doctors seriously questioned whether it was worth trying to extend my life. My existence seemed pretty tenuous anyway, they figured. They didn’t know about my family, my career, my aspirations.

Fortunately, they asked my wife, who knows exactly how I feel. She convinced them to proceed “full code,” as she’s learned to say, to keep me alive using any and all means necessary.

From this I learned how easy it is to be perceived as someone whose quality of life is untenable, even or perhaps especially by doctors. Indeed, I hear it from them all the time — “How have you survived so long? Wow, you must put up with a lot!” — even during routine office visits, when all I’ve asked for is an antibiotic for a sinus infection. Strangers don’t treat me this way, but doctors feel entitled to render judgments and voice their opinions. To them, I suppose, I must represent a failure of their profession, which is shortsighted. I am more than my diagnosis and my prognosis.

This is but one of many invisible forces of coercion. Others include that certain look of exhaustion in a loved one’s eyes, or the way nurses and friends sigh in your presence while you’re zoned out in a hospital bed. All these can cast a dangerous cloud of depression upon even the most cheery of optimists, a situation clinicians might misread since, to them, it seems perfectly rational.

And in a sense, it is rational, given the dearth of alternatives. If nobody wants you at the party, why should you stay? Advocates of Death With Dignity laws who say that patients themselves should decide whether to live or die are fantasizing. Who chooses suicide in a vacuum? We are inexorably affected by our immediate environment. The deck is stacked.

Yes, that may sound paranoid. After all, the Massachusetts proposal calls for the lethal dose to be “self-administered,” which it defines as the “patient’s act of ingesting.” You might wonder how that would apply to those who can’t feed themselves — people like me. But as I understand the legislation, there is nothing to prevent the patient from designating just about anyone to feed them the poison pill. Indeed, there is no requirement for oversight of the ingestion at all; no one has to witness how and when the lethal drug is given. Which, to my mind, leaves even more room for abuse.

To be sure, there are noble intentions behind the “assisted death” proposals, but I can’t help wondering why we’re in such a hurry to ensure the right to die before we’ve done all we can to ensure that those of us with severe, untreatable, life-threatening conditions are given the same open-hearted welcome, the same open-minded respect and the same open-ended opportunities due everyone else.

Ben Mattlin is a freelance journalist and the author of

“Miracle Boy Grows Up: How the Disability Rights Revolution Saved My Sanity.”

    Suicide by Choice? Not So Fast, NYT, 31.10.2012,
    http://www.nytimes.com/2012/11/01/opinion/suicide-by-choice-not-so-fast.html

F.D.A. Details Contamination at Firm Tied to Meningitis

October 26, 2012
The New York Times
By SABRINA TAVERNISE and ANDREW POLLACK

WASHINGTON — A federal inspection of a company whose tainted pain medicine has caused one of the worst public health drug disasters since the 1930s found greenish-yellow residue on sterilization equipment, surfaces coated with levels of mold and bacteria that exceeded the company’s own environmental limits, and an air-conditioner that was shut off nightly despite the importance of controlling temperature and humidity.

The findings, made public on Friday by the Food and Drug Administration, followed a report from Massachusetts regulators on Tuesday and offered disturbing new details in an emerging portrait of what went wrong inside the New England Compounding Center, the pharmacy at the heart of a national meningitis outbreak in which 25 people have died, 313 more have fallen ill and as many as 14,000 people are believed to have been exposed.

Instead of producing tailor-made drugs for individual patients, as the law allowed, the company turned into a major drug maker that supplied some of the most prestigious hospitals in the country, including ones affiliated with Harvard, Yale and the Mayo Clinic, all with minimal oversight from federal regulators.

Federal officials also drew attention to the company’s proximity to a recycling plant where excavators and freight trucks heaped old mattresses, plastics and other materials, generating large amounts of dust. The plant, which is owned by one of the same people as the pharmacy, has not always complied with regulations and has drawn complaints, according to records in Framingham, Mass., where the company is located.

And as the death toll continues to rise, the F.D.A.’s commissioner, Dr. Margaret Hamburg, who was appointed by President Obama, has stayed mostly silent.

Some observers said that weighing in loudly and publicly on a contentious issue was simply not Dr. Hamburg’s style. Others said that it was because the agency was preparing a criminal case and would not want to endanger that with statements construed to be prejudicial. David Kessler, a former F.D.A. commissioner, pointed to the impending presidential election and efforts to keep the outbreak from becoming a political issue.

“Everyone is closed down right now,” he said. “People are being very careful. No one wants to make a mistake.”

The inspection report offered the clearest indication yet that the fungus that contaminated the company’s vials of methylprednisolone acetate, an injectable pain medicine, may have gotten there because of the company’s own practices.

Inspectors said that 83 out of 321 vials from one of the lots linked to the meningitis outbreak that they observed contained “greenish black foreign matter” and another 17 vials had “white filamentous material.”

The report said the company had tested only one sample from that lot, and it had proved sterile. When the F.D.A. tested 50 vials from that same lot, all of them contained some microbial growth.

Experts said that perhaps the most worrisome finding was that the company’s own testing between January and September found surfaces in the clean rooms contaminated with either bacteria or mold exceeding the levels at which the company’s own procedures called for remedial measures. In some cases, there were so many bacteria or fungi in a sample that the whole testing dish was overrun with a so-called overgrowth.

“Think of a plant just growing out of control,” said Steven Lynn, director of the Office of Manufacturing and Product Quality at the F.D.A. Yet, according to the agency, there was no evidence the company took remedial actions.

“This is pretty heinous stuff,” said Lou Diorio of LDT Health Solutions, a consultant to compounding pharmacies. “This just shows a general lack of basic clean-room principles.”

Russell E. Madsen, a consultant on sterility issues to the pharmaceutical industry, said of the inspection report: “In all my time in the pharmaceutical industry, which is 45 years, I’ve never seen one this bad.”

Another problem was the company’s air-conditioning system, which employees said was switched off between 8 p.m. and 5:30 a.m. in the room where sterile drugs were made. Maintaining proper temperature and humidity is important for retarding the growth of microbes.

Mr. Lynn underscored that the findings were not a formal indictment of the company’s practices but a list of facts that would be used to inform the conclusions of its broader investigation, which began earlier this month.

The company said in a statement that it would “review this report and continue our cooperation with the F.D.A. We will follow the existing regulatory process and provide our comments to the F.D.A. after we have had adequate time for a complete review of the report.”

The recycling center, owned by Gregory Conigliaro, who also owns a stake in New England Compounding, was not initially a focus of the investigation, but has become a part of the inquiry as investigators learn more. The inspection report noted that rooftop units for the pharmacy’s air-conditioning system were located about 100 feet away from where large trucks and excavators were moving mattresses and plastics.

Over the years, neighbors have complained about dust, smells and debris that they said came from the property. In 2004, the Massachusetts Department of Environmental Protection investigated an anonymous complaint about a “gray dust plume airborne and falling like a snowstorm.”

According to documents on file with the Massachusetts Department of Environmental Protection, Conigliaro Industries recycled more than 16,000 tons of materials last year, including mattresses, furniture, batteries, asphalt roofing shingles, carpeting and plastic. To recycle a mattress, “We filet it like a fish, peel back the felt, the foam and the fabric, bale them and send them to end markets,” Mr. Conigliaro told a reporter for Waste News, an industry publication, in 2002.

New England Compounding had about 3,000 customers, and revelations about the company have shaken health care providers across the country. In Manhattan, Beth Israel Medical Center and St. Luke’s Roosevelt Hospital — former customers of New England Compounding — will “eliminate all purchased compounded drugs from our formulary as soon as possible,” according to a memo from the executive vice president of Continuum Health Partners, which runs both hospitals.

Brigham and Women’s Hospital, a Harvard affiliate in Boston, was a customer for seven or eight years, said a spokeswoman, Lori Schroth. She said Brigham and Women’s depended on New England Compounding for products that the hospital pharmacy could not easily make, or that were in short supply and not available from major manufacturers. The hospital had inspected the pharmacy “a handful” of times in the past, she said, and had never found a problem. The hospital’s own pharmacists are now working around the clock to make some of the medications formerly purchased from New England Compounding.

At Children’s National Medical Center in Washington, the hospital’s own pharmacy is compounding medications it used to buy from New England Compounding. The hospital trusted the company, said Dr. Gerard Martin, senior vice president, because it believed that federal and state regulators were making sure its products were safe.

“You believe that when a company is being regulated, they’re following good practices,” Dr. Martin said.

Sabrina Tavernise reported from Washington, and Andrew Pollack from Los Angeles.

Abby Goodnough contributed reporting from Boston, and Denise Grady from New York.

Sheelagh McNeill contributed research.

    F.D.A. Details Contamination at Firm Tied to Meningitis, NYT, 26.10.2012,
    http://www.nytimes.com/2012/10/27/health/fda-finds-unsanitary-conditions-at-new-england-compounding-center.html

‘Worried Sick’: Meningitis Risk Haunts 14,000

October 21, 2012
The New York Times
By DENISE GRADY

Cathy Literski could tell something was wrong just from her mother’s voice on the telephone.

Her mother had learned that a steroid drug injected into her spine for back pain might have been contaminated with a fungus that could cause meningitis. Mrs. Literski had recently had the same type of injections herself, at the same pain clinic in Brighton, Mich. For a moment, neither woman could speak.

“I think we’re both terrified that the other one is going to come down with it,” Mrs. Literski, 57, said. “She’s worried sick about me, and I’m worried sick about her. She’s 80 years old, and if she were to come down with it, she would have very little chance of survival.”

It will be weeks, maybe even months, before the two women know if they are in the clear, past the incubation period for this type of meningitis, which can cause strokes.

About 14,000 people in the United States are in the same nerve-racking situation: knowing they might have been infected, waiting to see if they get sick. So far, 282 have contracted meningitis, and 23 have died, in a national outbreak linked to a contaminated drug made by the New England Compounding Center in Framingham, Mass. A few other patients have developed joint infections from having the drug, methylprednisolone, injected into knees, hips, shoulders or elbows.

Three lots of the drug, more than 17,000 vials, were shipped to 23 states. The meningitis and other infections are not contagious.

As the case count rises day by day, experts are racing to see if they can determine which patients among all those exposed are most likely to contract meningitis. If they can identify the high-risk patients, doctors can follow them intensively with spinal taps and other tests in hopes of detecting the disease and treating it early enough to prevent its dreadful complications.

As early as Monday, health officials may be able to offer doctors a method to estimate a patient’s risk and help decide how aggressive the follow-up should be, Dr. Marion Kainer of the Tennessee Health Department said on Friday during a telephone conference.

In Tennessee, which has had more cases and deaths (69 cases and 9 deaths as of Saturday) than any other state, the State Health Department has found that one lot (06292012@26) infected more patients than others, and that the older the medicine when it was given and the higher the dose, the more likely a patient was to get sick. But Dr. Kainer emphasized that another lot (08102012@51), more of which went to other states, also appeared to be heavily contaminated and risky. She said researchers thought older medicine was riskier because the fungus was multiplying in the vials and making them more dangerous.

The earlier treatment begins, the better. Doctors do not want to wait until patients become seriously ill — but they say they must also avoid treating people who are not infected, because the drugs have severe side effects.

Yet doctors responding to the outbreak say it can be extremely difficult to determine whether symptoms are getting worse in people who were probably already suffering from chronic pain.

The stress of knowing that they have been exposed to a potentially deadly infection is also making matters more difficult. During the teleconference, one doctor said, “To be real honest, I believe I would have symptoms if I had been told I was given this medication.”

So far, most of the meningitis cases have been caused by a fungus called Exserohilum, a type of black mold. People with severe symptoms have been hospitalized and given high intravenous doses of a powerful antifungal drug, voriconazole, that can cause liver and kidney problems, hallucinations and abnormal heart rhythms.

But when the symptoms are mild and a spinal tap finds evidence of early infection, some patients can be treated at home with pills, said Dr. Carol Kauffman, an expert on fungal diseases at the University of Michigan. It is not clear how long the treatment will have to continue.

The medical profession has no experience in treating Exserohilum infections of the nervous system, said Dr. Thomas F. Patterson, chief of infectious diseases at the University of Texas Health Science Center in San Antonio. However, he said that in a meningitis outbreak in North Carolina in 2002, also caused by a black mold, voriconazole cured four of five patients (the fifth died). That outbreak was also caused by a contaminated steroid injected for back pain, also made by a compounding pharmacy (not the New England one).

Mrs. Literski, a retired school guidance counselor, has already had one spinal tap to look for signs of meningitis. It was negative, but doctors warned that the disease could still develop later and that she might have to be tested again. The test is unpleasant, and her mother has declined it.

Mrs. Literski previously tried spinal injections for disc disease, without success. She then had two back operations, but still had severe pain. Desperate for relief, she tried the injections again in August and again on Sept. 20.

On Oct. 3, before hearing about the meningitis outbreak, she woke up with a severe headache and a stiff neck. She does not commonly have headaches. Two days later, on a Friday, she heard about the outbreak. That weekend, she had a headache, nausea and dizziness, and very early on Oct. 8, when she got up to use the bathroom, she passed out, something that had never happened before.

She went to the emergency room, where doctors performed a spinal tap and told her the results were normal. But they said she should come back if her headache worsened.

So far, the headache has not worsened, but it has been severe, she said on Friday.

“I don’t want to be tested again unless I have to,” she said.

She has consulted a lawyer, Alyson Oliver in Rochester, Mich., who said that about a half dozen other patients had also contacted her.

Mrs. Literski said she felt “terribly guilty” because her mother, who previously had the injections and thought they helped, had planned to get them at a different clinic, until Mrs. Literski talked her into switching.

“I was the one who encouraged her to come to the Brighton facility so I could be with her,” Mrs. Literski said.

She added: “I’m concerned that my mother isn’t sharing symptoms because she’s terrified to have a spinal tap.”

For herself, Mrs. Literski said, the only option seems to be to wait and see.

She said, “It’s like an ominous cloud following me around every day, sapping the joy out of life because you’re waiting to find out if you have a deadly disease festering in your body.”

    ‘Worried Sick’: Meningitis Risk Haunts 14,000, NYT, 21.10.2012,
    http://www.nytimes.com/2012/10/22/health/meningitis-risk-haunts-14000-people.html

Twisting the Facts About Health Care

October 20, 2012
The New York Times

The outcome of the presidential election will determine which of two opposing paths the nation will follow on health care for all Americans. If voters re-elect President Obama, he will protect the health care reforms that are his signature domestic achievement. If they elect Mitt Romney, they will be choosing a man who has pledged to repeal the reform law and replace it with — who knows what?

The competing visions are often difficult to evaluate because the Republican candidates — Mr. Romney and his running mate, Paul Ryan — have become so artful about obfuscating their plans for Medicare, Medicaid and what they will do to reform the whole system. Almost nothing the Republican candidates say on these or other health care issues can be taken at face value.

Here are some of their bigger evasions:

REPLACING OBAMACARE Although Mr. Romney has said he wants to “repeal and replace” the Affordable Care Act, he has provided few details on what he would replace it with. When challenged to do so at the first presidential debate, Mr. Romney never quite answered and made some egregious misstatements along the way, some of which were repeated by Mr. Ryan in the vice-presidential debate.

Mr. Romney asserted that his plans had already been laid out in “a lengthy description,” implying that anyone could read the whole story by turning to his campaign Web site. As it turns out, the site has a page-and-a-half statement that says he would rely on private markets and state leadership but gives no hint of what it would cost or who would pay. A one-page list of frequently asked questions about his Medicare plan assures us that “Mitt continues to work on refining the details.”

He continues to assert that his plan would cover people with pre-existing conditions when it clearly would not. People who have pre-existing conditions — and are not already covered by insurance — are often refused coverage or charged exorbitant rates by private insurers. Starting in 2014, the reform law will require insurers to accept all applicants and charge them without regard to health status. By contrast, Mr. Romney has simply pledged to protect people who had insurance but then lost it, provided they take out a new policy within a short time. But this protection is already required by law and offers absolutely nothing for millions of people who can’t get or can’t afford private insurance.

He has also implied that the reform law created an unelected board that’s “ultimately” going to tell people what treatments they can have. The advisory board is specifically precluded by the law from recommending cuts in benefits or eligibility; its job is to propose cuts in payments to providers and insurers if necessary to meet budget targets.

A major goal of the law was to cover some 30 million more people by expanding Medicaid and subsidizing coverage for middle-income people. That goal would be lost if the law was repealed. The Republicans, of course, have no plans for covering the uninsured beyond assuming they can use emergency rooms, leaving the problem to the states.

MEDICARE Mr. Romney has misrepresented what would happen to both current beneficiaries and future generations under his proposals. He says his plans would have no effect on people now on Medicare or nearing eligibility. But if he succeeded in repealing the reform law, which has many provisions that hold down costs for Medicare enrollees, most beneficiaries would see their annual premiums and cost-sharing go up. The average beneficiary in traditional Medicare would pay about $5,000 more through 2022, and heavy users of prescription drugs about $18,000 more over the same period, if the act is repealed, according to the Department of Health and Human Services. Department of Health and Human Services.

Mr. Romney also argues that the reform law will weaken Medicare because it cuts some $716 billion from future Medicare spending by slowing the rate of increase over the next decade. Of course, that is essentially the same amount of Medicare cuts in Mr. Ryan’s budget resolutions, approved this year and last year by House Republicans.

The reform law justifiably reduces the excessive subsidies to private plans (known as Medicare Advantage) that enroll many beneficiaries. It also lowers the annual rate of increase in payments to providers, like hospitals, nursing homes and home care agencies, to force them to become more efficient. Mr. Romney wants to keep overpaying the plans and providers simply to pander to elderly voters.

For future generations, the Romney-Ryan ticket would turn Medicare into a premium-support — or voucher — program in which the federal government provides a fixed amount of money to beneficiaries each year and allows it to grow by a small amount annually, which may not keep pace with medical costs. The whole point of turning to vouchers is to reduce federal spending on Medicare, so it seems likely that many beneficiaries would end up worse off than now. (At the vice-presidential debate, Mr. Ryan tried to pretend his premium-support proposal was bipartisan, but the sole Democrat who backed an early version — Senator Ron Wyden of Oregon — has disavowed his plan.)

Mr. Romney and Mr. Ryan insist that the magic of competition among health insurers — both private plans and a public option like Medicare — will bring down premiums. But if competition fails to do that, beneficiaries would almost certainly get socked with added payments or fewer benefits.

They say that lower-income beneficiaries would get more-generous premium support and wealthier individuals would receive less support. But, of course, they provide no numbers on what those support levels might be.

MEDICAID The Republicans want to repeal the reform law’s expansion of Medicaid to cover millions of low- and middle-income people and instead shrink federal funding by turning Medicaid into a block grant. States would be given a fixed amount of money equal to what they had been getting in federal payments for Medicaid, and that grant would then grow at a rate tied to inflation. If those increases failed to keep up with medical costs, states — faced with the necessity of balancing their budgets every year — would probably have to cut enrollments or benefits or payments to providers. That could include cuts to coverage for long-term and nursing home care that millions depend on.

The block grant proposal in Mr. Ryan’s budget resolution would reduce federal Medicaid payments to the states by more than $800 billion over 10 years and would cut federal funding by a third in 2022, according to the Center on Budget and Policy Priorities. Mr. Romney blithely said that if a state got into trouble “Why, we could step in and see if we could find a way to help them.” Or maybe not. It’s another of those vague promises.

This article has been revised to reflect the following correction:

Correction: October 21, 2012

An earlier version of this editorial misstated the additional amounts Medicare beneficiaries would pay if the health care reform act is repealed. The average beneficiary would pay about $5,000 more through 2022, not $4,200 more over the 2011-2012 period. Heavy prescription drug users, on average,
would pay about $18,000 more through 2022, not $16,000 more over 2011-2012.

    Twisting the Facts About Health Care, NYT, 20.10.2012,
    http://www.nytimes.com/2012/10/21/opinion/sunday/the-republican-ticket-twists-the-facts-about-health-care.html

Lapses at Big Drug Factories Add to Shortages and Danger

October 17, 2012
The New York Times
By KATIE THOMAS

Weevils floating in vials of heparin. Morphine cartridges that contain up to twice the labeled dose. Manufacturing plants with rusty tools, mold in production areas and — in one memorable case — a barrel of urine.

These recent quality lapses at big drug companies show that contamination and shoddy practices extend well beyond the loosely regulated compounding pharmacies that have attracted attention because of their link to an outbreak of meningitis.

In the last three years, six of the major manufacturers of sterile injectable drugs — which are subject to rigorous inspections by the federal government, as opposed to compounding pharmacies, which are generally overseen by the states — have been warned by the Food and Drug Administration about serious violations of manufacturing rules. Four of them have closed factories or significantly slowed production to fix the problems. Nearly a third of the industry’s manufacturing capacity is off line because of quality issues, according to a Congressional report.

The shutdowns have contributed to a shortage of critical drugs, and compounding pharmacies have stepped into the gap as medical professionals scramble for alternative sources. But several serious health scares have been traced to compounding pharmacies in recent years. Authorities said 19 people had died from meningitis in an outbreak traced to a contaminated steroid made by the New England Compounding Center in Massachusetts. Supplies of the steroid, methylprednisolone acetate, became short earlier this year after two generic manufacturers, Teva and Sandoz, stopped making it.

“In the industry, everyone knows that all of the factories are in terrible shape,” said Erin Fox, manager of the Drug Information Service at the University of Utah, which tracks drug shortages. But the public, she said, is still in the dark. “I think people think this is a foreign outsourcing problem, but these factories are in our own country.”

Regulators and manufacturers note that most sterile injectable drugs — products like chemotherapy drugs and anti-seizure drugs like diazepam — sold in the United States are safe and of high quality. Still, several industry observers and former plant employees said that the recent quality issues were troubling and that manufacturers had been reluctant to fix problems because stopping production was simply too costly in a business where profits were driven by volume. Many basic drugs sell for less than a dollar a vial and are made in batches of tens of thousands of vials, run on lines that can operate up to 24 hours at a time.

Manufacturers reject descriptions of their factories as deteriorating and say they are investing hundreds of millions of dollars to make improvements.

“When you read and or hear different people in the industry saying that these are old, dilapidated, rundown facilities — absolutely not true,” said David Gaugh, a senior vice president for the Generic Pharmaceutical Association, an industry trade group. Mr. Gaugh was previously vice president and general manager for Bedford Laboratories, a unit of the manufacturer Ben Venue. He likened some of the older, 1970s-era plants to vintage Camaros or Mustangs, noting that while some old cars are indeed falling apart, others are tended with pride.

“That’s what these facilities are,” Mr. Gaugh said. “They’re maintained muscle cars.”

The manufacturing process garnered more attention in 2009, when Dr. Margaret Hamburg took over as commissioner of the F.D.A. and pledged to get tougher on plant inspections. That year, the F.D.A. cited Teva, the large generic drug maker, for several violations at its injectable drug plant in Irvine, Calif., including that it had failed to catch bacterial contamination of propofol, the anesthesia drug, before it left the factory.

Hospira, the leading manufacturer of injectable drugs, has been a major target of quality complaints. Since 2009, federal regulators have outlined failures in quality control at its plants in North Carolina, California and Costa Rica, leading to several major recalls of products as diverse as faulty infusion pumps and overfilled morphine vials. The company has slowed production at its largest factory in Rocky Mount, N.C., which had the most extensive problems.

Hospira’s manufacturing issues became public months after the company began in 2009 a two-year initiative called Project Fuel, designed to save more than $100 million a year by, for example, shrinking the work force 10 percent.

Critics, including a group of shareholders who have filed a lawsuit against Hospira, claim that Project Fuel led to deep cuts in quality control, including the dismissal of seasoned employees and the failure to maintain equipment. In comments to investors last year, a Hospira executive acknowledged the company had gotten “a little lazy” and was “skating behind the puck.”

Stacey Eisen, a Hospira spokeswoman, said the company supported the F.D.A.’s recent focus on manufacturing quality. “We support the agency in this respect, as we, too, consider the quality of our products to be of paramount importance, and we’re working closely with the agency on all aspects of our quality efforts,” Ms. Eisen said. She said Project Fuel was not about cost-cutting but about reducing complexity across the company and improving productivity.

Late last year, Ben Venue, a division of the German drug maker Boehringer Ingelheim, shut its plant in Bedford, Ohio, after the F.D.A. visited the facility. Agency inspectors reported rusty tools, mold and a barrel of an “unknown liquid” later determined to be urine; the report did not make it clear what the barrel was doing there. Three other companies that make injectable drugs — Sandoz, Luitpold Pharmaceuticals and A.P.P. Pharmaceuticals — have also received warning letters. Earlier this year, Sandoz slowed production at a plant in Quebec to fix problems identified by the agency. All the companies said they took quality seriously and were either working with the agency to address its concerns or had already resolved the issues.

In a particularly vivid lapse, agency inspectors cited the failure to investigate a number of reported problems at A.P.P.’s plant outside of Buffalo, including complaints of human hair and fungal growth in vials.

One former supervisor at the plant said his managers were reluctant to stop the production lines. “It’s like trying to fix your car when you’re driving down the Thruway,” said the former employee, who was recently terminated and said he did not want to be identified because he feared retaliation. Managers ordered shortcuts that compromised quality, he said, and skimped on cleaning to shorten the turnaround time between batches. Afterward, centipedes and spiders were spotted in manufacturing areas, he said.

F.D.A. inspectors cited internal reports of infestations, including a spider and weevils inside vials.

Matthias Link, a spokesman for Fresenius Kabi, the German drug maker that owns A.P.P., said the company was committed to making high-quality medicines and was addressing the inspectors’ concerns. He said Fresenius Kabi had already planned to spend $38 million on improving and expanding the plant before the agency’s warning letter.

The F.D.A. says it has stepped up its efforts to work with manufacturers, hosting conferences to exchange ideas and starting a program with its European counterpart about expectations.

Many of the manufacturers are spending hundreds of millions of dollars to address the problems. Ben Venue has spent more than $300 million to upgrade its factory in Ohio and is opening a new plant that will manufacture cancer drugs. It said on Tuesday that it had resumed some production.

Hospira, whose chief executive has likened its remediation process to “draining the swamp,” expects to spend up to $375 million to address the agency’s concerns. Teva has reopened its factory in Irvine, though it has not yet resumed full production.

The investments are real, said Dr. Sandra Kweder, deputy director of the F.D.A.’s Office of New Drugs. “I would say we are encouraged,” she said. “But we also know it takes three to five years to get one of these plants up and running.”

    Lapses at Big Drug Factories Add to Shortages and Danger, NYT, 17.10.2012,
    http://www.nytimes.com/2012/10/18/business/drug-makers-stalled-in-a-cycle-of-quality-lapses-and-shortages.html

A New Painkiller Crackdown Targets Drug Distributors

October 17, 2012
The New York Times
By BARRY MEIER

A local druggist in Newport Beach, Calif., never expected that the federal government’s recent crackdown on distributors of prescription painkillers would ensnare him.

But in June, Cardinal Health, a major distributor, abruptly cut off his supplies of narcotics like OxyContin and Percocet. A few months earlier, the Drug Enforcement Administration had accused Cardinal of ignoring signs that some pharmacies in Florida that it supplied with such drugs might be feeding street demand for them.

Cardinal told the druggist, Michael Pavlovich, that the volume of pain drugs and other controlled medications he was dispensing was too high, a situation he said was explainable. His pharmacy specializes in pain patients, he said. Still, it took weeks for Cardinal to start supplying him again, and even then, it limited its shipments to about 15 percent of his previous orders. As a result, Mr. Pavlovich said, many of his patients had to go elsewhere to get prescriptions filled.

“We have to convince them that our dispensing is legitimate,” he said of his dealings with Cardinal.

Cardinal’s crackdown on Mr. Pavlovich was a sign of a new approach by the D.E.A. to stem the growing misuse and abuse of painkillers. In the last decade, the agency has tried a variety of tactics with limited success, from arresting hundreds of doctors to closing scores of pharmacies. Now, it and other agencies are moving up the pharmaceutical food chain, putting pressure on distributors like Cardinal, which act as middlemen between drug makers and the pharmacies and doctors that dispense painkillers.

In response, the distributors are scrambling to limit their liability by more closely monitoring their distribution pipelines and cutting off some customers.

Since January, for example, Cardinal has cut ties with a dozen pharmacies in states including Arizona, California, Nevada and Oklahoma, interviews and court records show. In doing so, the wholesaler, which is based in Columbus, Ohio, cited audits suggesting that people seeking to buy prescription drugs illegally might have targeted the store in question.

Several of the affected drugstores sued Cardinal unsuccessfully to resume supplies, but documents filed in those actions show that until recently, the wholesaler shipped large volumes of pain pills to the stores for months, if not years.

George S. Barrett, Cardinal’s chairman and chief executive, said the company had tightened the criteria it used in determining whether to sell narcotics to a pharmacy. In May, Cardinal settled the action brought by the D.E.A. in connection with its Florida sales by agreeing to suspend shipments of controlled drugs, like narcotics, from a facility in that state for two years. It could also face a significant fine.

“We had a strong antidiversion system in place, but no system is perfect,” Mr. Barrett said. Among other steps, the company said it had created a special committee to regularly evaluate pharmacies that order high volumes of narcotic drugs.

Another major distributor, AmerisourceBergen, recently disclosed that it faces a federal criminal inquiry into its oversight of painkiller sales. And in June, West Virginia officials filed a lawsuit against 14 drug distributors, including Cardinal and AmerisourceBergen, charging that they had fed illicit painkiller use in that state. The companies have denied wrongdoing.

D.E.A. officials have heralded the Cardinal action as the forerunner of a more aggressive approach to the painkiller problem. But critics say that for years, the agency did little to scrutinize distributors who were making tens of millions of dollars from the prescriptions generated by pain clinics in Florida, Ohio and other states. These facilities, often described as “pill mills,” employed doctors who wrote narcotics prescriptions after cursory examinations of patients.

“In the case of West Virginia, they have done nothing,” said a lawyer in Charleston, James M. Cagle, who is working on the state’s action against distributors.

The drug distribution system is a sprawling one that involves about 800 companies, which range in size from a few giants like Cardinal to hundreds of small firms. For wholesalers, the markup on medications can be small, sometimes a few pennies a pill. But with billions of pills sold annually, the profits can be big. Narcotic painkillers are now the most widely prescribed drugs in the United States, with sales last year of $8.5 billion.

This is not the first time the industry has faced scrutiny. In 2008, Cardinal paid $34 million to settle charges that it failed to alert the D.E.A. to suspicious orders for millions of pain pills that it was shipping to Internet pharmacies — operations that for years supplied the illicit market. The same year, another big distributor, McKesson, paid $13 million to settle similar charges. As part of the agreements, both companies denied wrongdoing.

Executives like Mr. Barrett of Cardinal say that it is often difficult for a distributor to tell whether a pharmacy or a doctor is serving legitimate pain patients or supplying illicit drug demand. And distributors have long complained that the D.E.A. has never issued specific guidelines for when they should stop shipping to a customer.

But agency officials say that wholesalers know about the red flags. For example, the agency charged that Cardinal was selling 50 times the amount of pain pills containing the narcotic oxycodone, the active ingredient in OxyContin and other drugs, to its four top pharmacy customers in Florida than it was supplying to the average drugstore in that state.

Cardinal failed to scrutinize such sales, the agency said, even violating the safeguards it promised to put in place when it agreed to settle the government charges in connection with its supplying of Internet pharmacies. “Everyone is making a large amount of money on these drugs,” said Joseph T. Rannazzisi, a deputy assistant administrator of the D.E.A. division that oversees legal drugs, like painkillers.

The D.E.A. is able to track where painkillers are going because distributors regularly file reports detailing their shipments to customers. But just how aggressively the agency uses that data is anyone’s guess.

An agency employee, Michelle Cooper, testified last year that she had attended a training session at which instructors described how investigators like her could use the database to identify suspicious distributors. In doing so, they pointed to data showing that a distributor had suddenly started shipping large and growing volumes of pain pills to Florida drugstores.

It was only later that Ms. Cooper discovered that the case involved a real distributor, not a hypothetical one, and that the company was still making those shipments despite the agency’s apparent awareness of them.

“I didn’t believe the numbers they were showing us were real,” she said. “I thought it was for training purposes.”

Ms. Cooper subsequently investigated the company, Keysource Medical, which agreed last year to give up its license to distribute narcotic drugs.

Faced with Congressional pressure, agency officials like Mr. Rannazzisi have said that they are increasing the ranks of investigators like Ms. Cooper, and that they provide distribution data to state officials when local authorities request it as part of an investigation.

But state officials say it would be more helpful to get that data routinely so they can act more quickly against rogue clinics and pharmacies. For years, Ohio law enforcement authorities did not know which distributors were supplying the many pill mills operating in the state, one official said. If the D.E.A. had supplied that information, “we would have known about the number of shipments going into Ohio and where they were going,” said Aaron Haslam, an assistant state attorney general.

Also, while the D.E.A. brings actions against distributors like Cardinal for failing to notify the agency of a “suspicious order” from a pharmacy or other customer, it does not share those reports with officials in the state where the pharmacy is based.

In response to a request from The New York Times, the agency even declined to disclose the number of such reports it received annually. A spokeswoman, Barbara Carreno, said in a statement that the agency considered such statistics “law enforcement sensitive” information, but she did not elaborate.

The Times has filed a Freedom of Information Act request seeking that data.

    A New Painkiller Crackdown Targets Drug Distributors, NYT, 17.10.2012,
    http://www.nytimes.com/2012/10/18/business/to-fight-prescription-painkiller-abuse-dea-targets-distributors.html

Barbara Blum,

Who Rescued Abused Willowbrook Residents,

Dies at 82

October 10, 2012
The New York Times
By DOUGLAS MARTIN

Barbara Blum, a former high-ranking social services official who found homes for hundreds of mentally disabled people after their mistreatment at the Willowbrook State School on Staten Island became a national scandal in the 1970s, died on Saturday in Albany. She was 82.

The cause was congestive heart failure, her son Thomas said.

Ms. Blum was New York State’s social services commissioner from 1977 to 1982, and she earlier worked for Mayor John V. Lindsay’s administration, leading a task force on mental health and retardation and overseeing services for disadvantaged children. But perhaps her most visible impact was made in rescuing abused Willowbrook residents by finding them safe places to live in group homes.

The deplorable conditions at Willowbrook, a state-run institution, seized the nation’s attention in 1972, when Geraldo Rivera, then a reporter for WABC-TV in New York, put a spotlight on them, showing children lying naked on the floor, their bodies contorted, their feces spread on walls. His reports were broadcast nationally. More than 5,400 people lived on the Willowbrook campus, making it the biggest state-run institution for mentally disabled people in the United States.

Willowbrook residents and their parents, aided by civil libertarians and mental health advocates, sued New York State to prevent further deterioration and to establish that residents had a constitutional right to treatment. The state settled with the plaintiffs and signed a court decree in April 1975 promising to improve conditions at Willowbrook and to transfer residents to new homes.

Ms. Blum, a state social services official at the time, was placed in charge of the Metropolitan Placement Unit, set up to find homes for the residents in what would be, at the time, the largest placement of mentally disabled people in the nation’s history. The decree ordering the “deinstitutionalization,” which had become a national trend, called for all but 250 of the residents to be placed in group homes or foster care by 1981.

The task promised to be daunting. There were no community organizations trained in performing such a transfer, and many established social services groups refused to participate, doubting that the task could be done at all, much less on time.

Others had turned down the job, and Ms. Blum later expressed suspicion that Gov. Hugh L. Carey’s aides had chosen her to lead the unit, a largely autonomous body, so that she would be the scapegoat if the effort failed.

“There seemed to be a kind of precipitous desire to see that I was there for the court,” she said in an interview for the 1984 book “The Willowbrook Wars,” by David and Sheila Rothman.

As it happened, logistical and legal difficulties delayed the emptying of Willowbrook until 1987. But working with Roman Catholic and black community organizations, Ms. Blum found more than 100 homes for more than 1,000 Willowbrook residents despite meeting intense opposition in neighborhoods; in some instances, she was pelted with eggs, and her nose was broken.

To Ms. Blum, the assignment was also a personal mission. Her second son, Jonathan, was profoundly affected by autism.

Barbara Jean Rebecca Bennett was born on Jan. 18, 1930, in Beaver, Pa. She graduated from Vassar College as a mathematics major. In 1951, she married Robert R. Blum, who survives her. In addition to her sons Thomas and Jonathan, she is also survived by her son Stephen; a daughter, Jennifer Weinschenk; and five grandchildren.

Robert Blum, a former Olympic fencer, became an aide to Mr. Lindsay, first in Congress and then at City Hall. Mr. Blum frequently told Mr. Lindsay how hard it was to find help for Jonathan. He and his wife had banded together with other parents to start their own nursery school and an organization to lobby for mentally disabled people. One of the mayor’s first official acts was to appoint Ms. Blum to the New York City Community Mental Health Board.

She went on to a number of city government posts, including as deputy commissioner for mental health and mental retardation services, commissioner for special services to children and director of a council on child welfare that encompassed 50 city agencies.

In 1973, she was named assistant executive director of the state’s social welfare board. In 1975, she was given the additional job of heading the Metropolitan Placement Unit. In 1977, Governor Carey appointed her commissioner of the State Department of Social Services.

In later years, among other positions, she was a senior fellow at the Columbia University Mailman School of Public Health.

Six years after the last residents left Willowbrook, its buildings became a campus of the College of Staten Island.

Jonathan Blum has lived for years in a group home in Brooklyn, where, his brother Thomas said, he has achieved a regular schedule of walks, exercise and going to the store to buy a soda.

    Barbara Blum, Who Rescued Abused Willowbrook Residents, Dies at 82, NYT, 10.10.2012,
    http://www.nytimes.com/2012/10/11/nyregion/barbara-blum-who-rescued-abused-willowbrook-residents-dies-at-82.html

After a Meningitis Death, Family Members Ask Why

October 10, 2012
The New York Times
By DENISE GRADY

BRENTWOOD, Tenn. — Diana Reed tried massage and acupuncture, but neither eased her neck pain. She may have injured herself while helping her husband, Wayne, who has Lou Gehrig’s disease, in and out of his wheelchair.

“Diana kind of became Wayne’s arms, legs and voice,” her brother, Bob Bergeson, said.

Mrs. Reed, 56, a healthy, vigorous woman who ran or swam every day, decided to try a series of epidural steroid injections for her neck trouble. She had been laid off from her job at a nonprofit group and wanted the treatments before her health insurance ran out.

It was a decision that ended her life. She died on Oct. 3, one of more than 130 people to have contracted meningitis in a national outbreak from a tainted drug used in spinal injections for back and neck pain. So far, 12 have died.

The drug has been recalled, but still more people are likely to become ill in the coming weeks, because the incubation period can be longer than a month. About 13,000 people injected with the drug are anxiously waiting to see if symptoms develop. The product is a steroid called methylprednisolone, which was contaminated with one or more types of fungus. It was made by a pharmacy in Massachusetts, the New England Compounding Center, and shipped to 23 states.

The company has shut down, and Massachusetts health officials said Wednesday that they had extended their investigation to Ameridose, another drug manufacturer in the state that is partly owned by Barry Cadden, who was the chief pharmacist at New England Compounding.

Mr. Cadden surrendered his pharmacy license this week, state officials said. Massachusetts has just five inspectors for more than a thousand compounding pharmacies that make drugs.

Mrs. Reed’s family members said they were still in shock. Other than having a sore neck, she had been in perfect health. “Why did she die?” her husband asked.

Other families are asking the same question. But for Mr. Reed, it is particularly daunting. He has had amyotrophic lateral sclerosis since 1987. It attacks the nerves that control voluntary muscles and is often fatal within a few years, but Mr. Reed — like the physicist Stephen Hawking — has a rare form that worsens more slowly. Mr. Reed, an accountant, has been using a wheelchair for about six years, but he still has some use of his hands and arms, and can hold his head up and sit erect in a chair. He speaks with effort, although he can be hard to understand. But his mind, like Dr. Hawking’s, has not been affected by the disease.

The Reeds were in it together, working and raising two sons. “The last thing they ever wanted was pity from anybody,” said Mr. Bergeson, her brother.

Mrs. Reed would help her husband get in and out of bed, the shower and his wheelchair. She became instrumental in his accounting business, speaking with clients more and more as his speech deteriorated.

Gary Reed, Mr. Reed’s brother, said that Wayne, an athlete in college, was ferociously independent and for a long time refused the wheelchair despite several falls that resulted in cuts and broken bones.

Members of the Reeds’ congregation at the Otter Creek Church in Brentwood have been bringing meals and doing laundry. And while his brother and brother-in-law have been helping Mr. Reed with his personal care, they both have to get back to their jobs in other states. They have talked of hiring help, but Mr. Reed’s finances are already so tight that the church has set up a fund that is accepting donations to help him.

“We’re trying to figure out how we go forward from here, how to get Wayne into some kind of routine where he can maintain his dignity and keep his work together,” Mr. Bergeson said.

Mrs. Reed began receiving the steroid injections on Aug. 21 at the St. Thomas Outpatient Neurosurgery Center in Nashville. A total of three were scheduled, one every two weeks. She felt pain and nausea for a full day after the first two injections, her brother said, and she was not sure if they were helping. She considered postponing the third, but decided to go ahead with it, still worried about finishing the treatment while she had insurance.

A few days after the last treatment, she began having headaches. They continued for a few days, and Mr. Reed, increasingly concerned, kept asking her if she wanted to see a doctor. When she finally said yes, in the early hours of Sept. 23, Mr. Reed said, “I knew it was time.”

He called one of their sons to take her to the emergency room at St. Thomas. Doctors quickly diagnosed meningitis.

For a few days, she seemed stable. Her biggest worry was how her husband was doing; a son was staying with him, and she thought she would be home in a few days. But then she took a turn for the worse: her speech began to slur and she had trouble seeing. She had had a stroke. The next day, her brother said, “she was speaking gibberish, and very agitated.” A day later, she was in a coma.

An M.R.I. scan on Oct. 1 showed extensive brain damage. Her doctor said she could be kept alive, but would remain in a vegetative state. It was unfathomable, Mr. Reed said. He asked repeatedly if there was some alternative, anything that could be done. “I asked the doctor if there was any way she might survive as a halfway normal human being,” he said.

When it became clear that the answer was no, he did not hesitate. He knew what she would want. Life support was withdrawn, and Mrs. Reed died two days later, surrounded by family and friends. A thousand people packed the Otter Creek Church for her funeral. Among the mourners were alumni of a child care and learning center for inner-city preschoolers that the Reeds had founded.

An autopsy was performed at St. Thomas Hospital; the family requested that an outside pathologist be present as a neutral observer. The preliminary findings, Gary Reed said, found signs of a fungal infection both at the injection site and in Mrs. Reed’s brain. The family is requesting her medical records, and Mr. Reed has consulted a lawyer, but he said he did not know yet whether he would file a lawsuit.

On Wednesday, family and friends shared their memories of Mrs. Reed. She made everyone laugh, they said. She read voraciously and loved even the smell of books. She told you just what she thought — whether you wanted to hear it or not. She would look into your eyes and see your soul, said her close friend Pat Ward.

Mr. Bergeson, his voice breaking, said, “It is very difficult for me to accept that my sister is gone for what could possibly be a very dumb reason.”

Sabrina Tavernise contributed reporting from Boston.

    After a Meningitis Death, Family Members Ask Why, NYT, 10.10.2012,
    http://www.nytimes.com/2012/10/11/health/after-a-meningitis-death-loved-ones-ask-why.html

Attention Disorder or Not, Pills to Help in School

October 9, 2012
The New York Times
By ALAN SCHWARZ

CANTON, Ga. — When Dr. Michael Anderson hears about his low-income patients struggling in elementary school, he usually gives them a taste of some powerful medicine: Adderall.

The pills boost focus and impulse control in children with attention deficit hyperactivity disorder. Although A.D.H.D is the diagnosis Dr. Anderson makes, he calls the disorder “made up” and “an excuse” to prescribe the pills to treat what he considers the children’s true ill — poor academic performance in inadequate schools.

“I don’t have a whole lot of choice,” said Dr. Anderson, a pediatrician for many poor families in Cherokee County, north of Atlanta. “We’ve decided as a society that it’s too expensive to modify the kid’s environment. So we have to modify the kid.”

Dr. Anderson is one of the more outspoken proponents of an idea that is gaining interest among some physicians. They are prescribing stimulants to struggling students in schools starved of extra money — not to treat A.D.H.D., necessarily, but to boost their academic performance.

It is not yet clear whether Dr. Anderson is representative of a widening trend. But some experts note that as wealthy students abuse stimulants to raise already-good grades in colleges and high schools, the medications are being used on low-income elementary school children with faltering grades and parents eager to see them succeed.

“We as a society have been unwilling to invest in very effective nonpharmaceutical interventions for these children and their families,” said Dr. Ramesh Raghavan, a child mental-health services researcher at Washington University in St. Louis and an expert in prescription drug use among low-income children. “We are effectively forcing local community psychiatrists to use the only tool at their disposal, which is psychotropic medications.”

Dr. Nancy Rappaport, a child psychiatrist in Cambridge, Mass., who works primarily with lower-income children and their schools, added: “We are seeing this more and more. We are using a chemical straitjacket instead of doing things that are just as important to also do, sometimes more.”

Dr. Anderson’s instinct, he said, is that of a “social justice thinker” who is “evening the scales a little bit.” He said that the children he sees with academic problems are essentially “mismatched with their environment” — square pegs chafing the round holes of public education. Because their families can rarely afford behavior-based therapies like tutoring and family counseling, he said, medication becomes the most reliable and pragmatic way to redirect the student toward success.

“People who are getting A’s and B’s, I won’t give it to them,” he said. For some parents the pills provide great relief. Jacqueline Williams said she can’t thank Dr. Anderson enough for diagnosing A.D.H.D. in her children — Eric, 15; Chekiara, 14; and Shamya, 11 — and prescribing Concerta, a long-acting stimulant, for them all. She said each was having trouble listening to instructions and concentrating on schoolwork.

“My kids don’t want to take it, but I told them, ‘These are your grades when you’re taking it, this is when you don’t,’ and they understood,” Ms. Williams said, noting that Medicaid covers almost every penny of her doctor and prescription costs.

Some experts see little harm in a responsible physician using A.D.H.D. medications to help a struggling student. Others — even among the many like Dr. Rappaport who praise the use of stimulants as treatment for classic A.D.H.D. — fear that doctors are exposing children to unwarranted physical and psychological risks. Reported side effects of the drugs have included growth suppression, increased blood pressure and, in rare cases, psychotic episodes.

The disorder, which is characterized by severe inattention and impulsivity, is an increasingly common psychiatric diagnosis among American youth: about 9.5 percent of Americans ages 4 to 17 were judged to have it in 2007, or about 5.4 million children, according to the Centers for Disease Control and Prevention.

The reported prevalence of the disorder has risen steadily for more than a decade, with some doctors gratified by its widening recognition but others fearful that the diagnosis, and the drugs to treat it, are handed out too loosely and at the exclusion of nonpharmaceutical therapies.

The Drug Enforcement Administration classifies these medications as Schedule II Controlled Substances because they are particularly addictive. Long-term effects of extended use are not well understood, said many medical experts. Some of them worry that children can become dependent on the medication well into adulthood, long after any A.D.H.D. symptoms can dissipate.

According to guidelines published last year by the American Academy of Pediatrics, physicians should use one of several behavior rating scales, some of which feature dozens of categories, to make sure that a child not only fits criteria for A.D.H.D., but also has no related condition like dyslexia or oppositional defiant disorder, in which intense anger is directed toward authority figures. However, a 2010 study in the Journal of Attention Disorders suggested that at least 20 percent of doctors said they did not follow this protocol when making their A.D.H.D. diagnoses, with many of them following personal instinct.

On the Rocafort family’s kitchen shelf in Ball Ground, Ga., next to the peanut butter and chicken broth, sits a wire basket brimming with bottles of the children’s medications, prescribed by Dr. Anderson: Adderall for Alexis, 12; and Ethan, 9; Risperdal (an antipsychotic for mood stabilization) for Quintn and Perry, both 11; and Clonidine (a sleep aid to counteract the other medications) for all four, taken nightly.

Quintn began taking Adderall for A.D.H.D. about five years ago, when his disruptive school behavior led to calls home and in-school suspensions. He immediately settled down and became a more earnest, attentive student — a little bit more like Perry, who also took Adderall for his A.D.H.D.

When puberty’s chemical maelstrom began at about 10, though, Quintn got into fights at school because, he said, other children were insulting his mother. The problem was, they were not; Quintn was seeing people and hearing voices that were not there, a rare but recognized side effect of Adderall. After Quintn admitted to being suicidal, Dr. Anderson prescribed a week in a local psychiatric hospital, and a switch to Risperdal.

While telling this story, the Rocaforts called Quintn into the kitchen and asked him to describe why he had been given Adderall.

“To help me focus on my school work, my homework, listening to Mom and Dad, and not doing what I used to do to my teachers, to make them mad,” he said. He described the week in the hospital and the effects of Risperdal: “If I don’t take my medicine I’d be having attitudes. I’d be disrespecting my parents. I wouldn’t be like this.”

Despite Quintn’s experience with Adderall, the Rocaforts decided to use it with their 12-year-old daughter, Alexis, and 9-year-old son, Ethan. These children don’t have A.D.H.D., their parents said. The Adderall is merely to help their grades, and because Alexis was, in her father’s words, “a little blah.”

”We’ve seen both sides of the spectrum: we’ve seen positive, we’ve seen negative,” the father, Rocky Rocafort, said. Acknowledging that Alexis’s use of Adderall is “cosmetic,” he added, “If they’re feeling positive, happy, socializing more, and it’s helping them, why wouldn’t you? Why not?”

Dr. William Graf, a pediatrician and child neurologist who serves many poor families in New Haven, said that a family should be able to choose for itself whether Adderall can benefit its non-A.D.H.D. child, and that a physician can ethically prescribe a trial as long as side effects are closely monitored. He expressed concern, however, that the rising use of stimulants in this manner can threaten what he called “the authenticity of development.”

“These children are still in the developmental phase, and we still don’t know how these drugs biologically affect the developing brain,” he said. “There’s an obligation for parents, doctors and teachers to respect the authenticity issue, and I’m not sure that’s always happening.”

Dr. Anderson said that every child he treats with A.D.H.D. medication has met qualifications. But he also railed against those criteria, saying they were codified only to “make something completely subjective look objective.” He added that teacher reports almost invariably come back as citing the behaviors that would warrant a diagnosis, a decision he called more economic than medical.

“The school said if they had other ideas they would,” Dr. Anderson said. “But the other ideas cost money and resources compared to meds.”

Dr. Anderson cited William G. Hasty Elementary School here in Canton as one school he deals with often. Izell McGruder, the school’s principal, did not respond to several messages seeking comment.

Several educators contacted for this article considered the subject of A.D.H.D. so controversial — the diagnosis was misused at times, they said, but for many children it is a serious learning disability — that they declined to comment. The superintendent of one major school district in California, who spoke on the condition of anonymity, noted that diagnosis rates of A.D.H.D. have risen as sharply as school funding has declined.

“It’s scary to think that this is what we’ve come to; how not funding public education to meet the needs of all kids has led to this,” said the superintendent, referring to the use of stimulants in children without classic A.D.H.D. “I don’t know, but it could be happening right here. Maybe not as knowingly, but it could be a consequence of a doctor who sees a kid failing in overcrowded classes with 42 other kids and the frustrated parents asking what they can do. The doctor says, ‘Maybe it’s A.D.H.D., let’s give this a try.’ ”

When told that the Rocaforts insist that their two children on Adderall do not have A.D.H.D. and never did, Dr. Anderson said he was surprised. He consulted their charts and found the parent questionnaire. Every category, which assessed the severity of behaviors associated with A.D.H.D., received a five out of five except one, which was a four.

“This is my whole angst about the thing,” Dr. Anderson said. “We put a label on something that isn’t binary — you have it or you don’t. We won’t just say that there is a student who has problems in school, problems at home, and probably, according to the doctor with agreement of the parents, will try medical treatment.”

He added, “We might not know the long-term effects, but we do know the short-term costs of school failure, which are real. I am looking to the individual person and where they are right now. I am the doctor for the patient, not for society.”

    Attention Disorder or Not, Pills to Help in School, NYT, 9.10.2012,
    http://www.nytimes.com/2012/10/09/health/attention-disorder-or-not-children-prescribed-pills-to-help-in-school.html

How to Die

October 7, 2012
The New York Times
By BILL KELLER

ONE morning last month, Anthony Gilbey awakened from anesthesia in a hospital in the east of England. At his bedside were his daughter and an attending physician.

The surgery had been unsuccessful, the doctor informed him. There was nothing more that could be done.

“So I’m dying?” the patient asked.

The doctor hesitated. “Yes,” he said.

“You’re dying, Dad,” his daughter affirmed.

“So,” the patient mused, “no more whoop-de-doo.”

“On the other side, there’ll be loads,” his daughter — my wife — promised.

The patient laughed. “Yes,” he said. He was dead six days later, a few months shy of his 80th birthday.

When they told my father-in-law the hospital had done all it could, that was not, in the strictest sense, true. There was nothing the doctors could do about the large, inoperable tumor colonizing his insides. But they could have maintained his failing kidneys by putting him on dialysis. They could have continued pumping insulin to control his diabetes. He wore a pacemaker that kept his heart beating regardless of what else was happening to him, so with aggressive treatment they could — and many hospitals would — have sustained a kind of life for a while.

But the hospital that treated him offers a protocol called the Liverpool Care Pathway for the Dying Patient, which was conceived in the 90s at a Liverpool cancer facility as a more humane alternative to the frantic end-of-life assault of desperate measures. “The Hippocratic oath just drives clinicians toward constantly treating the patient, right until the moment they die,” said Sir Thomas Hughes-Hallett, who was until recently the chief executive of the center where the protocol was designed. English doctors, he said, tell a joke about this imperative: “Why in Ireland do they put screws in coffins? To keep the doctors out.”

The Liverpool Pathway brings many of the practices of hospice care into a hospital setting, where it can reach many more patients approaching death. “It’s not about hastening death,” Sir Thomas told me. “It’s about recognizing that someone is dying, and giving them choices. Do you want an oxygen mask over your face? Or would you like to kiss your wife?”

Anthony Gilbey’s doctors concluded that it was pointless to prolong a life that was very near the end, and that had been increasingly consumed by pain, immobility, incontinence, depression and creeping dementia. The patient and his family concurred.

And so the hospital unplugged his insulin and antibiotics, disconnected his intravenous nourishment and hydration, leaving only a drip to keep pain and nausea at bay. The earlier bustle of oxygen masks and thermometers and blood-pressure sleeves and pulse-taking ceased. Nurses wheeled him away from the wheezing, beeping machinery of intensive care to a quiet room to await his move to “the other side.”

Here in the United States, nothing bedevils our discussion of health care like the question of when and how to withhold it. The Liverpool Pathway or variations of it are now standard in most British hospitals and in several other countries — but not ours. When I asked one American end-of-life specialist what chance he saw that something of the kind could be replicated here, the answer was immediate: “Zero.” There is an obvious reason for that, and a less obvious reason.

The obvious reason, of course, is that advocates of such programs have been demonized. They have been criticized by the Catholic Church in the name of “life,” and vilified by Sarah Palin and Michele Bachmann in the pursuit of cheap political gain. “Anything that looks like an official protocol, or guideline — you’re going to get death-paneled,” said Dr. Ezekiel Emanuel, the bioethicist and expert on end-of-life care who has been a target of the rabble-rousers. (He is also a contributing opinion writer for The Times.) Humane end-of-life practices have quietly found their way into cancer treatment, but other specialties lag behind.

The British advocates of the Liverpool approach have endured similar attacks, mainly from “pro-life” lobbyists who portray it as a back-door form of euthanasia. (They also get it from euthanasia advocates who say it isn’t euthanasia-like enough.) Surveys of families that use this protocol report overwhelming satisfaction, but inevitably in a field that touches families at their most emotionally raw, and that requires trained coordination of several medical disciplines, nursing and family counseling, the end is not always as smooth as my father-in-law’s.

The less obvious problem, I suspect, is that those who favor such programs in this country often frame it as a cost issue. Their starting point is the arresting fact that a quarter or more of Medicare costs are incurred in the last year of life, which suggests that we are squandering a fortune to buy a few weeks or months of a life spent hooked to machinery and consumed by fear and discomfort. That last year of life offers a tempting target if we want to contain costs and assure that Medicare and Medicaid exist for future generations.

No doubt, we have a crying need to contain health care costs. We pay more than many other developed countries for comparable or inferior health care, and the total bill consumes a growing share of our national wealth. The Affordable Care Act — Obamacare — makes a start by establishing a board to identify savings in Medicare, by emphasizing preventive care, and by financing pilot programs to pay doctors for achieving outcomes rather than performing procedures. But it is barely a start. Common sense suggests that if officials were not afraid of being “death-paneled,” we could save some money by withholding care when, rather than saving a life, it serves only to prolong misery for a little while.

But I’m beginning to think that is both questionable economics and bad politics.

For one thing, whatever your common sense tells you, there is little evidence so far that these guidelines do save money. Emanuel has studied the fairly sketchy research and concluded that, with the possible exception of hospice care for cancer patients, measures to eliminate futile care in dying patients have not proved to be significant cost-savers. That seems to be partly because the programs kick in so late, and partly because good palliative care is not free.

Even if it turns out that programs like the Liverpool Pathway save big money, promoting end-of-life care on fiscal grounds just plays into fears that the medical-industrial complex is rushing our loved ones to the morgue to save on doctors and hospital beds.

When I asked British specialists whether the Liverpool protocol cut costs, they insisted they had never asked the question — and never would.

“I don’t think we would dare,” said Sir Thomas. “There was some very nasty press here in this country this year about the Pathway, saying it was a way of killing people quickly to free up hospital beds. The moment you go into that argument, you might threaten the whole program.”

In America, nothing happens without a cost-benefit analysis. But the case for a less excruciating death can stand on a more neutral, less disturbing foundation, namely that it is simply a kinder way of death.

“There are lots of reasons to believe you could save money,” said Emanuel. “I just think we can’t do it for the reason of saving money.”

During Anthony Gilbey’s six days of dying he floated in and out of awareness on a cloud of morphine. Unfettered by tubes and unpestered by hovering medics, he reminisced and made some amends, exchanged jokes and assurances of love with his family, received Catholic rites and managed to swallow a communion host that was probably his last meal. Then he fell into a coma. He died gently, loved and knowing it, dignified and ready.

“I have fought death for so long,” he told my wife near the end. “It is such a relief to give up.”

We should all die so well.

    How to Die, NYT, 7.10.2012,
    http://www.nytimes.com/2012/10/08/opinion/keller-how-to-die.html

After Decades in Institutions, a Bumpy Journey to a New Life

September 29, 2012
The New York Times
By RACHEL L. SWARNS

MILLEDGEVILLE, Ga. — On his last day in the state hospital, Wally Burns pulled on a new pair of plaid shorts and a neatly pressed polo shirt. He savored a final meal of eggs and grits, apple juice and milk, toast and a sweet doughnut stick.

“You have a new home now,” his attendant told him, reminding him of the big move only hours away. “We hope you’ll like it.”

Mr. Burns’s blue eyes wandered as he listened in silence. He has not spoken a single word since he was 5 years old.

For more than three decades, he has lived here at Central State Hospital, known in its darkest days as the home of the psychotic, the manic and the hopeless. For generations, invalids here have sipped life through feeding tubes, grown men with the minds of children have hummed tuneless melodies and patients tormented by delusions have banged their bodies against the walls with wordless screams.

No one dreamed that Mr. Burns would ever leave. He is severely mentally retarded and his doctors and parents assumed he would spend his final years here. Instead, Mr. Burns, who is 51, was preparing for something utterly unexpected: a life beyond the hospital walls.

“You ready to move?” a hospital coordinator asked Mr. Burns, who was hunched in his chair, seemingly oblivious to the question. “You ready?”

Once viewed as outcasts to be shunned and isolated in institutions, hundreds of Georgia’s most disabled citizens are taking their first tentative steps back into society. Their fledgling journeys, marked by uncertainty, jubilation and some setbacks, are unfolding as officials embark on an ambitious plan to profoundly reshape the lives of the cognitively and physically impaired.

It is a new strategy for Georgia, one of several states responding to mounting pressure from the Justice Department, which in recent years has threatened legal action against states accused of violating the civil rights of thousands of developmentally disabled people by needlessly segregating them in public hospitals, nursing homes and day programs.

Mississippi, which has nearly 2,000 developmentally disabled people living in its institutions, began moving dozens of them out this spring. Virginia, which reached a settlement with the Justice Department this year, expects to move more than 400 people out by the end of the 2016 fiscal year.

Here in Georgia, about 360 developmentally disabled patients have left state hospitals over the past two years, health officials say, moving mostly into small group homes that house four people each. About 400 more will leave over the next three years, nearly emptying the state’s institutions of people with severe mental disabilities, autism and dementia.

Advocates for the disabled are hailing the move as akin to the demise of racial segregation. For the first time, people who have spent decades in hospital wards will live in the community, have some say in their day-to-day activities and get the opportunity to meet and mingle with their neighbors.

“Everybody has a right to live in the world,” said Pat Nobbie, deputy director of the Georgia Council on Developmental Disabilities, who supports the shift.

But the transition has also been fraught with anxiety. Over the years, most of the patients have been middle-aged and older, with little memory of their childhoods outside the institution. And many of their relatives — who viewed the hospital as a safe haven, not a prison — greeted the decision to move them with fear and outrage.

Some advocates for the disabled worry that people once warehoused in public hospitals will simply be warehoused in group homes, which in some instances have become nests of abuse and neglect in places like New York.

Georgia officials say they are expanding the network of community services to support the newly discharged patients, to ensure that they do not end up on the streets or back in a hospital.

Elizabeth Jones, the court-appointed monitor charged with overseeing the discharge process, commended the state for its efforts, saying officials had moved people into the community more quickly than expected. But she warned that most discharged patients were still living segregated lives, spending their time with other disabled clients in the group homes and in day programs.

She also warned that some people had ended up in unsanitary homes with inadequate staffing and programming, a problem that state officials say they have taken quick action to correct.

“We are proud of this process,” said Frank W. Berry, head of the state’s Department of Behavioral Health and Developmental Disabilities. “We also know there are very important areas where we need to improve.”

A Family’s Anxiety

Becky Burns, Mr. Burns’s mother, wept for days when she learned of the impending move. She and her husband adore their son, who loves children’s puzzles, fried chicken and long drives in the family’s Suzuki S.U.V. But hospital officials said he has the intellectual capacity of a child, makes himself vomit when he is anxious and picks at his skin until it bleeds.

“We’re too old to look after him now,” said Mrs. Burns, who is 71 and whose husband, Wallace Sr., has been incapacitated by a stroke.

She begged hospital officials to help her find a safe, clean place for her son and nearly despaired when the options she was offered were group homes in crime-ridden neighborhoods. It was only when she met the welcoming staff at the Advocacy Resource Center, known as Arc of Macon, a nonprofit group that was building a new group home just 20 minutes from her house, that she warmed to the change.

On moving day, Mrs. Burns sat down at a conference table here at Central State Hospital with her brother, Charles Massey Jr., and nearly a dozen hospital staff members and officials from the Arc of Macon to review the details of her son’s care.

A doctor went over all of Mr. Burns’s ailments and medications (Fosamax for osteoporosis, Keppra for seizures, Prevacid to prevent vomiting) and described his challenging behaviors.

“Don’t make him nervous,” the doctor warned. “He vomits right away.”

Mr. Burns huddled in a pink plastic chair in a corner of the conference room as the conversation ebbed and flowed around him. Eyes downcast, he rolled and unrolled a blank piece of paper as his mother proudly described how he would have his own room for the first time.

He would have a new bedroom set and home-cooked meals, the trappings of an ordinary life. She reminded the hospital officials not to forget his favorite shorts, the ones with the elastic waists — “That’s been packed, Mrs. Burns,” they reassured her — and the medals he had won for walking and running in the Special Olympics.

“That’s important to him,” said Mr. Massey, Mr. Burns’s uncle. “That will remind him of his time here.”

The hospital staff handed over Mr. Burns’s birth certificate, his Georgia state identification card, his Medicaid card and his prescriptions to the Arc of Macon representatives, Mr. Burns’s new caretakers.

And then, on May 30, nearly 35 years after he was first admitted here, Mr. Burns shuffled through the hospital’s glass doors for the last time. He held on tightly to an aide’s hand and blinked in the blazing sunlight as he walked carefully down the four stone steps to the sidewalk.

“Come on, Wallace,” the attendant said as she guided him into his seat in a silver Nissan sedan and strapped on his seat belt. Mr. Burns did not look back as the engine sputtered to life.

“I think he’ll like it,” said his mother, her voice brimming with hope, as she watched the car pull away.

Mr. Burns stepped calmly out of the car when he arrived at his new home in Macon about 40 minutes later. He walked silently through that front door without any hint of the turbulence and anxiety bubbling within him. But it was there.

He would not eat a single meal for two days.

Something Not Right

Mrs. Burns still remembers those first few months in 1961 before everything went wrong, when her firstborn seemed like any other sweet-tempered baby with sky-blue eyes. “He was so smiley, so happy,” she said. “He was such a good baby.”

But as time passed, it became clear that something was not right. Her son did not hold his head up by the time other babies did. He could not sit upright. He did not crawl or walk or speak.

She took him to a doctor and discovered that he had been irreparably damaged by the trauma of his birth: His umbilical cord had twisted around his neck, depriving him of precious oxygen. And he had been delivered with forceps, which may have exacerbated the injury to his brain, the doctor said.

He then told Mrs. Burns that her boy would probably never sit, walk or talk. “We’ll see about that,” she said, and devoted the next few years to proving doctors wrong.

By the time he was 4, she had taught him to walk and to say simple words like “Mama,” “Daddy” and “Gama” for Grandma.

But he regressed when she gave birth to twin boys a year later and could no longer focus exclusively on him. He stopped speaking and became increasingly difficult to manage. He would stick his fingers into electrical sockets and whirring fans. He would smash light bulbs with broom handles and unlock the side door and flit aimlessly down the street.

The doctors told her that he needed to be institutionalized, and her husband and parents agreed. In the mid-1960s, most of the developmentally disabled patients admitted to large state facilities were children under the age of 12. States offered virtually no support to families hoping to keep their sons and daughters at home and no education for those children living outside institutions.

So Mrs. Burns handed over her son to an institution in Gainesville, Fla., two hours from Daytona Beach, where she and her husband were living at the time. He was screaming and crying and clinging to her legs. She was crying, too. He was just 8 years old.

“They told me it was the right thing to do,” she said. “But all I could think of was that I was giving away my own child.”

Eight years later, when the Burnses moved to Georgia, he was transferred to Central State Hospital here. Mrs. Burns had relatives who worked at Central State and they checked in regularly on her son, finally giving her some peace of mind.

A Difficult Transition

Over time, she and many of the other parents with children at the hospital learned to find comfort in the familiar rhythms of institutional living that surrounded them. Central State had been there long before they were born and they prayed that it would always be.

By the 1950s, the hospital, which opened in 1842, was the largest psychiatric institution in the country, with nearly 13,000 patients. Over the passing decades it survived, even as its population dwindled, despite findings of inadequate care and suspicious deaths and the waves of deinstitutionalization that emptied out other hospitals.

By January, only 99 patients remained, including Mr. Burns, who had entered the hospital as a teenager and would leave it as a middle-aged man marching toward the twilight of his life.

His blond hair had gone gray. He had learned to dress himself, to go to the bathroom independently and to play games like Connect 4. But after spending decades inside the institution, he had great difficulty adjusting to new people.

Hospital officials hammered out a plan that included a series of carefully calibrated visits to his new group home before he was discharged.

And on moving day, Mr. Burns seemed to recognize his new home, a red brick ranch with peach-colored roses blooming out front. He walked right in, through the living room, the kitchen and straight into his bedroom.

“He remembered his room,” said Patricia Stewart, one of his new caretakers. “He knew right where it was.”

But once in his bedroom, Mr. Burns promptly retreated to his bed, hiding under his midnight blue quilt. He emerged for a few minutes, in response to Ms. Stewart’s entreaties, but quickly returned to his bedroom.

Mr. Burns refused to eat for two days. And for several nights, he could not sleep.

Hospital officials thought that weekly trips to a day program for the disabled would benefit Mr. Burns, who had loved outings to the zoo and the state fair when he was at the hospital. So several times a week, the Arc employees started taking him in a white van to the town of Cochran, where he would have the opportunity to paint, dance, socialize and expand his skills.

But by mid-July it was clear that he was not adjusting as quickly as everyone had hoped.

At his day program, when staff members approached him, Mr. Burns forced himself to vomit at times. He stuffed small pieces of paper into his ears and then picked at his ears until they bled. He refused to participate in activities and withdrew deep into himself.

“He’s not doing too well,” Beverly Sullivan, director of the day program, said in late July. “He’s still very afraid. Whenever you try to talk to him, he shies away.”

Mrs. Burns remained confident that her son would weather the bumpy transition. She loved that he was living something akin to a normal life, celebrating his 51st birthday with a vanilla sheet cake in his new home. (Mr. Burns refused to eat any cake that day, but she was thrilled all the same.)

“I just keep praying for him,” she said. “It’s a big change.”

Andy Harrell, who runs Arc of Macon, the agency responsible for Mr. Burns’s care, echoed her feelings. He has taken in six patients from Central State since the spring of 2011, who all still spend most of their time with other disabled clients. He said his agency would increase their integration in the wider community as they adjusted to their new lives.

“There have been bumps in the road and a lot of adjustments really quickly,” Mr. Harrell said. “But we’re here to work through the difficulties. We’re going to do everything we can.”

By September, three months after the move, Mr. Burns appeared to be settling in. He had found a favorite chair in the living room, a comfort zone beyond his bedroom. He started going to the refrigerator on his own when he was hungry. He began helping bring in the mail and take out the trash.

He seemed to enjoy the company of one of his housemates, a blind, wheelchair-bound man, and to feel more at ease at the day program in Cochran.

On one recent morning, Mr. Burns stunned the day program staff by dancing — a slow, methodical march — when some disco music was playing. He is still reluctant to participate in group activities, and he still makes himself vomit at times, but when someone greets him, he raises an arm in an awkward wave.

The staff hopes that Mr. Burns will become more comfortable in groups. His mother hopes he will learn to use a computer. No one knows how much progress he will make or what setbacks he may encounter. But there is no going back to the life he once knew.

Central State is mostly empty now. The building where Mr. Burns lived was shuttered in June when the last batch of the hospital’s developmentally disabled patients was finally discharged.

It is hard to know what Mr. Burns makes of his transformed existence. He is still a man without words, who watches silently as the currents of life swirl around him. But he certainly understands now that he has a place beyond those hospital walls.

These days, he gets himself dressed in the morning and rolls his wheelchair-bound housemate to the door of his new home, ready for the van ride to Cochran. The world is waiting.

    After Decades in Institutions, a Bumpy Journey to a New Life, NYT, 29.9.2012,
    http://www.nytimes.com/2012/09/30/us/ending-segregation-of-the-mentally-disabled.html

Efforts in Integration: Losing Familiarity for Stimulation

September 29, 2012
The New York Times
By RACHEL L. SWARNS

Under legal pressure from the Justice Department to move its patients into more mainstream living quarters, Central State Hospital in Georgia finished discharging all of its developmentally disabled patients this year. The experiences of the patients, and their caretakers, range widely, as the portraits of these three patients show.

Andrew Lawson, 45
33 years at Central State Hospital
Moved out in December

In his new group home, Andrew Lawson left his mark almost immediately, scarring the white walls with imprints of his forehead as he pounded his head against them, over and over again.

At Central State Hospital, Mr. Lawson, who is blind, autistic and mostly nonverbal, had known the voices of the people who worked with him and the layout of his room and ward.

He tried to learn his new home, too, touching the walls, the doorknobs, the couch, the chairs and the tables when he moved there in December. His bed and television were similar to those at the hospital.

But the house and voices were unfamiliar. Mr. Lawson began expressing his confusion and anxiety the only way he knew. He threw houseplants at his attendants. He smeared his feces on the walls. He banged his head repeatedly.

Soon, some staff members were worrying that they would not be able to handle him.

“We were so afraid,” said Charles McKinney, 71, who is Mr. Lawson’s uncle. Mr. McKinney, and his sister, worried that the group home’s directors would decide that they could no longer care for his nephew.

Instead, the staff at the Arc of Macon, which runs the group home, rearranged the furniture so that it would feel more like Central State. And with the help of a behavioral specialist, they began to make some additional changes.

They noticed that Mr. Lawson liked the showers they gave him after he had dirtied himself and that he often opened his mouth to drink the water. They wondered: was he acting out, in part, to get into the shower? So they let him shower several times a day and gave him a buzzer to press whenever he was thirsty.

The changes have made a difference: The head banging and other troubling incidents have declined, his family and Arc staff members said. By last spring, his caregivers were taking him on outings to a store, a Special Olympics baseball game and a community picnic, a remarkable change of pace for Mr. Lawson, who had rarely ventured from the hospital grounds.

Some problems remain. Mr. McKinney said it took months for the staff to find a dentist willing to treat his nephew after he broke a tooth this summer.

And Mr. Lawson has yet to be enrolled in a program that would get him out of the house regularly and allow him to interact with more people. Arc staff members say he is not ready yet for that, but they are moving toward that goal.

Nicky Barron, 37
Nearly 18 years at Central State
Moved out in May 2011

Nicky Barron ended up with the Arc of Macon when his placement with another agency fell through. His new caretakers did not know exactly what to expect.

Hospital officials said that Mr. Barron would hit himself in the head when he felt pain or wanted attention. Mr. Barron, who uses a wheelchair, needed help to move around and bathe.

But he was also friendly and social, loved visits from his mother and was interested in the people around him. So the Arc officials decided to enroll him in a day program where staff members try to expand the functional and social skills of their clients.

Hospital officials had described him as incapacitated, but the Arc staff noticed that he was using his feet to push his wheelchair. So caretakers began helping him to stand and take small steps.

One day, several months after he arrived, he started walking on his own. “We couldn’t believe it,” said Beverly Sullivan, who runs the program.

Mr. Barron still uses his wheelchair because he can walk only short distances. But these days, after arriving home from Ms. Sullivan’s program, Mr. Barron steps out of the group home’s van and walks right through the front door and into the dining room where his dinner is waiting.

“Hey!” he calls out cheerfully to anyone who will listen. “Hey!”

Rosa Ates, 49
Nearly 31 years at Central State
Discharged in April

Rosa Ates did not say a word when her caretakers rolled her out of Central State on a rainy April afternoon. But her distress, staff members said, was as clear as day.

As her wheelchair was loaded into the van that would carry her to her new home, she repeatedly bit the back of her hand.

Ms. Ates, who has cerebral palsy and is severely mentally disabled, cannot speak. When she was upset, she would not only bite her hand but also hit herself in the face.

Rita B. Davis, the supervisor who welcomed Ms. Ates to her new group home, knew all about that. She knew that Ms. Ates required complete physical care and that she could not walk, bathe or get in and out of bed on her own. Hospital officials also reported that she loved meat, going to church and watching television.

But Ms. Davis would learn more as Ms. Ates adjusted to her new home. The disabled woman’s eyes wandered, each one seemingly keeping its own counsel. But she loved holding hands with visitors, her caretakers and her housemates. And it was not long before her anxiety seemed to disappear. “She has just bloomed,” Ms. Davis said.

Her transition, however, has not been without its challenges.

Ms. Ates used to feed herself at the hospital, but she regressed a bit in the group home when the staff replaced her old wheelchair, which had an attachable table. She is served meals at the dining room table now, with her housemates.

“She will feed herself sometimes,” Ms. Davis said. “Sometimes she won’t.”

But she is much more engaged with the outside world than she was at Central State. She paints, with some help, at her day program. She also attends movies and concerts with the three other women at her group home.

Ms. Ates’s day program is in Cochran, closer to where her family lives, making it much easier for her relatives to visit. They see her regularly.

“That was what we hoped for,” Ms. Davis said.

    Efforts in Integration: Losing Familiarity for Stimulation, NYT, 29.9.2012,
    http://www.nytimes.com/2012/09/30/us/moving-mentally-disabled-from-institutions-to-group-homes.html

Medicare Bills Rise as Records Turn Electronic

September 21, 2012
The New York Times
By REED ABELSON, JULIE CRESWELL and GRIFFIN J. PALMER

When the federal government began providing billions of dollars in incentives to push hospitals and physicians to use electronic medical and billing records, the goal was not only to improve efficiency and patient safety, but also to reduce health care costs.

But, in reality, the move to electronic health records may be contributing to billions of dollars in higher costs for Medicare, private insurers and patients by making it easier for hospitals and physicians to bill more for their services, whether or not they provide additional care.

Hospitals received $1 billion more in Medicare reimbursements in 2010 than they did five years earlier, at least in part by changing the billing codes they assign to patients in emergency rooms, according to a New York Times analysis of Medicare data from the American Hospital Directory. Regulators say physicians have changed the way they bill for office visits similarly, increasing their payments by billions of dollars as well.

The most aggressive billing — by just 1,700 of the more than 440,000 doctors in the country — cost Medicare as much as $100 million in 2010 alone, federal regulators said in a recent report, noting that the largest share of those doctors specialized in family practice, internal medicine and emergency care.

For instance, the portion of patients that the emergency department at Faxton St. Luke’s Healthcare in Utica, N.Y., claimed required the highest levels of treatment — and thus higher reimbursements — rose 43 percent in 2009. That was the same year the hospital began using electronic health records.

The share of highest-paying claims at Baptist Hospital in Nashville climbed 82 percent in 2010, the year after it began using a software system for its emergency room records.

In e-mailed statements, representatives for both hospitals said the increases reflected more accurate billing for services. Faxton also said its patients required more care than in past years.

Over all, hospitals that received government incentives to adopt electronic records showed a 47 percent rise in Medicare payments at higher levels from 2006 to 2010, the latest year for which data are available, compared with a 32 percent rise in hospitals that have not received any government incentives, according to the analysis by The Times.

The higher coding has captured the attention of federal and state regulators and private insurers like Aetna and Cigna. This spring, the Office of Inspector General for the federal Health and Human Services Department warned that the coding of evaluation services had been “vulnerable to fraud and abuse.”

Some experts blame a substantial share of the higher payments on the increasingly widespread use of electronic health record systems. Some of these programs can automatically generate detailed patient histories, or allow doctors to cut and paste the same examination findings for multiple patients — a practice called cloning — with the click of a button or the swipe of a finger on an iPad, making it appear that the physicians conducted more thorough exams than, perhaps, they did.

Critics say the abuses are widespread. “It’s like doping and bicycling,” said Dr. Donald W. Simborg, who was the chairman of federal panels examining the potential for fraud with electronic systems. “Everybody knows it’s going on.”

When Methodist Medical Center of Illinois in Peoria rolled out an electronic records system in 2006, Dr. Alan Gravett, a former emergency room physician, quickly expressed alarm.

He said the new system prompted doctors to click a box that indicated a thorough review of patients’ symptoms had taken place, even though the exams were rarely performed, while another function let doctors pull exam findings “from thin air” and include them in patients’ records.

In a whistle-blower lawsuit filed in 2007, Dr. Gravett contended that these techniques drove up Medicare reimbursement levels substantially. According to the lawsuit, Dr. Gravett was eventually fired for ordering too many tests. He says he was retaliated against for complaining about the new system. The Justice Department is weighing whether to join an amended suit in Federal District Court in Central Illinois.

An independent analysis by The Times showed that Methodist’s Medicare billings for the highest level of emergency care jumped from 50 percent of its emergency room Medicare claims in 2006 to more than 80 percent in 2010, making the 353-bed hospital one of the country’s most frequent users of high-paying evaluation codes.

Methodist declined to comment on Dr. Gravett’s allegations. But in an e-mailed statement, a spokesman said that not all of the hospital’s billing was done electronically, that it followed professional coding guidelines and that its patients required more care than patients at other hospitals.

Many hospitals and doctors say that the new systems allow them to better document the care they provide, justifying the higher payments they are receiving. Many doctors and hospitals were actually underbilling before they began keeping electronic records, said Dr. David J. Brailer, an early federal proponent of digitizing records and an official in the George W. Bush administration. But Dr. Brailer, who invests in health care companies, acknowledged that the use of electronic records “makes it faster and easier to be fraudulent.”

Both the Bush and Obama administrations have encouraged electronic records, arguing that they help doctors track patient care. When used properly, the records can help avoid duplicate tests and remind doctors about a possible diagnosis or treatment they had not considered. As part of the economic stimulus program in 2009, the Obama administration put into effect a Bush-era incentive program that provides tens of billions of dollars for physicians and hospitals that make the switch.

But some critics say an unintended consequence is the ease with which doctors and hospitals can upcode — industry parlance for seeking a higher rate of reimbursement than is justified. They say there is too little federal oversight of electronic records.

A spokesman for the Health and Human Services Department, however, said electronic health records “can improve the quality of care, save lives and save money.” Medicare, he added in an e-mailed statement, “has strong protections in place to prevent fraud and abuse of this technology that we’re improving all the time.”

He also said Medicare had reduced improper payments in the last two years.

In emergency rooms, which use special billing codes to indicate how much care a patient needs, hospitals have increased their claims for the two highest-paying categories to 54 percent of Medicare claims in 2010, from 40 percent in 2006, according to The Times’s analysis of Medicare data. The Center for Public Integrity, a nonprofit investigative journalism group, recently released a similar analysis.

Some contractors handling Medicare claims have already alerted doctors to their concerns about billing practices. One contractor, National Government Services, recently warned doctors that it would refuse to pay them if they submitted “cloned documentation,” while another, TrailBlazer Health Enterprises, found that 45 out of 100 claims from Texas and Oklahoma emergency-department doctors were paid in error. “Patterns of overcoding E.D. services were found with template-generated records,” it said.

The Office of Inspector General is studying the link between electronic records and billing.

One sophisticated patient witnessed the overbilling firsthand. In early 2010, Robert Burleigh, a health care consultant, came to the emergency room of a Virginia hospital with a kidney stone. When he received the bill from the emergency room doctor, his medical record, produced electronically, reflected a complete physical exam that never happened, allowing the visit to be billed at the highest level, Mr. Burleigh said.

The doctor indicated that he had examined Mr. Burleigh’s lower extremities, but Mr. Burleigh said that he was wrapped in a blanket and that the doctor never even saw his legs.

“No one would admit it,” Mr. Burleigh said, “but the most logical explanation was he went to a menu and clicked standard exam,” and the software filled in an examination of all of his systems. After he complained, the doctor’s group reduced his bill.

As software vendors race to sell their systems to physician groups and hospitals, many are straightforward in extolling the benefits of those systems in helping doctors increase their revenue. In an online demonstration, one vendor, Praxis EMR, promises that it “plays the level-of-service game on your behalf and beats them at their own game using their own rules.”

The system helps doctors remember what they did when they successfully billed for similar patients, and ensures that they do not forget to ask important questions or to perform necessary tests, said Dr. Richard Low, chief executive of Infor-Med Corporation, which developed Praxis. “The doctor can use a chart the way the pilot uses a checklist,” he said.

But others place much of the blame on the federal government for not providing more guidance. Dr. Simborg, for one, said he helped draft regulations in 2007 that would have prevented much of the abuse that now appears to be occurring. But because the government was eager to encourage doctors and hospitals to enter the electronic era, he said, those proposals have largely been ignored.

“What’s happening is just the problem we feared,” he said.

    Medicare Bills Rise as Records Turn Electronic, NYT, 22.9.2012,
    http://www.nytimes.com/2012/09/22/business/medicare-billing-rises-at-hospitals-with-electronic-records.html

In Discarding of Kidneys, System Reveals Its Flaws

September 19, 2012
The New York Times
By KEVIN SACK

ST. PAUL — Last year, 4,720 people died while waiting for kidney transplants in the United States. And yet, as in each of the last five years, more than 2,600 kidneys were recovered from deceased donors and then discarded without being transplanted, government data show.

Those organs typically wound up in a research laboratory or medical waste incinerator.

In many instances, organs that seemed promising for transplant based on the age and health of the donor were discovered to have problems that made them not viable.

But many experts agree that a significant number of discarded kidneys — perhaps even half, some believe — could be transplanted if the system for allocating them better matched the right organ to the right recipient in the right amount of time.

The current process is made inefficient, they say, by an outdated computer matching program, stifling government oversight, the overreliance by doctors on inconclusive tests and even federal laws against age discrimination. The result is a system of medical rationing that arguably gives all candidates a fair shot at a transplant but that may not save as many lives as it could.

“There is no doubt that organs that can help somebody and have a survival benefit are being discarded every day,” said Dr. Dorry Segev, a transplant surgeon at Johns Hopkins University School of Medicine.

For 25 years, the wait list for deceased donor kidneys — which stood at 93,413 on Wednesday — has remained stubbornly rooted in a federal policy that amounts largely to first come first served. As designed by the government’s Organ Procurement and Transplantation Network, which is managed under federal contract by the nonprofit United Network for Organ Sharing, the system is considered simple and transparent. But many in the field argue that it wastes precious opportunities for transplants.

One recent computer simulation, by researchers with the Scientific Registry of Transplant Recipients, projected that a redesigned system could add 10,000 years of life from just one year of transplants.

Currently, the country is divided into 58 donation districts. When a deceased donor kidney becomes available, the transplant network’s rules dictate that it is first offered to the compatible candidate within the district who has waited the longest. Additional priority is given to children, to candidates whose blood chemistry makes them particularly difficult to match and to those who are particularly well matched to the donor. If no taker is found locally, the electronic search expands to the region and eventually goes national.

The kidney matching system does not, however, consider the projected life expectancy of the recipient or the urgency of the transplant. By contrast, the systems for allocating livers, hearts and lungs have been revised to weigh those factors.

As a result, kidneys that might function for decades can be routed to elderly patients with only a few years to live. And when older, lower-quality kidneys become available, candidates atop the list and their doctors can simply turn them down and wait for better organs. If that happens too often, doctors say, a kidney can develop a self-fulfilling reputation as an unwanted organ.

Complicating matters is a race against the clock that starts as soon as a kidney is recovered and placed on ice for evaluation. Because kidneys start to degrade during this “cold ischemic time,” surgeons typically hope to transplant them within 24 to 36 hours.

But that short window can be devoured by testing, searches for a recipient and long drives or flights to transport the kidney. The organ procurement organization in each district is allowed to make offers to only a few hospitals at a time — usually three to five — and the hospitals have an hour to respond.

Missed Opportunities

It is not precisely clear how often kidneys are discarded that might be useful.

Last year 2,644 of the 14,784 kidneys recovered were discarded, or nearly 18 percent, according to the United Network for Organ Sharing. About one-fifth of those discarded kidneys — nearly 500 — were not transplanted because a recipient could not be found.

But transplant statisticians say that record-keeping is imprecise. And some authorities, like Dr. Barry M. Straube, a nephrologist who served for six years as Medicare’s chief medical officer, and Dr. Robert J. Stratta, the director of transplantation at Wake Forest School of Medicine, speculate that as many as half of discarded kidneys could be transplanted.

“I think you could argue about how many missed opportunities there are,” said Dr. Alan B. Leichtman, a nephrologist at the University of Michigan. “But not that there are missed opportunities.”

Last October, a ticking clock apparently forced doctors to discard one of the kidneys donated by Judith Kurash, 72, who died in a Twin Cities-area hospital after suffering a brain aneurysm.

Surgeons successfully transplanted her liver. Her heart went to research. But given Ms. Kurash’s age and history of hypertension, finding recipients for her kidneys proved challenging.

They were turned down by five area hospitals, six Midwestern ones and then 37 others nationwide, before finally being accepted by a center on the East Coast, according to LifeSource, the organ procurement organization in St. Paul. Although testing showed the kidneys to be similar, one was transplanted, while the other was not.

The East Coast hospital declined to be identified or comment on the case. But Meg Rogers, LifeSource’s director of organ procurement, said the hospital reported that Ms. Kurash’s right kidney had “timed out” after spending at least 24 hours on ice.

“Unfortunately, once that kidney is recovered, time isn’t on our side,” Ms. Rogers said. “It sometimes takes all the stars aligning.”

Although pleased that any of his mother’s organs had been placed, Terry Kurash said the successful transplant of one kidney, to a 58-year-old man, raised the question of why the second had been discarded.

“You’d like to see the most efficient process that allows the most organs to get to the most recipients,” Mr. Kurash said.

More than half of discarded kidneys come from older donors like Ms. Kurash whose age and health problems may have made them marginal for transplant. But in 2011, nearly 1,000 discarded kidneys came from donors who were younger than 60, according to the organ sharing network.

So it was in March, when a nationwide computer search failed to produce a taker for one of the kidneys donated by Frank D. Duncan, a fit 36-year-old who succumbed to smoke inhalation from an early-morning electrical fire at his house in Memphis (his wife and two young sons escaped).

Mr. Duncan’s widow, Catherine, said she had received notice from the Mid-South Transplant Foundation, the local organ procurement organization, that his liver had been transplanted into a 47-year-old man and that his left kidney had gone to a 36-year-old woman.

But despite making offers to nearly 10,000 potential matches, the agency did not find a candidate willing to take Mr. Duncan’s right kidney, said Kim Van Frank, Mid-South’s executive director.

The failure to place the second kidney, which was discarded, confounded Ms. Duncan. “You’ve got all these people all over the country that are waiting for one,” she said, “and here you’ve got this perfectly good kidney.”

Success at a Cost

The number of kidneys discarded each year has grown 76 percent over the last decade, more than twice as fast as the increase in kidney recoveries. Clearly, revamping the allocation system would help shorten the wait list.

But given that the list has grown 30 percent in five years, transplant officials say that more must also be done to encourage people to register as donors, increase donor registration rates, remove financial and logistical obstacles and narrow extreme differences in wait list time among states.

There are any number of reasons a doctor might turn away a kidney. But there is growing concern that those decisions are made without good diagnostic tools and under pressure from regulators and insurers to maintain high transplant-success rates.

When a kidney is removed, doctors often biopsy a slice and connect the organ to a pump that measures blood flow for signs of scarring and hardening of the vessels. When kidneys are discarded, hospitals cite biopsy results more than any other reason. Yet studies suggest that biopsies do not always do a good job of predicting how long a transplanted organ might survive.

“The hardest decision we make in deceased organ transplant is whether to accept a given organ for a given patient,” said Dr. Gabriel M. Danovitch, medical director of the kidney transplant program at Ronald Reagan U.C.L.A. Medical Center. “It’s all odds, based on information that is incomplete at best.”

Another factor, doctors and organ procurement officials say, is federal scrutiny of transplant success rates.

In 2007, following revelations of lax government oversight of poorly performing transplant centers, the federal agency that manages Medicare, required that survival data for transplanted organs and recipients be made public. The figures are adjusted for relative risk factors and compared with expected survival rates.

The penalty for underperformance can be severe. If the number of failures exceeds expected levels by 50 percent, transplant programs are flagged, explained Thomas E. Hamilton, director of survey and certification for the federal Centers for Medicare and Medicaid Services. If it happens twice in 30 months, the program’s administrators are given a brief probationary period to improve, or convince regulators that there were other factors. Otherwise, the program is decertified.

Because Medicare is the primary insurer for kidney transplants, such a ruling can effectively close a transplant program. Commercial insurers also use the survival ratings to make decisions on contracts.

Over five years, through June, 79 organ transplant programs had drawn oversight for repeatedly falling short and seven had been decertified, Mr. Hamilton said.

In interviews, dozens of transplant specialists said the threat of government penalties had made doctors far more selective about the organs and patients they accepted, leading to more discards.

“When you’re looking at organs on the margins, if you’ve had a couple of bad outcomes recently you say, ‘Well, why should I do this?’ ” said Dr. Lloyd E. Ratner, direct of renal and pancreatic transplantation at NewYork-Presbyterian/Columbia hospital. “You can always find a reason to turn organs down. It’s this whole cascade that winds up with people being denied care or with reduced access to care.”

Dr. Michael A. Rees, a transplant surgeon at the University of Toledo Medical Center, said his kidney program was cited by Medicare in 2008 after several unlikely failures. To save the program from decertification, he said he cut back to about 60 transplants a year from 100, becoming far choosier about the organs and recipients he accepted.

The one-year transplant survival rate rose to 96 percent from 88 percent, but Dr. Rees still bristles at the trade-off. “Which serves America better?” he asked. “A program doing 100 kidneys and 88 percent of them are working, or a program that does 60 kidneys and 59 of them are working? It’s rationing health care under the guise of quality, and it’s a tragedy that we are throwing away perfectly good organs.”

Mr. Hamilton said the Medicare agency agreed that individual hospitals had grown more cautious, and appropriately so. But he said there was no evidence that had led to more discards nationally, as other hospitals had picked up the slack.

“There’s something very negative about poor outcomes,” Mr. Hamilton said. “And that’s where we need to be putting our attention.”

Other Approaches

The transplant community has grappled for years with the problem of viable kidneys being discarded. But the politics of rationing, where any reallocation creates high-stakes winners and losers, has thwarted all efforts at revision. Eight years after the United Network for Organ Sharing charged its kidney transplantation committee with improving the system, there has been no change.

One approach, outlined by the committee in February 2011, called for rating each organ based on the donor’s age, height, weight and medical history. The top 20 percent of those kidneys would be allocated to candidates expected to live the longest. The rest would be matched to give priority to candidates within 15 years of the donor’s age.

The proposal died quickly after federal officials warned that discrimination laws would prohibit the use of age to determine outright who gets a transplant.

There are no such obstacles in Europe. And in 1999, seven countries, including Germany, began matching kidneys from donors 65 and older to recipients in the same age bracket. Those kidneys were allocated close to home to shorten cold time, and biopsies were used sparingly.

The number of older kidney donors has more than tripled, and discard rates are less than a third of that in the United States, said Dr. Ulrich Frei, a German nephrologist who has compared the two systems. Studies have found no significant difference in survival rates for older patients in Europe and the United States, he said.

Dr. Frei said he found the discard rate in the United States “quite disturbing.” The reliance on biopsy is misplaced, he said, and valuable hours are wasted in the sequential search for a taker for a lower-quality kidney. That they wind up discarded, he said, is “a self-fulfilling prophecy.”

On Friday, the kidney committee plans to circulate a new proposal that would leave most of the system in place. As with the prior plan, the top 20 percent of kidneys would be matched to the candidates expected to survive the longest, placing older patients at a disadvantage. But the remaining 80 percent would still be allocated primarily by time spent on the wait list.

“It’s a compromise,” Dr. Ratner said. “I think it’s going to make very little difference.”

Dr. John J. Friedewald, the committee’s chairman, said it was impossible to please everybody when allocating limited resources.

“We want to maintain equal access and do better with this pool of kidneys,” he said. “But by changing allocation slightly and getting 10,000 more life-years lived, what is that worth? Is it worth slightly decreased rates of access for certain groups of people? That’s what we go back and forth trying to decide.”

In August, as the committee finalized its recommendation, a group of researchers proposed yet another allocation algorithm in the American Journal of Transplantation. It would give individuals in different age bands an equal chance to get a transplant in a given year. But it would drive the best kidneys to the youngest recipients.

A lengthy public comment period will follow Friday’s release of the new proposal. The organ sharing network’s board is not expected to vote on a plan until at least June, and possibly much later.

    In Discarding of Kidneys, System Reveals Its Flaws, NYT, 19.9.2012,
    http://www.nytimes.com/2012/09/20/health/transplant-experts-blame-allocation-system-for-discarding-kidneys.html

Washington State

Makes It Harder to Opt Out of Immunizations

September 19, 2012
The New York Times
By SABRINA TAVERNISE

Washington State is home to Bill and Melinda Gates, champions of childhood vaccines across the globe. Its university boasts cutting-edge vaccine research. But when it comes to getting children immunized, until recently, the state was dead last.

“You think we’re a cut above the rest,” said Dr. Maxine Hayes, state health officer for Washington’s Department of Health, “but there’s something in this culture out West. It’s a sort of defiance. A distrust of the government.”

The share of kindergartners whose parents opted out of state immunization requirements more than doubled in the decade that ended in 2008, peaking at 7.6 percent in the 2008-9 school year, according to the state’s Health Department, raising alarm among public health experts. But last year, the Legislature adopted a law that makes it harder for parents to avoid getting their children vaccinated, by requiring them to get a doctor’s signature if they wish to do so. Since then, the opt-out rate has fallen fast, by a quarter, setting an example for other states with easy policies.

For despite efforts to educate the public on the risks of forgoing immunization, more parents are choosing not to have their children vaccinated, especially in states that make it easy to opt out, according to a study published on Thursday in The New England Journal of Medicine.

And while the rate of children whose parents claimed exemptions remains low — slightly over 2 percent of all kindergarten students in 2011, up from just over 1 percent in 2006 — the national increase is “concerning,” said Saad Omer, an assistant professor of global health at Emory University who led the study.

Families of unvaccinated children tend to live in close proximity, increasing the risk of a hole in the immunity for an entire area. That can speed the spread of diseases such as measles, which have come back in recent years

The opt-out rate increased fastest in states like Oregon and Arizona — and Washington, before its law changed — where it was easy to get an exemption. In such states, the rate rose by an average of 13 percent a year from 2006 to 2011, according to the study. In states that made it harder to get an exemption from vaccination, such as Iowa and Alabama, the opt-out rate also rose, but more slowly, by an average of 8 percent a year. Mississippi and West Virginia allow no exemptions.

Vaccines are among the most important achievements of modern medicine. Since the first major types came into broad use in the 1940s, they have drastically reduced deaths from infectious diseases like polio and measles. But the virtual disappearance of these diseases has lulled parents into considering the vaccines against them as less necessary, public health experts say.

“Vaccines are the victims of their own success,” said Dr. Paul A. Offit, chief of infectious diseases at Children’s Hospital of Philadelphia. “When they work, nothing happens.”

A distrust of the medical establishment has also fueled skepticism about vaccines. And while the Internet is a powerful source of information, it has also allowed the rapid spread of false information, such as the theory by Andrew Wakefield, a former British surgeon, that the measles-mumps-rubella vaccine was linked to the onset of autism.

“With the Internet, you can have one cranky corner of Kentucky ending up influencing Indonesia,” said Heidi Larson, a lecturer at the Project to Monitor Public Confidence in Immunization, at the London School of Hygiene and Tropical Medicine.

Dr. Omer’s study categorizes state exemption policies on a scale from easy to difficult. The easiest rules require parents only to fill out a standardized form, which often involves merely checking a box. More stringent policies require parents to write a letter, detailing precisely why they believe their children should be exempt. “These laws have an impact,” he said. “The idea is to nudge the balance of convenience away from getting exemptions.”

Parents who refuse vaccines tend to be more educated, and often more affluent than the average, researchers say.

Jonathan Bell, a naturopathic doctor in Washington State who encourages his patients to vaccinate their children. Those who opt out, he said, tend to distrust the public health establishment because of what they see as its unsavory connections with the pharmaceutical industry. “The argument is, ‘Oh no, I’m putting off vaccines,’ ” he said. “ ‘I’m part of a group that’s smart enough to understand the government is a pawn of big pharma.’ ”

Still, he said that only a small group is adamantly against vaccines, with many of the rest trying to stagger or individualize the schedules of inoculation for their children. Others had opted out simply because it was easy.

A stronghold of vaccine skeptics is Vashon Island, a short ferry ride from Seattle, where the share of parents who have opted out of having their children vaccinated has been as high as one in four. Celina Yarkin, a resident, tries to persuade parents there to immunize their children. This school year, even with the new law, she took to the local school a large sign explaining the benefits of vaccination. She praised the parents’ concern for their children, and their determination to decide what was best for them.

“A lot of it is positive,” she said. “People just don’t just want to take their doctor’s word for it. But with vaccines, it just takes this crazy turn.”

    Washington State Makes It Harder to Opt Out of Immunizations, NYT, 19.9.2012,
    http://www.nytimes.com/2012/09/20/health/washington-state-makes-it-harder-to-forgo-immunizations.html

Dallas Copes With Unpredictability of West Nile Virus

September 18, 2012
The New York Times
By MANNY FERNANDEZ

DALLAS — Jay Wortham found it under the cabinet below the kitchen sink after his mother died in August — a blue bottle of insect repellent.

His mother, Margorie Wortham, 91, died of West Nile virus, the mosquito-borne illness that has spread across this city and other parts of the country, killing 118 people and sickening nearly 3,000 others nationwide.

Mr. Wortham believes that his mother was bitten by an infected mosquito one hot day in July while she sat on an old wooden bench under a pecan tree in her backyard. Though she had often used the bug repellent, she was not wearing any that day.

Here in Dallas County, the West Nile outbreak’s hardest-hit county in the United States, a few missed pumps of bug spray can haunt the relatives of those who die from the virus.

“I wish I had taken her this instead of a vodka and Coke,” said Mr. Wortham, 59, holding the bottle in his hands. “I ask that other people don’t make the same mistake.”

Ms. Wortham and 14 other people have died in Dallas County from the virus since July. Nine were men, and six were women. The youngest were in their 40s, and the oldest in their 90s.

Charles H. Pistor Jr., 81, was a well-known figure in Dallas — a retired banking executive, former vice chairman of the board of trustees at Southern Methodist University and past president of the Dallas Assembly civic group.

Dr. Tom M. McCrory, 92, a retired eye surgeon, died eight days after Mr. Pistor in July.

Dema Miller lived in the Dallas suburb of Irving and was one week shy of her 84th birthday when she died in August.

Local and federal health officials said the outbreak that has killed 57 people and sickened hundreds of others in Texas appeared to be waning, with Dallas County seeing a decrease in new cases in recent weeks. Still, the friends and relatives of the county’s fatal victims remain in a state of grief, coming to terms with the seeming randomness of healthy middle-aged people and active retirees cut down by ever-present insects.

County health leaders said that although some of the 15 people had pre-existing medical conditions like hypertension, kidney disease or a history of cancer, others did not have any conditions that put them at a higher risk of developing the most severe form of the illness, West Nile neuroinvasive disease. The disease affects the brain and spinal cord and can lead to brain damage, coma and death. The milder form, West Nile fever, can cause flulike symptoms.

“You cannot predict with certainty who is going to come down with more severe disease in a situation like this,” said Dr. Wendy Chung, the chief epidemiologist for Dallas County Health and Human Services.

“We don’t want people to have a false sense of security that they are somehow impervious to the disease because they don’t have an underlying medical condition,” Dr. Chung added. “People feel that West Nile is something that happens to somebody else in some other ZIP code, with some other set of health problems. I think that is counterproductive to what we’re trying to achieve on a public health level, which is an appreciation that risk can sometimes be very unpredictable.”

Many of those who died lived far from one another in the Dallas suburbs of Seagoville, Grand Prairie or Rowlett, in a county that at 871 square miles is nearly three times the size of New York City.

But 6 of the 15 victims lived in three adjacent ZIP codes a few miles north of downtown Dallas — 75205, 75225 and 75229. The area is a roughly 21-square-mile section of North Dallas and the Park Cities, which include the town of Highland Park and the city of University Park. It is made up of neighborhoods with manicured lawns and some of the wealthiest, most highly educated households in the Dallas area.

One residence in particular is the best known but least talked about, publicly at least — the house on Daria Place where former President George W. Bush and his wife, Laura, live. Their ZIP code is 75229, where two people bitten by infected mosquitoes died — Ms. Wortham and another resident.

The reasons the West Nile outbreak has been so intense in those three ZIP codes and throughout the county are unclear. Local, state and federal health officials said a variety of complex factors could be at play.

Because West Nile outbreaks are often associated with heat waves, the Dallas area’s hot weather this summer might have contributed, although many parts of the country that had high temperatures did not experience such severe outbreaks. Mosquitoes get the virus when they feed on infected birds, and officials believe that the population of susceptible birds, the infectiousness of the mosquitoes and the environmental conditions that might have changed the interactions between birds and mosquitoes might have also played a role.

“All of this is something that we’re going to try and sort out in the upcoming weeks and months, as we start to look at the data in more detail,” said Dr. Lyle R. Petersen, the director of the vector-borne infectious diseases division at the Centers for Disease Control and Prevention. He added that it appeared that ecological factors were responsible, not a change in the genetics of the virus.

Ms. Wortham and her husband, James Gregg Wortham, an engineer who died in 1980, had two children, and she enjoyed spending time gardening at the house they moved into in 1959. In later years, Ms. Wortham, a grandmother of two and great-grandmother of four, hung a framed passage from a poem by Dorothy Frances Gurney: One is nearer God’s heart in a garden/Than anywhere else on Earth.

Days after Ms. Wortham was bitten in July, she became increasingly ill and nauseated. She eventually collapsed and was rushed to the hospital. “She was exceedingly weak,” Mr. Wortham said. “She had tremors here, and I couldn’t take care of her in that condition, and that’s when I called 911.”

She died five days later.

On a recent afternoon, Mr. Wortham, who had moved home to take care of his mother, sprayed himself with her bottle of bug spray before going out into the backyard. On the coffee table in the living room, he left the medical document he received days ago. He said he was feeling fine, and was neither overly worried nor surprised: he, too, had tested positive for the virus.

    Dallas Copes With Unpredictability of West Nile Virus, NYT, 18.9.2012,
    http://www.nytimes.com/2012/09/19/us/unpredictability-in-dallas-west-nile-virus-outbreak.html

Dr. Thomas Szasz,

Psychiatrist Who Led Movement Against His Field,

Dies at 92

September 11, 2012
The New York Times
By BENEDICT CAREY

Thomas Szasz, a psychiatrist whose 1961 book “The Myth of Mental Illness” questioned the legitimacy of his field and provided the intellectual grounding for generations of critics, patient advocates and antipsychiatry activists, making enemies of many fellow doctors, died Saturday at his home in Manlius, N.Y. He was 92.

He died after a fall, his daughter Dr. Margot Szasz Peters said.

Dr. Szasz (pronounced sahz) published his critique at a particularly vulnerable moment for psychiatry. With Freudian theorizing just beginning to fall out of favor, the field was trying to become more medically oriented and empirically based. Fresh from Freudian training himself, Dr. Szasz saw psychiatry’s medical foundation as shaky at best, and his book hammered away, placing the discipline “in the company of alchemy and astrology.”

The book became a sensation in mental health circles, as well as a bible for those who felt misused by the mental health system.

Dr. Szasz argued against coercive treatments, like involuntary confinement, and the use of psychiatric diagnoses in the courts, calling both practices unscientific and unethical. He was soon placed in the company of other prominent critics of psychiatry, including the Canadian sociologist Erving Goffman and the French philosopher Michel Foucault.

Edward Shorter, the author of “A History of Psychiatry: From the Era of the Asylum to the Age of Prozac” (1997), called Dr. Szasz “the biggest of the antipsychiatry intellectuals.”

“Together,” he added, “they tried their hardest to keep people away from psychiatric treatment on the grounds that if patients did not have actual brain disease, their only real difficulties were ‘problems in living.’ ”

This attack had some merit in the 1950s, Dr. Shorter said, but not later on, when the field began developing more scientific approaches.

To those skeptical of modern psychiatry, however, Dr. Szasz was a foundational figure.

“We did not agree on everything, like his view that there is no such thing as mental illness,” said Vera Hassner Sharav, president and founder of the Alliance for Human Research Protection, a patient advocacy group, and a longtime critic of the field. “But his message that people get designated as ill, labeled and then shafted out of society and preyed on by an industry dominated by drugs — that’s where he was very valuable.”

After making his name, Dr. Szasz only turned up the heat. From his base in the psychiatry department of SUNY Upstate Medical University in Syracuse, he wrote hundreds of articles and more than 30 books, including “Ideology and Insanity: Essays on the Psychiatric Dehumanization of Man” (1970) and “Psychiatric Slavery: When Confinement and Coercion Masquerade as Cure” (1977).

In 1969, in a move that damaged his credibility even among allies, he joined with the Church of Scientology to found the Citizens Commission on Human Rights, which portrays the field as abusive and regularly pickets psychiatric meetings.

Dr. Szasz was not a Scientologist himself, and he later distanced himself from the church, but he shared the religion’s critical view of psychiatry. His provocations were not without cost. In the 1960s, New York mental health officials, outraged at his attacks on the state system, blocked Dr. Szasz from teaching at a state hospital where residents trained, according to two former colleagues. Dr. Szasz bristled but had little recourse, and his teaching was curtailed.

Dr. Szasz opposed the American Psychiatric Association’s broadening of its diagnoses in its new manual.

“For the record, I will say that I admired him, even though I think he was dead wrong about the nature of schizophrenia,” said Dr. E. Fuller Torrey, founder of the Treatment Advocacy Center in Arlington, Va., which supports stronger laws to ensure treatment of people with severe mental disorders. “But he made a major contribution to the issue of the misuse of psychiatry. His message is important today.”

Thomas Stephen Szasz was born in Budapest on April 15, 1920, the second child of Julius Szasz, a lawyer, and the former Lily Wellisch. The family moved to Cincinnati in 1938, where the boy became a star student. He earned a degree in physics from the University of Cincinnati and graduated from the university’s medical school in 1944.

After an internship and residency, he enrolled at the Chicago Institute for Psychoanalysis, earning his diploma in 1950. He worked at the Chicago institute and served in the United States Naval Reserve before joining the faculty of SUNY Upstate.

He wife, Rosine, died in 1971. Beside his daughter Dr. Peters, he is survived by another daughter, Suzy Szasz Palmer; a brother, George; and a grandson.

Dr. Szasz was widely sought after as a speaker and presented with dozens of national and international awards. Until the end of his life he continued to discuss psychotherapy, the practice he was trained to perform and of which he became so skeptical.

“The goal is to assume more responsibility and therefore gain more liberty and more control over one’s own life,” he said of talk therapy in an interview in 2000 with the Web site Psychotherapy.net. “The issues or questions for the patient become to what extent is he willing to recognize his evasions of responsibility, often expressed as ‘symptoms.’ ”

    Dr. Thomas Szasz, Psychiatrist Who Led Movement Against His Field, Dies at 92, NYT, 11.9.2012,
    http://www.nytimes.com/2012/09/12/health/
    dr-thomas-szasz-psychiatrist-who-led-movement-against-his-field-dies-at-92.html

The Arkansas Innovation

September 5, 2012
9:17 pm
The New York Times
By EZEKIEL J. EMANUEL

Philadelphia

MENTION medical innovation, and you might think of the biotech corridor around Boston, or the profusion of companies developing wireless medical technologies in San Diego. But one of the most important hotbeds of new approaches to medicine is ... you didn't guess it: Arkansas.

The state has a vision for changing the way Arkansans pay for health care. It is moving toward ending "fee-for-service" payments, in which each procedure a patient undergoes for a single medical condition is billed separately. Instead, the costs of all the hospitalizations, office visits, tests and treatments will be rolled into one "episode-based" or "bundled" payment. "In three to five years," John M. Selig, the head of Arkansas's Department of Human Services, told me, "we aspire to have 90 to 95 percent of all our medical expenditures off fee-for-service."

The change will encourage doctors and hospitals to work together to provide patients with the highest quality care, while at the same time lowering costs by eliminating unnecessary tests and treatments. It has been done before, in small-scale experimental pilot programs. But as the Arkansas officials make clear, this change will now be made in every corner of the state, for every hospital, and physicians in almost every specialty: surgeons, anesthesiologists, obstetricians, pediatricians, primary care physicians. For policy makers and the public, the Arkansas experiment is fascinating.

This is how it will work: Medicaid and private insurers will identify the doctor or hospital who is primarily responsible for the patient's care - the "quarterback," as Andrew Allison, the state's Medicaid director, put it. The quarterback will be reimbursed for the total cost of an episode of care - a hip or knee replacement; treatment for an upper respiratory infection or congestive heart failure; or perinatal care (the baby's delivery, as well as some care before and after).

The quarterbacks will also be responsible for the cost and quality of the services provided to their patients, and will receive quarterly reports on those metrics from the state (for Medicaid patients) or private insurers. If they have delivered good care based on agreed-upon standards, and if their billings come in lower than the agreed-upon level, they can keep a portion of the difference. If their billings come in above an acceptable level - usually because they have ordered too many unnecessary tests, office visits or inappropriate treatments - they will have to pay money back to the state or insurer.

Arkansas may seem an odd place for such a bold experiment. It has the sixth-highest poverty rate in the country, and ranks near the bottom in everything from the percentage of pregnant women getting prenatal care and the infant mortality rate to obesity, diabetes and life expectancy. It doesn't have enough doctors; all but two of the state's counties are designated as either entirely or partially medically underserved. And until recently, it was way behind on the adoption of electronic health records.

Yet Arkansas also has certain advantages. It has a governor who understands the issues very well. And it has doctors and hospitals who - faced with a State Legislature resistant to raising taxes, an imminent shortfall in state Medicaid funds and the threat of imposed managed care - agreed to support the scheme. Finally, it helps that Arkansas is a small state; when everyone knows everyone, it's easier to work out implementation problems.

Still, it will be a challenge. Bundled payments for hip and knee replacements, which have similar costs for all patients, have been previously tested. But for other conditions, not every patient's needs are the same. Some pregnant women are healthy while others have diabetes. The state and insurers will have to provide "risk adjustment" payments - in which providers are reimbursed more for treating sicker patients - and some patients with especially complicated illnesses may need to be excluded from the bundling system.

Even some low-cost conditions, like upper respiratory infections, are treated at widely varying costs, mainly because physicians prescribe different tests, numbers of office visits and medications (in 14 Arkansas counties, over 50 percent of patients with upper respiratory infections receive antibiotics, even though national guidelines say they should rarely be prescribed because most infections are viral).

But this is exactly what the new program will work to change, by providing standards for appropriate care linked to the costs of treatment and the quality of the doctor's performance compared with that of other doctors.

Maybe Arkansas's biggest challenge was getting the state's insurers to work together. On that, it has succeeded. Arkansas's two biggest private insurers, Blue Cross Blue Shield and QualChoice, are on board with Medicaid. But there is one big player missing: Medicare. To really make this innovation effective, the federal government should join in.

In the meantime, even as the state is working on implementing bundled treatments for a first round of medical conditions, it is gearing up with the second round. If Arkansas succeeds - even partly - it will show the way for the rest of the country.

    The Arkansas Innovation, NYT, 5.9.2012,
    http://opinionator.blogs.nytimes.com/2012/09/05/the-arkansas-innovation/

Lunch Trays Got Too Lean in City’s Fight Against Fat

September 4, 2012
The New York Times
By AL BAKER

Worried that children were losing the war on obesity, New York City began to slim down its school lunch offerings several years ago, replacing fries with baked potato strips and introducing nonfat chocolate milk, whole grain pasta and salad bars, among other tweaks.

In the process, the city also cut calories. So much so, city officials now acknowledge, that it often served children fewer calories than required by the federal government.

The Bloomberg administration has often found itself stymied by the powers of Albany or Washington in its policy goals, including enacting congestion pricing, erecting a stadium on the West Side of Manhattan, taxing soda or banning the use of food stamps for sugar-sweetened beverages.

But in the case of the 860,000 school lunches served daily, it ignored a set of United States Department of Agriculture requirements written in 1994, without seeking permission. City health and education officials said their aim was not to lower calories, but rather to increase the nutritional value of the foods reaching students’ mouths. But as it slowly began re-engineering those foods, there was a “secondary response,” said Cathy Nonas, a senior adviser in the city’s health department. “It dropped the calories and at sometimes below what the U.S.D.A. had as a minimum,” she said.

In replacing pork bacon strips with the turkey variety, for instance, officials cut 64 calories from one serving. And they saw no need to bulk the trays back up.

“Our mentality is to feed food to children, not nutrients to astronauts,” said Eric S. Goldstein, the chief executive for school support services for the New York City Education Department.

The city officials said new federal guidelines, which take effect this school year, proved they were right all along. The new rules reduce the minimum calorie counts by more than 200 calories in some grades and, for the first time, set calorie maximums as well. But the officials acknowledged that for older students, the new rules still demand more calories on the lunch tray than the city’s schools have been providing.

Because the city expects the state and federal governments to audit school lunches more rigorously, the Education Department’s chefs have been busy in a test kitchen in Long Island City, Queens, fine-tuning menus to meet the new nutritional standards, which include limits on sodium and more use of fruits, vegetables and whole grains. And, city officials said, they are also making sure the meals have enough calories.

Several nutritionists and academics hailed the city’s decision to leave calorie amounts lower in recent years, even if they fell short of federal rules. “If you are delivering better calories, then that is important,” said Y. Claire Wang, an assistant professor in health policy and management at the Mailman School of Public Health at Columbia University, who said she did not feel the city had been underfeeding any students.

William J. McCarthy, a professor of public health and psychology at the University of California, Los Angeles, said the city had been a leader in getting children to eat more healthy foods. “There’s been an excess of focus on trying to get the right number of calories,” Dr. McCarthy said. “The calories will take care of themselves if we get kids to make better food choices such as filling half their plate with vegetables.”

But Joel Berg, the executive director of the New York City Coalition Against Hunger, called the city’s move “reckless.”

“It is based on politics and personal whims, not nutrition science,” Mr. Berg said. “It is based on the city’s absurd belief that hunger no longer exists among children, despite federal data that proves that one in four New York City children live in food-insecure homes. The city’s one and only response to child hunger is taking food away from kids.”

The city could not say, precisely, how long students have been receiving meals with calorie counts that did not always meet the federal requirements, or exactly how many calories they were short. Under the old guidelines, most students had to receive 785 calories at lunch. The new rules require 550 calories through the fifth grade, 600 for middle school students and 750 for high schools. The maximums are 100 calories higher than the minimums.

The Education Department noted that it began introducing salad bars in schools in 2005. Under federal rules, calories derived from salad bars do not count toward meeting the minimum, but they can nonetheless provide healthy nourishment.

School districts must follow Agriculture Department guidelines to qualify for federal school lunch financing, which in New York City amounts to more than $400 million a year. But no oversight agencies seemed to be aware of the short calorie counts, and it is unlikely the city will be penalized for past years.

Officials at the Agriculture Department referred all questions to the State Education Department, which is responsible for assessing school districts’ compliance with nutritional standards. The federal officials did concede, however, that some schools around the country had difficulty in developing menus that always met all the former federal standards for every type of meal.

State officials were puzzled by the city’s acknowledgment, because they believed the city had offered the correct amount of calories to students at lunchtime. In their last analysis of the city’s program, in May 2010, they discovered evidence of “calorie deficits,” but the reason was that students took less food than was offered, said Sandy Sheedy, a school food program specialist for the state.

“I believe that if a child took every item of their menu plan, they would have reached the calorie standards that were established in law,” said Ms. Sheedy, who said the city was educated in ways to address those deficiencies.

The menu changes were part of an ambitious city campaign against childhood obesity that dates back almost a decade, and also included eliminating soda from all school vending machines; supplanting canned vegetables with fresh and frozen ones; removing artificial trans-fat from all foods served in schools; reducing sodium and increasing fiber; and removing all deep fryers.

The Bloomberg administration has also decided not to make it mandatory for schools to provide breakfast in classrooms, contending it entices children to overeat; the City Council has criticized the decision, saying it would deny food to hungry children. (Students can still get free breakfast in cafeterias before school.) Last year, the city said that the number of obese students, in kindergarten through eighth grade, had dropped 5.5 percent over the previous five years, based on the results of annual fitness exams. It was the biggest decline cited by any large city, but 21 percent of elementary and middle school children were still obese.

    Lunch Trays Got Too Lean in City’s Fight Against Fat, 4.9.2012,
    http://www.nytimes.com/2012/09/05/
    nyregion/calories-in-some-nyc-school-lunches-were-below-federal-requirements.html

Representative Charlie Rose,

Tobacco’s Friend in the House,

Dies at 73

September 4, 2012
The New York Times
By WILLIAM YARDLEY

Charlie Rose, a former United States representative from rural North Carolina who fought to protect the tobacco industry and its farmers when political and regulatory pressure on the industry were on the rise and smoking in steady decline, died on Monday in Albertville, Ala. He was 73.

The cause was complications of Parkinson’s disease, said his wife, Stacye Hefner.

Mr. Rose, a Democrat some called Mr. Tobacco, was first elected to the House in 1972. His southeastern North Carolina district was covered with tobacco farms, but the crop’s economic and geographic footprint shrank over the next two decades of his tenure.

Mr. Rose (no relation to the television interviewer of the same name) worked to ease the transition and successfully fought to preserve government price supports for tobacco even as the government was warning of its potentially lethal health effects.

“There’s no way you could represent that district and not be in support of tobacco farmers,” said Merle Black, a professor of politics at Emory University.

In the 1990s, the Clinton administration considered a significant increase in the federal tobacco tax to help pay for the ambitious health care overhaul proposed by the first lady, Hillary Rodham Clinton. Mr. Rose, the chairman of the House Agriculture Subcommittee on Peanuts and Tobacco, led the opposition.

“In the past, the Reagan and Bush administrations were pretty reasonable about taxing tobacco,” Mr. Rose said in an interview in 1995. “But I think all of us who represent tobacco states knew that the growing concern about smoking and health was going to someday lead to this type of attitude and reaction in the White House. This talk of $2 a pack is scaring us to death, and that’s putting it mildly.”

The health care plan did not pass, and the federal tobacco tax has yet to reach $2 per pack — it is now $1.01 — but Mr. Rose was correct that change was coming. He retired from Congress in 1996, two years after Republicans took control.

Charles Grandison Rose III was born Aug. 10, 1939, in Fayetteville, N.C. He graduated from Davidson College and received his law degree from the University of North Carolina at Chapel Hill. He worked as a chief district court prosecutor before he was elected to the House.

Ms. Hefner, whom he married in 1995, is the daughter of former Representative Bill Hefner of North Carolina. The couple moved to Albertville several years ago to be close to Ms. Hefner’s family.

Besides Ms. Hefner, Mr. Rose is survived by a sister, Irene Owen; a brother, Fred Rose; four children, Charles, Louise, Kelly and Parker; and a stepson, Joseph Hawk. Two previous marriages ended in divorce.

Mr. Rose was more liberal than many other Southern Democrats of his era, on issues including civil rights, and he was well regarded by other members of Congress for helping modernize the House by installing computers in offices and television cameras in the House chamber.

But he also faced ethics charges. In 1988, the House ethics committee issued him a “letter of reproof” for failing to disclose that he had converted campaign money for his personal use. In 1994, Mr. Rose agreed to pay $12,500 to settle a civil action brought by the Justice Department related to the same issue.

Mr. Rose and Ms. Hefner started a lobbying firm after he left office and represented a range of clients, including oncologists and R. J. Reynolds, the tobacco company, with which the firm still has a contract.

This article has been revised to reflect the following correction:

Correction: September 4, 2012

A previous version of this obituary misstated a school from which Mr. Rose graduated.

It was Davidson College, not Davidson University.

    Representative Charlie Rose, Tobacco’s Friend in the House, Dies at 73, NYT, 4.9.2012,
    http://www.nytimes.com/2012/09/05/us/politics/charlie-rose-us-representative-dies-at-73.html

Study Links Healthier Weight in Children

With Strict Laws on School Snacks

August 13, 2012
The New York Times
By SABRINA TAVERNISE

Adolescents in states with strict laws regulating the sale of snacks and sugary drinks in public schools gained less weight over a three-year period than those living in states with no such laws, a new study has found.

The study, published Monday in Pediatrics, found a strong association between healthier weight and tough state laws regulating food in vending machines, snack bars and other venues that were not part of the regular school meal programs. Such snacks and drinks are known as competitive foods, because they compete with school breakfasts and lunches.

The conclusions are likely to further stoke the debate over what will help reduce obesity rates, which have been rising drastically in the United States since the 1980s. So far, very little has proved effective and rates have remained stubbornly high. About a fifth of American children are obese, according to the Centers for Disease Control and Prevention.

Public health experts have urged local and state governments to remove competitive foods from schools, and in recent years states have started to pass laws that restrict their sale, either banning them outright or setting limits on the amount of sugar, fat or calories they contain.

The study tracked weight changes for 6,300 students in 40 states between 2004 and 2007, following them from fifth to eighth grade. They used the results to compare weight change over time in states with no laws regulating such food against those in states with strong laws and those with weak laws.

Researchers used a legal database to analyze state laws. Strong laws were defined as those that set out detailed nutrition standards. Laws were weak if they merely offered recommendations about foods for sale, for example, saying they should be healthy but not providing specific guidelines.

The study stopped short of saying the stronger laws were directly responsible for the better outcomes. It concluded only that such outcomes tended to happen in states with stronger laws, but that the outcomes were not necessarily the result of those laws. However, researchers added that they controlled for a number of factors that would have influenced outcomes.

Still, the correlation was substantial, researchers said, suggesting that the laws might be a factor. Students who lived in states with strong laws throughout the entire three-year period gained an average of 0.44 fewer body mass index units, or roughly 2.25 fewer pounds for a 5-foot-tall child, than adolescents in states with no policies.

The study also found that obese fifth graders who lived in states with stronger laws were more likely to reach a healthy weight by the eighth grade than those living in states with no laws. Students exposed to weaker laws, however, had weight gains that were not different from those of students in states with no laws at all.

The authors argued that the study offered evidence that local policies could be effective tools.

“Competitive-food laws can have an effect on obesity rates if the laws are specific, required and consistent,” said Daniel Taber, a fellow at the Institute for Health Research and Policy at the University of Chicago, who was one of the authors of the study.

Still, many states have no laws at all regulating the sale of such foods, and the group that helped finance the study, the Robert Wood Johnson Foundation, argued that the results made the case for a strong national standard for snacks and beverages in schools. The United States Department of Agriculture has been developing new standards for some time, but they have yet to emerge.

Some experts argue that a real reduction in the obesity rate will come only when many more local governments adopt tough policies to change the food environment. Still others say that school is such a small part of a child’s day that healthier options will make little difference when coupled with a home environment with a lot of unhealthy choices.

    Study Links Healthier Weight in Children With Strict Laws on School Snacks, NYT, 13.8.2012,
    http://www.nytimes.com/2012/08/13/health/
    research/study-links-healthy-weight-in-children-with-tough-snack-and-sugary-drinks-laws.html

In Ill Doctor,

a Surprise Reflection of Who Picks Assisted Suicide

August 11, 2012
The New York Times
By KATIE HAFNER

SEATTLE — Dr. Richard Wesley has amyotrophic lateral sclerosis, the incurable disease that lays waste to muscles while leaving the mind intact. He lives with the knowledge that an untimely death is chasing him down, but takes solace in knowing that he can decide exactly when, where and how he will die.

Under Washington State’s Death With Dignity Act, his physician has given him a prescription for a lethal dose of barbiturates. He would prefer to die naturally, but if dying becomes protracted and difficult, he plans to take the drugs and die peacefully within minutes.

“It’s like the definition of pornography,” Dr. Wesley, 67, said at his home here in Seattle, with Mount Rainier in the distance. “I’ll know it’s time to go when I see it.”

Washington followed Oregon in allowing terminally ill patients to get a prescription for drugs that will hasten death. Critics of such laws feared that poor people would be pressured to kill themselves because they or their families could not afford end-of-life care. But the demographics of patients who have gotten the prescriptions are surprisingly different than expected, according to data collected by Oregon and Washington through 2011.

Dr. Wesley is emblematic of those who have taken advantage of the law. They are overwhelmingly white, well educated and financially comfortable. And they are making the choice not because they are in pain but because they want to have the same control over their deaths that they have had over their lives.

While preparing advance medical directives and choosing hospice and palliative care over aggressive treatment have become mainstream options, physician-assisted dying remains taboo for many people. Voters in Massachusetts will consider a ballot initiative in November on a law nearly identical to those in the Pacific Northwest, but high-profile legalization efforts have failed in California, Hawaii and Maine.

Oregon put its Death With Dignity Act in place in 1997, and Washington’s law went into effect in 2009. Some officials worried that thousands of people would migrate to both states for the drugs.

“There was a lot of fear that the elderly would be lined up in their R.V.’s at the Oregon border,” said Barbara Glidewell, an assistant professor at Oregon Health and Science University.

That has not happened, although the number of people who have taken advantage of the law has risen over time. In the first years, Oregon residents who died using drugs they received under the law accounted for one in 1,000 deaths. The number is now roughly one in 500 deaths. At least 596 Oregonians have died that way since 1997. In Washington, 157 such deaths have been reported, roughly one in 1,000.

In Oregon, the number of men and women who have died that way is roughly equal, and their median age is 71. Eighty-one percent have had cancer, and 7 percent A.L.S., which is also known as Lou Gehrig’s disease. The rest have had a variety of illnesses, including lung and heart disease. The statistics are similar in Washington.

There were fears of a “slippery slope” — that the law would gradually expand to include those with nonterminal illnesses or that it would permit physicians to take a more active role in the dying process itself. But those worries have not been borne out, experts say.

Dr. Wesley, a pulmonologist and critical care physician, voted for the initiative when it was on the ballot in 2008, two years after he retired. “All my career, I believed that whatever makes people comfortable at the end of their lives is their own choice to make,” he said.

But Dr. Wesley had no idea that his vote would soon become intensely personal.

In the months before the vote, he started having trouble lifting weights in the gym. He also noticed a hollow between his left thumb and index finger where muscle should be. A month after casting his vote, he received a diagnosis of A.L.S. Patients with the disease typically live no more than four years after the onset of symptoms, but the amount of time left to them can vary widely.

In the summer of 2010, after a bout of pneumonia and with doctors agreeing that he most likely had only six months to live, Dr. Wesley got his prescription for barbiturates. But he has not used them, and the progression of his disease has slowed, although he now sits in a wheelchair that he cannot operate. He has lost the use of his limbs and, as the muscles around his lungs weaken, he relies increasingly on a respirator. His speech is clear, but finding the air with which to talk is a struggle. Yet he has seized life. He takes classes in international politics at the University of Washington and savors time with his wife and four grown children.

In both Oregon and Washington, the law is rigorous in determining who is eligible to receive the drugs. Two physicians must confirm that a patient has six months or less to live. And the request for the drugs must be made twice, 15 days apart, before they are handed out. They must be self-administered, which creates a special challenge for people with A.L.S.

Dr. Wesley said he would find a way to meet that requirement, perhaps by tipping a cup into his feeding tube.

The reasons people have given for requesting physician-assisted dying have also defied expectations.

Dr. Linda Ganzini, a professor of psychiatry at Oregon Health and Science University, published a study in 2009 of 56 Oregonians who were in the process of requesting physician-aided dying.

“Everybody thought this was going to be about pain,” Dr. Ganzini said. “It turns out pain is kind of irrelevant.”

At the time of each of the 56 patients’ requests, almost none of them rated pain as a primary motivation. By far the most common reasons, Dr. Ganzini’s study found, were the desire to be in control, to remain autonomous and to die at home. “It turns out that for this group of people, dying is less about physical symptoms than personal values,” she said.

The proposed law in Massachusetts mirrors those in Oregon and Washington. According to a telephone survey conducted in May by the Polling Institute at Western New England University, 60 percent of the surveyed voters supported “allowing people who are dying to legally obtain medication that they could use to end their lives.”

“Support isn’t just from progressive Democrats, but conservatives, too,” said Stephen Crawford, a spokesman for the Dignity 2012 campaign in Massachusetts, which supports the initiative. “It’s even a libertarian issue. The thinking is the government or my doctor won’t control my final days.”

Such laws have influential opponents, including the Roman Catholic Church, which considers suicide a sin but was an early leader in encouraging terminal patients to consider hospice care. Dr. Christine K. Cassel, a bioethicist who is president of the American Board of Internal Medicine, credits the church with that effort. “But you can see why they can go right up to that line and not cross over it,” she said.

The American Medical Association also opposes physician-assisted dying. Writing prescriptions for the drugs is antithetical to doctors’ role as healers, the group says. Many individual physicians share that concern.

“I didn’t go into medicine to kill people,” said Dr. Kenneth R. Stevens, an emeritus professor of radiation oncology at Oregon Health and Science University and vice president of the Physicians for Compassionate Care Education Foundation.

Dr. Steven Kirtland, who has been Dr. Wesley’s pulmonologist for three years, said he had little hesitation about agreeing to Dr. Wesley’s request, the only prescription for the drugs that Dr. Kirtland has written.

“I’ve seen a lot of bad deaths,” Dr. Kirtland said. “Part of our job as physicians is to help people have a good death, and, frankly, we need to do more of that.”

Dr. Wesley’s wife, Virginia Sly, has come to accept her husband’s decision. Yet she does not want the pills in the house, and he agrees. “It just feels so negative,” she said. So the prescription remains at the pharmacy, with the drugs available within 48 hours.

There are no studies of the psychological effect of having a prescription on hand, but experts say many patients who have received one find comfort in knowing they have or can get the drugs. About a third of those who fill the prescription die without using it. “I don’t know if I’ll use the medication to end my life,” Dr. Wesley said. “But I do know that it is my life, it is my death, and it should be my choice.”

    In Ill Doctor, a Surprise Reflection of Who Picks Assisted Suicide, NYT, 11.8.2012,
    http://www.nytimes.com/2012/08/12/health/policy/in-ill-doctor-a-surprise-reflection-of-who-picks-assisted-suicide.html

Imagine a World Without AIDS

July 27, 2012
The New York Times
By DANIELLE OFRI

THE beginning of the end of AIDS? The article with that title jumped out at me last week, as I did my weekly table-of-contents scan of The New England Journal of Medicine. I wasn’t prepared for the flood of emotion that overcame me. The beginning of the end? Could it really be?

For those of us who did our medical training in the late ’80s and early ’90s, AIDS saturated our lives. The whole era had a medieval feel, with visceral suffering and human decimation all around. Death was vivid, brutal and omnipresent.

Bellevue Hospital, where I trained, was one of those city hospitals that felt like ground zero for the plague. Every third admission seemed to be a patient in his mid-20s who looked as if he’d arrived from Dachau or Biafra, with nary a T-cell to his name. Horrific Kaposi’s sarcoma ulcerated these patients’ bodies. P.C.P., a brutal form of pneumonia, strangled their breathing. Fevers and infections plundered every organ system. What few defenses their bodies mustered were pummeled into insignificance.

The utter relentlessness of the disease pummeled the doctors-in-training as well. It felt as if we were slogging knee-deep in death, with a horizon that was a monochrome of despair. Witnessing your own generation dying off is not for the faint of heart.

The 17 West AIDS ward in Bellevue was always full to capacity, so H.I.V. patients overflowed into the general medical wards, and of course swamped the prison ward, the tuberculosis ward, the pediatric ward and the emergency room. We even had a “spillover” ward, 12 East, reserved for the “actively dying.” The hospital had carved out a ward of private rooms — otherwise unheard-of in a city hospital — so that these patients could have a modicum of privacy in their final days. Needless to say, 12 East was also full to capacity, with a line of patients waiting for a room to “open up.”

If you’d grabbed a random intern toward the end of my residency in 1995, and asked her if she could envision the headline “The Beginning of the End of AIDS” in less than 20 years, she would have simply stared uncomprehendingly at you with bleary eyes. More than 50,000 Americans died of AIDS that year. By 2009, the number had edged under 20,000.

In the worlds of both medicine and metaphor, the narrative arc of AIDS has almost no peer. The transformation from hopelessness to pragmatic optimism is — scientifically speaking — nothing short of miraculous. Potent combinations of antiviral medications that brought patients off their deathbeds and back to life, viral load testing and H.I.V. genotyping that helped tailor treatment regimens, screening of the blood supply, aggressive public health campaigns, prevention of maternal-fetal transmission — we could hardly have envisioned the pace of development.

After years of disappointments, H.I.V. vaccine research is heating up again, as breakthroughs in the understanding of H.I.V. immunology have identified nearly two dozen potential vaccine candidates. The apparent H.I.V. cure as a result of a bone-marrow transplant in a man known as the “Berlin patient” has stimulated tantalizing gene therapy research.

The staggering progress of these past two decades leaves me breathless, and to be honest, almost teary-eyed. For nearly every other category of disease that afflicts my patients, the treatments are largely the same as when I was an intern. Yes, we have fancier stents for our cardiac patients, and more targeted chemotherapy for our cancer patients, but the overall paradigms have shifted only incrementally.

H.I.V. has been easier to target, in part, because it is caused by a single infectious agent — as opposed to the diverse factors that influence cardiovascular disease and cancer. And then there was the avalanche of resources and the galvanizing of public activism that served to concentrate scientific efforts in a manner never seen before. By no means do I wish to belittle the impressive advances in other fields of medicine, but our oncology wards and cardiac wards still do a brisk business.

AIDS patients in the hospital are a rarity now — they are more likely to be admitted for an ulcer or a heart attack than for an H.I.V.-related illness. The overwhelming majority receive their medical care in outpatient settings, like everyone else who is living with a disease rather than dying of a disease. AIDS has settled in next to hypertension and diabetes as one of those chronic conditions that patients deal with over the course of a lifetime.

“Over the course of a lifetime.” Now there’s a concept we never thought about back then.

There is still a long way to go, of course. The 19th annual International AIDS Conference just ended on Friday, and no one is underestimating the gravity of the challenges that remain, particularly in developing countries. But to even contemplate, however tentatively, the beginning of the end is something that my peers and I never imagined happening in our lifetimes.

I often think about grim days we spent doing rounds on 17 West and 12 East. I remember the slow and tortured deaths of our patients, their emaciated bodies disintegrating into nothingness before our eyes. More tears were shed on those wards than any I’ve worked in since.

And what happened? The 17 West AIDS ward became a regular medical ward. The 12 East dying ward was turned into offices. And then, this month, the inpatient AIDS service at Bellevue closed down entirely. If that doesn’t signify the beginning of the end, I don’t know what does.

Danielle Ofri, an associate professor at New York University School of Medicine,

is the editor of the Bellevue Literary Review and the author, most recently,

of “Medicine in Translation: Journeys With My Patients.”

    Imagine a World Without AIDS, NYT, 27.7.2012,
    http://www.nytimes.com/2012/07/28/opinion/imagine-a-world-without-aids.html

The Long, Uphill Battle Against AIDS

July 27, 2012
The New York Times

The international AIDS conference in Washington has already made two points clear. There is no prospect that scientists will any time soon find the ultimate solutions to the AIDS epidemic, namely a vaccine that would prevent infection with the AIDS virus or a “cure” for people already infected with the virus. Even so, health care leaders already have many tools that have been shown in rigorous trials to prevent transmission of the virus, making it feasible to talk of controlling the epidemic within the foreseeable future. The only question is whether the nations of the world are willing to put up enough money and make the effort to do it.

An estimated 34.2 million people around the world are currently infected with H.I.V., the virus that causes AIDS. According to the United Nations agency that tracks the disease, some 23.5 million of these live in sub-Saharan Africa and another 4.2 million in India and Southeast Asia. About 1.1 million live in the United States.

This conference is the first in more than two decades to be held in the United States. It became possible only when a benighted policy that prohibited entry visas for people suffering from AIDS or infected with H.I.V. was finally overturned in 2009. It was “a bad policy, based on faulty science, that ran contrary to America’s deepest values,” Kathleen Sebelius, the secretary of health and human services, told the conference.

There has been optimistic talk at the conference about accelerating the search for a “cure” that would allow people to eventually stop taking the drugs that have prolonged many lives for decades — and about developing a truly effective vaccine. But Dr. Anthony Fauci, the American government’s top AIDS expert, made clear just how difficult those tasks will be. He told the conference that a cure was “way upstream” and depends on future research breakthroughs, and he called the most successful vaccine trial to date “humbling” because it showed only a modest degree of efficacy.

Instead of waiting for these future possibilities, Dr. Fauci and other health leaders are proposing the broad adoption of other available tools to reduce the spread of the virus so as to produce an “AIDS-free generation,” a goal enunciated last year by Secretary of State Hillary Rodham Clinton. In her talk at the conference this week, Mrs. Clinton anticipated a time when virtually no child anywhere would be born with the virus, teenagers and young adults would have much less risk of becoming infected and those that do become infected would have access to treatments to prevent them from developing full-fledged AIDS or passing the virus on to others.

She cited the importance of condoms, counseling and testing; voluntary circumcision to protect males from becoming infected by a female partner; treating mothers to prevent transmission to their babies; and treating infected people with antiviral drugs as early as possible to enhance their own health and lessen the likelihood they will spread the virus to others. Studies also show that people at high risk of infection can protect themselves by taking an antiviral pill daily.

All that will take money. There is a widespread misconception that donors from well-heeled international organizations, rich countries and charitable foundations are the main source of money to combat the global epidemic. The share provided by international donors has, in fact, stagnated while the share provided by low- and middle-income countries to fight the epidemic on their own turf has been growing rapidly. Last year, the poorer countries invested $8.6 billion of their own money while international financing remained at $8.2 billion, the 2008 level, according to a report from the United Nations AIDS agency. Both groups will need to expand their contributions to meet ambitious treatment and prevention goals set for coming years.

Mrs. Clinton announced additional financing for AIDS programs, but perhaps her most important pledge was that the United States will issue a blueprint by Dec. 1 setting forth a road map for how to achieve an AIDS-free generation. To be effective, it will need to set priorities and define specific health outcomes and coverage targets and require detailed annual reports on the progress being made. It is unacceptable that millions of people sick enough to need treatment are not getting it.

    The Long, Uphill Battle Against AIDS, NYT, 27.7.2012,
    http://www.nytimes.com/2012/07/28/opinion/the-long-uphill-battle-against-aids.html

Hospitals Worry Over Cut in Fund for Uninsured

July 26, 2012
The New York Times
By NINA BERNSTEIN

President Obama’s health care law is putting new strains on some of the nation’s most hard-pressed hospitals, by cutting aid they use to pay for emergency care for illegal immigrants, which they have long been required to provide.

The federal government has been spending $20 billion annually to reimburse these hospitals — most in poor urban and rural areas — for treating more than their share of the uninsured, including illegal immigrants. The health care law will eventually cut that money in half, based on the premise that fewer people will lack insurance after the law takes effect.

But the estimated 11 million people now living illegally in the United States are not covered by the health care law. Its sponsors, seeking to sidestep the contentious debate over immigration, excluded them from the law’s benefits.

As a result, so-called safety-net hospitals said the cuts would deal a severe blow to their finances.

The hospitals are coming under this pressure because many of their uninsured patients are illegal immigrants, and because their large pools of uninsured or poorly insured patients are not expected to be reduced significantly under the Affordable Care Act, even as federal aid shrinks.

The hospitals range from prominent public ones, like Bellevue Hospital Center in Manhattan, to neighborhood mainstays like Lutheran Medical Center in Brooklyn and Scripps Mercy Hospital in San Diego. They include small rural outposts like Othello Community Hospital in Washington State, which receives a steady flow of farmworkers who live in the country illegally.

No matter where they are, all hospitals are obliged under federal law to treat anyone who arrives at the emergency room, regardless of their immigration status.

“That’s the 800-pound gorilla in the room, and not just in New York — in Texas, in California, in Florida,” Lutheran’s chief executive, Wendy Z. Goldstein, said.

Lutheran Medical Center is in the Sunset Park neighborhood, where low-wage earning Chinese and Latino communities converge near an expressway. Hospitals are not allowed to record patients’ immigration status, but Ms. Goldstein estimated that 20 percent of its patients were what she called “the undocumented — not only uninsured, but uninsurable.”

She said Congressional staff members acknowledged that the health care law would scale back the money that helps pay for emergency care for such patients, but were reluctant to tackle the issue.

“I was told in Washington that they understand that this is a problem, but immigration is just too hot to touch,” she said.

The Affordable Care Act sets up state exchanges to reduce the cost of commercial health insurance, but people must prove citizenship or legal immigration status to take part. They must show similar documentation to apply for Medicaid benefits that are expanded under the law.

The act did call for increasing a little-known national network of 1,200 community health centers that provide primary care to the needy, regardless of their immigration status. But that plan, which could potentially steer more of the uninsured away from costly hospital care, was curtailed by Congressional budget cuts last year.

That leaves hospitals like Lutheran, which is nonprofit and has run a string of such primary care centers for 40 years, facing cuts at both ends.

On a recent weekday in Lutheran’s emergency room, a Chinese mother of two stared sadly through the porthole of an isolation unit. The woman had active tuberculosis and needed surgery to drain fluid from one lung, said Josh Liu, a patient liaison.

The disease had been discovered during a checkup at one of Lutheran’s primary care centers, where the sliding scale fee starts at $15. But the woman, an illegal immigrant, had no way to pay for the surgery.

Another patient, a gaunt 44-year-old man from Ecuador, had been in New York eight years, installing wood floors, one in Rockefeller Center. The man had been afraid to seek care because he feared deportation. Finally, the pain in his stomach was too much to bear.

Dr. Daniel J. Giaccio, leading the residents on their rounds, used the notches on the man’s worn belt to underscore his diagnosis, severe B-12 deficiency anemia. The woodworker had lost 30 pounds in a month, and his hands and feet were numb. Reversing the damage could take months.

“This is a severe case of sensory loss,” Dr. Giaccio said. “Usually we pick it up much sooner.”

In some states, including New York, hospitals caring for illegal immigrants in life-threatening situations can seek payment case by case, from a program known as emergency Medicaid. But the program has many restrictions and will not make up for the cuts in the $20 billion pool, hospital executives said.

Groups that favor more restrictive immigration policies said they agreed that the cuts in the $20 billion fund were a burden. They said hospitals obviously had a duty to provide emergency care for everybody, including illegal immigrants.

“I kind of like living in a society where we don’t let people die on the steps of the emergency room,” said Mark Krikorian, the executive director of one such group, the Center for Immigration Studies in Washington.

But he said the answer lay in enforcing laws, so that illegal immigrants leave the country, not in extending health coverage.

“There is no ideal resolution to the problem, other than reducing the illegal population,” he said. “Incorporating illegal immigrants into health exchanges or directly taxpayer-funded health care legitimizes their presence.”

The Obama administration said the Affordable Care Act supported safety-net hospitals in other ways, pointing to measures that raise payments for primary care and give bonuses for improvements in quality.

“We are taking important steps to make health care more affordable and accessible for millions of Americans,” Erin Shields Britt, a spokeswoman for the Department of Health and Human Services, said in an e-mail. “Health reform isn’t the place to fix our broken immigration system.”

With illegal immigration an issue in the presidential campaign, many politicians continue to steer clear of addressing the cuts.

Hospitals in New York State now receive $2.84 billion of the nation’s $20 billion in so-called disproportionate share hospital payments.

Those payments start shrinking in 2014 under the law, and drop to $10 billion by 2019.

“It is a difficult time to really advocate around this issue, because there is so much antipathy against new immigrants,” said Alan Aviles, president and chief executive of the Health and Hospitals Corporation.

The corporation runs New York City’s public hospitals, which treated 480,000 uninsured patients last year, an estimated 40 percent of them illegal immigrants. The same worries haunt tiny Othello Community Hospital, in Washington state’s rural Adams County, where it is the only hospital for miles around.

Last year, the state began requiring that participants in a basic health plan prove that they are citizens or legal residents.

As a consequence, 4,000 out of the 4,400 patients at the nearby primary care center, mostly immigrant farmworkers, lost their coverage, leaving Othello more financially vulnerable when those people need emergency care.

In Central California, Harry Foster, director of the Family HealthCare Network, another primary care center, called the Affordable Care Act “a double-edged sword.”

Many low-wage earning citizens now lack employer-sponsored health insurance, and the health care industry is already competing for those who will gain coverage through the law. But no one is competing to treat those it leaves out, he said.

“We will receive more and more of those patients,” he said, estimating that 40 percent of the area’s residents were illegal immigrant farmworkers. “But financially, we can’t take on all the uninsured patients in the area, to the exclusion of all the others, and survive.”

In many ways Lutheran, a century-old hospital that refurbished a defunct factory to serve as its hub in the 1960s, has been a prototype of the law’s new model: coordinating primary and preventive care to improve health outcomes while curbing costs. Yet it stands to lose $25 million from the cuts.

“This is an unintended consequence of the law,” said Ms. Goldstein, the hospital’s chief executive. “But so far, nobody is doing anything to resolve it.”

    Hospitals Worry Over Cut in Fund for Uninsured, NYT, 26.7.2012,
    http://www.nytimes.com/2012/07/27/nyregion/affordable-care-act-reduces-a-fund-for-the-uninsured.html

Robert S. Ledley,

Who Revolutionized Radiology,

Is Dead at 86

July 25, 2012
The New York Times
By KATIE HAFNER

Robert S. Ledley, a dentist turned biomedical researcher and computing trailblazer who invented the first CT scanner capable of producing cross-sectional images of any part of the human body, died on Tuesday in Kensington, Md. He was 86.

The cause was Alzheimer’s disease, his son Fred said.

Nearly every field of medicine has been affected by the whole-body CT scanner, short for computerized tomography. “Many of the CT scanners we see in hospitals are based on the Ledley design,” said Joseph A. November, a professor of history at the University of South Carolina, who is writing a biography of Dr. Ledley.

Before the advent of CT scanning in the early 1970s, radiologists had limited tools. CT scanning gave them not only a far higher resolution than traditional X-rays but also three-dimensional, cross-sectional images to work with, significantly reducing the need for exploratory surgery and its attendant risks. It also changed the way physicians follow cancers and their response to therapy.

Dr. Ledley was an early advocate of computer-based medical diagnostics, a full half-century before medical residents began punching patients’ symptoms into online diagnostic programs.

In 1959, he published a paper in the journal Science titled “Reasoning Foundations of Medical Diagnosis.” It had a broad impact in the medical field.

“In the summer before I started medical school, I read that paper, and it was eye-opening,” said Dr. Alan N. Schechter, chief of the molecular medicine branch at the National Institutes of Health and a longtime colleague of Dr. Ledley’s. “The idea that computers could assist physicians in diagnosis and choice of therapy was a totally new understanding of the process of medical diagnosis.”

Robert Steven Ledley was born on June 28, 1926, in Flushing, Queens. His father, Joseph, was an accountant; his mother, Kate, was a teacher. He attended the Horace Mann School and studied physics at Columbia. Dr. Ledley hoped to pursue a career in physics, but his parents, worried about the scarcity of jobs in the field, urged him to become a dentist.

“His family said he could study physics as long as he also became a licensed dentist, so he could always make a living doing dentistry,” Professor November said.

After receiving his D.D.S. from New York University in 1948, Dr. Ledley enrolled as a graduate student at Columbia to study physics. He received his master’s degree in physics in 1950. His professors included the Nobel Prize winners Enrico Fermi, Hans Bethe and I. I. Rabi. “Rabi joked that Ledley was the only physicist who could pull a man’s tooth,” Professor November said.

The year before, he had married Terry Wachtell, a music major at Queens College. At his urging, she switched to math, earned a master’s degree in the subject and became a mathematics teacher.

In 1951, during the Korean War, Dr. Ledley was in the Army Dental Corps, assigned to a research unit at Walter Reed Army Medical Center in Washington, where he worked on improving prosthetic dental devices.

Dr. Ledley set out to optimize the fitting of dentures by determining the mean slope of each tooth relative to the surface of the piece of food being chewed. His work, which married dentistry and physics, attracted national attention. An article by The Associated Press carried the headline “Mathematics Used to Keep False Teeth in Place.”

After his discharge from the Army, he went to work in Washington at the National Bureau of Standards’ Dental Materials Section, where he also helped his wife get a job, as a programmer on the Standards Eastern Automatic Computer, or SEAC. It was she who introduced him to computers.

Fascinated by the machine, he learned to program the computer by studying the manuals and programs — punched out on long strips of paper tape — that his wife brought home. Before long, Dr. Ledley was working directly with the SEAC and focusing on the role that computers might play in solving biomedical problems.

“I had previously realized that although, conceptually, physics equations could be written to describe any biomedical phenomenon, such equations would be so complex that they could not feasibly be solved in closed form,” he said in a 1990 talk. “Thus SEAC would be my panacea, because the equations would become tractable to numerical methods of solution.”

In 1956, Dr. Ledley was hired as an assistant professor of electrical engineering at the George Washington University School of Engineering and Applied Science. That year, he began to collaborate with Lee B. Lusted, a radiologist and electrical engineer, on developing ways to teach physicians and biomedical researchers to use electronic digital computers in their work.

In 1960, Dr. Ledley founded the National Biomedical Research Foundation, a nonprofit organization dedicated to promoting the use of computing methods among biomedical scientists.

In addition to his son Fred, Dr. Ledley, who lived in Laurel, Md., is survived by his wife; another son, Gary; and four grandchildren.

Dr. Ledley began his work on CT scanning in 1973. Building on earlier work by the British engineer and Nobel Prize winner Sir Godfrey Hounsfield, whose scanner could be used only on patients’ heads, he assembled a group at Georgetown to build the Automatic Computerized Transverse Axial, or ACTA, scanner, which could scan the entire body.

“He’s best known for the CT scanner, but that was a natural outgrowth of a career of working in the field of pattern recognition, image analysis and applications of computers to medicine,” Fred Ledley said.

In 1974, Dr. Ledley established the Digital Information Science Corporation, selling the machines for $300,000 each. The next year, soon after obtaining the patent for the ACTA scanner, he sold his company to Pfizer, which briefly dominated the medical imaging market before losing ground to General Electric and Siemens.

Dr. Ledley was inducted into the National Inventors Hall of Fame in 1990 and awarded the National Medal of Technology and Innovation by President Bill Clinton in 1997. The original prototype of the ACTA scanner is at the Smithsonian Institution.

    Robert S. Ledley, Who Revolutionized Radiology, Is Dead at 86, NYT, 25.7.2012,
    http://www.nytimes.com/2012/07/26/us/robert-s-ledley-inventor-of-whole-body-ct-scanner-dies-at-86.html

W.H.O. Declares Diesel Fumes Cause Lung Cancer

June 12, 2012
The New York Times
By DONALD G. McNEIL Jr.

Diesel fumes cause lung cancer, the World Health Organization declared Tuesday, and experts said they were more carcinogenic than secondhand cigarette smoke.

The W.H.O. decision, the first to elevate diesel to the “known carcinogen” level, may eventually affect some American workers who are heavily exposed to exhaust. It is particularly relevant to poor countries, where trucks, generators, and farm and factory machinery routinely belch clouds of sooty smoke and fill the air with sulfurous particulates.

The United States and other wealthy nations have less of a problem because they require modern diesel engines to burn much cleaner than they did even a decade ago. Most industries, like mining, already have limits on the amount of diesel fumes to which workers may be exposed.

The medical director of the American Cancer Society praised the ruling by the W.H.O.’s International Agency for Research on Cancer, saying his group “has for a long time had concerns about diesel.”

The cancer society is likely to come to the same conclusion the next time its scientific committee meets, said the director, Dr. Otis W. Brawley.

“I don’t think it’s bad to have a diesel car,” Dr. Brawley added. “I don’t think it’s good to breathe its exhaust. I’m not concerned about people who walk past a diesel vehicle, I’m a little concerned about people like toll collectors, and I’m very concerned about people like miners, who work where exhaust is concentrated.”

Debra T. Silverman, a cancer researcher for the United States government who headed an influential study published in March that led to Tuesday’s decision, said she was “totally in support” of the W.H.O. ruling and expected that the government would soon follow suit in declaring diesel exhaust a carcinogen.

Three separate federal agencies already classify diesel exhaust as a “likely carcinogen,” a “potential occupational carcinogen” or “reasonably anticipated to be a human carcinogen.”

Dr. Silverman, chief of environmental epidemiology for the National Cancer Institute, said her study of 50 years of exposure to diesel fumes by 12,000 miners showed that nonsmoking miners who were heavily exposed to diesel fumes for years had seven times the normal lung cancer risk of nonsmokers.

The W.H.O. decision was announced Tuesday in Lyon, France, after a weeklong scientific meeting. It also said diesel exhaust was a possible cause of bladder cancer. Diesel exhaust now shares the W.H.O.’s Group 1 carcinogen status with smoking, asbestos, ultraviolet radiation, alcohol and other elements that pose cancer risks.

Dr. Silverman said her research indicated that occupational diesel exposure was a far greater lung cancer risk than passive cigarette smoking, but a much smaller risk than smoking two packs a day. For years, the Environmental Protection Agency, the National Institute for Occupational Safety and Health, and the National Toxicology Program of the National Institutes of Health have rated diesel as a potential, not proven, carcinogen.

The Diesel Technology Forum, which represents car and truck companies and others that make diesel engines, reacted cautiously to the W.H.O. ruling, noting that modern diesel engines used in the United States and other wealthy countries burn low sulfur fuel, so new trucks and buses emit 98 percent less particulates than old ones did and 99 percent less nitrogen oxide, which adds to ozone buildup.

Allen Schaeffer, the forum’s executive director, said the studies considered by the W.H.O. “gave more weight to studies of exposure from technology from the 1950s, when there was no regulation.”

Ultra-low-sulfur fuel was introduced in 2000 and became mandatory in 2006, he said, and about a quarter of the American truck fleet was built after that mandate was passed. The government estimates that the entire truck fleet is replaced every 12 to 15 years, he added.

Many studies have suggested links between diesel and lung cancer, but Dr. Silverman said hers was the first to measure with precision how much diesel exhaust each group of mineworkers was exposed to. Her study clearly established that the more a miner was exposed to diesel, the greater his cancer risk, she said.

“Now we need to focus on managing exposures to diesel exhaust,” Dr. Brawley said.

    W.H.O. Declares Diesel Fumes Cause Lung Cancer, NYT, 12.6.2012,
    http://www.nytimes.com/2012/06/13/health/diesel-fumes-cause-lung-cancer-who-says.html

Risky Rise of the Good-Grade Pill

June 9, 2012
The New York Times
By ALAN SCHWARZ

He steered into the high school parking lot, clicked off the ignition and scanned the scraps of his recent weeks. Crinkled chip bags on the dashboard. Soda cups at his feet. And on the passenger seat, a rumpled SAT practice book whose owner had been told since fourth grade he was headed to the Ivy League. Pencils up in 20 minutes.

The boy exhaled. Before opening the car door, he recalled recently, he twisted open a capsule of orange powder and arranged it in a neat line on the armrest. He leaned over, closed one nostril and snorted it.

Throughout the parking lot, he said, eight of his friends did the same thing.

The drug was not cocaine or heroin, but Adderall, an amphetamine prescribed for attention deficit hyperactivity disorder that the boy said he and his friends routinely shared to study late into the night, focus during tests and ultimately get the grades worthy of their prestigious high school in an affluent suburb of New York City. The drug did more than just jolt them awake for the 8 a.m. SAT; it gave them a tunnel focus tailor-made for the marathon of tests long known to make or break college applications.

“Everyone in school either has a prescription or has a friend who does,” the boy said.

At high schools across the United States, pressure over grades and competition for college admissions are encouraging students to abuse prescription stimulants, according to interviews with students, parents and doctors. Pills that have been a staple in some college and graduate school circles are going from rare to routine in many academically competitive high schools, where teenagers say they get them from friends, buy them from student dealers or fake symptoms to their parents and doctors to get prescriptions.

Of the more than 200 students, school officials, parents and others contacted for this article, about 40 agreed to share their experiences. Most students spoke on the condition that they be identified by only a first or middle name, or not at all, out of concern for their college prospects or their school systems’ reputations — and their own.

“It’s throughout all the private schools here,” said DeAnsin Parker, a New York psychologist who treats many adolescents from affluent neighborhoods like the Upper East Side. “It’s not as if there is one school where this is the culture. This is the culture.”

Observed Gary Boggs, a special agent for the Drug Enforcement Administration, “We’re seeing it all across the United States.”

The D.E.A. lists prescription stimulants like Adderall and Vyvanse (amphetamines) and Ritalin and Focalin (methylphenidates) as Class 2 controlled substances — the same as cocaine and morphine — because they rank among the most addictive substances that have a medical use. (By comparison, the long-abused anti-anxiety drug Valium is in the lower Class 4.) So they carry high legal risks, too, as few teenagers appreciate that merely giving a friend an Adderall or Vyvanse pill is the same as selling it and can be prosecuted as a felony.

While these medicines tend to calm people with A.D.H.D., those without the disorder find that just one pill can jolt them with the energy and focus to push through all-night homework binges and stay awake during exams afterward. “It’s like it does your work for you,” said William, a recent graduate of the Birch Wathen Lenox School on the Upper East Side of Manhattan.

But abuse of prescription stimulants can lead to depression and mood swings (from sleep deprivation), heart irregularities and acute exhaustion or psychosis during withdrawal, doctors say. Little is known about the long-term effects of abuse of stimulants among the young. Drug counselors say that for some teenagers, the pills eventually become an entry to the abuse of painkillers and sleep aids.

“Once you break the seal on using pills, or any of that stuff, it’s not scary anymore — especially when you’re getting A’s,” said the boy who snorted Adderall in the parking lot. He spoke from the couch of his drug counselor, detailing how he later became addicted to the painkiller Percocet and eventually heroin.

Paul L. Hokemeyer, a family therapist at Caron Treatment Centers in Manhattan, said: “Children have prefrontal cortexes that are not fully developed, and we’re changing the chemistry of the brain. That’s what these drugs do. It’s one thing if you have a real deficiency — the medicine is really important to those people — but not if your deficiency is not getting into Brown.”

The number of prescriptions for A.D.H.D. medications dispensed for young people ages 10 to 19 has risen 26 percent since 2007, to almost 21 million yearly, according to IMS Health, a health care information company — a number that experts estimate corresponds to more than two million individuals. But there is no reliable research on how many high school students take stimulants as a study aid. Doctors and teenagers from more than 15 schools across the nation with high academic standards estimated that the portion of students who do so ranges from 15 percent to 40 percent.

“They’re the A students, sometimes the B students, who are trying to get good grades,” said one senior at Lower Merion High School in Ardmore, a Philadelphia suburb, who said he makes hundreds of dollars a week selling prescription drugs, usually priced at $5 to $20 per pill, to classmates as young as freshmen. “They’re the quote-unquote good kids, basically.”

The trend was driven home last month to Nan Radulovic, a psychotherapist in Santa Monica, Calif. Within a few days, she said, an 11th grader, a ninth grader and an eighth grader asked for prescriptions for Adderall solely for better grades. From one girl, she recalled, it was not quite a request.

“If you don’t give me the prescription,” Dr. Radulovic said the girl told her, “I’ll just get it from kids at school.”

Keeping Everyone Happy

Madeleine surveyed her schedule of five Advanced Placement classes, field hockey and several other extracurricular activities and knew she could not handle it all. The first physics test of the year — inclines, friction, drag — loomed ominously over her college prospects. A star senior at her Roman Catholic school in Bethesda, Md., Madeleine knew a friend whose grades had gone from B’s to A’s after being prescribed Ritalin, so she asked her for a pill.

She got a 95. Thereafter, Madeleine recalled, she got Adderall and Vyvanse capsules the rest of the year from various classmates — not in exchange for money, she said, but for tutoring them in calculus or proofreading their English papers.

“Can I get a drink of water?” Madeleine said she would ask the teacher in one class, before excusing herself and heading to the water fountain. Making sure no one was watching, she would remove a 40-milligram Vyvanse capsule from her purse and swallow it. After 30 minutes, the buzz began, she said: laser focus, instant recall and the fortitude to crush any test in her path.

“People would have never looked at me and thought I used drugs like that — I wasn’t that kid,” said Madeleine, who has just completed her freshman year at an Ivy League college and continues to use stimulants occasionally. “It wasn’t that hard of a decision. Do I want only four hours of sleep and be a mess, and then underperform on the test and then in field hockey? Or make the teachers happy and the coach happy and get good grades, get into a good college and make my parents happy?”

Madeleine estimated that one-third of her classmates at her small school, most of whom she knew well, used stimulants without a prescription to boost their scholastic performance. Many students across the United States made similar estimates for their schools, all of them emphasizing that the drugs were used not to get high, but mostly by conscientious students to work harder and meet ever-rising academic expectations.

These estimates can be neither confirmed nor refuted because little data captures this specific type of drug misuse. A respected annual survey financed by the National Institute on Drug Abuse, “Monitoring the Future,” reports that abuse of prescription amphetamines by 10th and 12th graders nationally has actually dipped from the 1990s and is remaining relatively steady at about 10 percent.

However, some experts note that the survey does not focus on the demographic where they believe such abuse is rising steadily — students at high-pressure high schools — and also that many teenagers barely know that what they often call “study drugs” are in fact illegal amphetamines.

“Isn’t it just like a vitamin?” asked one high school junior from Eastchester, a suburb of New York.

Liz Jorgensen, a licensed addiction specialist who runs Insight Counseling in Ridgefield, Conn., said her small center had treated “at least 50 or 60” high school students from southern Connecticut this school year alone who had abused prescription stimulants for academics. Ms. Jorgensen said some of those teenagers landed in rehab directly from the stimulants or, more often, grew comfortable with prescription drugs in general and began abusing prescription painkillers like OxyContin.

A spokesman for Shire, which manufactures Vyvanse and Adderall’s extended-release capsules, said studies had shown no link between prescribed use of those drugs and later abuse.

Dr. Jeff Jonas, Shire’s senior vice president for research and development, said that the company was greatly concerned about the misuse of its stimulants but that the rate was very small. “I’m not aware of any systematic data that suggests there’s a widespread problem,” he said. “You can always find people who testify that it happens.”

Students who sell prescription stimulants to their classmates focus on their burdens and insecurities. One girl who sells to fellow students at Long Beach High School on Long Island said: “These kids would get in trouble if they don’t do well in school. When people take tests, it’s immediately, ‘Who am I getting Adderall from?’ They’re always looking for it.”

Every school identified in this article was contacted regarding statements by its students and stimulant abuse in general. Those that responded generally said that they were concerned about some teenagers turning to these drugs, but that their numbers were far smaller than the students said.

David Weiss, superintendent of Long Beach Public Schools, said the survey his district used to gauge student drug use asked about only prescription medications in general, not stimulants specifically.

“It has not been a surface issue for us — we’re much more conscious of alcohol or other drug use,” Mr. Weiss said in a telephone interview. “We haven’t had word that it’s a widespread issue.”

Douglas Young, a spokesman for the Lower Merion School District outside Philadelphia, said prescription stimulant abuse was covered in various student-wellness initiatives as well as in the 10th-grade health curriculum. Mr. Young expressed frustration that many parents seemed oblivious to the problem.

“It’s time for a serious wake-up call,” Mr. Young said. “Straight A’s and high SAT scores look great on paper, but they aren’t reflective measures of a student’s health and well-being. We need to better understand the pressures and temptations, and ultimately we need to embrace new definitions of student success. For many families and communities, that’s simply not happening.”

Fooling the Doctors

During an interview in March, the dealer at Lower Merion High reached into his pocket and pulled out the container for his daily stash of the prescription stimulants Concerta and Focalin: a hollowed-out bullet. Unlike his other products — marijuana and heroin, which come from higher-level dealers — his amphetamines came from a more trusted, and trusting, source, he said.

“I lie to my psychiatrist — I expressed feelings I didn’t really have, knowing the consequences of it,” he said, standing in a park a few miles from the high school. “I tell the doctor, ‘I find myself very distracted, and I feel this really deep pain inside, like I’m anxious all the time,’ or something like that.”

He coughed out a chuckle and added proudly, “Generally, if you keep playing the angsty-teen role, you’ll get something good.”

Christine, a junior sitting nearby, said she followed the well-known lines to get her drugs directly and legally, a script for scripts. “I’m not able to focus on schoolwork,” she said in a mockingly anxious voice. “I’m constantly looking out the window.” Although she often uses the drugs herself, snorting them for a faster and more intense effect, she said she preferred to save them for when her customers crave them most.

“Right before everybody took the PSATs, a bunch of kids went to the bathroom to snort their Addies,” she said.

This is one of the more vexing problems with stimulants in high schools, experts said — the drugs enter the schools via students who get them legally, if not legitimately.

Older A.D.H.D. drugs required low doses every few hours, and schools, not wanting students to carry the drugs themselves, had the school nurse hold and dispense the pills. Newer long-lasting versions like Adderall XR and Vyvanse allow parents to give children a single dose in the morning, often unaware that the pills can go down a pants pocket as easily as the throat. Some students said they took their pills only during the week and gave their weekend pills to friends.

The mother of one high school freshman in Westchester County said she would open the kitchen cabinet every morning and watch her son take his prescribed dose of Ritalin. She noticed one day that the capsule was strangely airy and held it up to the light. It was empty.

“There were a few times we were short in the month, and I couldn’t understand why,” recalled the woman, whose son was in eighth grade at the time. “It never dawned on me until I found those empty capsules, and then I started discovering the little packets of powder. He was selling it to other kids.”

A number of teenagers interviewed laughed at the ease with which they got some doctors to write prescriptions for A.D.H.D. The disorder’s definition requires inattentiveness, hyperactivity or impulse control to present “clinically significant impairment” in at least two settings (school and home, for example), according to the Centers for Disease Control and Prevention. Crucially, some of this impairment must have been in evidence by age 7; a proper diagnosis for a teenager claiming to have A.D.H.D., several doctors said, requires interviewing parents, teachers and others to confirm that the problems existed long before.

Many youngsters with prescriptions said their doctors merely listened to their stories and took out their prescription pads. Dr. Hilda R. Roque, a primary-care physician in West New York, N.J., said she never prescribed A.D.H.D. medicine but knew many doctors who did. She said many parents could push as hard for prescriptions as their children did, telling her: “My child is not doing well in school. I understand there are meds he can take to make him smarter.”

“To get a prescription for Adderall was the Golden Ticket — it really was,” said William, the recent graduate of Birch Wathen in Manhattan.

A high school senior in Connecticut who has used his friend’s Adderall for school said: “These are academic steroids. But usually, parents don’t get the steroids for you.”

As with the steroids taken by athletes, the downside of prescription stimulants appears after they provide the desired short-term competitive benefits. This was the case with a recent graduate of McLean High School in Virginia, one of the top public schools in the Washington area.

Late in his sophomore year, the boy wanted some help to raise his B average — far from what top colleges expected, especially from a McLean student. So he told his psychologist what she needed to hear for a diagnosis of A.D.H.D. — even gazing out the window during the appointment for effect — and was soon getting 30 pills of Adderall every month, 10 milligrams each. They worked. He focused late into the night studying, concentrated better during exams and got an A-minus average for his junior year.

“I wanted to do everything I could to get into the quote-unquote right school,” he recalled recently.

As senior year began, when another round of SATs and one last set of good grades could put him over the top, the boy said he still had trouble concentrating. The doctor prescribed 30 milligrams a day. When college applications hit, he bought extra pills for $5 apiece from a girl in French class who had fooled her psychiatrist, too, and began taking several on some days.

The boy said that as his A-minus average continued through senior year, no one suspected that “a kid who went to Bible camp” and had so improved his grades could be abusing drugs. By the time he was accepted and had enrolled at a good but not great college, he was up to 300 milligrams a day — constantly taking more to stave off the inevitable crash.

One night, after he had taken about 400 milligrams, his heart started beating wildly. He began hallucinating and then convulsing. He was rushed to the emergency room and wound up spending seven months at a drug rehabilitation center.

To his surprise, two of 20 fellow patients there had also landed in rehab solely from abusing stimulants in high school.

“No one seems to think that it’s a real thing — adults on the outside looking in,” the boy said. “The other kids in rehab thought we weren’t addicts because Adderall wasn’t a real drug. It’s so underestimated.”

‘No Way You’d Notice’

The Sklar family lives near the top of a daunting hill in Ardsley, a comfortable suburb north of New York City. Ardsley High School sends dozens of graduates every year to Ivy League-caliber colleges. When students there use Facebook, they all know that its founder, Mark Zuckerberg, once walked the same halls.

At their kitchen table after school last month, Dodi Sklar listened as her ninth-grade son, Jonathan, described how some classmates already abused stimulants — long before SATs and college applications. An accomplished student who said he would never join them, Jonathan described the ease with which he could.

“There’s no way you’d notice — that’s why so many kids are doing it,” he told his mother. “I could say I’m going for a run, call someone I know who does it, get some pills from them, take them, come home and work. Just do it. You’d be just glad that I was studying hard.”

His mother sighed. “As a parent you worry about driving, you worry about drinking, you worry about all kinds of health and mental issues, social issues,” she said. “Now I have to worry about this, too? Really? This shouldn’t be what they need to do to get where they want to.”

Asked if the improper use of stimulants was cheating, students were split. Some considered that the extra studying hours and the heightened focus during exams amounted to an unfair advantage. Many countered that the drugs “don’t give you the answers” and defended their use as a personal choice for test preparation, akin to tutoring.

One consensus was clear: users were becoming more common, they said, and some students who would rather not take the drugs would be compelled to join them because of the competition over class rank and colleges’ interest.

A current law student in Manhattan, who said he dealt Adderall regularly while at his high school in Sarasota, Fla., said that insecurity was a main part of his sales pitch: that those students “would feel at a huge disadvantage,” he said.

William, the recent Birch Wathen graduate, said prescription stimulants became a point of contention when a girl with otherwise middling grades suddenly improved her SAT score.

“There was an uproar among kids — some people were really proud of her, and some kids were really jealous and mad,” he recalled. “I don’t remember if she had a prescription, but she definitely took more than was prescribed. People would say, ‘You’re so smart,’ and she’d say, ‘It wasn’t all me.’ ”

One sophomore at Harvard-Westlake School in Studio City, Calif., is unsure what his future holds. Enrolled at one of the top high schools on the West Coast, he said he tried a friend’s Adderall this semester but disliked the sensation of his heart beating rapidly for hours. He vowed never to do it again.

But as he watches upperclassmen regularly abuse stimulants as they compete for top college slots, he is not quite sure.

“Junior and senior year is a whole new ballgame,” the boy said. “I promised myself I wouldn’t take it, but that can easily, easily change. I can be convinced.”

    Risky Rise of the Good-Grade Pill, NYT, 9.6.2012,
    http://www.nytimes.com/2012/06/10/education/seeking-academic-edge-teenagers-abuse-stimulants.html

Obama Was Pushed by Drug Industry, E-Mails Suggest

June 8, 2012
The New York Times
By PETER BAKER

WASHINGTON — After weeks of talks, drug industry lobbyists were growing nervous. To cut a deal with the White House on overhauling health care, they needed to be sure that President Obama would stop a proposal intended to bring down medicine prices.

On June 3, 2009, one of the lobbyists e-mailed Nancy-Ann DeParle, the president’s health care adviser. Ms. DeParle reassured the lobbyist. Although Mr. Obama was overseas, she wrote, she and other top officials had “made decision, based on how constructive you guys have been, to oppose importation” on a different proposal.

Just like that, Mr. Obama’s staff signaled a willingness to put aside support for the reimportation of prescription medicines at lower prices and by doing so solidified a compact with an industry the president had vilified on the campaign trail. Central to Mr. Obama’s drive to remake the nation’s health care system was an unlikely collaboration with the pharmaceutical industry that forced unappealing trade-offs.

The e-mail exchange three years ago was among a cache of messages obtained from the industry and released in recent weeks by House Republicans — including a new batch put out Friday detailing the industry’s advertising campaign supporting Mr. Obama’s health care overhaul. The broad contours of his dealings with the industry were known in 2009, but the newly public e-mails open a window into the compromises underlying a health care law now awaiting the judgment of the Supreme Court.

Mr. Obama’s deal-making in 2009 represented a pivotal moment in his young presidency, a juncture where the heady idealism of the campaign trail collided with the messy reality of Washington policy making. A president who had promised to negotiate on C-Span cut a closed-door deal with a powerful lobby, signifying to disillusioned liberal supporters a loss of innocence, or perhaps even the triumph of cynicism.

But the bargain was one that the president deemed necessary to forestall industry opposition that had thwarted efforts to cover the uninsured for generations. Without the deal, in which the industry agreed to provide $80 billion to expand coverage in exchange for protection from policies that would cost more, Mr. Obama calculated he might get nowhere.

“Throughout his campaign, President Obama was clear that he would bring every stakeholder to the table in order to pass health reform, even longtime opponents like the pharmaceutical industry,” Dan Pfeiffer, the White House communications director, said Friday. “He understood correctly that the unwillingness to work with people on both sides of the issue was one of the reasons why it took a century to pass health reform.”

Republicans see the deal as hypocritical. “He said it was going to be the most open and honest and transparent administration ever and lobbyists won’t be drafting the bills,” said Representative Michael C. Burgess of Texas, a Republican on the House Energy and Commerce Committee examining the deal. “Then when it came time, the door closed, the lobbyists came in and the bills were written.”

Some liberals bothered by the deal in 2009 now find the Republican criticism hard to take given the party’s longstanding ties to the industry.

“Republicans trumpeting these e-mails is like a fox complaining someone else raided the chicken coop,” said Robert Reich, who was labor secretary under President Bill Clinton. “Sad to say, it’s called politics in an era when big corporations have an effective veto over major legislation affecting them and when the G.O.P. is usually the beneficiary.”

In a statement, the Pharmaceutical Research and Manufacturers of America, the drug industry lobby known as PhRMA, called its interactions with the White House part of its mission to “ensure patient access” to high-quality medicine: “Before, during and since the health care debate, PhRMA engaged with Congress and the administration to advance these priorities,” the lobby statement said.

If the negotiations resembled deal-making by past presidents, what distinguished them was that Mr. Obama had strongly rejected business as usual. During his campaign, he singled out the power of the pharmaceutical industry and its chief lobbyist, former Representative Billy Tauzin, a Democrat-turned-Republican from Louisiana.

“The pharmaceutical industry wrote into the prescription drug plan that Medicare could not negotiate with drug companies,” Mr. Obama said in a campaign advertisement, referring to 2003 legislation. “And you know what? The chairman of the committee who pushed the law through went to work for the pharmaceutical industry making $2 million a year.”

Mr. Obama continued: “That’s an example of the same old game playing in Washington. You know, I don’t want to learn how to play the game better. I want to put an end to the game playing.”

The e-mails document tumultuous negotiations, at certain times transactional, at others prickly. Each side suspected the other of operating in bad faith. Led by Rahm Emanuel, Mr. Obama’s chief of staff at the time, and Jim Messina, his deputy, the White House appeared deeply involved, and not averse to pressure tactics.

In May, the White House was upset industry had not signed on to a joint statement. One industry official urged colleagues to sign: “Rahm is already furious. The ire will be turned on us.” By June, tension flared again. “Barack Obama is going to announce in his Saturday radio address support for rebating all of D unless we come to a deal,” wrote Bryant Hall, a PhRMA lobbyist, referring to a Medicare Part D change that would cost the industry.

A public confrontation was averted and an agreement announced, negotiated down to $80 billion from $100 billion. “We got a good deal,” Mr. Hall wrote.

The White House thought it did, too, and defended it against Democrats in Congress. “WH is working on some very explicit language on importation to kill it in health care reform,” Mr. Hall wrote in September.

Mr. Emanuel, now mayor of Chicago; Mr. Messina, now the president’s campaign manager; Ms. DeParle, now deputy White House chief of staff; and Mr. Bryant, now heading his own firm, all declined to comment.

The e-mails released Friday also underscored detailed discussions about an advertising campaign supporting Mr. Obama’s health overhaul. “They plan to hit up the ‘bad guys’ for most of the $,” a union official wrote after an April meeting. “They want us to just put in enough to be able to put our names in it — he is thinking @100K.” In July, Mr. Hall wrote, “Rahm asked for Harry and Louise ads thru third party,” referring to the characters the industry had used to defeat Mr. Clinton’s health care proposal 15 years earlier.

Industry and Democratic officials said advertising was an outgrowth of the deal, not its goal. The industry traditionally advertises for legislation it supports.

In the end, balky House Democrats imposed additional conditions on the industry that pushed the cost above $100 billion, but the more sweeping policies it feared remained out of the legislation. Mr. Obama signed it in March 2010. He had the victory he wanted.

    Obama Was Pushed by Drug Industry, E-Mails Suggest, NYT, 8.6.2012,
    http://www.nytimes.com/2012/06/09/us/politics/e-mails-reveal-extent-of-obamas-deal-with-industry-on-health-care.html

Jean Pakter,

Who Made New York a Model for Safe Abortions,

Dies at 101

May 22, 2012
The New York Times
By PAUL VITELLO

Dr. Jean Pakter, a former health official who made New York City a national model for providing safe, legal abortions and led an innovative effort to educate women about the benefits of birth control, prenatal nutrition and breast-feeding, died on Tuesday in Manhattan. She was 101.

Her death was confirmed by her daughter, Dr. Ellen B. Mendelson.

Dr. Pakter, who headed the bureau of maternity services and family planning in the city’s health department from 1960 to 1982, was also recognized for landmark research in the 1960s on women’s reproductive health that influenced several defining political events of her time, including the War on Poverty in the 1960s and the 1973 Supreme Court decision in Roe v. Wade.

Abortion was still illegal during Dr. Pakter’s early years in public health, and she had the task of compiling reports about the commerce in abortion. These reports provided some of the few reliable estimates in the country about the number of women injured or killed by illegal practitioners. (There were dozens each year in the city.) She worked actively to support a state law, passed in 1970, that gave women in New York the right to abortion, three years before it was legalized nationally.

The enactment of the state law created a flood of patients to New York and a sudden outcropping of abortion clinics.

Dr. Pakter, who saw her job in essence as being New York’s chief pediatrician and family doctor, was instrumental in establishing rules for the new facilities, including guidelines for what equipment had to be in doctors’ offices and a requirement that abortions after 12 weeks be done in hospitals. These rules were later adopted in many states.

The law also provided data for a series of annual reports showing that large numbers of abortions — 163,000 in New York City the first year — could be performed safely if monitored by the local authorities.

Justice Harry A. Blackmun, writing the majority decision in Roe v. Wade in 1973, cited the June 1971 edition of Morbidity and Mortality Weekly Report, the government’s public health journal, to support one contention in his argument for legalizing abortion. “Mortality rates for women undergoing early abortions, where the procedure is legal, appear to be as low as, or lower than, the rates for normal childbirth,” he wrote. “Consequently, any interest of the state has largely disappeared.” The report he cited was by Dr. Pakter and her colleagues.

One of Dr. Pakter’s earliest studies, “Out of Wedlock Births in the City of New York, 1961,” became the data lodestar for several national initiatives on poverty and children in the early 1960s.

Daniel Patrick Moynihan, then an assistant secretary of labor, cited it prominently in his 1965 report “The Negro Family: The Case for National Action,” which proposed intensive job training and education for blacks and was considered a forerunner of the Johnson administration’s War on Poverty.

Her bureau’s work in compiling childbirth statistics in the city also led Dr. Pakter to start an innovative protocol for the treatment of premature babies, which quickly became the norm nationwide. The process, which identified premature infants born in small community hospitals and urged their doctors to transfer them quickly to large, better-equipped teaching hospitals, increased survival rates markedly in the 1960s, said Dr. Wendy Chavkin, a professor of public health at Columbia University and Dr. Pakter’s immediate successor as head of the city’s bureau of maternity services.

The relationships that Dr. Pakter established with the city’s obstetricians in that effort also helped her promote her ideas about doctoring, Dr. Chavkin said. She urged physicians to be more assertive in educating pregnant women about the benefits of good nutrition and in explaining why breast feeding was better than formula feeding for both mother and child.

Jean Pakter was born on Jan. 1, 1911, in Manhattan, the youngest of four children of David and Lillian Pakter. Her father worked as a tailor. She was one of only four women accepted to the class of 1934 at the New York University medical school at Bellevue Hospital, then known as University and Bellevue Hospital Medical College. She entered private practice as a pediatrician and began working for the city’s maternity services bureau in the 1950s.

Besides her daughter, she is survived by a son, Dr. Donald M. Bachman, and six grandchildren. Her husband, Dr. Arnold L. Bachman, a radiologist, died in 1992.

Most of Dr. Pakter’s work dealt with issues of life and death, but she occasionally crunched numbers in search of answers to less critical questions. In 1969, for instance, she issued a report on the most popular months for getting pregnant in New York City.

She was surprised to learn that it was not spring “when a young man’s fancy turns to love,” she said, but September and October, followed in popularity by November and December. Of the 1,387,851 conceptions reported during the period, the fewest happened in spring.

The finding that “the gleam in a young man’s eye is in the fall,” she said, was “astonishing.”

    Jean Pakter, Who Made New York a Model for Safe Abortions, Dies at 101, NYT, 22.5.2012,
    http://www.nytimes.com/2012/05/23/nyregion/jean-pakter-womens-health-advocate-in-new-york-dies-at-101.html

For Hospitals and Insurers, New Fervor to Cut Costs

May 23, 2012
The New York Times
By REED ABELSON

Giselle Fernandez is only 17 but she has had more than 50 operations since she was born with a rare genetic condition. She regularly sees a host of pediatric specialists, including an ophthalmologist, an endocrinologist and a neurologist at UCLA Health System. Her care has cost hundreds of thousands of dollars so far, and she will need special treatment for the rest of her life.

While UCLA Health System has long prided itself on being at the forefront of treating patients like Giselle, it is now trying to lower sharply the cost of providing that care. By enrolling young patients with complex and expensive diseases in a program called a medical home, the system tries to ensure that doctors spend more time with patients and work more closely with parents to coordinate care. The program has cut emergency room visits by slightly more than half.

The effort is part of a much broader ambition by UCLA Health System to reduce its costs by 30 percent, or hundreds of millions of dollars, over the next five years, according to Dr. David T. Feinberg, the system’s president.

“We have definitely found religion,” Dr. Feinberg said.

After years of self-acknowledged profligacy, hospitals, doctors and health insurers say there is a strong effort under way to bring medical costs under control. Their goal is to slash the rate of growth in the nation’s $2.7 trillion health care bill by roughly half to keep it more in line with overall inflation.

Private insurers, employers and government officials are providing urgency to these efforts, and the federal health care law passed two years ago helped accelerate them.

Even if the Supreme Court decides next month to declare the entire law unconstitutional, many experts in the field say the momentum is likely to continue.

“Regardless of what happens to the law, the market will force the system to become more efficient,” said Paul H. Keckley, the executive director of the Deloitte Center for Health Solutions, a research arm of the consultant Deloitte.

The drive to lower costs is resulting in numerous efforts. UCLA Health System is scrutinizing its use of imaging procedures on patients in the cardiothoracic intensive care unit. Over the last year, the average number of X-rays per patient each day was reduced to two, from 10.

The Cleveland Clinic, another medical powerhouse that has little difficulty attracting patients and demanding high prices, is trying group visits for diabetic patients so more people can be seen at a lower cost. The clinic has started reminding its surgeons about the $400 price of a unit of blood as a way of discouraging unnecessary transfusions, which along with other changes in patient care last year helped save $4 million. The clinic’s medical residents also can no longer order as many expensive tests as they want. “What we’re talking about is driving the value equation,” said Dr. Delos M. Cosgrove, the chief executive for the clinic.

These efforts include trying to keep the health system’s own employees healthy by enlisting them in wellness programs or, as at UCLA, eliminating fried food in the cafeteria.

“Nobody has died because the Tater Tots are gone,” said Dr. Feinberg.

Many of those involved say the impetus should come directly from hospitals and doctors.

“The medical community needs to transform care,” said Dr. Thomas L. Simmer, the chief medical officer of Blue Cross Blue Shield of Michigan, the state’s largest insurer.

By collaborating with Michigan hospitals to share best practices, Blue Cross estimated it achieved savings of $233 million over three years.

Despite the flurry of activity, many caution that these efforts may not succeed in saving money. Many previous programs failed in the end to reduce costs or improve care. And many people within the industry are still wedded to the status quo, said Dr. Michael W. Cropp, the chief executive of Independent Health, an insurer in Buffalo. Dr. Cropp has been vocal about the need to address rising costs.

“The mind-set shift is beginning, albeit too slowly,” he said.

Experts also warn that many of these initiatives will take time to work, especially since the more tests and procedures they do, the more money doctors and hospitals get. But there are also signs that insurers, which traditionally have focused on paying hospitals and doctors the least they can, are working much more closely with providers to improve care.

In Michigan, for example, Blue Cross financed an effort to have the state’s major hospitals compare results in areas like bariatric or general surgery so that they could reduce infection rates and surgical complications. The insurer never sees data that identifies individual hospitals, and the hospitals meet regularly to discuss how they can learn from one another to improve care.

“There’s basically a ‘leave your guns at the door’ attitude,” said Dr. Darrell Campbell, the chief medical officer for the University of Michigan Health System.

The program’s benefits extend far beyond Blue Cross’s own customers, according to the insurer’s calculations. Only a third of the savings was attributable to patients it insured. Unlike previous attempts by insurers to reward individual hospitals for quality and efficiency, the program tries to help all hospitals improve.

The earlier efforts, which focused on overly specific measures or reporting on individual hospitals, “tended to inspire providers to do the least necessary to achieve the incentive rather than the most to transform care,” said Dr. David Share, a senior executive at Blue Cross.

In other cases, health insurers are collaborating with hospitals and doctors through new models like so-called accountable care organizations, which coordinate the care for a group of people. In early 2010, Blue Shield of California teamed with a San Francisco-based hospital system, now Dignity Health, and a large medical group, Hill Physicians, to provide coverage for 40,000 members of the California Public Employees’ Retirement System in Sacramento. Blue Shield promised to keep premiums flat the first year and increase them as little as possible afterward.

Simply by working together, the three were able to reduce the number of times patients had to be readmitted to the hospital by 15 percent. Previously, the insurer, the hospital and the medical group had each assigned a case manager to the same patient, but patients were still failing to schedule follow-up visits with their doctors and were not getting clear instructions about their care when they left the hospital.

“None of the case managers from the three organizations were talking to each other,” said Paul Markovich, an executive vice president of Blue Shield.

In the end, the hospital was deemed responsible for follow-up care, even though it had the least incentive to prevent a patient from returning, he said.

Before the program, “there’s no way we could even contemplate doing that,” Mr. Markovich said.

The hospital system says it is committed to more affordable care, which is why it agreed to work with Blue Shield in the first place.

“We do think there is a problem with cost,” said Michael D. Blaszyk, the chief financial officer for Dignity Health.

“Our goal was not to ramp up our profits,” he said. “Our goal was not to lose money on this.”

Patients also benefit. Sandra Fernandez, Giselle’s mother, said she appreciates that the doctors at Mattel Children’s Hospital UCLA are now well versed in her daughter’s condition so that she does not have to go through the complicated history repeatedly. Giselle’s condition involves developmental delays, and she has also been treated for hypothyroidism and seizures, and the program ensures that she is connected to all the right specialists.

“For me as a mother, it was easier to communicate,” said Ms. Fernandez, who speaks Spanish, through an interpreter.

    For Hospitals and Insurers, New Fervor to Cut Costs, NYT, 23.5.2012,
    http://www.nytimes.com/2012/05/24/health/hospitals-and-insurers-join-to-cut-health-care-costs.html

A New Attack on Alzheimer’s

May 20, 2012
The New York Times

The Obama administration has announced a bold research program to test whether a drug can prevent the onset of Alzheimer’s disease well before any symptoms appear. It is a long shot, but the payoff could be huge.

Currently, there is no cure for Alzheimer’s, which steadily robs patients of their memory, followed by full-blown dementia. There is also no diagnostic test to identify who has it, and no treatment to slow patients’ deterioration for more than a few months.

While work continues on those fronts, the new clinical trial will test whether the drug, Crenezumab, made by Genentech, can prevent the disease in a group of people whose genetic heritage guarantees that they will develop it. If the drug successfully prevents the loss of mental capacities as measured by a sensitive new cognitive test there is hope — but no guarantee — that it could do the same for members of the general public. As Pam Belluck described in The Times last week, the trial will focus on members of an extended family in Colombia who carry a rare genetic mutation that causes them to develop Alzheimer’s early in life. They typically experience cognitive impairment at about age 45 and dementia by 51. The trial will also include a smaller number of individuals in the United States with the same genetic mutation.

Instead of recruiting thousands of volunteers and following them for an extended period as in a customary prevention trial, the researchers in Colombia will give the drug to only 100 people with the early-onset genetic mutation. They will give placebos to another 100 people with the mutation and to 100 family members who do not carry the deadly gene.

The study will cost more than $100 million and is being financed mostly by Genentech, buttressed by $16 million from the National Institutes of Health and $15 million raised by the Banner Alzheimer’s Institute in Phoenix, which is leading the study.

The prevailing, but not universally accepted, hypothesis is that amyloid plaques in the brain play a major role in causing Alzheimer’s. Crenezumab attacks the formation of such plaques, apparently by binding to amyloid proteins and clearing them from the brain. If the drug fails to work, the trial will probably demolish the amyloid hypothesis and set researchers scrambling to find other targets to attack.

A prevention trial of a different drug that was also intended to slow formation of amyloid plaques actually made patients’ symptoms worse, possibly because it interfered with various other proteins needed by the brain. Researchers believe that Crenezumab will be safer and more effective, but again there are no guarantees. The risk is justified given that without the treatment the recipients will inevitably get Alzheimer’s in the prime of their lives. The truly big payoff will come if the drug succeeds in this group and lays the groundwork for preventing or slowing the progress of Alzheimer’s that appears late in life. The researchers will be gathering data on a variety of biomarkers — glucose activity in the brain, shrinkage of the brain, certain proteins in cerebral spinal fluid, for example — to see which if any are related to preventing amyloid plaques and the loss of mental abilities.

If the drug prevents the deterioration of particular biomarkers and ultimately sustains mental capacity, then the same markers might be useful in identifying and treating older people likely to develop the disease. And federal regulators might be willing to approve other prevention drugs based on their short-term effects on biomarkers, speeding the conduct of clinical trials.

More than five million Americans currently have Alzheimer’s. Without an effective preventive, the number will rise steadily as the population ages.

    A New Attack on Alzheimer’s, NYT, 20.5.2012,
    http://www.nytimes.com/2012/05/21/opinion/a-new-attack-on-alzheimers.html

Psychiatry Manual Drafters Back Down on Diagnoses

May 8, 2012
The New York Times
By BENEDICT CAREY

In a rare step, doctors on a panel revising psychiatry’s influential diagnostic manual have backed away from two controversial proposals that would have expanded the number of people identified as having psychotic or depressive disorders.

The doctors dropped two diagnoses that they ultimately concluded were not supported by the evidence: “attenuated psychosis syndrome,” proposed to identify people at risk of developing psychosis, and “mixed anxiety depressive disorder,” a hybrid of the two mood problems.

They also tweaked their proposed definition of depression to allay fears that the normal sadness people experience after the loss of a loved one, a job or a marriage would not be mistaken for a mental disorder.

But the panel, appointed by the American Psychiatric Association to complete the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders, or D.S.M., did not retreat from another widely criticized proposal, to streamline the definition of autism. Predictions by some experts that the new definition will sharply reduce the number of people given a diagnosis are off base, panel members said, citing evidence from a newly completed study.

Both the study and the newly announced reversals are being debated this week at the psychiatric association’s annual meeting in Philadelphia, where dozens of sessions were devoted to the D.S.M., the standard reference for mental disorders, which drives research, treatment and insurance decisions.

Dr. David J. Kupfer, a professor of psychiatry at the University of Pittsburgh and the chairman of the task force making revisions, said the changes came in response to field trials — real-world studies testing whether newly proposed diagnoses are reliable from one psychiatrist to the next — and public commentary. The psychiatric association has posted its proposals online, inviting public reaction. More than 10,500 comments have come through the site, many of them critical.

“At long last, DSM 5 is correcting itself and has rejected its worst proposals,” said Dr. Allen Frances, a former task force chairman and professor emeritus at Duke University who has been one of the most prominent critics. “But a great deal more certainly needs to be accomplished. Most important are the elimination of other dangerous new diagnoses and the rewriting of all the many unreliable criteria sets.”

The criticism of “mixed anxiety depressive disorder” was that it would unnecessarily tag millions of moderately neurotic people with a psychiatric label. Mixed states of depression and anxiety can be severe, but the proposed hybrid had looser criteria than either depression or anxiety on its own — lowering the bar significantly for a diagnosis.

The primary concern with “attenuated psychosis syndrome” was that it would lead to unwarranted drug treatment of youngsters. The diagnosis was meant to identify people, usually young, who exhibit psychosis-like symptoms and treat them early. But 70 percent to 80 percent of people who report having weird thoughts and odd hallucinations do not ever qualify for a full-blown diagnosis — and might be treated for something they did not have.

On the manual’s site, in blogs and other public forums, advocates, therapists, scientists and people receiving services sounded off on the proposed changes. The psychiatric association made an effort to listen, Dr. Kupfer said. The site “is not just a P.R. effort,” he said. “We’re getting feedback, and it all goes to the working groups.”

The proposed definition of autism, which would eliminate related labels like Asperger’s syndrome and “pervasive developmental disorder,” came under fire in January, when researchers at Yale University presented evidence that about half of the people who currently have a diagnosis on the high end of the “autism spectrum” would no long qualify under the new definition.

At this week’s annual meeting, researchers presented data from an unpublished study of some 300 children, finding that the proposed definition would exclude very few who currently have a diagnosis of autism or a related disorder.

But meeting attendees got mixed messages on autism. In a talk on Tuesday, Dr. Susan E. Swedo, head of the panel proposing the new definition, said that many people who identify themselves as “aspes,” for Asperger’s syndrome, “don’t actually have Asperger’s disorder, much less an autism spectrum disorder.” Dr. Swedo is a researcher at the National Institute of Mental Health.

The issue is hardly settled. Findings from published studies are conflicting, but three recent analyses provide support for the Yale estimate, and more papers in the pipeline are also documenting a significant reduction in numbers of those who would qualify under the new criteria. Getting such a diagnosis is critical to obtain state-financed services for children with special needs.

“I certainly hope the D.S.M. task force is right, that the numbers won’t change much,” said Dr. Fred R. Volkmar, director of the Child Study Center at the Yale School of Medicine and senior author of the study presented in January. But if the new definition does not change who gets a diagnosis, he asked, “Why mess with it at all?”The D.S.M. panel also made an attempt to clarify the difference between normal sadness and depression, by spelling it out in a footnote added to the proposed depression definition.

The note reads, in part, “The normal and expected response to an event involving significant loss, including feelings of intense sadness, rumination about the loss, insomnia, poor appetite and weight loss, may resemble a depressive episode” but is not necessarily one.

Judging from the past year, the normal and expected response to most of these revisions will be more contentious disagreement that will most likely intensify over the coming weeks.

The psychiatric association send out reminders this week that the current — and final — period for public comment ends on June 15. The final draft of the manual is due at the printer at the end of the year and is scheduled for release in May 2013.

    Psychiatry Manual Drafters Back Down on Diagnoses, NYT, 8.5.2012,
    http://www.nytimes.com/2012/05/09/health/dsm-panel-backs-down-on-diagnoses.html

When Illness Makes a Spouse a Stranger

May 5, 2012
The New York Times
By DENISE GRADY

He threw away tax documents, got a ticket for trying to pass an ambulance and bought stock in companies that were obviously in trouble. Once a good cook, he burned every pot in the house. He became withdrawn and silent, and no longer spoke to his wife over dinner. That same failure to communicate got him fired from his job at a consulting firm.

By 2006, Michael French — a smart, good-natured, hardworking man — had become someone his wife, Ruth, felt she hardly knew. Infuriated, she considered divorce.

But in 2007, she found out what was wrong.

“I cried,” Mrs. French said. “I can’t tell you how much I cried, and how much I apologized to him for every perceived wrong or misunderstanding.”

Mr. French, now 71, has frontotemporal dementia — a little-known, poorly understood and frequently misdiagnosed group of brain diseases that eat away at personality and language. Although it was first recognized more than 100 years ago, there is still no cure or treatment, and patients survive an average of only eight years after the diagnosis.

But recently, researchers have been making important discoveries about the biochemical and genetic defects that cause some forms of the disease. And for the first time, they have identified drugs that may be able to treat one of those defects, the buildup of abnormal proteins in the brain. Tests in people, the first ever such drug trials in this disease, could begin as soon as early next year at the University of California, San Francisco.

“There’s really been an explosion related to the biology,” said Dr. Bruce L. Miller, a professor of neurology and psychiatry there. “I think at least some subtypes of frontotemporal dementia will be the first neurodegenerative diseases we find a cure for.”

This disease is different from Alzheimer’s, the most common form of dementia. But it is perhaps even more devastating, because it strikes younger people, progresses faster and, unlike Alzheimer’s, does not attack memory at first but begins with silence, apathy or bizarre personality changes. It is thought to afflict at least 50,000 to 60,000 people in the United States.

The scientific findings in frontotemporal dementia may also reshape thinking about the fundamental flaws involved in Alzheimer’s disease.

“I think the way dementia is going in general now is to realize there are many different subtypes,” Dr. Miller said, adding that what is now labeled Alzheimer’s disease may actually turn out to include hundreds of different illnesses.

Dementia is a formidable adversary, and the history of efforts to treat Alzheimer’s has to temper any excitement about potential medicines for frontotemporal disease. The drugs for Alzheimer’s have been a disappointment, with just temporary effects on symptoms at best.

But even if treatments or cures for frontotemporal dementia do emerge, they will almost certainly come too late for people with advanced cases, like Mr. French or Richard Rainwater, a billionaire investor who learned in 2009 that he had progressive supranuclear palsy, which some consider a form of frontotemporal dementia. Mr. Rainwater and his family have donated more than $20 million to a research consortium, but given that he has a rapidly progressive form, any advances from the consortium may be more likely to help others than to save him.

 

Looking for Answers

Looking back, Mrs. French, who is 66 and lives in Manhattan, recalled episodes of odd behavior over the years and realized that her husband’s mind had probably begun to slip while he was in his 50s, at least a decade before the disease was diagnosed. He had always changed jobs a lot. At the time she took it as a sign of a stubborn personality, not of illness — and it is still not clear which it was. He always wanted to do things his own way, and that did not sit well with some bosses.

“I thought it was just Michael being Michael,” she said.

A friend described Mr. French as being unable to read the tea leaves, oblivious of corporate politics. At one point Mrs. French even bought him a self-help book. But he never changed.

And he always found another job, better than the one before. But things went downhill in 2006.

“His immediate boss was so frustrated by him that she called up, and we were at the dinner table, and I could hear her screaming,” Mrs. French said.

He was fired, and this time he did not find another job. At 66, he retired.

Soon after, because he had trouble speaking, he consulted a neurologist. When they got the diagnosis, Mrs. French asked the doctor, “How do we treat it?”

“It’s brain atrophy,” he replied.

Her thoughts of divorce evaporated. Instead, she told her husband: “Whatever happens, we will go through this together. I will be there.”

From then on, the silence at the dinner table no longer troubled her. It did not seem personal anymore. He was not refusing to talk; he simply could not. Her anger melted into sadness.

But sometimes she still blew her top. Once, she came home and found him at the stove, seemingly unaware that his oven mitt was smoldering.

“I actually hit him a couple times out of frustration,” she said. What made her lose control, she said, was a toxic mix of frustration and fear — fear of what was happening to him, and fear that she would not know what to do, how to help. No amount of information from his doctors could put her at ease.

“They can tell you everything that’s ever happened to anyone, but they can’t tell you what’s going to happen to you,” she said.

The last five years have been wrenching and often lonely. Michael was the love of her life. When she married him, her sister asked, “How does it feel to hit the jackpot?” In more than 30 years of marriage, she never heard him say an unkind word about anyone. He was an engineer, lectured at conventions, did volunteer work, belonged to a history book club, ran marathons. Now he can no longer speak, read, write or walk.

If there is comfort anywhere for Mrs. French, it is in knowing one thing: she has kept her promise to be there.

 

The Science

Frontotemporal dementia, also called frontotemporal degeneration or Pick’s disease, refers to a group of diseases that destroy nerve centers in the frontal and temporal lobes — the home of decision-making, emotion, judgment, behavior and language. Some forms of the disease also cause movement disorders.

Most cases occur sporadically, in people with no family history of the illness — like Michael French — but a small percentage are inherited.

Patients generally receive from one to four misdiagnoses, and it may take years to finally get the right answer. Mistaken diagnoses can include Alzheimer’s disease, stroke, midlife crisis or psychiatric illnesses like depression, bipolar disorder, post-traumatic stress or anxiety. Many relatives of patients say doctors dismiss their reports of personality change. But it is real.

“They totally break down in their ability to connect with other people and care about them,” Dr. Miller said.

There are eight subtypes of frontotemporal degeneration, sorted by the symptoms they cause. Some affect behavior. Others, grouped under the heading primary progressive aphasia, affect language. Still others affect movement, leading to disorders that resemble Parkinson’s or Lou Gehrig’s disease (also called amyotrophic lateral sclerosis or A.L.S.).

But patients may match more than one category, and the subtype may change as the disease progresses.

“I see a lot who don’t present like the textbook,” said Dr. Edward Huey, an assistant professor of psychiatry and neurology at Columbia University Medical Center.

In most patients, MRI and other scans reveal shrinkage in the frontal and temporal lobes, sometimes to a shocking degree.

“If I showed you more extreme cases, you could read it from across the room,” Dr. Huey said.

He said researchers were using imaging to find out if specific symptoms could be mapped to atrophy in certain spots.

“The frontal lobes are sort of the last frontier in the brain,” Dr. Huey said, adding that the losses these patients suffer are helping researchers understand more about what the frontal lobes do. As the brain atrophy progresses, Dr. Huey said, patients “have pieces of psychiatric syndromes, but not the whole syndrome.” For instance, they have compulsions, but not the usual accompaniment, obsessions. So they may wash their hands over and over again, but not in a worried or anxious way. Some lose their inhibitions and moral judgment. Shoplifting is not uncommon. Many have the apathy and social disconnection that usually go with depression, but they do not feel depressed.

“They’re not down, but they just don’t enjoy things as much as they used to,” Dr. Huey said. “There appears to be a dysfunction in the reward circuit, where activities that were rewarding and pleasurable no longer seem to be. These patients lose themselves.”

Many seem to go on endless eating binges and gain weight. It is not clear why — whether they are actually hungry or whether the eating is just another compulsion. Some people with the illness shower repeatedly or check the mail 100 times a day. One possible reason, Dr. Huey said, is that “the part of the brain that tells you, ‘No, that task is done,’ is gone.” Some patients collect things — by the hundreds. A few have had bursts of creativity in music or painting, possibly because other brain regions come to the fore as the frontal lobes wither.

 

A Way of Life Cut Short

Long before her husband became ill, Mrs. French had a successful career in sales and marketing for textile companies and ultimately became a vice president at Liberty of London. But she gave it up in 1991 to do something she loved: teaching English as a second language to adults. She was doing that work when his condition was diagnosed.

One day, in a moment of inspiration, she asked her students if they knew the traditional wedding vows in English. She began to recite them. At “for better, for worse,” she choked up. Struggling to keep her composure, she quickly finished and moved on to another subject.

After teaching, she would walk home through Central Park, and in the early days of his illness Mr. French would often meet her halfway. She would see him heading toward her, smiling and strikingly handsome. “When I look at Michael, that’s what I see, that’s who he will always be to me.”

In 2007, Mrs. French joined a support group for caregivers of people with frontotemporal dementia. Jill Goldman, a genetic counselor at Columbia University Medical Center, said she started the group because patients’ relatives felt that they did not fit in at Alzheimer’s groups; their loved ones were younger and often had bizarre behaviors that were nothing like Alzheimer’s.

“One of the things that goes first is insight,” Ms. Goldman said. “ ‘There’s nothing wrong with me. Why can’t I do what I want to do?’ ”

Members of the group tell of loved ones who hug strangers, who fly into terrifying rages and hit family members and health aides, or who pass their days in silence cutting up newspapers or watching television. Patients are easily taken in by financial scams that can cost families thousands of dollars. Often, apathy sets in, and people once devoted to their families lose interest in everyone, even their own children.

“My son and I look out the window and see my wife out there, stepping on leaves, and we start to cry,” one member said.

Some have struggled with uncertain diagnoses because patients have symptoms of both Alzheimer’s and frontotemporal disease. One wife described trips to multiple doctors and inconclusive reports on PET scans and spinal taps. Should she have taken her husband to the Mayo Clinic? She agonized over the idea that he might have some illness other than frontotemporal dementia or Alzheimer’s, something treatable, and that there might be some way to rescue him, to bring him back.

Another said her husband, a judge who had always been mild-mannered and modest, turned boastful and began talking to strangers in the street, making jokes at the wrong time and falling for scams.

“He salutes every flag, closes every gate, kisses every hand,” she said.

Riding the bus in Manhattan, he will loudly announce, “I haven’t killed anybody lately.” Not infrequently it gets him a seat. He can turn violent and has struck a health aide with his cane.

“He’s just mean and nasty,” his wife said. “He was such a wonderful man. He’s not a person anymore.”

Ms. Goldman provides stacks of business-size cards that spouses can hand out to strangers in awkward situations.

“My husband has a terminal brain disease called frontotemporal dementia,” the cards read. “Thank you for your understanding.”

Many find that friends and family pull away. Nearly all grapple with whether and when to take away car keys, give drugs to blunt aggression, hire a health aide or put the patient in a nursing home. One group member said, “The doctor told me, ‘You’re taking good care of him, he’ll live a long time,’ and I said, ‘Why is that a good thing?’ ”

Patients are hard to care for at home, and those who are young, strong and aggressive are sometimes kicked out of nursing homes because they are seen as posing a physical threat. But employers do not necessarily sympathize with relatives called out of work in the middle of the day because a patient has punched or shoved someone at the nursing home.

“My boss says, ‘You just have to deal with this better,’ ” one group member said.

Another group member, a professor of psychotherapy and mental health counseling, said she quit her job at the height of her career to take care of her partner and after a few years became suicidal.

“Being a caregiver in this disease is a grieving process,” she said, “while the person is still alive.”

 

Easing the Burden

Ruth and Michael French managed on their own until May 2009, when he fell down a flight of stairs in their apartment building while she was at work. He fractured his skull and came home in a wheelchair, so weak and frail that she hired an aide to help take care of him.

Mrs. French is fine-boned and thin, and as her husband grew weaker, the physical demands on her became daunting. Streets she had thought flat revealed themselves to be hills once she found herself trying to push a 140-pound man in a wheelchair. Potholes yawned like chasms. One night at home, after helping him clean his teeth, she turned to put the toothbrush away, and in that moment he fell into the bathtub. She was barely able to pull him up.

“I said, ‘Michael, now we’re at the point where we’re both at risk,’ ” she recalled.

She injured her wrist, developed a stomach ulcer and lost so much weight that people worried about her. Mr. French became incontinent, and she would sometimes wake up in a pool of his urine. The health aide hurt her back lifting him.

“I heard myself say one day, ‘I would never want anybody to do for me what I’m doing for Michael,’ ” Mrs. French said.

She had hoped to keep him at home until the end but knew it might not be possible. “This thing is going to kill both of us, and I don’t know who’s going first,” she told him.

In one way, she had an easier time than many other caregivers. Her husband never turned hostile. He retained a sweetness, and an acceptance of his illness that she found inspiring.

At one point, worried about finances, she considered laying off the aide and taking care of Michael alone. When members of her support group worried that the stress would kill her, she told them, “That might not be so bad.”

At Ms. Goldman’s urging, she saw a psychotherapist. He recommended medications to calm her. She filled the prescription but threw the pills away.

“I kind of feel that having gone through the anxiety and the worry is what let me get to the other side,” Mrs. French said.

While Mr. French was still well enough, they had discussed the possibility of a nursing home. So when the time came, it was not really a surprise.

“He knew it was something I didn’t want to do, because every time we spoke about it I would cry,” Mrs. French said. “When I told him that I had made arrangements, he said — and this is a man who can’t speak, so he had to muster every bit of energy he could — he said, ‘You did the best you could.’ ”

In April last year, Mrs. French placed her husband in a nursing home in Manhattan. Along with her sadness came feelings of relief and freedom. Soon after he was settled, she went out to dinner with friends for the first time in two years.

“At times, I ache for him to be back in the apartment,” she said. “But I ache for him to be back as him.”

She said that long after he ceased speaking, he continues to understand what she says.

“I remember asking his neurologist, ‘Will he know me?’ ” Mrs. French said. “And he said, ‘Oh, he’ll always know you. He might not be able to express it in a way that will be familiar to you or that you’ll like, but he’ll always know you.’ ”

She wondered what longings might drive her husband’s dreams:

“I asked him, ‘Do you talk in your dreams?’ and he said, ‘Yes.’ And I asked him, ‘Do you dream about me?’ And he said, ‘Yes.’ ”

She has had time to think about mortality, his and her own.

“Death to me has always been a wake-up call to live,” she said. “This is the endgame. Sometimes I get upset because I don’t think I have enough money, and sometimes I get upset because I think I do. You don’t necessarily want to live too long, but neither do you want to die.”

On most days, she spends several hours at the nursing home with her husband. She shaves him and sometimes climbs into bed with him to hold him and to nap together.

“Where do you carry my heart?” she asks him, referring to a poem they love by E. E. Cummings.

He smiles and pats his chest.

i carry your heart with me(i carry it in

my heart)i am never without it(anywhere

i go you go,my dear;and whatever is done

by only me is your doing,my darling)

i fear no fate(for you are my fate,my sweet)i want

no world(for beautiful you are my world,my true)

Excerpt reprinted from “Complete Poems: 1904-1962” by E. E. Cummings,

ed. George J. Firmage. With the permission of the Liveright Publishing Corporation.

    When Illness Makes a Spouse a Stranger, NYT, 5.5.2012,
    http://www.nytimes.com/2012/05/06/health/a-rare-form-of-dementia-tests-a-vow-of-for-better-for-worse.html

How Chemicals Affect Us

May 2, 2012
The New York Times
By NICHOLAS D. KRISTOF

Scientists are observing with increasing alarm that some very common hormone-mimicking chemicals can have grotesque effects.

A widely used herbicide acts as a female hormone and feminizes male animals in the wild. Thus male frogs can have female organs, and some male fish actually produce eggs. In a Florida lake contaminated by these chemicals, male alligators have tiny penises.

These days there is also growing evidence linking this class of chemicals to problems in humans. These include breast cancer, infertility, low sperm counts, genital deformities, early menstruation and even diabetes and obesity.

Philip Landrigan, a professor of pediatrics at Mount Sinai School of Medicine, says that a congenital defect called hypospadias — a misplacement of the urethra — is now twice as common among newborn boys as it used to be. He suspects endocrine disruptors, so called because they can wreak havoc with the endocrine system that governs hormones.

Endocrine disruptors are everywhere. They’re in thermal receipts that come out of gas pumps and A.T.M.’s. They’re in canned foods, cosmetics, plastics and food packaging. Test your blood or urine, and you’ll surely find them there, as well as in human breast milk and in cord blood of newborn babies.

In this campaign year, we are bound to hear endless complaints about excessive government regulation. But here’s an area where scientists are increasingly critical of our government for its failure to tackle Big Chem and regulate endocrine disruptors adequately.

Last month, the Endocrine Society, the leading association of hormone experts, scolded the Food and Drug Administration for its failure to ban bisphenol-A, a common endocrine disruptor known as BPA, from food packaging. Last year, eight medical organizations representing genetics, gynecology, urology and other fields made a joint call in Science magazine for tighter regulation of endocrine disruptors.

Shouldn’t our government be as vigilant about threats in our grocery stores as in the mountains of Afghanistan?

Researchers warn that endocrine disruptors can trigger hormonal changes in the body that may not show up for decades. One called DES, a synthetic form of estrogen, was once routinely given to pregnant women to prevent miscarriage or morning sickness, and it did little harm to the women themselves. But it turned out to cause vaginal cancer and breast cancer decades later in their daughters, so it is now banned.

Scientists have long known the tiniest variations in hormone levels influence fetal development. For example, a female twin is very slightly masculinized if the other twin is a male, because she is exposed to some of his hormones. Studies have found that these female twins, on average, end up slightly more aggressive and sensation-seeking as adults but have lower rates of eating disorders.

Now experts worry that endocrine disruptors have similar effects, acting as hormones and swamping the delicate balance for fetuses in particular. The latest initiative by scholars is a landmark 78-page analysis to be published next month in Endocrine Reviews, the leading publication in the field.

“Fundamental changes in chemical testing and safety determination are needed to protect human health,” the analysis declares. Linda S. Birnbaum, the nation’s chief environmental scientist and toxicologist, endorsed the findings.

The article was written by a 12-member panel that spent three years reviewing the evidence. It concluded that the nation’s safety system for endocrine disruptors is broken.

“For several well-studied endocrine disruptors, I think it is fair to say that we have enough data to conclude that these chemicals are not safe for human populations,” said Laura Vandenberg, a Tufts University developmental biologist who was the lead writer for the panel.

Worrying new research on the long-term effects of these chemicals is constantly being published. One study found that pregnant women who have higher levels of a common endocrine disruptor, PFOA, are three times as likely to have daughters who grow up to be overweight. Yet PFOA is unavoidable. It is in everything from microwave popcorn bags to carpet-cleaning solutions.

Big Chem says all this is sensationalist science. So far, it has blocked strict regulation in the United States, even as Europe and Canada have adopted tighter controls on endocrine disruptors.

Yes, there are uncertainties. But the scientists who know endocrine disruptors best overwhelmingly are already taking steps to protect their families. John Peterson Myers, chief scientist at Environmental Health Sciences and a co-author of the new analysis, said that his family had stopped buying canned food.

“We don’t microwave in plastic,” he added. “We don’t use pesticides in our house. I refuse receipts whenever I can. My default request at the A.T.M., known to my bank, is ‘no receipt.’ I never ask for a receipt from a gas station.”

I’m taking my cue from the experts, and I wish the Obama administration would as well.

    How Chemicals Affect Us, NYT, 2.5.2012,
    http://www.nytimes.com/2012/05/03/opinion/kristof-how-chemicals-change-us.html

Lester Breslow,

Who Linked Healthy Habits and Long Life,

Dies at 97

April 14, 2012
The New York Times
By DOUGLAS MARTIN

Dr. Lester Breslow, a public health leader whose research gave mathematical proof to the notion that people can live longer and healthier by changing habits like smoking, diet and sleep, died Monday at his home in Los Angeles. He was 97.

The University of California, Los Angeles, where Dr. Breslow was a former dean of the Fielding School of Public Health, announced the death.

Dr. Breslow’s most lauded accomplishment was a study of 6,928 people in Alameda County, Calif., that examined their behavior over intervals of up to 20 years. It used quantitative analysis to prove that a 45-year-old with at least six of the seven healthy habits Dr. Breslow chose as important had a life expectancy 11 years longer than someone with three or fewer.

Over a 70-year career, Dr. Breslow helped expand the very definition of public health, from the historical concentration on communicable disease to a new concern with individual behavior and the effects of community and environment. As people lived longer and had more cancer and heart attacks, he was a leader in emphasizing the mounting importance of chronic disease.

“He changed the way we thought of public health,” said Dr. Linda Rosenstock, the current dean of the Fielding School. His message, she said, was that “the root causes of our health problems are broader than our own biology.”

In 1952, President Harry S. Truman appointed Dr. Breslow director of a commission to assess the nation’s health care. The panel’s report emphasized that people make their own health choices but “exercise them mainly under social influences.”

In 1969, as president of the American Public Health Association, he said the public health profession must go beyond issuing scientific reports and suggest social actions to improve people’s lives. “In the long run, housing may be more important than hospitals to health,” he said.

He advised a half-dozen presidential administrations and was director of the California Public Health Department in the mid-1960s. Gov. Ronald Reagan fired him in 1967, citing “philosophical differences” over state cuts in medical care for the poor.

As an official of the California department in the 1940s and ’50s, he did some of the early definitive studies on the harmful effects of smoking. Three of these studies were cited in the United States surgeon general’s landmark report in 1964 linking cigarettes to lung diseases, particularly cancer.

But it was the Alameda County study that rocked the public health world, because it proved with numbers that behavior indisputably affected longevity. Its recommendations: do not smoke; drink in moderation; sleep seven to eight hours; exercise at least moderately; eat regular meals; maintain a moderate weight; eat breakfast.

A follow-up study showed that those who followed better habits were less likely to become disabled. Of those with four or more good health habits, 12.2 percent were likely to be disabled 10 years after the study began; those with two or three, 14.1 percent; and those with only one or no positive health habits at all, 18.7 percent.

Dr. Breslow found that a 60-year-old who followed the seven recommended behaviors would be as healthy as a 30-year-old who followed fewer than three.

Lester Breslow was born March 17, 1915, in Bismarck, N.D., where his parents had moved to escape the teeming poverty of the Lower East Side of Manhattan. His father, a pharmacist, opened a drugstore in Bismarck. Lester devoured socialist books and newspapers as a teenager, he wrote in his autobiography, “A Life in Public Health: An Insider’s Retrospective” (2004). He overcame a stutter to speak at his high school graduation.

He graduated from the University of Minnesota Medical School in 1938 with the intention of being a psychiatrist, but he soured on the field while working at a psychiatric hospital in the summer because he doubted much could be done to help the patients.

He shifted to public health, he said, because he thought it suited his ideology as “a political activist for disadvantaged people.” After a public health internship at a hospital in Staten Island, he applied to the United States Public Health Service Corps but was rejected — “I assume because of my political orientation,” he wrote.

Dr. Breslow returned to the University of Minnesota and earned a master’s in public health in 1941. He joined the Minnesota Department of Public Health as an epidemiologist, handling six rural counties.

In 1943 he joined the Army, even though his job and having a young child both exempted him from the World War II draft. He wrote that he felt guilty because he had not earlier joined the “antifascist struggle” by volunteering to fight in the Spanish Civil War. He served in the Pacific as a captain.

After his discharge, he approached the California health department about a job, making the case that it needed a chronic-disease specialist. The director told him to go back to Minnesota, but a subordinate quietly brought him on board.

After 21 years at the agency, Dr. Breslow was hired by U.C.L.A. as dean of the public health school, a post he held for eight years. He wrote more than 200 scientific publications, and was founding editor of The Annual Review of Public Health and The Encyclopedia of Public Health. In addition to serving as president of the public health association, he was president of the International Epidemiological Association and the Association of Schools of Public Health.

Dr. Breslow’s first marriage ended in divorce. He is survived by his wife, the former Devra J. R. Miller; three sons from his first marriage, Norman, Jack and Stephen; three grandchildren; and four great-grandchildren.

In 2010, Dr. Breslow, then 95, joined with Prof. James E. Enstrom of U.C.L.A. to publish a paper about a group of California Mormons whom they had studied over 25 years. The life expectancy of the Mormon males was 9.8 years greater than that of the general population of white American males; female Mormons lived 5.6 years longer than their general-population counterparts. The authors credited the Mormons’ healthy lifestyle.

Dr. Breslow himself did not smoke or drink. He walked regularly, practiced moderation in all things and enjoyed tending his vegetable garden.

    Lester Breslow, Who Linked Healthy Habits and Long Life, Dies at 97, NYT, 14.4.2012,
    http://www.nytimes.com/2012/04/15/health/lester-breslow-who-tied-good-habits-to-longevity-dies-at-97.html

States Seek Curb on Patient Bills for Costly Drugs

April 12, 2012
The New York Times
By ANDREW POLLACK

The hemophilia drug that saves 7-year-old William Addison from uncontrolled bleeding costs $100,000 a year. His family’s insurance pays virtually all of it.

But his mother, Victoria Kuhn, says she is terrified that the insurance company may start requiring patients to pay as much as a third of the cost of the drug. “I don’t know where we’d find $30,000,” said Ms. Kuhn, who lives in Falmouth, Me.

Spurred by patients and patient advocates like Ms. Kuhn, lawmakers in at least 20 states, from Maine to Hawaii, have introduced bills that would limit out-of-pocket payments by consumers for expensive drugs used to treat diseases like cancer, rheumatoid arthritis, multiple sclerosis and inherited disorders.

Pharmaceutical companies would also benefit from such legislation because high co-payments discourage patients from taking their medicines. The pharmaceutical giant Pfizer has been helping the legislative drive behind the scenes, even drafting some of the bills, according to legislators and patient advocates.

The bills aim to counter efforts by health plans to reduce the amount they pay for expensive medicines by making the patients pay a percentage, typically 20 to 35 percent, of the cost.

While some insurers have said the laws are unnecessary because of the federal health care law, backers say the state bills would supplement the federal law and take effect before 2014, when most of the federal law is to become operative. They say too much uncertainty remains about how the federal law will work and whether it will survive the challenge before the Supreme Court.

New York State passed the first law prohibiting such high patient payments in 2010. Vermont enacted a one-year moratorium that lasts until July 1. Maine’s governor, Paul LePage, signed a bill into law on Monday that would set a yearly cap on patient payments for such expensive drugs. Hearings on similar bills were held last month in Connecticut and Rhode Island. Delaware’s Health Care Commission just finished a study on the matter. And a bill that would cover all states was recently introduced in the House by David McKinley, a West Virginia Republican.

Insurance companies are pushing back, so some bills are dying, as in Washington State, or being watered down, as was the one in Maine. The insurers argue that reducing payments by users of the expensive drugs would raise premiums for everyone else.

“There’s no free dollars in the mix here,” Melvin N. Sorensen, a lobbyist for insurers, said at a hearing in the Washington State Senate in late January.

The controversy centers on so-called specialty drugs, a somewhat imprecise term that generally encompasses products that can cost tens or even hundreds of thousands of dollars a year.

Such drugs account for only 1 percent of total drug use, but 17 percent of drug spending by private insurers, according to IMS Health.

And costs are soaring as more such drugs come to market and as manufacturers raise prices. In 2010, spending on specialty drugs jumped 17.4 percent, compared with only 1.1 percent for other drugs, according to Medco Health Solutions, a pharmacy benefits manager that merged this month with Express Scripts.

Insurers typically encourage patients to use less expensive drugs by classifying products into tiers with successively higher co-payments, like $10, $30 and $50. Generic drugs are usually in the lowest tier, preferred brand-name drugs in the second tier and other brand-name drugs in the third.

But some insurers are now putting specialty drugs into a fourth tier of their own with extra high co-payments, or even co-insurance, in which the patient pays a percentage of the drug cost.

About 14 percent of workers with insurance are in plans that have four or more tiers, up from 7 percent in 2008, according to the Kaiser Family Foundation’s 2011 survey of benefits.

Patient advocates say that for some diseases, like multiple sclerosis, none of the drugs are inexpensive, making it impossible to avoid the high out-of-pocket costs unless people stop taking their medicine and endanger their health.

That discriminates against people with certain diseases, they say, and contravenes the whole idea of insurance, which is to help people pay for costly medical problems.

Mark Merritt, president of the Pharmaceutical Care Management Association, which represents pharmacy benefit managers, said the real problem was the price of the drugs. The legislation, he said, was an effort by the pharmaceutical industry to “turn a pricing problem into a coverage issue.”

Sharon Treat, executive director of the National Legislative Association on Prescription Drug Prices, an organization of state lawmakers, said that was a drawback of the bills. Insulating patients from the cost of their drugs, she said, “gives the drug companies a free ride to charge as much as they want.”

Still, Ms. Treat, a Democratic legislator in Maine, supported the bill in her state. And patient advocates say that while insurance is regulated, there is little they can do about drug prices.

Drug companies often help patients with their co-payments, but patient advocates say those programs do not solve the entire problem.

While pharmaceutical trade groups have expressed opposition to specialty tiers, Pfizer, which sells drugs for cancer, hemophilia and other diseases, has vigorously pushed the legislation, though it generally does not testify publicly.

“I was approached by a lobbyist from Pfizer with the original language,” said Stacey Allen Fitts, the state representative who introduced Maine’s bill. He said patient groups contacted him only afterward.

State Representative Cale P. Keable, a Rhode Island Democrat, and state Senator Joshua Green, a Democrat in Hawaii, said a Pfizer lobbyist provided or suggested language for the bills they introduced.

Bryon Wornson, vice president for public affairs in Pfizer’s specialty care business unit, said the company was working “in partnership with the patient groups,” adding, “I don’t think we are doing anything that is not fully transparent.”

The state bills — which would not apply to employers that insure themselves since their plans are not regulated by states — take various approaches.

New York’s law basically prohibits a fourth tier. At the time the legislation was enacted, no insurer in the state had a fourth tier, and it is not clear whether any would have started one had the law not been enacted.

Maine’s bill initially prohibited specialty tiers. The law as enacted allows them, but sets a limit of $3,500 a year for patient co-insurance payments for drugs,

Louisiana and Texas both enacted laws last year that do not limit out-of-pocket drug costs, but prohibit insurers from raising them in the middle of a contract year.

Some state bills, like one introduced recently in California, and one that died in Washington, take the same approach as the federal law, but would have it apply earlier. The federal law requires insurers, starting in 2014, to cap total yearly out-of-pocket costs, including for drugs, at about $6,000 for an individual and $12,000 for a family.

That is still a lot for many patients, though some say it would be better than nothing.

“At least I can go, ‘O.K., this is the maximum it’s going to cost my family,’ ” said Heidi Barrett of Mukilteo, Wash.

She and her four children have psoriatic arthritis and her husband has ulcerative colitis. Three family members combined use about $13,000 worth of the drug Remicade, which is used to treat both conditions, each month. Because of a change in her husband’s insurance, the family will have to pay 10 percent of the drug’s cost starting next year.

“I don’t know what we’re going to do,” she said.

    States Seek Curb on Patient Bills for Costly Drugs, NYT, 12.4.2012,
    http://www.nytimes.com/2012/04/13/health/states-seek-to-curb-exorbitant-drug-costs-incurred-by-patients.html

The Autism Wars

April 7, 2012
The New York Times
By AMY HARMON

THE report by the Centers for Disease Control and Prevention that one in 88 American children have an autism spectrum disorder has stoked a debate about why the condition’s prevalence continues to rise. The C.D.C. said it was possible that the increase could be entirely attributed to better detection by teachers and doctors, while holding out the possibility of unknown environmental factors.

But the report, released last month, also appears to be serving as a lightning rod for those who question the legitimacy of a diagnosis whose estimated prevalence has nearly doubled since 2007.

As one person commenting on The New York Times’s online article about it put it, parents “want an ‘out’ for why little Johnny is a little hard to control.” Or, as another skeptic posted on a different Web site, “Just like how all of a sudden everyone had A.D.H.D. in the ’90s, now everyone has autism.”

The diagnosis criteria for autism spectrum disorders were broadened in the 1990s to encompass not just the most severely affected children, who might be intellectually disabled, nonverbal or prone to self-injury, but those with widely varying symptoms and intellectual abilities who shared a fundamental difficulty with social interaction. As a result, the makeup of the autism population has shifted: only about a third of those identified by the C.D.C. as autistic last month had an intellectual disability, compared with about half a decade ago.

Thomas Frazier, director of research at the Cleveland Clinic Center for Autism, has argued for diagnostic criteria that would continue to include individuals whose impairments might be considered milder. “Our world is such a social world,” he said. “I don’t care if you have a 150 I.Q., if you have a social problem, that’s a real problem. You’re going to have problems getting along with your boss, with your spouse, with friends.”

But whether the diagnosis is now too broad is a subject of dispute even among mental health professionals. The group in charge of autism criteria for the new version of the Diagnostic and Statistical Manual of Mental Disorders has proposed changes that would exclude some who currently qualify, reducing the combination of behavioral traits through which the diagnosis can be reached from a mind-boggling 2,027 to 11, according to one estimate.

Biology, so far, does not hold the answers: there is no blood test or brain scan to diagnose autism. The condition has a large genetic component, and has been linked to new mutations that distinguish affected individuals even from their parents. But thousands of different combinations of gene variants could contribute to the atypical brain development believed to be at the root of the condition, and the process of cataloging them and understanding their function has just begun.

“When you think about that one in 88, those ‘ones’ are all so different,” said Brett Abrahams, an autism researcher at Albert Einstein College of Medicine. “Two people can have the same mutation and be affected very differently in terms of severity. So it’s not clear how to define these subsets.”

Some parents bristle at the notion that their child’s autism diagnosis is a reflection of the culture’s tendency to pathologize natural variations in human behavior. Difficulty in reading facial expressions, or knowing when to stop talking, or how to regulate emotions or adapt to changes in routine, while less visible than more classic autism symptoms, can nonetheless be profoundly impairing, they argue. Children with what is sometimes called “high functioning” autism or Asperger syndrome, for instance, are more likely to be bullied than those who are more visibly affected, a recent study found — precisely because they almost, but don’t quite, fit in.

In a blog entry, Christa Dahlstrom wrote of the “eye-rolling response” she often gets when mentioning her son’s autism by way of explaining his seeming rudeness: “The optimist in me wants to hear this as supportive (Let’s not pathologize differences!) but the paranoid, parent-on-the-defensive in me hears it as dismissive.”

There are, Ms. Dahlstrom acknowledges, parents of children with autism whose challenges are far greater. And perhaps it stands to reason that at a time when government-financed services for such children are stretched thin, the question of who qualifies as autistic is growing more pointed. “ ‘You don’t get it; your kid is actually toilet trained,’ ” another mother told her once, Ms. Dahlstrom recalled. “And of course she was right. That was the end of the conversation.”

But Zoe Gross, 21, whose autism spectrum disorder was diagnosed at age 4, says masking it can take a steep toll. She has an elaborate flow chart to help herself leave her room in the morning (“Do you need a shower? If yes, do you have time for a shower?”). Already, she had to take a term off from Vassar, and without her diagnosis, she says, she would not be able to get the accommodations she needs to succeed when she goes back.

According to the C.D.C., what critics condemn as over-diagnosis is most likely the opposite. Twenty percent of the 8-year-olds the agency’s reviewers identified as having the traits of autism by reviewing their school and medical records had not received an actual diagnosis. The sharpest increases appeared among Hispanic and black children, who historically have been less likely to receive an autism diagnosis. In South Korea, a recent study found a prevalence rate of one in 38 children, and a study in England found autism at roughly the same rate — 1 percent — in adults as in children, implying that the condition had gone unidentified previously, rather than an actual increase in its incidence.

Those numbers are, of course, dependent on the definition of autism — and the view of a diagnosis as desirable. For John Elder Robison, whose memoir “Look Me in the Eye” describes his diagnosis in middle age, the realization that his social awkwardness was related to his brain wiring rather than a character flaw proved liberating. “There’s a whole generation of people who grew up lonelier and more isolated and less able to function than they might have been if we had taken steps to integrate them into society,” he said.

Yet even some parents who find the construct of autism useful in understanding and helping children others might call quirky say that in an ideal world, autism as a mental health diagnosis would not be necessary.

“The term has become so diffuse in the public mind that people start to see it as a fad,” said Emily Willingham, who is a co-editor of “The Thinking Person’s Guide to Autism.” “If we could identify individual needs based on specific gaps, instead of considering autism itself as a disorder, that would be preferable. We all have our gaps that need work.”

Amy Harmon is a national correspondent for The New York Times

who has written extensively on autism.

    The Autism Wars, NYT, 7.4.2012,
    http://www.nytimes.com/2012/04/08/sunday-review/the-autism-wars.html

Court Upends 9-Year Fight on Housing Mentally Ill

April 6, 2012
The New York Times
By MOSI SECRET

A federal appeals court, ruling on procedural grounds, struck down on Friday a judge’s order that New York State transfer thousands of mentally ill adults in New York City from institutional group homes into their own homes and apartments. In doing so, the court brought a nine-year legal battle to an abrupt end without resolving the underlying issues of how the state cares for such patients.

Though the lower court judge had ruled the current system violated federal law by warehousing people with mental illness in far more restrictive conditions than necessary, the appellate panel said the nonprofit organization that began the litigation, Disability Advocates, did not have legal standing to sue.

The panel, comprising three judges of the United States Court of Appeals for the Second Circuit, acknowledged that its decision essentially reset the long-running battle to its starting point.

“We are not unsympathetic to the concern that our disposition will delay the resolution of this controversy and impose substantial burdens and transaction costs on the parties, their counsel and the courts,” the opinion said.

The long-term implications for the mental health system are unclear. But it immediately removes the pressure on the state to move more than 4,000 people with mental illness who live in the city’s large group homes into what is known as supportive housing, in which patients live alone but continue to receive specialized treatment and services.

Josh Vlasto, a spokesman for Gov. Andrew M. Cuomo, said in a written statement that the administration was reviewing the decision. “The governor’s commitment to improving the quality of care for vulnerable populations and supporting opportunities for community living for people with disabling conditions is clear,” Mr. Vlasto said in the statement.

Cliff Zucker, the executive director of Disability Advocates, who less than two years ago was celebrating the lower court’s order for immediate changes to the system, said he would now seek to reach a settlement with state officials. “We are hopeful that this administration has recognized that this is a problem that needs to be solved and we’ll be able to solve it without recommencing litigation,” he said.

Barring such a deal, it is also possible that the Justice Department, which intervened late in the case on behalf of the plaintiffs, could file a new lawsuit, Mr. Zucker said.

Disability Advocates brought the lawsuit in 2003 after a series of articles in The New York Times described a system in which residents were poorly monitored and barely cared for, left to swelter in the summer and sometimes subjected to needless medical treatment and operations for Medicaid reimbursement.

After a five-week nonjury trial in 2009, Nicholas G. Garaufis, the Federal District Court judge overseeing the case, ruled that the practices violated the Americans With Disabilities Act. In a series of subsequent decisions, he ruled that the state must immediately begin moving patients out of the group homes and into supportive housing.

The plan, limited to New York City, would have given nearly all current and future adult home residents the opportunity to move into supported housing scattered throughout the boroughs, where they would live independently while also receiving help like case-management services and visits from psychiatrists and nurses. The plan was drawn from a proposal presented by advocates for mentally ill people that was backed by the Justice Department.

The state, which has vigorously defended the current system, argued that the advocates had overestimated the demand for supported housing and underestimated the cost, making a quick transition for the bulk of the population in adult group homes unfeasible. The state appealed the ruling.

The appellate court suspended the order to begin transferring patients immediately, later lifted the suspension and finally stopped the order again, leading to the ruling on Friday.

Although Judge Garaufis’s order to transfer thousands of people was not addressed in the ruling, the appellate court said it did “have concerns about the scope of the proposed remedy.”

“If this controversy continues, and if the renewed litigation reaches the remedial phase, the parties and the district court will have another opportunity to consider an appropriate remedy,” the court said.

But the heart of the ruling was on the procedural matter over whether Disability Advocates, a private nonprofit organization contracted to provide services for people with mental illness, had the legal standing to sue state agencies and officials on their behalf. On this point the appeals court ruled that Judge Garaufis was wrong.

In a statement celebrating the ruling, Jeffrey Edelman, the president of New York Coalition for Quality Assisted Living, which represents adult homes, defended the current system for housing people with mental illness and “the rights of these adults to live in the homes of their choice, rather than becoming the targets of others’ dangerous social experiments.”

    Court Upends 9-Year Fight on Housing Mentally Ill, NYT, 6.4.2012,
    http://www.nytimes.com/2012/04/07/nyregion/order-on-housing-mentally-ill-adults-in-new-york-city-is-struck-down.html

Katherine Russell Rich,

Who Wrote of Battle With Cancer,

Dies at 56

April 6, 2012
The New York Times
By MARGALIT FOX

Katherine Russell Rich, whose gritty, darkly comic memoir of her protracted battle with breast cancer became a beacon for other patients, died of the disease on Tuesday. She was 56, and against all predictions had lived with cancer for nearly a quarter-century.

The death was confirmed by a friend, Emma Sweeney.

In “The Red Devil: To Hell With Cancer — and Back,” published in 1999, Ms. Rich chronicles finding a lump in her breast in 1988, when she was 32. An editor at GQ magazine at the time, she had ended her marriage just three weeks earlier.

She goes on to chart her odyssey through a parallel universe she calls Cancerland, where she encounters insensitive doctors (one dropped her, calling her difficult), obtuse psychotherapists (one told her that her health problems were rooted in childhood), unsupportive support groups (one was run by someone with a mail-order divinity degree) and even less supportive bosses (one, apparently discomforted by Ms. Rich’s cancer, fired her).

She had a lumpectomy, chemotherapy and radiation, and the cancer seemed to remit. But as her book recounts, it returned with a vengeance in 1993, just after she had begun a job at Allure magazine.

This time the cancer was Stage 4 — the most advanced stage possible. It spread to her spine, breaking her bones and leaving her temporarily paralyzed. She was told she would live a year or two at most.

Over time, Ms. Rich underwent a number of additional treatments, including more chemotherapy and radiation, hormone therapy and, in 1995, a bone-marrow transplant. In the book, she describes the exquisite irony of working at Allure, with its emphasis on the feminine ideal, while being bald for long periods.

The treatments bought her more time. As Ms. Rich recounted, they also gave her the courage to quit editing and become a writer.

“The Red Devil” received wide attention in the news media and inspired an outpouring of support from fellow cancer patients. Reviewers praised the book’s unsentimental voice and unflinching candor.

Ms. Rich’s pugnacious engagement with her illness even gave her the fortitude, she said, to move to India for a year to learn Hindi. Her sojourn there, begun in 2001, is recounted in a second memoir, “Dreaming in Hindi: Coming Awake in Another Language,” published in 2009.

Though there was no oncologist around for hundreds of miles, she wrote, her cancer was largely manageable during her time there.

Ms. Rich wrote about her experience with cancer, and her life in India, in first-person articles in The New York Times and elsewhere.

“Here, you live among outlaws, your body’s own cells,” she wrote in an essay in O: The Oprah Magazine in June 2010. “Whole phalanxes of them turn mutinous, become silent killers. This is a country that’s both narrow and vast, where geography bends at the edges and landmarks vanish like Cheshire cats. ‘Oh, we don’t use that drug anymore,’ a doctor will say, five minutes after the drug was invented. So you have to become your own cartographer, make your own way.”

Katherine Russell Rich, known as Kathy, was born in Bryn Mawr, Pa., on Nov. 17, 1955. She earned a bachelor’s degree in religious studies from Syracuse University.

Ms. Rich’s marriage to Diego Olivé ended in divorce. Survivors include a brother, Stuart P. Rich Jr., and a sister, Lucy Harrison.

In the Oprah Magazine essay, Ms. Rich explored her decision to forsake editing for freelance writing. “When I was told I was going to die, I was shredded to realize I hadn’t made any real difference,” she wrote. She added, “The life of a writer was uncertain, but as a writer, it seemed, I might leave a mark.”

    Katherine Russell Rich, Who Wrote of Battle With Cancer, Dies at 56, NYT, 6.4.2012,
    http://www.nytimes.com/2012/04/07/health/katherine-russell-rich-who-wrote-of-cancer-fight-dies-at-56.html

Down the Insurance Rabbit Hole

April 4, 2012
The New York Times
By ANDREA LOUISE CAMPBELL

Cambridge, Mass.

ON the second day of oral arguments over the Affordable Care Act, Solicitor General Donald B. Verrilli Jr., trying to explain what sets health care apart, told the Supreme Court, “This is a market in which you may be healthy one day and you may be a very unhealthy participant in that market the next day.” Justice Antonin Scalia subsequently expressed skepticism about forcing the young to buy insurance: “When they think they have a substantial risk of incurring high medical bills, they’ll buy insurance, like the rest of us.”

May the justices please meet my sister-in-law. On Feb. 8, she was a healthy 32-year-old, who was seven and a half months pregnant with her first baby. On Feb. 9, she was a quadriplegic, paralyzed from the chest down by a car accident that damaged her spine. Miraculously, the baby, born by emergency C-section, is healthy.

Were the Obama health care reforms already in place, my brother and sister-in-law’s situation — insurance-wise and financially — would be far less dire. My brother’s small employer — he is the manager of a metal-fabrication shop — does not offer health insurance, which was too expensive for them to buy on their own. Fortunately, my sister-in-law had enrolled in the Access for Infants and Mothers program, California’s insurance plan for middle-income pregnant women. AIM coverage extends 60 days postpartum and paid for her stay in intensive care and early rehabilitation.

But when the 60 days is up next week, the family will fall through the welfare medicine rabbit hole. As a scholar of social policy at M.I.T., I teach students how the system works. Now I am learning, in real time.

For health coverage, the baby fares best. He is insured through Healthy Families, California’s version of the Children’s Health Insurance Program, the federal-state plan for lower-income children ineligible for Medicaid whose families cannot afford private insurance. California is relatively generous, with eligibility extending up to 250 percent of the federal poverty level of $19,090 for a family of three; 27 states have lower limits.

When the AIM coverage expires, my sister-in-law will be covered by Medi-Cal, California’s version of Medicaid, because she is disabled and has limited income. But because my brother works, they are subject to cost-sharing: they pay the first $1,100 of her health costs each month. Paying $1,100 leaves them with a monthly income of just 133 percent of the federal poverty level. If my brother makes more money, their share of the cost increases.

They must also meet the Medi-Cal asset test: beyond their house and one vehicle, they can hold $3,150 in total assets, a limit last adjusted in 1989. They cannot save for retirement (retirement plans are not exempt from the asset test in California, as they are in some states). They cannot save for college (California is not among the states that have exempted 529 college savings plans from their asset tests). They cannot establish an emergency fund. Family members like me cannot give them financial help, at least not officially. If either of them receives an inheritance, it will go to Medi-Cal. Medi-Cal services that my sister-in-law uses after age 55 will be added to a tab that she will rack up over the rest of her life. When she and my brother die, the state will put a lien on their estate; their child may inherit nothing. Even my brother’s hobby runs afoul of the asset test: he enjoys working on old cars, which he can no longer keep.

These are the limitations under which 7.5 million Medi-Cal recipients live. Nationwide, more than 50 million people are covered by their states’ version of Medicaid. Some states are more lenient in their income and asset tests, others less so. Nowhere is life in these programs a picnic.

That said, Medicaid is an important safety net for the poor, and the Obama reform would expand the program to cover all Americans under 133 percent of the poverty level (currently one has to be both poor and categorically eligible — a child or a pregnant woman, for example). But for the middle class who are thrust into Medicaid by circumstance, the program’s strictures are truly life-altering. My brother and sister-in-law desperately wanted to buy insurance and now wonder how to escape Medi-Cal’s forced penury. My sister-in-law will qualify for Medicare after the mandatory 24-month waiting period for disabled people, but Medi-Cal will be the secondary payer.

Their best hope is the survival of the Obama reform. Perhaps my brother can get a job that offers health insurance for the family, but without the reform’s protections, like the prohibition on denying coverage for pre-existing conditions, removal of annual and lifetime insurance caps, and reinsurance for large claims, there is no guarantee that they could obtain insurance. More likely, they would buy insurance on a health exchange. Here in Massachusetts, where such an exchange is in place, they could have purchased a plan with an affordable premium (at their income level, the monthly premiums range from $39 to $91 per adult). And these money and insurance issues would not have added to the other stresses in their profoundly changed lives.

Instead, their financial future is shattered. Family and friends are raising money to buy a wheelchair van and to renovate their home for accessibility. The generosity of the local community is stunning. One incident in particular struck me to the core. A woman from a small community nearby had something for us. A cancer survivor, she had decided to “give back” by placing donation cans in stores around town. She had finished her drive and consolidated the money. The small coffee can she handed over to me and my sister-in-law had a slit in the lid and was decorated with pink felt and ribbons, now a little smudged from handling. Inside were several hundred dollars in small bills. We burst into tears. This is social policy in the richest nation in the history of the world.

Andrea Louise Campbell is an associate professor of political science

at the Massachusetts Institute of Technology.

    Down the Insurance Rabbit Hole, NYT, 4.4.2012,
    http://www.nytimes.com/2012/04/05/opinion/down-the-insurance-rabbit-hole.html

Scientists Link Gene Mutation to Autism Risk

April 4, 2012
The New York Times
By BENEDICT CAREY

Teams of scientists working independently have for the first time identified several gene mutations that they agree sharply increase the chances that a child will develop autism. They have found further evidence that the risk increases with the age of the parents, particularly in fathers over age 35.

The gene mutations are extremely rare and together account for a tiny fraction of autism cases — in these studies, only a handful of children. Experts said the new research gave scientists something they had not had: a clear strategy for building some understanding of the disease’s biological basis.

Scientists have been debating the relative influence of inherited risk and environmental factors in autism for decades, and few today doubt that there is a strong genetic component.

But biologists have groped in vain for a reliable way to clarify the underlying genetics of these so-called autism spectrum disorders, including Asperger syndrome and related social difficulties that are being diagnosed at alarmingly high rates — on average, in one in 88 children, according to a government estimate released last week.

Previous studies have produced a scattering of gene findings but little consensus or confidence in how to proceed.

The new research — reported in three papers posted online on Wednesday in the journal Nature — provides some measure of both, some experts said. There are probably hundreds, perhaps more than a thousand, gene variations that could disrupt brain development enough to result in social delays.

An intensified search for rare mutations could turn up enough of these to account for 15 percent to 20 percent of all autism cases, some experts say, and allow researchers a chance to see patterns and some possible mechanisms to explain what goes awry.

“These studies aren’t so much a breakthrough, because we knew this was coming,” said Jonathan Sebat, a professor of psychiatry and cellular and molecular medicine at the University of California, San Diego, who was not a part of the research teams. “But I’d say it’s a turning point. We now have a reliable way forward, and I think it’s fair to expect that we will find 20, 30, maybe more such mutations in the next year or two.”

Other researchers were more cautious, saying that the genetics of rare mutations was not yet well enough understood to make conclusive statements about their effect on the behavior of specific genes.

“This is a great beginning, and I’m impressed with the work, but we don’t know the cause of these rare mutations, or even their levels in the general population,” said Dr. Aravinda Chakravarti of the Institute of Genetic Medicine at the Johns Hopkins University Medical School, who was not involved in the studies. “I’m not saying it’s not worth it to follow up these findings, but I am saying it’s going to be a hard slog.”

The three research teams took a similar approach, analyzing genetic material taken from blood samples of families in which parents who have no signs of autism give birth to a child who develops the disorder. This approach gives scientists the opportunity to spot the initial mutations that accompany the condition, rather than trying to work though possible genetic contributions from maternal and paternal lines. In all three studies, the researchers focused on rare genetic glitches called de novo mutations.

De novo mutations are not inherited but occur spontaneously near or during conception. Most people have at least one, and the majority of them are harmless.

In one of the new studies, Dr. Matthew W. State, a professor of genetics and child psychiatry at Yale, led a team that looked for de novo mutations in 200 people who had been given an autism diagnosis, as well as in parents and siblings who showed no signs of the disorder. The team found that two unrelated children with autism in the study had de novo mutations in the same gene — and nothing similar in those without a diagnosis.

“That is like throwing a dart at a dart board with 21,000 spots and hitting the same one twice,” Dr. State said. “The chances that this gene is related to autism risk is something like 99.9999 percent.”

The team found that a third child had a de novo mutation in another gene suspected of a possible link to autism risk — but one such mutation is not enough to make the case.

But a team led Dr. Evan E. Eichler, a professor of genome sciences at the University of Washington in Seattle, independently found the same thing in a study of 209 families: one child with autism — and a glitch in the very same gene.

The researchers added still another gene, finding two unrelated children with autism in their own sample who had de novo mutations in the same location. No such coincidences occurred among people in the studies who did not have an autism diagnosis.

Finally — in the third paper — a team led by Mark J. Daly of Harvard ran its own analysis of these three genes, among others, and found yet more cases.

Everyone typically has at least one de novo mutation, Dr. Daly said, but his study suggested that “kids with autism have a slightly higher rate, on average, and the effects are more severe.”

All three studies also found evidence that the risk of de novo mutations increases with parental age. In an analysis of 51 de novo mutations, Dr. Eichler’s group found that glitches were four times more likely to originate in DNA from the male than from the female. The risk is higher in fathers at 35 than at 25 and seems to creep up with age. This offers one possible explanation for earlier research linking older fathers with autism’s rise: older male sperm is more subject to small, perhaps random glitches that in rare cases affect brain development.

The emerging picture suggests that the search for therapies will probably be a very long one, and that what is known generally as autism may represent a broad category of related but biologically distinct conditions. But both Dr. Eichler’s and Dr. Daly’s groups found some evidence that high-risk genes interact in shared biological processes.

“This is really the tip of the tip of the iceberg,” Dr. Eichler said, “but I think the important thing is all of us agree on where to start.”

Dr. State added, “From my standpoint, this is a big deal, because I’ve been at this a long time, and for years and years you couldn’t get anyone to believe you’d even found one gene” that significantly increased risk.

    Scientists Link Gene Mutation to Autism Risk, NYT, 4.4.2012,
    http://www.nytimes.com/2012/04/05/health/research/
    scientists-link-rare-gene-mutations-to-heightened-risk-of-autism.html

Doctor Panels Recommend Fewer Tests for Patients

April 4, 2012
The New York Times
By RONI CARYN RABIN

In a move likely to alter treatment standards in hospitals and doctors’ offices nationwide, a group of nine medical specialty boards plans to recommend on Wednesday that doctors perform 45 common tests and procedures less often, and to urge patients to question these services if they are offered. Eight other specialty boards are preparing to follow suit with additional lists of procedures their members should perform far less often.

The recommendations represent an unusually frank acknowledgment by physicians that many profitable tests and procedures are performed unnecessarily and may harm patients. By some estimates, unnecessary treatment constitutes one-third of medical spending in the United States.

“Overuse is one of the most serious crises in American medicine,” said Dr. Lawrence Smith, physician-in-chief at North Shore-LIJ Health System and dean of the Hofstra North Shore-LIJ School of Medicine, who was not involved in the initiative. “Many people have thought that the organizations most resistant to this idea would be the specialty organizations, so this is a very powerful message.”

Many previous attempts to rein in unnecessary care have faltered, but guidance coming from respected physician groups is likely to exert more influence than directives from other quarters. But their change of heart also reflects recent changes in the health care marketplace.

Insurers and other payers are seeking to shift more of their financial pain to providers like hospitals and physician practices, and efforts are being made to reduce financial incentives for doctors to run more tests.

The specialty groups are announcing the educational initiative called Choosing Wisely, directed at both patients and physicians, under the auspices of the American Board of Internal Medicine and in partnership with Consumer Reports.

The list of tests and procedures they advise against includes EKGs done routinely during a physical, even when there is no sign of heart trouble, M.R.I.’s ordered whenever a patient complains of back pain, and antibiotics prescribed for mild sinusitis — all quite common.

The American College of Cardiology is urging heart specialists not to perform routine stress cardiac imaging in asymptomatic patients, and the American College of Radiology is telling radiologists not to run imaging scans on patients suffering from simple headaches. The American Gastroenterological Association is urging its physicians to prescribe the lowest doses of medication needed to control acid reflux disease.

Even oncologists are being urged to cut back on scans for patients with early stage breast and prostate cancers that are not likely to spread, and kidney disease doctors are urged not to start chronic dialysis before having a serious discussion with the patient and family.

Other efforts to limit testing for patients have provoked backlashes. In November 2009, new mammography guidelines issued by the U.S. Preventive Services Task Force advised women to be screened less frequently for breast cancer, stoking fear among patients about increasing government control over personal health care decisions and the rationing of treatment.

“Any information that can help inform medical decisions is good — the concern is when the information starts to be used not just to inform decisions, but by payers to limit decisions that a patient can make,” said Kathryn Nix, health care policy analyst for the Heritage Foundation a conservative research group. “With health care reform, changes in Medicare and the advent of accountable care organizations, there has been a strong push for using this information to limit patients’ ability to make decisions themselves.”

Dr. Christine K. Cassel, president and chief executive officer of the American Board of Internal Medicine Foundation, disagreed, saying the United States can pay for all Americans’ health care needs as long as care is appropriate: “In fact, rationing is not necessary if you just don’t do the things that don’t help.”

Some experts estimate that up to one-third of the $2 trillion of annual health care costs in the United States each year is spent on unnecessary hospitalizations and tests, unproven treatments, ineffective new drugs and medical devices, and futile care at the end of life.

Some of the tests being discouraged — like CT scans for someone who fainted but has no other neurological problems — are largely motivated by concerns over a malpractice lawsuits, experts said. Clear, evidence-based guidelines like the ones to be issued Wednesday will go far both to reassure physicians and to shield them from litigation.

Still, many specialists and patient advocates expressed caution, warning that the directives could be misinterpreted and applied too broadly at the expense of patients.

“These all sound reasonable, but don’t forget that every person you’re looking after is unique,” said Dr. Eric Topol, chief academic officer of Scripps Health, a health system based in San Diego, adding that he worried that the group’s advice would make tailoring care to individual patients harder. “This kind of one-size-fits-all approach can be a real detriment to good care.”

Cancer patients also expressed concern that discouraging the use of experimental treatments could diminish their chances at finding the right drug to quash their disease.

“I was diagnosed with Stage IV breast cancer right out the gate, and I did very well — I was what they call a ‘super responder,’ and now I have no evidence of disease,” said Kristy Larch, a 44-year-old mother of two from Seattle, who was treated with Avastin, a drug that the F.D.A. no longer approves for breast cancer treatment. “Doctors can’t practice good medicine if we tie their hands.”

Many commended the specialty groups for their bold action, saying the initiative could alienate their own members, since doing fewer diagnostic tests and procedures can cut into a physician’s income under fee-for-service payment schemes that pay for each patient encounter separately.

“It’s courageous that these societies are stepping up,” said Dr. John Santa, director of the health ratings center of Consumer Reports. “I am a primary care internist myself, and I’m anticipating running into some of my colleagues who will say, ‘Y’ know, John, we all know we’ve done EKGs that weren’t necessary and bone density tests that weren’t necessary, but, you know, that was a little bit of extra money for us.’ ”

    Doctor Panels Recommend Fewer Tests for Patients, NYT, 4.4.2012,
    http://www.nytimes.com/2012/04/04/health/doctor-panels-urge-fewer-routine-tests.html

Anti-Abortion Film Is Pro-Profit

April 4, 2012
The New York Times
By MELENA RYZIK

As mass entertainment goes, the abortion debate does not typically count as good Saturday-night date movie fare; the subject rarely makes it to the mainstream multiplex. But at a time when the issue is once again causing agitation in political circles, a small film, “October Baby,” about a woman who learns she is, as the movie puts it, a “survivor of a failed abortion,” is making a dent at theaters across the country.

The movie, the first feature by a pair of filmmaking brothers from Birmingham, Ala., opened the same weekend as the chart-topping “Hunger Games,” but with the backing of evangelical groups and churches, “October Baby” managed to open at No. 8 and, through Sunday, had made $2.8 million, more than three times its production budget. It is expected to move to more than 500 screens on April 13.

Distributed by Samuel Goldwyn Films and the Sony-owned Provident Films, which specializes in socially-conservative religious fare, it benefited from the kind of grass-roots religion-focused marketing (enlisting Bible and prayer groups and ministries) that has carried their other Christian-oriented movies, like “Fireproof” and “Courageous,” to box-office success.

But those films did not center on a lightning-rod topic like abortion. “October Baby” tells the story of Hannah, 19, a home-schooled Baptist who is told by a doctor that her ailments — asthma, seizures, moodiness — are the result of being born prematurely after an abortion attempt.

Hannah sets out to find her birth mother, a quest that ends in tears and, ultimately, a lesson in forgiveness delivered by a Catholic priest.

It was inspired by the story of Gianna Jessen, who says she was delivered alive at a California clinic after a late-term saline-injection abortion. As a paid speaker at anti-abortion events she tells of her struggles and medical conditions. (The film doesn’t get into the science, but a 1985 study published in Obstetrics & Gynecology examined 33,000 suction curettage abortions and found a failure rate of 2.3 per 1,000 at the 12-weeks or earlier.)

Though “October Baby” arrives at a moment when reproductive rights and women’s sexual health are again part of a robust national debate, its makers say they weren’t acting with a political agenda.

“I was just dumbfounded by a true story,” said Jon Erwin, 29, a co-writer and a producer of the movie, which he directed with his brother Andrew, 33. “I didn’t see it as a political issue.”

The Erwin brothers, who were home-schooled in what they described as a Christian household, said they voted Republican and considered themselves conservatives. But, they said, they did not think deeply about the abortion debate until they heard Ms. Jessen speak. “I began to research it because I didn’t know there was such a thing as an abortion survivor,” Jon Erwin said. “I’m an artist — sometimes the way artists process things is through art. I just felt I had to put this perspective on film.”

As it made its way to theaters, “October Baby” gained support, manpower or financing from conservative organizations like Focus on the Family.

Last year, before the film’s commercial release, it received test screenings in Alabama and Mississippi, just as Mississippi was considering a “personhood” ballot initiative that would have outlawed abortions. Though that amendment was defeated, the screenings, which scored well with audiences, were promoted by the American Family Association, a Christian-values group that has been active in the presidential race.

Given the links to these groups, the abortion rights organization Naral Pro-Choice America contends that the film is tied to an extreme anti-abortion message. A spokesman, Ted Miller, added that his group was “concerned that some proceeds from this film could be going to organizations that may intentionally mislead women about their health-care options.” The film’s credits include a list of anti-abortion Web sites, some in the guise of therapeutic resources, Naral said.

The Erwin brothers said they had earmarked 10 percent of the movie’s profits for a charity they founded, Every Life Is Beautiful, which supports adoption and so-called crisis pregnancy centers.

Kris Fuhr, vice president for theatrical marketing at Provident, said the company’s films typically list Web sites in the credits as a way to get viewers involved. “The beauty of movies is that they live on and on,” she said. “We hope that as people find this movie, that they’re able to get help if they feel like they need some help.”

She said she hoped the movie would spur conversation among audiences. “The movie is a very evenhanded portrayal of something that occurs in our society every day,” she said. “I think that clearly folks who have written about it and called it propaganda — there is something deeply personal about the movie that touches them.”

For Focus on the Family, the film was “so consistent with our strategic priorities to advocate for children and be a voice for life,” Kelly Rosati, vice president of community outreach for the group, said, adding that with a story about adoption the film followed “what we would describe as a pro-life agenda, an agenda that values both moms and their preborn babies.”

“October Baby” began the way most independent films do, with a small budget and a tight schedule. The Erwin brothers, whose credits include filming sports for ESPN and producing videos for Christian music stars like Amy Grant, shot for 20 days around Alabama in 2010. The cast includes John Schneider (“The Dukes of Hazzard”) and Jasmine Guy (“A Different World”) alongside an unknown in the lead, Rachel Hendrix, whom Andrew Erwin discovered when she attended the same college as his wife.

The reviews have not been kind. In The New York Times, Jeannette Catsoulis wrote that “the film communicates in the language of guilt and fear,” while Roger Ebert called it “amateurish and ungainly.”

But Meyer Gottlieb, the president of Samuel Goldwyn, noted that on the aggregate ratings site RottenTomatoes.com, audience approval is high — currently 89 percent — adding that he was not bothered by critics who contend that the movie is propaganda. “Controversy is not a bad thing in and of itself,” he said.

And he said the timing of the release had more to do with box office than politics. “Frankly, I wasn’t looking at the political landscape,” he said. “We’re a niche distributor — counterprogramming big Hollywood movies is a big part of our releasing strategy.” (The response to “October Baby” has not been overwhelming everywhere. On Saturday evening at the only Manhattan theater where it is playing, just 10 people were in the audience.)

With its soft-focus gaze and soundtrack of moody pop, “October Baby” is more melodramatic, and far less stark, than other recent films that deal with abortion, like the 2007 Tony Kaye documentary “Lake of Fire.” The Erwin brothers, who count Frank Capra as an inspiration but also like the films of another pair of brothers, the Coens (“they’re quirky,” Andrew said), say their film is not about pointing fingers at abortion providers or women, but about forgiveness.

“I wanted to make a movie about the value of each and every life, and how wonderful the choice for life is,” Jon Erwin said.

Ms. Fuhr also said she believed the movie was preaching compassion. “To the young woman who found herself pregnant,” she said, “if she found compassion early in the road, she might’ve made a different decision.”

    Anti-Abortion Film Is Pro-Profit, NYT, 4.4.2012,
    http://www.nytimes.com/2012/04/04/movies/october-baby-film-makes-a-dent-at-the-box-office.html

A Brief Therapy Heals Trauma in Children

April 2, 2012
5:01 pm
The New York Times
By JANE E. BRODY

Every year millions of children from all walks of life become victims of, or witnesses to, abusive or violent events that can result in long-lasting symptoms of distress. The events can range from sexual and physical abuse to involvement in a natural disaster, fire or serious motor vehicle accident.

In many cases, the trauma is unknown to parents and caregivers or never dealt with effectively. The consequences can be devastating for the children and families involved and for society at large. These children are at much greater risk of developing behavioral problems, failing at school, abusing drugs or alcohol and becoming violent themselves.

Without treatment, post-traumatic stress reactions can persist into adulthood, causing eating disorders, personality and mood disorders, relationship difficulties, persistent anxiety, unexplained physical problems, and violent or abusive behaviors.

According to report being released Tuesday by Safe Horizon, a victim assistance group that operates child advocacy centers in New York City, and the Childhood Violent Trauma Center at Yale University, children who are abused or neglected are 59 percent more likely than those who were not victimized to be arrested as juveniles, 28 percent more likely to be arrested as adults, and 30 percent more likely to commit a violent crime. They also face much higher rates of teenage pregnancy and are likelier to abuse or neglect their own children.

Silver Lining

But there’s good news here: The report describes a remarkably effective brief intervention developed at the trauma center that, according to Steven R. Marans, professor of psychiatry at Yale and director of the center, greatly diminishes symptoms in traumatized children and those who care for them.

With the staff at Safe Horizon, the Yale team adapted the program to meet the needs of children and families facing the potentially horrific scars of sexual and physical abuse. I spoke with the mothers of two such youngsters.

One, a stay-at-home mother in Staten Island, was shocked to learn that for three years her 12-year-old daughter had been molested by a priest who, she said, “was like a member of the family.” The priest had threatened the girl, saying her parents would never believe her.

The second mother, a financial executive from Brooklyn, said she was “devastated — my whole world collapsed” when her 10-year-old son revealed that he had been raped by an 11-year-old friend on a play date.

“I was distraught to learn my son had lost his innocence like that,” the woman told me. “His father and I had no idea how to address this.”

Both mothers wasted no time getting help. The Staten Island mother reported the abuse to the police, who referred her to a Safe Horizon center; the other took her son to the emergency room, where a nurse contacted the police, who in turn referred them to Safe Horizon.

In both cases, and scores of others like them, the children and their parents benefited enormously from just four to six structured sessions with trained clinicians. Unlike traditional counseling, which is often unstructured and prolonged and may not involve both child and caregiver, this program follows a proven pattern: first a session with the caregiver, then one with the child, then two sessions with them together. In each session a trained counselor fosters healing through reassurance and support and, with before-and-after tests, measures the effectiveness of the intervention. If necessary, the child or caregiver may be referred for further therapy.

The girl, who had become very distracted in school and repeatedly rejected physical contact with her own family members, is now doing much better in class and enjoys being hugged. Her recollections of the abuse have abated.

The Brooklyn boy and his family, though initially terrified, gained peace of mind and assurance that what happened was not their fault.

“If not for Safe Horizon, which was our calm in a hurricane, we would be really damaged by this event,” the boy’s mother said. “I didn’t want the incident to affect him later on. The therapist worked through things with my son, who now says it’s not a big deal.”

In 2010, Dr. Marans, Dr. Steven J. Berkowitz, now a child psychiatrist at the University of Pennsylvania, and Carla Smith Stover, an assistant professor in the Child Study Center at Yale School of Medicine, published the results of a controlled clinical trial of the new therapy program, called the Child and Family Traumatic Stress Intervention. The study, published in The Journal of Child Psychology and Psychiatry, involved 106 traumatized children ages 7 to 18 and their caregivers, who were randomly assigned to four sessions of the structured intervention or to conventional support for childhood trauma.

When evaluated three months later, those who received the intervention were much less likely to suffer from post-traumatic symptoms like sleep disturbances, intrusive thoughts, depression, anxiety, tantrums or feelings of helplessness or hopelessness.

Remarkable Results

The children completing the intervention were 65 percent less likely than those in the comparison group to have developed full-blown post-traumatic stress disorder and 73 percent less likely to experience partial or full post-traumatic stress disorder, researchers said.

As described in the study released on Tuesday, Safe Horizon’s experience among nearly 500 children who received the intervention “mirrored the results of the original trial at Yale,” said Rita Garza, spokeswoman for the organization.

Dr. Marans reported that children who participated experienced a 54 percent reduction in trauma symptoms, and their caregivers benefited almost as much.

“When children are alone with and don’t have words to describe their traumatic reactions, symptoms and symptomatic behaviors are their only means of expression,” he said. “And caregivers are often unable to understand the connection between the traumatic event and their children’s symptoms and behaviors. To heal, children need recognition and understanding from their caregivers.”

He added: “This intervention inspires hope and confidence. It can make an immediate and palpable difference in the daily lives of children who have suffered even the worst forms of abuse.”

Well over 90 percent of caregivers who participated in the intervention said they had learned new skills and would recommend the program, which could be a boon to child treatment centers throughout the country.

Nancy Arnow, in charge of child, adolescent and mental health treatment services at Safe Horizon, said: “We now have a standardized way to offer children and their families an evidence-based intervention that is both brief and remarkably effective. The number of children who need this kind of help is not decreasing. It’s increasing.”

Ms. Garza said: “Six centers elsewhere are now undergoing training, and we want the program to be replicated across the country. Children everywhere should be able to get this kind of help.”

    A Brief Therapy Heals Trauma in Children, NYT, 2.4.2012,
    http://well.blogs.nytimes.com/2012/04/02/a-brief-therapy-helps-heal-trauma-in-children/

Tale of Love and Illness Ends in Deaths

March 30, 2012
The New York Times
By MATT FLEGENHEIMER

His was a love story, Charles D. Snelling wrote — a tale of a shiftless dreamer and the woman who saved him, of the life they built over six decades and the disease that stood no chance of erasing it. By the end, he said, their time together had become a case study in reciprocity.

“She took care of me in every possible way she could for 55 years,” Mr. Snelling wrote of his wife, Adrienne, months before the two were to celebrate their 61st wedding anniversary. “The last six years have been my turn, and certainly I have had the best of the bargain.”

On Thursday, months after contributing a poignant essay to The New York Times about navigating a six-decade marriage upended by his spouse’s Alzheimer’s disease, Mr. Snelling killed his wife and himself, the Snelling family said in a statement released to The Morning Call of Allentown, Pa.. They were found Thursday in their home in Lehigh County in eastern Pennsylvania, the police said. Mr. Snelling shot himself, the coroner said. The ruling on Ms. Snelling’s death was pending. Both were 81.

In the statement, the Snelling family said Mr. Snelling had acted “out of deep devotion and profound love.”

Last December, in response to an Op-Ed column by David Brooks, Mr. Snelling contributed a 5,000-word “Life Report” essay to nytimes.com, devoting the final section to his wife’s disease and his role in managing it.

“It’s not noble, it’s not sacrificial and it’s not painful,” he wrote of his caretaking duties. “It’s just right in the scheme of things. After all, this lady rescued me from a fate worse than death, and for a long, long time.”

Mr. Snelling met the woman who would become his wife at a sophomore dance at Cedar Crest College in Allentown, Pa. She was spoken for then, “on the arm of the Yalie” who was her date, Mr. Snelling wrote. It would not last.

“That Adrienne was the girl that I wanted, the girl that I needed to bring into my life, and the girl that I had to marry became very clear to me quite soon,” Mr. Snelling wrote.

But it soon became apparent that Adrienne Angeletti was studious, he continued, and so he would have to be, too. When she took her books and a blanket outside to study, Mr. Snelling tagged along “to pester her,” he wrote.

“You’re not studying,” she would say, according to Mr. Snelling, to which he would reply, “I’m studying you.”

On March 21, 1951, the two were married. They honeymooned in Bermuda. Soon came children — five of them, over 10 years — and a series of career ventures ranging from artificial insemination of dairy cattle to real estate development to the presidency of the Allentown City Council.

In the 1970s, Mr. Snelling became finance chairman of the Republican Party in Pennsylvania. At 70, he was named to the Board of Directors of the Metropolitan Washington Airports Authority.

After decades of her support in these endeavors, the illness was a sort of “redemption” for him, Mr. Snelling wrote.

“I have dug in with the will,” he said. “Adrienne likes to be with me so, everywhere I go Adrienne goes as well.”

He went on, “We continue to make a life together, living together in the full sense of the word; going about our life, hand in hand, with everyone lending a hand, as though nothing was wrong at all.”

Earlier in the essay, Mr. Snelling had assured readers he did not intend to sound “boastful” in retelling a life blessed with “more ups than downs.” Mr. Snelling’s readers required no disclaimer. Some were moved to thank him.

“What a privilege it is to experience the ‘charmed’ life of another and as a result to appreciate what is valuable in our own,” one reader from London commented on the article.

“We should all be so lucky to have unconditional love,” wrote another, from Honolulu.

At the end of his essay, Mr. Snelling described the seal at Phillips Academy in Andover, Mass., his prep school: a hive abuzz with bees, with the Latin ‘Non Sibi’: “Not for self alone.”

Then he recalled another school creed. “The motto, also in Latin, is ‘Finis Origine Pendet,’ ” he wrote. “The Beginning Foretells the End.”

    Tale of Love and Illness Ends in Deaths, NYT, 30.3.2012,
    http://www.nytimes.com/2012/03/31/us/love-that-endured-alzheimers-ends-in-2-deaths.html

Taking Responsibility for Death

March 30, 2012
The New York Times
By SUSAN JACOBY

I WAS standing by my 89-year-old mother’s hospital bed when she asked a doctor, “Is there anything you can do here to give me back the life I had last year, when I wasn’t in pain every minute?” The young medical resident, stunned by the directness of the question, blurted out, “Honestly, ma’am, no.”

And so Irma Broderick Jacoby went home and lived another year, during which she never again entered a hospital or subjected herself to an invasive, expensive medical procedure. The pain of multiple degenerative diseases was eased by prescription drugs, and she died last November after two weeks in a hospice, on terms determined by explicit legal instructions and discussions with her children — no respirators, no artificial feeding, no attempts to buy one more day for a body that would not let her turn over in bed or swallow without agony.

The hospice room and pain-relieving palliative care cost only about $400 a day, while the average hospital stay costs Medicare over $6,000 a day. Although Mom’s main concern was her comfort and dignity, she also took satisfaction in not running up Medicare payments for unwanted treatments and not leaving private medical bills for her children to pay. A third of the Medicare budget is now spent in the last year of life, and a third of that goes for care in the last month. Those figures would surely be lower if more Americans, while they were still healthy, took the initiative to spell out what treatments they do — and do not — want by writing living wills and appointing health care proxies.

As the aging baby boom generation places unprecedented demands on the health care system, there is little ordinary citizens can do — witness the tortuous arguments in the Supreme Court this week over the constitutionality of the Affordable Care Act — to influence either the cost or the quality of the treatment they receive. However, end-of-life planning is one of the few actions within the power of individuals who wish to help themselves and their society. Too few Americans are shouldering this responsibility.

Of course many people want more aggressive treatment than my mother. And advance directives aren’t “death panels”; they can also be used to ensure the deployment of every tool of modern medicine. They can be changed or withdrawn at any time by a mentally competent person.

But public opinion polls consistently show that most Americans, like my mother, worry about too much rather than too little medical intervention. In a Pew Research Center poll released in 2006, only 22 percent said a doctor should always try to save a patient’s life, while 70 percent believed that patients should sometimes be allowed to die. More than half said they would tell their doctor to end treatment if they were in great pain with no hope of improvement.

Yet only 69 percent had discussed end-of-life care with a spouse; just 17 percent, or 40 percent of those over 65, had done so with their children. One-third of Americans had a living will and even fewer have taken the more legally enforceable measure of appointing a health care proxy to act on their behalf if they cannot act for themselves.

The latter omission is especially disturbing because by 2030, more than 8.5 million Americans will be over 85 — an age at which roughly half will suffer from Alzheimer’s disease or some other form of irreversible dementia. For many members of the baby boom generation — more likely to be divorced and childless than their parents — there may be no legal next of kin.

Without advance directives, even a loving child may be ignorant of her parent’s wishes. My mother remained conscious and in charge of her care until just a few days before she died, but like most women over 85, she was a widow. My younger brother died of pancreatic cancer two weeks before she did. It was an immense comfort to me, at a terrible time, to have no doubts about what she wanted.

My mother drew up her directives in the 1980s, when she was a volunteer in the critical care lounge of her local hospital. She once watched, appalled, as an adult daughter threw a coffeepot at her brother for suggesting that their comatose mother’s respirator be turned off. Because the siblings could not agree and the patient had no living will, she was kept hooked up to machines for another two weeks at a cost (then) of nearly $80,000 to Medicare and $20,000 to her family — even though her doctors agreed there was no hope.

The worst imaginable horror for my mother was that she might be kept alive by expensive and painful procedures when she no longer had a functioning brain. She was equally horrified by the idea of family fights around her deathbed. “I don’t want one of you throwing a coffeepot at the other,” she told us in a half-joking, half-serious fashion.

There is a clear contradiction between the value that American society places on personal choice and Americans’ reluctance to make their own decisions, insofar as possible, about the care they will receive as death nears. Obviously, no one likes to think about sickness and death. But the politicization of end-of-life planning and its entwinement with religion-based culture wars provide extra, irrational obstacles to thinking ahead when it matters most.

As someone over 65, I do not consider it my duty to die for the convenience of society. I do consider it my duty, to myself and younger generations, to follow the example my mother set by doing everything in my power to ensure that I will never be the object of medical intervention that cannot restore my life but can only prolong a costly living death.

Susan Jacoby is the author of “Never Say Die:

The Myth and Marketing of the New Old Age.”

    Taking Responsibility for Death, NYT, 30.3.2012,
    http://www.nytimes.com/2012/03/31/opinion/taking-responsibility-for-death.html

Diagnoses of Autism on the Rise, Report Says

March 29, 2012
The New York Times
By BENEDICT CAREY

The likelihood of a child’s being given a diagnosis of autism, Asperger syndrome or a related disorder increased more than 20 percent from 2006 to 2008, according to a report released on Thursday by the Centers for Disease Control and Prevention.

The new report estimates that in 2008 one child in 88 received one of these diagnoses, known as autism spectrum disorders, by age 8, compared with about one in 110 two years earlier. The estimated rate in 2002 was about one in 155.

The frequency of autism spectrum diagnoses has been increasing for decades, but researchers cannot agree on whether the trend is a result of heightened awareness, an expanding definition of the spectrum, an actual increase in incidence or some combination of those factors. Diagnosing the condition is not an exact science. Children “on the spectrum” vary widely in their abilities and symptoms, from mute and intellectually limited at one extreme to socially awkward at the other.

Children with such diagnoses often receive extensive state-financed support services — which some experts believe may have contributed to an increase in the numbers.

Doctors working to update the Diagnostic and Statistical Manual of Mental Disorders have proposed significant changes to the definition of autism, which are due to take effect in 2013. If the changes are carried out, some experts say, they could reduce the number of children being given a diagnosis.

“One thing the data tells us with certainty: There are many children and families who need help,” Dr. Thomas R. Frieden, director of the C.D.C., said in a news conference on Thursday.

C.D.C. researchers did not meet any of the children they judged to have an autism spectrum disorder. The team made the decisions based on evaluations of the children, drawn from 14 states. The estimated rates in those states varied widely, from one in 210 children in Alabama to one in 47 in Utah.

“This is a fourfold difference,” Dr. Éric Fombonne, a psychiatrist at McGill University and Montreal Children’s Hospital, said in an e-mail. “It means that ascertainment is unequal across states. Thus, in the next surveys, as ascertainment will most likely improve where it is currently low, average rates are bound to increase. Is there, in addition to this, a real increase in incidence? It’s possible, but cannot be determined from the study design.”

Over all, boys were almost five times as likely as girls to get such a diagnosis — at a rate of one in 54, compared with one in 252 for girls.

The sharpest increases appeared among Hispanic and black children, who historically have been less likely to receive an autism spectrum diagnosis than white children.

    Diagnoses of Autism on the Rise, Report Says, NYT, 29.3.2012,
    http://www.nytimes.com/2012/03/30/health/rate-of-autism-diagnoses-has-climbed-study-finds.html

Groups Blanket Supreme Court on Health Care

March 24, 2012
The New York Times
By ERIC LICHTBLAU

WASHINGTON — Justice Clarence Thomas likens all the outside political pressure that the Supreme Court is facing over its review of the Obama administration’s sweeping health care law to the distraction faced by a free-throw shooter confronted with fans waving wildly behind the basket. Neither, in his view, has much impact in the end.

“Why do you think they’re never distracted? They’re focusing on the rim, right?” Justice Thomas said when asked at a forum two weeks ago about the pressures of the health care case. “That’s the same thing here. You stay focused on what you’re supposed to do. All that other stuff is just noise.”

With three days of arguments scheduled for this week, the nine justices will need the steely nerves of a clutch free-throw shooter to block out all the noise surrounding a case that has generated perhaps the most intense outside lobbying campaign that the court has ever seen.

The U.S. Chamber of Commerce, which has helped lead opposition to the health care law, has been hosting moot court sessions to prepare lawyers involved in the case. Advocates on all sides of the issues, including Tea Party leaders who are against the law and health care professionals who favor it, are planning rallies. Many groups, like the American Constitution Society, liberal backers of the law and of Congress’s power to regulate commerce, are setting up war rooms and daily briefings on the Supreme Court steps.

In all, groups involved in the debate have spent tens of millions of dollars in the last two years to steer the political and legal debate. And a record number of organizations — 136 so far — have filed amicus curiae or “friend of the court” briefs, densely packed with historical citations and legal arguments, to urge the court to either strike down or uphold the law.

“Whenever you see a blockbuster case, we see the different groups coming out,” said Anthony Franze, a Washington lawyer who was a co-author of a study of such amicus briefs. “And this is the blockbuster of blockbusters.”

With the start of arguments this week, the lobbying efforts move from Congress squarely to the Supreme Court, which has found itself drawn increasingly into politically charged cases in recent years, including its intervention in the 2000 Florida recount in Bush v. Gore; its rulings limiting the sweep of executive power in Guantánamo Bay; and its remaking of campaign finance law in the 2010 Citizens United ruling.

Lobbyists and lawyers with a stake in the case will be giving near-instant analysis for their clients and for reporters, many of whom will be covering the arguments from start to finish.

Proponents of the sweeping 2010 law, working with the White House, have also developed “talking points” to emphasize the potential harm if the law is thrown out, including the reduction in coverage for those with pre-existing conditions and for young adults who wish to remain on their parents’ policies.

The groups filing amicus briefs include not only the usual heavy hitters like the chamber, AARP and virtually every major health care association, but also obscure groups that have rarely, if ever, been involved in a Supreme Court case.

“We don’t expect to be even a blip on the court’s radar, except to maybe count up the ‘for’ and ‘against,’ ” said Quentin Rhoades, a lawyer for the Montana Shooting Sports Association, which filed a 26-page brief opposing the law as a breach of states’ rights. He said he spent about 50 hours, pro bono, preparing the brief with another lawyer.

Dozens of other constituencies filing briefs put in similar efforts.

Economists are wading into the debate with briefs that offer clashing views of the benefits and harms that they believe the health care law brings.

Catholic and anti-abortion groups are opposing it because of concerns about federal financing for abortion services.

And the State of Massachusetts, which approved a similar insurance model under Gov. Mitt Romney in 2006, argues in its amicus brief that its experience “confirms that Congress had a rational basis” to impose minimum insurance requirements.

Typically, law clerks wade through the amicus briefs — known as green books for their covers — and highlight notable issues for the justices. But getting a justice’s ear is not cheap.

Lawyers who work on amicus briefs before the Supreme Court say it can cost $25,000 to $100,000 in lawyers’ time and expenses to prepare one, plus $1,500 or more to have them printed and distributed at the court.

But does the cajoling from outside groups have any real impact on the court’s decisions? At least in the case of the formal amicus briefs filed with the court, research suggests that the answer, increasingly, is yes.

A study published last year in The National Law Journal by Mr. Franze and R. Reeves Anderson, his colleague at the law firm Arnold & Porter, found the Supreme Court justices not only receiving more amicus briefs than ever before, but also citing them as support for their opinions far more often as well.

But the effects of less formal politicking — news coverage, rallies, protests, forums and other “noise,” as Justice Thomas called it — are less clear.

In a speech last year in Kansas City, Justice Stephen G. Breyer said politics outside the court’s chambers generally did not play a part in its deliberations.

But there are no doubt times when it has, he acknowledged, pointing as one example to the court’s infamous Dred Scott decision in 1857 that classified blacks as property but not citizens.

When Justice Thomas was asked about the outside pressure in the health care case at a law forum at Wake Forest University this month, he brushed it aside with a wave of the hand, saying all that matters are the formal pleadings that sit in a mail bin.

“All that other background noise, I never — I don’t listen to all this stuff,” he said. “I don’t read the papers, I don’t watch the evening news.” If justices let outside pressures distract them, he said, “in my opinion, you have no business in the job.”

Among the stories in the news media over the last few months were questions about whether he and Justice Elena Kagan could objectively consider the health care case because of personal and political connections.

Liberals in Congress and elsewhere contend that Justice Thomas’s objectivity is called into question by the paid consulting work that his wife, Ginny Thomas, has done with Tea Party groups in opposing the health care law.

Conservatives, meanwhile, assert that Justice Kagan’s own impartiality could be compromised by her role as President Obama’s first solicitor general during the start of the legal fight over the health care legislation.

Neither justice has indicated any hesitation to hear the case. And Chief Justice John G. Roberts Jr. has said that he has confidence in all his justices to decide when they may want to remove themselves from a case because of a possible conflict.

Bradley W. Joondeph, a law professor at Santa Clara University who has cataloged briefs in the case, said that while he saw no need for either justice’s recusal, he believes it is unrealistic to think the court could fully insulate itself from outside pressures.

“There’s no way for human beings to screen out the rest of the world on a decision like this,” Mr. Joondeph said. “This just sort of stands out as one of those cases where the institutional stature of the court is on the line.”

    Groups Blanket Supreme Court on Health Care, NYT, 24.3.2012,
    http://www.nytimes.com/2012/03/25/us/politics/lobby-groups-blanket-supreme-court-on-obama-health-care-plan.html

The Case for Sleep Medicine

March 24, 2012
The New York Times
By GAYLE GREENE

ACCORDING to a new study in the journal BMJ that has received wide media coverage, people who regularly took sleeping pills were nearly five times more likely to die over a two and a half year period than those who didn’t take them.

Oh no, I groaned, reading the headlines, not another scare story about sleeping pills. As a lifelong insomniac who has extensively researched the topic, I find such stories alarming — but not because of the information they present. Rather, I’m afraid that they will cause doctors to stop prescribing these medications to people who need them.

The risks of sleeping pills are real, as I well know, having taken them for three decades. But so are the risks of chronic sleep loss. As the pioneering sleep scientist William Dement has argued, sleep is “the most important predictor of how long you will live — perhaps more important than smoking, exercise or high blood pressure.”

Sleep deprivation ratchets up the stress system, leaving you more susceptible to even relatively mild sources of strain. When University of Chicago researchers led by Eve Van Cauter deprived young, healthy people of a few hours of sleep for six nights, they produced in them the hormonal profiles of much older people: higher levels of stress hormones and lower levels of growth hormone (essential to cell repair). The study’s participants developed hormonal imbalances conducive to weight gain and levels of insulin resistance like those of people with diabetes.

Loss of sleep also compromises immune resistance and leaves you more vulnerable to everything from the common cold to cancer. In a University of Chicago study led by Karine Spiegel, participants whose sleep was restricted to four hours a night for six nights had, when vaccinated for influenza, less than half the immune response of those who had slept well. Michael Irwin and colleagues at the University of California, Los Angeles found that even modest sleep loss — only one night, between 3 and 6 a.m. — significantly reduced white blood cell activity, a crucial line of defense against infection and cancer.

Then there are the ravages of sleep deprivation on the mind and mood. After a night with four hours sleep or less, I can’t think, can’t work, can barely string words together to make a sentence. Sleep deprivation undermines focus, creativity, motivation and judgment, and leads to a wide range of emotional disturbances including volatility, impulsivity and depression. Studies show that insomniacs have a hard time getting jobs, performing at jobs and holding on to jobs, let alone building careers. No wonder so many people make the trade-off that I’ve made: medication for functionality.

The recent study in BMJ about the dangers of sleep medications had methodological shortcomings: It compared a large group of people who had been prescribed sleep medication with a large group that had not, matching them in terms of age, sex, ethnicity, body mass index, smoking and drinking — but not in terms of how well they slept. Given that those taking the medications had more hypertension, heart failure, obesity, asthma and other health problems associated with poor sleep to begin with, it’s not surprising they had higher mortality rates.

Which is not to say that the drawbacks to sleep medication aren’t real; they are. These medications alter sleep cycles, so that the sleep they provide may not have the deep restorative benefits of natural sleep. They adversely affect memory and coordination, which can be bad news for the elderly, the group that takes them most. And you can develop a tolerance to them, causing you to take larger and larger doses to get the same effect. But the sleep they provide may make the difference between having a life or not.

The study in BMJ alludes to “the meager benefits” of sleep medications and the greater success of behavioral methods of dealing with insomnia, which include things like going to bed and getting up at set times and using the bed only for sleep. But such strategies are not as effective as is sometimes claimed: studies that demonstrate their efficacy tend to look at small numbers of carefully screened, self-selected and highly motivated subjects. Face it, if behavioral modification were that simple, there wouldn’t be so many of us taking medications.

It’s not fun to rely on medications that carry risks. Nor is it fun to rely on doctors who are often not very sympathetic or knowledgeable about sleep, whose medical training is a hazing in sleep deprivation, and who often pride themselves on how little sleep they need. Insomniacs need doctors who will work with us to troubleshoot our condition; we do not need doctors who have been scared into a one-size-fits-all solution, when one size so obviously does not fit all.

We need to be allowed to work out our own terms with sleep and balance one set of risks against the other, so we can get on with our lives.

Gayle Greene, a professor of English at Scripps College, is the author of “Insomniac.”

    The Case for Sleep Medicine, NYT, 24.3.2012,
    http://www.nytimes.com/2012/03/25/opinion/sunday/the-case-for-sleep-medicine.html

The Living After the Dying

March 17, 2012
The New York Times
By FRANK BRUNI

I SAT down to watch “How to Survive a Plague,” a new documentary about the history of the AIDS epidemic, expecting to cry, and cry I did: at the hollowed faces of people whittled to almost nothing by a disease with an ugly arc; at the panicked voices of demonstrators who knew that no matter how quickly research progressed, it wouldn’t be fleet enough to save people they loved; at the breadth and beauty and horror of the AIDS quilt, spread out across the National Mall, a thread of grief for every blade of grass beneath it.

I expected to be angry. Here, too, I wasn’t disappointed. The words of a physician on the front lines in the early days reminded me that “when people died in the hospital, they used to put them in black trash bags.” Many politicians mustered little more than contempt for AIDS sufferers. “There’s nothing ‘gay’ about these people, engaging in incredibly offensive and revolting conduct,” snarled Senator Jesse Helms, a Republican from North Carolina, at the time. The documentary memorializes that rant and that mind-set, and also shows Helms saying that he wishes demonstrators would “get their mentality out of their crotches.”

What I didn’t expect was how much hope I would feel. How much comfort. While the movie vividly chronicles the wages of bigotry and neglect, it even more vividly chronicles how much society can budge when the people exhorting it to are united and determined and smart and right. The fight in us eclipses the sloth and surrender, and the good really does outweigh the bad. That’s a takeaway of “How to Survive a Plague,” and that’s a takeaway of the AIDS crisis as well.

I referred to the movie, which was produced and directed by the journalist David France, as a history of the epidemic, and it is. But it teases out a specific strand and tells a particular story, focusing on the protest group Act Up, which was set into motion by Larry Kramer 25 years ago this month. He had already sounded an alarm over the rapidly spreading epidemic with his landmark play “The Normal Heart,” and in March 1987, during remarks at the lesbian and gay community center in downtown Manhattan, he bluntly told a roomful of men that if they didn’t take bold steps to make America and its government care, two-thirds of them could be dead in five years.

That same month Act Up — the acronym by which the AIDS Coalition to Unleash Power quickly came to be known — staged the first of its many protests, visiting New York’s financial nerve center and blocking traffic there. It occupied Wall Street long before the verb and address were welded together, in an era when ire over indiscriminate greed, manifest just last week by the viral sensation of a Goldman Sachs executive’s resignation, hadn’t been stoked to its current fury. And the group morphed from then and there into a model for the here and now of how social change occurs.

What you probably remember best about Act Up is its theatrical genius (or gall, depending on your sensibility). Its members held a “die-in” during a Mass inside St. Patrick’s Cathedral, going limp in the aisles so that police officers had to use stretchers to carry them away. They hurled the ash and bone of fallen comrades over the fence around the White House and onto the lawn.

But if boldness had been the sum of Act Up, the group wouldn’t have accomplished so much. It added enterprise and erudition to the mix. A friend of mine who covered an Act Up demonstration in San Francisco remembers standing in the street, chatting over the phone with a group spokesman and telling him that she would file her newspaper story as soon as she rounded up a certain statistic. Minutes later he called back, said that he had found a Kinko’s store nearby and told her that documents with the information she was seeking had already been faxed to her there.

In “How to Survive a Plague,” gay men and their allies are shown educating themselves about antiviral medications, about clinical-trial protocols, about the Food and Drug Administration approval process. They are shown successfully making the case that the trials should be less restrictive, and the process much faster. Because what they’re saying is so concrete and constructive, scientists can’t avoid paying it heed.

“If you come at a problem in a way that’s just disruptive and iconoclastic, but you don’t know what you’re talking about, all you are is a nuisance,” said Anthony S. Fauci, the director of the National Institute of Allergy and Infectious Diseases, when we talked last week. Act Up’s leaders, he told me, knew what they were talking about. As a result, they “cracked open the opaque process” of drug development, altered the patient-doctor relationship and “changed the whole face of advocacy,” he said.

That’s a remarkable tote board, and it’s not all. Act Up gets crucial credit for advancing the acceptance of gay people. A slogan it popularized, “silence equals death,” persuasively argued that gay men had to emerge from hiding so that people around them would see AIDS not as a distant abstraction but as a killer potentially stalking their brothers, sons, co-workers. Those men indeed came out, and people indeed saw. That’s why same-sex marriage is now such a prominent issue, with so many ardent advocates. That’s why the bullying of gay teenagers has become a national concern, and why the conviction of a Rutgers University student for spying on and taunting a roommate who then committed suicide has drawn national attention.

There are still politicians like Helms out there, but not as many. There’s still hate, but not as much. After more than 600,000 deaths from AIDS in this country and about 30 million around the globe, scientists still haven’t found a cure or vaccine. But there are highly effective treatments, and H.I.V.-infected people who get proper medical care — which isn’t, mind you, nearly enough of them — can expect long, full lives. And that’s largely because 25 years ago, a tribe in desperate trouble did something that religious conservatives who can get their minds out of people’s crotches should in fact admire. It elected self-reliance over self-pity, tapping its own reserves of intellect, ingenuity and grit to make sure its members were cared for.

In “How to Survive a Plague,” being screened just twice in Manhattan later this month in advance of an expected fall release, one of the epitaphs for that effort is given by Kramer himself.

“We had the brainpower, and we had the street power,” he says on-camera. “We, Act Up, got those drugs out there. It is the proudest achievement that the gay population of this world can ever claim.”

    The Living After the Dying, NYT, 17.3.2012,
    http://www.nytimes.com/2012/03/18/opinion/sunday/bruni-the-aids-warriors-legacy.html

U.S. Backs Antismoking Ad Campaign

March 15, 2012
The New York Times
By GARDINER HARRIS

For the first time, the federal government will directly attack the nation’s tobacco addiction with a series of advertisements highlighting the grisly toll of smoking, a campaign that federal health officials hope will renew the stalled decline in the share of Americans who smoke.

The government’s investment in the campaign is relatively modest: $54 million this year. The tobacco industry spends that much and more, on average, in just two days of promotional efforts. California has spent about $20 million annually since 2000 on anti-tobacco advertising, while New York spent about $10 million annually between 2003 and 2009. Other states also finance such ads.

But the effort by the Centers for Disease Control and Prevention is the first in which such advertisements will be played throughout the country. Dr. Thomas R. Frieden, the C.D.C.’s director, said the campaign would save lives and money.

“We estimate that this campaign will help about 50,000 smokers to quit smoking,” Dr. Frieden said Wednesday in an interview. “And that will translate not only into thousands who will not die from smoking but it will pay for itself in a few years in reduced health costs.”

The advertisements, which will appear on television and in newspapers starting Monday, show former smokers discussing the terrible health consequences of their habits.

In one TV ad, Terrie, 51, of North Carolina, who has a hole in her neck and barely any hair on her head after suffering head and neck cancer, tells the camera, “I want to give you some tips about getting ready in the morning.” She then pops in a set of false teeth, dons a blond wig and inserts a small speaker into the tracheotomy in her neck. She ties on a scarf to hide the device and says, “And now you’re ready for the day.” An announcer says: “You can quit. For free help, call 1-800-QUIT-NOW.”

Studies have shown that such graphic advertisements are effective in persuading smokers to quit, but they have also often led to opposition from smokers, who call them alarming and demeaning, and to efforts by the industry to end financing for the ads.

David Howard, a spokesman for the R. J. Reynolds Tobacco Company, which makes Camel and Pall Mall cigarettes, declined to comment directly on the advertising campaign because he had not seen it.

“We believe that adult tobacco consumers should be provided with accurate information about the risks associated with tobacco use,” he said. R. J. Reynolds is part of a group of tobacco makers that have sued the Food and Drug Administration to overturn rules that would require cigarette companies to cover much of their packaging with graphic warning labels. Two weeks ago, a federal judge in Washington declared the rules an unconstitutional violation of the companies’ free speech rights. The government is appealing.

Mr. Howard said that he doubted that tobacco companies would raise similar objections to the C.D.C. advertising campaign since it would not involve “taking our packaging to deliver anti-tobacco information.”

Dr. John Seffrin, chief executive of the American Cancer Society, said that cancer mortality rates are dropping faster than ever in the United States, and that the reduction in the proportion of Americans who smoke is one of the main reasons. He noted that a third of all cancers are directly attributable to smoking, and that many smoking-related cancers are unusually deadly and expensive to treat.

“If this ad campaign helps people quit and prevents some from starting, it’s the right thing to do,” he said.

Along with vaccinations, few public health efforts have the capacity to save as many lives as those that combat smoking.

Smoking remains the leading cause of preventable death and disease in the United States, killing more than 443,000 Americans each year, according to federal estimates. More than eight million Americans live with a smoking-related disease.

The C.D.C. ads will emphasize that smoking causes immediate damage to the body, and feature three former smokers providing tips about how they successfully quit.

“I’ve been waiting for the government to do this for 40 years,” said Matthew L. Myers, president of the Campaign for Tobacco-Free Kids. “Even in the tightest budget times, this is absolutely the right thing to do.”

    U.S. Backs Antismoking Ad Campaign, NYT, 15.3.2012,
    http://www.nytimes.com/2012/03/15/health/policy/cdc-finances-nationwide-antismoking-ad-campaign-a-first.html

New Worries About Sleeping Pills

March 12, 2012
5:16 pm
The New York Times
By RONI CARYN RABIN
Jon Han
The Consumer

Articles on how medicine affects both your well-being and your wallet.

Talk about sleepless nights.

Patients taking prescription sleep aids on a regular basis were nearly five times as likely as non-users to die over a period of two and a half years, according to a recent study. Even those prescribed fewer than 20 pills a year were at risk, the researchers found; heavy users also were more likely to develop cancer.

Unsurprisingly, the findings, published online in the journal BMJ, have caused a quite a stir. Americans filled some 60 million prescriptions for sleeping pills last year, up from 47 million in 2006, according to IMS Health, a health care services company. Panicked patients have been calling doctors’ offices seeking reassurance; some others simply quit the pills cold turkey.

Some experts were quick to point out the study’s shortcomings. The analysis did not prove that sleeping pills cause death, critics noted, only that there may be a correlation between the two. And while the authors suggested the sleeping pills were a factor in the deaths, those who use sleep aids tend as a group to be sicker than those who don’t use them. The deaths may simply be a reflection of poorer health.

Still, the findings underscore concern about the exploding use of sleeping pills. Experts say that many patients, especially the elderly, should exercise more caution when using sleep medications, including the non-benzodiazepine hypnotics so popular today, like zolpidem (brand name Ambien), eszopiclone (Lunesta) and zaleplon (Sonata).

“If someone comes to me on a sleeping pill, usually my tactic is to try to take them off it,” said Dr. Nancy A. Collop, president of the American Academy of Sleep Medicine and director of the Emory Sleep Center in Atlanta, who was an investigator in a clinical trial of Lunesta five years ago.

The non-benzodiazepine sedative hypnotics, on the market since the late 1980s, are believed to be safer and less likely to be abused than benzodiazepines or barbiturates. But many people take them for years, even though most are approved only for short-term use and generally their safety and effectiveness have not been evaluated beyond several weeks in clinical trials. (One exception is Lunesta, which was tested for up to six months.)

Some data suggest that the medications do not even do what they promise all that well, said Dr. Steven Woloshin, a professor of medicine at the Dartmouth Institute for Health Policy and Clinical Practice.

“The definition of insomnia is that you get less than six and a half hours of sleep, and it takes you 30 minutes or more to fall asleep,” said Dr. Woloshin, who is advocating for new labeling that spells out how well a drug actually works compared with a placebo. “But even when the drugs work better than placebos, and they don’t always, people still don’t fall asleep in less than 30 minutes, and they still don’t sleep much longer than six hours.”

And, the clinical trials show, some still feel groggy the next day, a side effect of the drugs.

Data from the largest trial reviewed by the Food and Drug Administration when it approved Sonata found the drug did not extend sleeping time, Dr. Woloshin pointed out; subjects on a 10-milligram dose and those taking a placebo both slept 6 hours 20 minutes on average. And those on the drug took 36 minutes on average to fall asleep during the first week of the trial, only 14 minutes less than the control group needed to fall asleep.

One in 20 said they felt sleepy the next day, and some reported memory problems.

Data from a large trial of Lunesta, also reviewed by the F.D.A., showed that subjects slept 37 minutes longer than a control group, but got only 6 hours 22 minutes of sleep, and it still took them 30 minutes to fall asleep; it took the subjects on placebo 15 minutes longer.

Even setting aside the controversial new study, the risks of popular sedative hypnotics can be significant. They can trigger severe allergic reactions in rare cases and may increase breathing problems; they can worsen depression, often a cause of sleeplessness.

They can contribute to confusion that affects judgment and behavior and have been implicated in falls that can be fatal for older adults. They may be involved in overdoses in combination with alcohol, and their use raises the risk of car accidents.

Patients who use hypnotics also have reported engaging in complex and bizarre behaviors while they are in a half-awake, half-asleep state, from raiding the fridge in the middle of the night to having sex, talking on the phone and even driving.

Drug company officials say the sedative hypnotics have been shown to be both safe and effective, though like other prescription sleeping pills, they may carry some risks.

The study published last month, by researchers from the Viterbi Family Sleep Center at Scripps Clinic in San Diego, was not the first to tie sleeping pills to an increased risk of death. A 2007 study in Norway of nearly 15,000 people found men were 1.5 times as likely to die and women 1.7 times as likely to die if they used sleeping pills. A 2010 Canadian study of more than 14,000 people found users were 1.36 times as likely to die as non-users.

A 2009 Swedish study that followed several thousand men and women for 20 years found that men who were regular users of hypnotics were 4.5 times as likely to die, while women were twice as likely to die.

In the latest study, researchers used health system medical records to compare survival rates of 10,529 patients who used hypnotic drugs with 23,671 people who used none during the same period. Non-users were a much healthier group, but the researchers were able to compare users and non-users with the same chronic conditions. They did not, however, have access to critical information about psychiatric diagnoses, nor did they know the causes of death.

“We think there are many things going on, not just one,” said Dr. Daniel F. Kripke, the paper’s lead author. He believes the drugs may worsen depression and may damage DNA, leading to cancer.

Representatives of drug companies making popular sleeping pills were critical of Dr. Kripke’s study. For one thing, they said, the observation period was too short to conclude that the drugs could contribute to the development of cancer. Sanofi-Aventis, maker of Ambien, issued a statement calling the new study “highly questionable.”

So what is an insomniac to do?

Nothing rash. Quitting sleeping pills abruptly can result in serious withdrawal symptoms and agitation, not to mention sleepless nights. Patients must taper off the medication over many weeks, experts say.

If sleeplessness is a chronic problem, talk to your physician. Ask for a thorough evaluation to determine if an underlying medical or psychiatric condition may be the cause; sleeplessness can also be a side effect of some medications. Consider asking for a referral to a doctor who specializes in sleep medicine.

Practice good “sleep hygiene” — habits that are conducive to sleeping well. Have a set bedtime and adopt a pre-sleep ritual, like reading. Do not nap during the day. Do not watch television or use the computer before going to sleep. Avoid exercise, nicotine, alcohol, caffeine and spicy food for several hours before going to sleep. Block out light and noise from the bedroom.

Some studies suggest that cognitive behavioral therapy can be effective in combating insomnia. If your insurance does not cover face-to-face counseling, there are online programs that have been found to be successful for both insomnia and anxiety.

    New Worries About Sleeping Pills, NYT, 12.3.2012,
    http://well.blogs.nytimes.com/2012/03/12/new-worries-about-sleeping-pills/

Women in Texas Losing Options

for Health Care in Abortion Fight

March 7, 2012
The New York Times
By PAM BELLUCK and EMILY RAMSHAW

Leticia Parra, a mother of five scraping by on income from her husband’s sporadic construction jobs, relied on the Planned Parenthood clinic in San Carlos, an impoverished town in South Texas, for breast cancer screenings, free birth control pills and pap smears for cervical cancer.

But the clinic closed in October, along with more than a dozen others in the state, after financing for women’s health was slashed by two-thirds by the Republican-controlled Legislature.

The cuts, which left many low-income women with inconvenient or costly options, grew out of the effort to eliminate state support for Planned Parenthood. Although the cuts also forced clinics that were not affiliated with the agency to close — and none of them, even the ones run by Planned Parenthood, performed abortions — supporters of the cutbacks said they were motivated by the fight against abortion.

Now, the same sentiment is likely to lead to a shutdown next week of another significant source of reproductive health care: the Medicaid Women’s Health Program, which serves 130,000 women with grants to many clinics, including those run by Planned Parenthood. Gov. Rick Perry and Republican lawmakers have said they would forgo the $35 million in federal money that finances the women’s health program in order to keep Planned Parenthood from getting any of it.

Although Texas already bars clinics that take such money from performing abortions, the new law is intended to prevent any state money from benefiting Planned Parenthood. “Planned Parenthoods across the country provide abortions, are affiliated with abortion providers, or refer women to abortion providers,” said Lucy Nashed, a spokeswoman for Mr. Perry.

Wayne Christian, a Republican state representative said, “I don’t think anybody is against providing health care for women. What we’re opposed to are abortions.” He added, “Planned Parenthood is the main organization that does abortions. So we kind of blend being anti-abortion with being anti-Planned Parenthood.”

The situation in Texas is mirrored in several other states that have tried to eliminate various methods of financing Planned Parenthood.

Abortion also undergirds the Republican presidential candidates’ opposition to federal financing for Planned Parenthood, a private nonprofit group that offers a variety of reproductive health services and is the nation’s largest provider of abortions. And critics of contraception coverage under the new federal health care law say that some birth control methods are essentially abortion drugs, an assertion scientists largely dispute.

As the case in Texas illustrates, such battles are affecting broader women’s health services. Some women have lost the only nearby clinic providing routine care.

Nationally, the newest target is Title X, the main federal family planning program. All four Republican presidential candidates support eliminating Title X, which was created in 1970 with Republican support from President Nixon and the elder George Bush, then a congressman.

Like other federal financing, Title X does not pay for abortions. Only some of it covers birth control. Title X also provides money for cervical and breast cancer screening, testing for H.I.V. and other sexually transmitted diseases, adolescent abstinence counseling, infertility counseling and other services.

Planned Parenthood receives about a quarter of Title X’s $300 million budget and sees about a third of Title X patients. The remaining money goes to clinics, community health centers, hospitals and state agencies.

Mitt Romney’s fiscal plan proposes eliminating Title X because it “subsidizes family planning programs that benefit abortion groups like Planned Parenthood.”

Rick Santorum, in a recent debate, acknowledged, to boos, that in Congress he voted for appropriations bills that included Title X money. He pledged to rectify that if elected, saying, “I’ve always opposed Title X funding.”

President Obama supports Title X, which serves five million low-income people.

“People think Planned Parenthood equals family planning the way Kleenex equals tissue, and it’s not true,” said Clare Coleman, president of the National Family Planning and Reproductive Health Association, a nonprofit, nonpartisan organization of family planning providers. Title X supports many other providers, she said: “In a lot of states there is no state money for family planning. So Title X is the ballgame.”

A 2009 Congressional Research Service report cited federal estimates that Title X helps prevent nearly a million unintended pregnancies annually. Reproductive health experts say that saves money, that every dollar spent on family planning saves about $4 in maternity and infant care.

Some experts also say the financing helps prevent about 400,000 abortions annually. Opponents of Title X and government financing of family planning say these effects are exaggerated.

“Eliminating Title X would not outlaw contraception,” said a spokesman for Ron Paul. “People would simply have to pay for contraceptives with their own money or money donated by private sources.”

The battle intensified in February when the House of Representatives voted to eliminate Title X and eliminate federal financing for Planned Parenthood. The Senate defeated the bill, but the issue remains alive.

Several state legislatures recently voted to stop some Planned Parenthood financing: Title X money in Kansas and North Carolina, Medicaid in Indiana, other family planning and breast cancer screening funds in Wisconsin. In three of the states, judges blocked the laws, at least temporarily, ruling that Planned Parenthood had been illegally excluded even if it was not named. (Wisconsin’s cuts have not been challenged in court.)

New Hampshire canceled a state contract with Planned Parenthood last year, but the federal government awarded the organization a similar contract. Recently, the New Hampshire House of Representatives voted to essentially strip Planned Parenthood of family planning money by creating a tiered system in which Planned Parenthood and other women’s clinics could receive financing only in the unlikely possibility that the state could not give it to government-run clinics or to hospitals. The Senate has not voted on the bill.

Texas enacted a similar tiered system and also sliced its two-year family planning budget from $111 million to $38 million, cuts that the nonpartisan state Legislative Budget Board estimated would eliminate services for nearly 284,000 women, lead to 20,500 additional births and cost Medicaid about $230 million. The board had recommended expanding family planning as a way of saving money.

Now, the Medicaid-financed Women’s Health Program is in jeopardy. Texas signed regulations prohibiting clinics affiliated with groups that provide abortions from receiving funds, even though the clinics do not perform abortions themselves. The federal government says excluding qualified providers in this way is illegal, requiring it to withhold $35 million — about 90 percent of the program’s financing — if the regulations, which take effect on Wednesday, are not rescinded.

That would effectively end the program, increasing the number of women without services to about 400,000. Already, Planned Parenthood of Hidalgo County, which is on the Texas-Mexico border, has closed four of eight clinics, including the one in San Carlos, and trimmed services.

The closest clinic to San Carlos is 16 miles away in Edinburg. There, a receptionist informs callers not to expect appointments soon. Wait times have grown to up to four weeks.

Many San Carlos patients struggle to reach Edinburg from their homes in impoverished neighborhoods called colonias. Maria Romero, a housecleaner with four children, who had a lump in her breast discovered at the San Carlos clinic, has no way to get there.

Ms. Parra, 33, the mother of five, managed to borrow a car to get to Edinburg after a pap smear at the San Carlos clinic indicated she might have cervical cancer. Further tests showed she was cancer-free.

Both women worry about getting birth control pills; the clinic may now have to charge them up to $20 for a month’s supply.

“I will have to go without,” Ms. Parra said as she left an English class at a community center and was walking to pick up her two youngest children from a Head Start program. “If I get pregnant again, God forbid.”

Emily Ramshaw writes for The Texas Tribune,

which produces a twice-weekly local section

in the Texas editions of The New York Times.

    Women in Texas Losing Options for Health Care in Abortion Fight, NYT, 7.3.2012,
    http://www.nytimes.com/2012/03/08/us/texas-womens-clinics-retreat-as-finances-are-cut.html

When States Abuse Women

March 3, 2012
The New York Times
By NICHOLAS D. KRISTOF

HERE’S what a woman in Texas now faces if she seeks an abortion.

Under a new law that took effect three weeks ago with the strong backing of Gov. Rick Perry, she first must typically endure an ultrasound probe inserted into her vagina. Then she listens to the audio thumping of the fetal heartbeat and watches the fetus on an ultrasound screen.

She must listen to a doctor explain the body parts and internal organs of the fetus as they’re shown on the monitor. She signs a document saying that she understands all this, and it is placed in her medical files. Finally, she goes home and must wait 24 hours before returning to get the abortion.

“It’s state-sanctioned abuse,” said Dr. Curtis Boyd, a Texas physician who provides abortions. “It borders on a definition of rape. Many states describe rape as putting any object into an orifice against a person’s will. Well, that’s what this is. A woman is coerced to do this, just as I’m coerced.”

“The state of Texas is waging war on women and their families,” Dr. Boyd added. “The new law is demeaning and disrespectful to the women of Texas, and insulting to the doctors and nurses who care for them.”

That law is part of a war over women’s health being fought around the country — and in much of the country, women are losing. State by state, legislatures are creating new obstacles to abortions and are treating women in ways that are patronizing and humiliating.

Twenty states now require abortion providers to conduct ultrasounds first in some situations, according to the Guttmacher Institute, a research organization. The new Texas law is the most extreme to take effect so far, but similar laws have been passed in North Carolina and Oklahoma and are on hold pending legal battles.

Alabama, Kentucky, Rhode Island and Mississippi are also considering Texas-style legislation bordering on state-sanctioned rape. And what else do you call it when states mandate invasive probes in women’s bodies?

“If you look up the term rape, that’s what it is: the penetration of the vagina without the woman’s consent,” said Linda Coleman, an Alabama state senator who is fighting the proposal in her state. “As a woman, I am livid and outraged.”

States put in place a record number of new restrictions on abortions last year, Guttmacher says. It counts 92 new curbs in 24 states.

“It was a debacle,” Elizabeth Nash, who manages state issues for Guttmacher, told me. “It’s been awful. Last year was unbelievable. We’ve never seen anything like it.”

Yes, there have been a few victories for women. The notorious Virginia proposal that would have required vaginal ultrasounds before an abortion was modified to require only abdominal ultrasounds.

Yet over all, the pattern has been retrograde: humiliating obstacles to abortions, cuts in family-planning programs, and limits on comprehensive sex education in schools.

If Texas legislators wanted to reduce abortions, the obvious approach would be to reduce unwanted pregnancies. The small proportion of women and girls who aren’t using contraceptives account for half of all abortions in America, according to Guttmacher. Yet Texas has some of the weakest sex-education programs in the nation, and last year it cut spending for family planning by 66 percent.

The new Texas law was passed last year but was held up because of a lawsuit by the Center for Reproductive Rights. In a scathing opinion, Judge Sam Sparks of Federal District Court described the law as “an attempt by the Texas legislature to discourage women from exercising their constitutional rights.” In the end, the courts upheld the law, and it took effect last month.

It requires abortion providers to give women a list of crisis pregnancy centers where, in theory, they can get unbiased counseling and in some cases ultrasounds. In fact, these centers are often set up to ensnare pregnant women and shame them or hound them if they are considering abortions.

“They are traps for women, set up by the state of Texas,” Dr. Boyd said.

The law then requires the physician to go over a politicized list of so-called dangers of abortion, like “the risks of infection and hemorrhage” and “the possibility of increased risk of breast cancer.” Then there is the mandated ultrasound, which in the first trimester normally means a vaginal ultrasound. Doctors sometimes seek vaginal ultrasounds before an abortion, with the patient’s consent, but it’s different when the state forces women to undergo the procedure.

The best formulation on this topic was Bill Clinton’s, that abortion should be “safe, legal and rare.” Achieving that isn’t easy, and there is no silver bullet to reduce unwanted pregnancies. But family planning and comprehensive sex education are a surer path than demeaning vulnerable women with state-sanctioned abuse and humiliation.

    When States Abuse Women, NYT, 3.3.2012,
    http://www.nytimes.com/2012/03/04/opinion/sunday/kristof-when-states-abuse-women.html

A Bad Amendment Defeated

March 1, 2012
The New York Times

Only one Senate Republican — Olympia Snowe of Maine, who is retiring — voted against a truly horrible measure on Thursday that would have crippled the expansion of preventive health care in America. The amendment, which was attached to a highway bill, was defeated on a narrow 48-to-51 vote. But it showed once again how far from the mainstream Republicans have strayed in their relentless efforts to undermine the separation of church and state, deny women access to essential health services and tear apart President Obama’s health care reform law.

The amendment, which was enthusiastically endorsed by Mitt Romney and Rick Santorum, would have allowed any employer or insurance company to refuse coverage for any activity to which they claim a religious or moral objection.

That would have meant that any employer who objects to cervical-cancer vaccines could have refused to provide health insurance that covers them. The same goes for prenatal sonograms for unmarried mothers, or birth control, H.I.V. screening or mammograms.

Health care reform, for the first time, required virtually all insurance policies to cover a package of preventive services without co-payments, including flu shots, pap smears and prenatal care. In August, after an Institute of Medicine recommendation, the Obama administration expanded that list to include birth control and screening for H.I.V. and cervical cancer, among other services.

Churches were exempted on religious grounds from covering birth control. And, last month, Mr. Obama announced a plan to let church-related institutions, like hospitals and universities, shift the cost of this coverage to their insurance companies. But that still wasn’t enough for Republicans.

If churches are exempted on religious grounds, they said, why shouldn’t any employer be allowed to refuse coverage if they have objections? Imposing this mandate, Senator Orrin Hatch of Utah said Thursday, constitutes “tyranny,” a bullying of the little guy by President Obama at the behest of his “feminist allies.”

But the real bullies are those who would allow any employer to arbitrarily cut off access to services recommended by the Institute of Medicine. Individual employers can no more claim exemptions from important public health requirements than they can to paying taxes for government policies they oppose.

Republicans claimed the issue was about religious freedom. But it was really about denying consumers — and particularly women — the right to make their own medical decisions and keeping up the antigovernment and anti-President Obama drumbeat.

Naturally, the party’s presidential candidates support it, having based their campaigns on the canard that Mr. Obama is using government to control people’s lives or trample on their religious beliefs. But most Americans support free access to contraception. Few people want their bosses or their insurance companies to tell them how to live their lives.

The good news is that the amendment was defeated. And, by championing it, the Republicans may well help inform more people about the popular benefits of health care reform — and about the extremism of one party that seems determined to take them away.

    A Bad Amendment Defeated, NYT, 1.3.2012,
    http://www.nytimes.com/2012/03/02/opinion/a-bad-amendment-defeated.html

Senate Rejects Step Targeting Coverage of Contraception

March 1, 2012
The New York Times
By ROBERT PEAR

WASHINGTON — The Senate on Thursday upheld President Obama’s birth control policy, voting to kill a Republican effort to let employers and health insurance companies deny coverage for contraceptives and other items they object to on religious or moral grounds.

The 51-to-48 vote illustrated a sharp divide between the parties and brought to the Congressional forefront the social issues that have roiled the race for the Republican presidential nomination. Over four days of debate, Democrats accused Republicans of infringing on women’s rights and focusing on issues long settled while Republicans accused Democrats of threatening religious freedom and violating the Constitution.

“The Senate will not allow women’s health care choices to be taken away from them,” said Senator Patty Murray, Democrat of Washington.

The politically charged fight heated up last month after the Obama administration unveiled its policy requiring health insurance plans to offer free contraceptives for women — a rule that provoked furious criticism from Roman Catholic institutions and some other religious groups. The administration quickly offered a revision that would force the health insurers — not the institutions — to bear the cost.

Still, Senate Republicans tried to seize on the uproar surrounding the administration rule and offered a Senate proposal that would allow a broad exemption for employers, framing it as a matter of conscience as much as contraception.

“The president is trampling on religious freedom,” said Senator Mike Johanns, Republican of Nebraska.

Democrats saw the issue tilting politically in their favor in recent days and forced the Senate vote even as some Republicans indicated unease about pressing the matter. One Republican, Senator Olympia J. Snowe of Maine, joined 48 Democrats and two independents in opposing the plan, days after she announced she was retiring from the Senate. Three Democratic senators — Bob Casey of Pennsylvania, Joe Manchin III of West Virginia and Ben Nelson of Nebraska — voted for the proposal, along with 45 Republicans. Mr. Casey and Mr. Manchin are up for re-election this year. Mr. Nelson is retiring.

Despite the vote, Congress is not done with the contraception debate. Speaker John A. Boehner said Thursday that House Republicans also wanted to protect religious employers who object to the requirement for contraceptive coverage.

“It’s important for us to win this issue,” Mr. Boehner said. He did not offer any details about a legislative path forward, but hinted that it would differ from the one tried by Senate Republicans.

Illustrating the political power of the issue, Mitt Romney, the Republican presidential candidate, moved quickly on Wednesday to clarify a comment that he was against the Republican plan by Senator Roy Blunt, Republican of Missouri. Mr. Romney said that he had misunderstood the question and that he supported Mr. Blunt’s proposal. Vice President Joseph R. Biden Jr. weighed in on the issue during a visit to Iowa State University on Thursday, saying that the administration plan was “screwed up in the first iteration” but that the compromise was the correct approach.

In the Senate, Democrats, defending the new health care law, said the Republican proposal went far beyond contraception and would allow employers to deny coverage for other items and services to which they objected.

Senator Barbara A. Mikulski, Democrat of Maryland, said Republicans were attacking women’s health care as part of “a systematic war against women.”

Mr. Blunt offered the proposal as an amendment to a highway bill. Under the proposal, health insurance plans and employers could refuse to provide or pay for coverage of “specific items or services” if the coverage would be “contrary to the religious beliefs or moral convictions of the sponsor, issuer or other entity offering the plan.”

Kathleen Sebelius, the secretary of health and human services, urged the Senate to reject the proposal. “The Obama administration believes that decisions about medical care should be made by a woman and her doctor, not a woman and her boss,” Ms. Sebelius said.

Republicans had hoped that the Senate debate would highlight what they say is the coercive nature of Mr. Obama’s health care overhaul, approved by Congress in 2010 without any Republican votes.

The Senate Republican leader, Mitch McConnell of Kentucky, said: “The president’s health care law empowers bureaucrats here in Washington to decide which tenets religious institutions can and cannot adhere to. If they don’t get in line, they’ll be penalized.”

Democrats argued that Republicans were trying to turn back the clock on women’s rights and pursuing an extreme right-wing social agenda that should scare voters in this election year.

The Senate majority leader, Harry Reid, Democrat of Nevada, said Republicans were “reviving the culture wars.”

“The Blunt amendment would allow any employer or insurer to deny coverage for virtually any treatment for virtually any reason,” Mr. Reid said.

Mr. Blunt, a former president of Southwest Baptist University in Bolivar, Mo., which objects to the administration policy, said: “This amendment does not mention any procedure of any kind. The word ‘contraception’ is not in there because it’s not about a specific procedure. It’s about a faith principle that the First Amendment guarantees.”

The 2010 health care law requires most insurers to cover preventive services without co-payments or deductibles. Under the administration policy, these services include all contraceptive drugs and devices approved by the Food and Drug Administration, as well as sterilization procedures.

Churches and other houses of worship would be exempt. In February, after protests from the Roman Catholic Church and others, Mr. Obama announced what he described as “an accommodation” for church-affiliated schools, universities, hospitals and charities. They would not have to provide or pay for contraceptive coverage, but their female employees could obtain such coverage directly from the employers’ insurance companies at no cost.

Republicans called this an accounting gimmick and said that religious employers would eventually bear the cost, in higher premiums.

Senator Barbara Boxer, Democrat of California, disagreed. “When insurers provide birth control, they save money,” she said. “It’s not only life-saving, it is cost-saving.”

Dr. Hal C. Lawrence III, executive vice president of the American Congress of Obstetricians and Gynecologists, opposed the Blunt amendment and affirmed the value of contraception, saying it “improves and saves babies’ lives, improves maternal health and can be life-saving for women with serious medical problems.”

The lobbying arm of the American Cancer Society also opposed the Blunt amendment, saying it would allow employers to deny coverage of life-saving preventive services like mammograms and smoking cessation programs, based on “undefined religious beliefs or moral convictions.”

Senate Rejects Step Targeting Coverage of Contraception, NYT, 1.3.2012,
    http://www.nytimes.com/2012/03/02/us/politics/senate-kills-gop-bill-opposing-contraception-policy.html