History > 2008 > USA > Health (V)

Illustration: Loren Capelli

Fast-Track Treatments for Cancer

NYT

3.11.2008

http://www.nytimes.com/2008/11/03/opinion/l03cancer.html

Bush Aides Rush

to Enact a Safety Rule Obama Opposes

November 30, 2008
The New York Times
By ROBERT PEAR

WASHINGTON — The Labor Department is racing to complete a new rule, strenuously opposed by President-elect Barack Obama, that would make it much harder for the government to regulate toxic substances and hazardous chemicals to which workers are exposed on the job.

The rule, which has strong support from business groups, says that in assessing the risk from a particular substance, federal agencies should gather and analyze “industry-by-industry evidence” of employees’ exposure to it during their working lives. The proposal would, in many cases, add a step to the lengthy process of developing standards to protect workers’ health.

Public health officials and labor unions said the rule would delay needed protections for workers, resulting in additional deaths and illnesses.

With the economy tumbling and American troops fighting in Iraq and Afghanistan, President Bush has promised to cooperate with Mr. Obama to make the transition “as smooth as possible.” But that has not stopped his administration from trying, in its final days, to cement in place a diverse array of new regulations.

The Labor Department proposal is one of about 20 highly contentious rules the Bush administration is planning to issue in its final weeks. The rules deal with issues as diverse as abortion, auto safety and the environment.

One rule would make it easier to build power plants near national parks and wilderness areas. Another would reduce the role of federal wildlife scientists in deciding whether dams, highways and other projects pose a threat to endangered species.

Mr. Obama and his advisers have already signaled their wariness of last-minute efforts by the Bush administration to embed its policies into the Code of Federal Regulations, a collection of rules having the force of law. The advisers have also said that Mr. Obama plans to look at a number of executive orders issued by Mr. Bush.

A new president can unilaterally reverse executive orders issued by his predecessors, as Mr. Bush and President Bill Clinton did in selected cases. But it is much more difficult for a new president to revoke or alter final regulations put in place by a predecessor. A new administration must solicit public comment and supply “a reasoned analysis” for such changes, as if it were issuing a new rule, the Supreme Court has said.

As a senator and a presidential candidate, Mr. Obama sharply criticized the regulation of workplace hazards by the Bush administration.

In September, Mr. Obama and four other senators introduced a bill that would prohibit the Labor Department from issuing the rule it is now rushing to complete. He also signed a letter urging the department to scrap the proposal, saying it would “create serious obstacles to protecting workers from health hazards on the job.”

Administration officials said such concerns were based on a misunderstanding of the proposal.

“This proposal does not affect the substance or methodology of risk assessments, and it does not weaken any health standard,” said Leon R. Sequeira, the assistant secretary of labor for policy. The proposal, Mr. Sequeira said, would allow the department to “cast a wide net for the best available data before proposing a health standard.”

The Labor Department regulates occupational health hazards posed by a wide variety of substances like asbestos, benzene, cotton dust, formaldehyde, lead, vinyl chloride and blood-borne pathogens, including the virus that causes AIDS.

The department is constantly considering whether to take steps to protect workers against hazardous substances. Currently, it is assessing substances like silica, beryllium and diacetyl, a chemical that adds the buttery flavor to some types of microwave popcorn.

The proposal applies to two agencies in the Labor Department, the Occupational Safety and Health Administration and the Mine Safety and Health Administration.

Under the proposal, they would have to publish “advance notice of proposed rule-making,” soliciting public comment on studies, scientific information and data to be used in drafting a new rule. In some cases, OSHA has done that, but it is not required to do so.

The Bush administration and business groups said the rule would codify “best practices,” ensuring that health standards were based on the best available data and scientific information.

Randel K. Johnson, a vice president of the United States Chamber of Commerce, said his group “unequivocally supports” the proposal because it would give the public a better opportunity to comment on the science and data used by the government.

After a regulation is drafted and formally proposed, Mr. Johnson said, it is “all but impossible” to get OSHA to make significant changes.

“Risk assessment drives the entire process of regulation,” he said, and “courts almost always defer” to the agency’s assessments.

But critics say the additional step does nothing to protect workers.

“This rule is being pushed through by an administration that, for the last seven and a half years, has failed to set any new OSHA health rules to protect workers, except for one issued pursuant to a court order,” said Margaret M. Seminario, director of occupational safety and health for the A.F.L.-C.I.O.

Now, Ms. Seminario said, “the administration is rushing to lock in place requirements that would make it more difficult for the next administration to protect workers.”

She said the proposal could add two years to a rule-making process that often took eight years or more.

Representative George Miller, a California Democrat who is chairman of the House Committee on Education and Labor, said the proposal would “weaken future workplace safety regulations and slow their adoption.”

The proposal says that risk assessments should include industry-by-industry data on exposure to workplace substances. Administration officials acknowledged that such data did not always exist.

In their letter, Mr. Obama and other lawmakers said the Labor Department, instead of tinkering with risk-assessment procedures, should issue standards to protect workers against known hazards like silica and beryllium. The government has been working on a silica standard since 1997 and has listed it as a priority since 2002.

The timing of the proposal appears to violate a memorandum issued in early May by Joshua B. Bolten, the White House chief of staff.

“Except in extraordinary circumstances,” Mr. Bolten wrote, “regulations to be finalized in this administration should be proposed no later than June 1, 2008, and final regulations should be issued no later than Nov. 1, 2008.”

The Labor Department has not cited any extraordinary circumstances for its proposal, which was published in the Federal Register on Aug. 29. Administration officials confirmed last week that the proposal was still on their regulatory agenda.

The Labor Department said the proposal affected “only internal agency procedures” for developing health standards. It cited one source of authority for the proposal: a general “housekeeping statute” that allows the head of a department to prescribe rules for the performance of its business.

The statute is derived from a law passed in 1789 to help George Washington get the government up and running.

The Labor Department rule is among many that federal agencies are poised to issue before Mr. Bush turns over the White House to Mr. Obama.

One rule would allow coal companies to dump rock and dirt from mountaintop mining operations into nearby streams and valleys. Another, issued last week by the Health and Human Services Department, gives states sweeping authority to charge higher co-payments for doctor’s visits, hospital care and prescription drugs provided to low-income people under Medicaid. The department is working on another rule to protect health care workers who refuse to perform abortions or other procedures on religious or moral grounds.

    Bush Aides Rush to Enact a Safety Rule Obama Opposes, NYT, 30.11.2008, http://www.nytimes.com/2008/11/30/washington/30labor.html?hp

World's oldest person, Edna Parker,

dies at 115

November 28, 2008
From Times Online
Hannah Strange

A great-great-grandmother who was the world's oldest person has died at the age of 115.

Indiana woman Edna Parker, who assumed the mantle more than a year ago, passed away on Wednesday at a nursing home in Shelbyville. She was 115 years, 220 days old.

Mrs Parker was born April 20, 1893, in central Indiana and had been recognised by Guinness as the world’s oldest person since the 2007 death of Japan's Yone Minagawa, who was four months her senior.

Dr Stephen Coles, the UCLA gerontologist who maintains a list of the world’s oldest people, said Mrs Parker was the 14th oldest validated super-centenarian in history. Maria de Jesus of Portugal, who was born September 10, 1893, is now the world’s oldest living person, according to the Gerontology Research Group.

Mrs Parker became a widow in 1939 - the year Judy Garland starred in The Wizard of Oz - when her husband, Earl Parker, died of a heart attack. She was 48. She remained alone in their farmhouse until age 100, when she moved into a son’s home and later to the Shelbyville nursing home.

Though she never drank alcohol or smoked and led an active lifestyle, she didn't credit this for her advanced years.

A teacher, her only advice to those who gathered to celebrate when she became the world's oldest person was to get “more education.”

Mrs Parker outlived both her sons, Clifford and Earl Jr. She also had five grandchildren, 13 great-grandchildren and 13 great-great-grandchildren.

Don Parker, 60, said his grandmother had a small frame and a mild temperament. She walked a lot and kept busy even after moving into the nursing home, he said.

“She kept active,” he said yesterday. “We used to go up there, and she would be pushing other patients in their wheelchairs.”

Indiana Governor Mitch Daniels, who celebrated with Mrs Parker on her 114th birthday, said it had been a "delight" to know her. She must have been a remarkable lady at any age, he added.

Mrs Parker graduated from the state's Franklin College in 1911 and went on to teach in a two-room school for several years.

She married Earl, her childhood sweetheart and neighbour, in 1913.

As was usual at the time, her career came to an end with her marriage and Mrs Parker became a farmer's wife, spending her days tending the home and preparing meals for the dozen men who worked on the farm.

Last year, she noted with pride that she and her husband were one of the first owners of an automobile in their rural area.

Coincidentally, Mrs Parker lived in the same nursing home as Sandy Allen, whom at 7ft 7¼ was officially the world's tallest woman until her death in August.

    World's oldest person, Edna Parker, dies at 115, Ts, 28.11.2008, http://www.timesonline.co.uk/tol/news/world/us_and_americas/article5250767.ece

Irwin C. Gunsalus,

Vitamin Biochemist, Dies at 96

November 22, 2008
The New York Times
By H. ROGER SEGELKEN

Irwin C. Gunsalus, who discovered the vitaminlike substance lipoic acid, which has been used as a successful treatment for chronic liver disease, and one of the active forms of vitamin B6, essential in metabolism, died Oct. 25 at his home in Andalusia, Ala. He was 96.

The cause was congestive heart failure, said his daughter C. K. Gunsalus of Urbana, Ill.

Dr. Gunsalus, a nutritional biochemist who was long associated with the University of Illinois at Urbana-Champaign, also led genetic-engineering research as an assistant secretary general of the United Nations.

He was granted a patent on lipoic acid in 1962. His work at the University of Illinois led, in the 1970s, to the use at other medical institutions of lipoic acid to treat chronic liver disease, and more recently to the experimental treatment of pancreatic and other cancers.

Lipoic acid is found naturally in a variety of organ meats, including kidney, heart and liver, and in potatoes, broccoli and spinach. It is proposed as a dietary supplement to prevent or delay conditions like Parkinson’s and Alzheimer’s diseases, but its efficacy has yet to be proved conclusively.

Trained as a bacteriologist and searching, in the early 1950s, for essential growth factors in the digestive system bacterium Enterococcus, Dr. Gunsalus discovered chemical forms of lipoic acid, including lipoate, which he called pyruvate oxidation factor, as well as one of the B6 (pyridoxine) vitamins, now called pyridoxal phosphate.

He later discovered the roles the compounds play in the metabolism of microbes, plants and mammals.

After retiring in 1982 from the University of Illinois, Dr. Gunsalus was named the founding director of the United Nations International Center for Genetic Engineering and Biotechnology and later led ecological studies of the Gulf of Mexico for the federal Environmental Protection Agency.

Irwin C. Gunsalus, known as Gunny to friends and colleagues, was born June 29, 1912, at the family’s prairie homestead in Sully County, S.D. His father was a grain farmer and self-taught mechanic who died in a threshing machine accident before his son left for college.

Dr. Gunsalus studied first at South Dakota State University, then transferred to Cornell University, where he earned bachelor’s, master’s and doctoral degrees in bacteriology.

From 1940 to 1947, Dr. Gunsalus taught bacteriology at Cornell, while leading investigations of disease risk and food safety during World War II.

After the war, he moved to Indiana University, serving as a professor of bacteriology until 1950, when he joined the Illinois faculty as a professor of microbiology.

In 1955, he changed his scientific specialty to become chairman of the division of biochemistry, a department he headed at Illinois until 1966.

Together with Roger Y. Stanier, he wrote several volumes of “The Bacteria: A Treatise on Structure and Function.”

His first marriage, to Merle Lamont Gunsalus, who survives, ended in divorce. His second wife, Carolyn Foust Gunsalus, his third wife, Dorothy Clark Gunsalus, and one son, Gene Gunsalus, all died before him.

He is survived by six children, Ann Gunsalus Miguel, C. K. Gunsalus, Glen Gunsalus, Kristin C. Gunsalus, Richard Gunsalus, and Robert Gunsalus; a sister, Anna Gunsalus Higgs; and seven grandchildren.

In the 1960s and ’70s, Dr. Gunsalus led biochemical studies of enzymes like bacterial cytochrome P-450, which helps to metabolize artificial and natural compounds in humans, animals and plants during stress and environmental adaptation.

Working in the field of genetics, he developed an explanation for the way microbes acquire their ability to adapt in different nutritional environments.

He was an adviser in the postdoctoral studies of Al Chakrabarty, who later bioengineered the first oil-eating microbes, and in the doctoral studies of James D. Watson, who later shared a Nobel Prize for his co-discovery of the DNA double helix.

Dr. Gunsalus was elected to the American Academy of Arts and Sciences, the American Academy of Microbiology, and the National Academy of Sciences, where he was chairman of the biochemistry section from 1978 to 1981.
 

He was the founding editor of the journal Biochemical and Biophysical Research Communications.

    Irwin C. Gunsalus, Vitamin Biochemist, Dies at 96, NYT, 21.11.2008, http://www.nytimes.com/2008/11/22/health/22gunsalus.html

 Dr. Adrian Kantrowitz,

Cardiac Pioneer, Dies at 90

November 19, 2008
The New York Times
By JASCHA HOFFMAN

Dr. Adrian Kantrowitz, who performed the first human heart transplant in the United States in 1967 and pioneered the development of mechanical devices to prolong the life of patients with heart failure, died Friday in Ann Arbor, Mich. He was 90.

The cause was complications of heart failure, said Jean Kantrowitz, his wife of nearly 60 years and a longtime colleague in developing the devices.

On Dec. 6, 1967, when he removed the heart of a brain-dead baby and implanted it into the chest of a baby with a fatal heart defect, Dr. Kantrowitz became the first doctor to perform a human heart transplant in the United States. The patient lived for only six and a half hours, but the operation was a milestone on the way to the routine transplants of today.

Along with Dr. Michael E. DeBakey of Texas and a few others, Dr. Kantrowitz helped open the new era in care for seemingly terminally ill heart patients, using both surgery and artificial devices. His work at Maimonides Medical Center in Brooklyn and Sinai Hospital in Detroit had a lasting impact, starting with his first headlines in 1959, when he gave a healthy dog a booster heart muscle.

Over six decades of surgical practice, he designed and used more than 20 medical devices that aided circulation and other vital functions.

Although his 1967 transplant was the first in the United States, it was not the first in the world, following by three days Dr. Christiaan Barnard’s in Cape Town. But Dr. Kantrowitz had been methodical in laying the groundwork for the procedure. He practiced hundreds of heart transplants in puppies over the previous four years, and had planned a human operation the previous year, but was prevented at the last minute because the donor infant had not been declared brain-dead.

“Although Dr. Kantrowitz had the dedication and perseverance to accomplish this remarkable surgical tour de force, it was the notion that, for the first time, science could view the heart as yet another organ that could be fixed that was a revolutionary concept,” Dr. Stephen J. Lahey, director of cardiothoracic surgery at Maimonides Medical Center, said in a statement on the 40th anniversary of Dr. Kantrowitz’s transplant.

While many doctors have worked to replace failing hearts altogether with artificial ones, Dr. Kantrowitz concentrated on finding ways to supplement the work of the natural heart with an impressive array of circulatory devices of his own invention. The most influential was the “left ventricular assist device,” or LVAD, which, for the first time in 1972, allowed a patient with severe chronic heart failure to leave the hospital with a permanent implant.

Another of his inventions was the intra-aortic balloon pump, described in The New York Times in 1967 as “a long, narrow gas line” inserted through the patient’s thigh that inflated “a six-inch-long sausage-shaped balloon” in the aorta. The device deflated when the heart pumped blood and inflated when it relaxed, thereby reducing strain on the heart, according to Dr. Kantrowitz’s theory of “counterpulsation.” The device has been used to treat about three million patients since it went into general use in the 1980s.

He also invented an early implantable pacemaker, designed with General Electric in 1962, and captured the first film of the mitral valve opening and closing inside a beating heart in 1951.

His inventiveness extended beyond cardiology. In 1961, inspired by the way the muscles in the heart were stimulated, he was the first doctor to enable paraplegic patients to move their limbs by electronically triggering their muscles.

Adrian Kantrowitz was born on Oct. 4, 1918, in New York City, to a mother who designed costumes for the Ziegfeld Follies and a father who ran a clinic in the Bronx that charged its patients 10 cents a week.

“My mother told me from the age of 3 that I wanted to be a doctor,” he told The New York Post in 1966.

As a boy he worked with his older brother Arthur to construct an electrocardiograph from old radio parts. The brothers later collaborated on the left ventricular assist device.

After graduating from New York University with a degree in mathematics in 1940, Dr. Kantrowitz enrolled in the Long Island College of Medicine (now a part of SUNY Downstate Medical Center) and completed an internship at Brooklyn Jewish Hospital. He earned his medical degree early, in 1943, as part of an accelerated program to supply doctors for the war effort. After serving two years as a battalion surgeon in the Army Medical Corps, Dr. Kantrowitz began a career in cardiac research and became a major figure in the first generation of cardiac surgeons.

From 1948 to 1955, he practiced surgery at Montefiore Hospital in the Bronx. From 1955 to 1970, he held surgical posts at Maimonides Medical Center in Brooklyn, where he led a team that devised many influential devices with support from the National Institutes of Health, including an electronic heart-lung machine and a radio transmitter that allowed paralyzed patients to empty their bladders.

In 1970 Dr. Kantrowitz left Maimonides when “it became apparent that a small community hospital in Brooklyn was not the proper environment for the development of innovative cardiac surgical techniques,” according to a recent profile in the journal Clinical Cardiology. Remarkably, he was able to move his entire team of 25 surgeons, engineers and nurses — and with them a nearly $3 million research grant — to Detroit, where he taught at Wayne State University School of Medicine and held surgical posts at Sinai Hospital for the rest of his career.

Besides his wife, Jean, who helped him start a medical device company, LVAD Technology, in 1983, his survivors include three children, Dr. Niki Kantrowitz, a cardiologist in Brooklyn; Dr. Lisa Kantrowitz, a radiologist in Newport Beach, Calif.; and Dr. Allen Kantrowitz, a neurosurgeon in Williamstown, Mass.; and nine grandchildren.

Dr. Kantrowitz received a lifetime achievement award from the American Society for Artificial Internal Organs in 2001. He did not rest on his laurels. This year the Food and Drug Administration approved a clinical trial of his latest cardiac assistance device, which promises to allow seriously ill patients to move around and even exercise.

    Dr. Adrian Kantrowitz, Cardiac Pioneer, Dies at 90, NYT, 19.11.2008, http://www.nytimes.com/2008/11/19/us/19kantrowiztz.html

Use of Antipsychotics in Children

Is Criticized

November 19, 2008
The New York Times
By GARDINER HARRIS

WASHINGTON — Powerful antipsychotic medicines are being used far too cavalierly in children, and federal drug regulators must do more to warn doctors of their substantial risks, a panel of federal drug experts said Tuesday.

More than 389,000 children and teenagers were treated last year with Risperdal, one of five popular medicines known as atypical antipsychotics. Of those patients, 240,000 were 12 or younger, according to data presented to the committee. In many cases, the drug was prescribed to treat attention deficit disorders.

But Risperdal is not approved for attention deficit problems, and its risks — which include substantial weight gain, metabolic disorders and muscular tics that can be permanent — are too profound to justify its use in treating such disorders, panel members said.

“This committee is frustrated,” said Dr. Leon Dure, a pediatric neurologist from the University of Alabama School of Medicine who was on the panel. “And we need to find a way to accommodate this concern of ours.”

The meeting on Tuesday was scheduled to be a routine review of the pediatric safety of Risperdal and Zyprexa, popular antipsychotic medicines made, respectively, by Johnson & Johnson and Eli Lilly & Company. Food and Drug Administration officials proposed that the committee endorse the agency’s routine monitoring of the safety of the medicines in children and support its previous efforts to highlight the drugs’ risks.

But committee members unanimously rejected the agency’s proposals, saying that far more needed to be done to discourage the medicines’ growing use in children, particularly to treat conditions for which the medicines have not been approved.

“The data show there is a substantial amount of prescribing for attention deficit disorder, and I wonder if we have given enough weight to the adverse-event profile of the drug in light of this,” Dr. Daniel Notterman, a senior health policy analyst at Princeton University and a panel member, said when speaking about Risperdal.

Drug agency officials responded that they had already placed strongly worded warnings on the drugs’ labels.

“I’m a little puzzled about the statement that the label is inadequate,” said Dr. Thomas Laughren, director of the agency’s division of psychiatry products. “I’m anxious to hear what more we can do in the labeling.”

Kara Russell, a spokeswoman for Johnson & Johnson, said, “Adverse drug reactions associated with Risperdal use in approved indications are accurately reflected in the label.”

But panelists said the current warnings were not enough.

While panel members spoke at length about Risperdal, they said their concerns applied to the other medicines in its class, including Zyprexa, Seroquel, Abilify and Geodon.

The committee’s concerns are part of a growing chorus of complaints about the increasing use of antipsychotic medicines in children and teenagers. Prescription rates for the drugs have increased more than fivefold for children in the past decade and a half, and doctors now use the drugs to settle outbursts and aggression in children with a wide variety of diagnoses, even though children are especially susceptible to their side effects.

A consortium of state Medicaid directors is evaluating the use of the drugs in children on state Medicaid rolls to ensure that they are being properly prescribed.

The growing use of the medicines has been driven partly by the sudden popularity of the diagnosis of pediatric bipolar disorder.

The leading advocate for the bipolar diagnosis is Dr. Joseph Biederman, a child psychiatrist at Harvard University whose work is under a cloud after a Congressional investigation revealed that he had failed to report to his university at least $1.4 million in outside income from the makers of antipsychotic medicines.

In the past year, Risperdal prescriptions to patients 17 and younger increased 10 percent, while prescriptions among adults declined 5 percent. Most of the pediatric prescriptions were written by psychiatrists.

From 1993 through the first three months of 2008, 1,207 children given Risperdal suffered serious problems, including 31 who died. Among the deaths was a 9-year-old with attention deficit problems who suffered a fatal stroke 12 days after starting therapy with Risperdal.

At least 11 of the deaths were children whose treatment with Risperdal was unapproved by the F.D.A. Once the agency approves a medicine for a particular condition, doctors are free to prescribe it for other problems.

Panel members said they had for years been concerned about the effects of Risperdal and similar medicines, but F.D.A. officials said no studies had been done to test the drugs’ long-term safety.

Dr. Dure said he was concerned that doctors often failed to recognize the movement disorders, including tardive dyskinesia and dystonia, that can result from using these medicines.

“I have a bias that extra-pyramidal side effects are being under-recognized with these agents,” Dr. Dure said.

Dr. Laughren of the F.D.A. said the agency could do little to fix the problem. Instead, he said, medical specialty societies must do a better job educating doctors about the drugs’ side effects.

    Use of Antipsychotics in Children Is Criticized, NYT, 19.11.2008, http://www.nytimes.com/2008/11/19/health/policy/19fda.html

Mind

In Psychiatry,

Can a Punch Line Be a Lifeline?

November 18, 2008
The New York Times
By BENJAMIN BRODY, M.D

“Has anything changed since the treatments began?” I ask the patient, as he lies down on a stretcher in the ECT suite. The anesthesiologist places an IV line in his arm and checks his vital signs. My attending psychiatrist adjusts the machine that delivers the electric stimulus. I’m a psychiatry intern, and this is my electroconvulsive therapy rotation. I’m here to watch and learn.

“My cellphone always has a great charge,” the patient deadpans.

If this were a friend or colleague, I would laugh easily. But this is a patient I barely know. He has bipolar disorder, a previous suicide attempt and a history of bizarre, impulsive behavior. In that context, his joke just feels inappropriate and overly familiar.

I’m taken aback. Is it O.K. to laugh, I wonder? An intern, with years of experience being inexperienced, I quickly glance around to take stock of the room.

The nursing assistant laughs and the anesthesiologist grins broadly. The attending psychiatrist remains stone-faced, and says, “Clearly he’s improving.” As the anesthesiologist injects a sedative, a telephone rings. Everyone’s hands are occupied; the ringing continues. Just as the patient starts to drift off, he looks over at me and says: “Can you get that? It might be the governor calling to stay my execution.”

A moment later, he’s out. The attending hands me the leads, and I feel slightly uncomfortable as I bring them to the patient’s head. The nurses are still laughing as he begins to convulse.

When I was an intern on the medical service, I often joked with my patients. It’s how I naturally relate, and carefully joking with a frightened patient is a powerful way to establish rapport.

But when I left the internal medicine floors for psychiatry, the humor stopped. On the advice of the attending doctors, I tried to be more concrete and matter of fact with psychotic patients, more empathetic with depressed patients and more authoritarian while working in a volatile emergency room. Not since adolescence had I spent so much time worrying about how I come across.

I had a vague sense that prompting a patient to laugh could sometimes be therapeutic. But when is it safe — let alone useful — to joke with a psychiatric patient? At least in the hospital, the patients seemed to have enough trouble relating to me without having to decode the nuance of humor. It seemed too risky, too ripe for misunderstanding.

Still, there were patients who insisted on joking with me.

Leading a community meeting on the inpatient unit, I asked the patients and staff members to introduce themselves and say something about who they are. “I’m a social work intern!” a staff member said brightly, followed by a patient, who declared, “I’m a chronic bipolar patient.”

This wasn’t what I had in mind; I’d imagined some type of biographical detail, not a recitation of titles and diagnostic labels. I grew uneasy as the patients started describing their personal pathology to the group.

Just as I was getting uncomfortable, one of the patients acknowledged the tension. “I’m a nursing student,” he said, with mock authority. The next patient, someone who had trouble relating to others and often missed social cues, said, “I’m the nursing manager.”

The entire group, myself included, erupted with laughter. The moment was a striking contrast to the unit’s usual sober atmosphere. Not for the first time, I wondered whether it might ever be appropriate for me to lighten up and initiate a joke.

At the end of my internship, I got my answer. I was on call at 1 a.m. on a Thursday, admitting my last patient of the evening. She was a woman in her 60s, brought in by the police for disruptive behavior in her apartment building. After being involuntarily admitted, she hid in her room and refused to talk to the nurses.

When I tried to interview her, she buried her head under a pillow, exclaiming, “I refuse all psychiatric care!” But beneath her refusal, I noticed something playful in her tone.

“That’s O.K.,” I said. “We’re good at treating people who refuse psychiatric care.”

That got a little laugh.

“Can you tell me how you got here?” No response.

Maybe I should try something more concrete? Given her age and the story I got from the senior resident in the E.R., it dawned on me that she might be cognitively impaired. “Who’s running for president right now?” I asked.

That got a response. Three people, she replied, using an epithet I can’t repeat here.

What are their names? I shot back, using the same epithet.

“Clinton, Obama and McCain,” she said. She was looking at me now.

“O.K., so what’s a nice lady like you doing in a place like this?” I asked.

Suddenly, I was in. She started telling me about her paranoid delusions about her landlord and neighbors. I sat down and started writing.

“Tell me more,” I said.
 

Benjamin Brody is a resident in the Weill Cornell department of psychiatry at NewYork-Presbyterian Hospital.

    In Psychiatry, Can a Punch Line Be a Lifeline?, NYT, 18.11.2008, http://www.nytimes.com/2008/11/18/health/views/18mind.html

Florence Wald, Leader in US Hospice, Dies at 91

November 16, 2008
Filed at 11:15 a.m. ET
The New York Times
By THE ASSOCIATED PRESS

HARTFORD, Conn. (AP) -- Florence Wald, a former Yale nursing dean whose interest in compassionate care led her to launch the first U.S. hospice program, has died. She was 91.

Her daughter, Shari Vogler, said Saturday that Wald died Nov. 8 of natural causes at her Branford home. A hospice volunteer was by her side to the end, Vogler said.

Wald was dean of the Yale University School of Nursing in the 1960s when she updated its curriculum to include a stronger focus on comfort for dying patients and their families.

Wald's passion for hospice was sparked when she heard a lecture by the founder of St. Christopher's Hospice in London. She later left Yale to study at that center.

She returned to organize Connecticut Hospice in 1974 in Branford, widely accepted to be the first U.S. hospice program. Her husband and children also became deeply involved in the hospice movement, Vogler said.

''It was a family affair,'' said Vogler, a nurse and trained hospice worker. ''My mother was interested in the entire span of life, from birth through death, and she shared everything she was interested in with us all the way along the way.''

Wald's recent work included efforts to bring more hospice care to U.S. prisons and train inmates as hospice volunteers.

Wald was born in New York and graduated from Mount Holyoke College in Massachusetts in 1938 before receiving her master's degree in nursing from Yale in 1941. She was a nurse, research assistant and teacher before becoming dean of Yale's College of Nursing in 1959.

The hospice movement, which includes more than 3,200 programs nationwide, focuses on providing care for terminally ill patients and their families.

Wald has said that before hospice, many physicians were so focused on the evolving technology of medicine that their attention to patients' needs was being eroded.

''It was difficult for them to give up the treatment even when they saw the patient was going down, down, down and suffering more, more, more,'' she told The Associated Press at her 1998 induction into the National Women's Hall of Fame.

''There are times when the symptoms can't be controlled, and the physician and nurses and others need to meet that patient and let the patient decide for themselves what they want,'' Wald said.

Hospice gained more use and attention after Congress ordered Medicare in 1982 to start paying for the service. About 900,000 patients currently receive services each year from U.S. hospice programs.

''Our mother was passionate that all people should be treated as important,'' said Wald's son, Joel Wald, adding she also was interested in civil rights and the rights of women, patients and veterans. ''We're very fortunate to have had a mother who touched so many lives.''

Wald was honored in a memorial service at Yale on Wednesday, Vogler said.

    Florence Wald, Leader in US Hospice, Dies at 91, NYT, 16.11.2008, http://www.nytimes.com/aponline/us/AP-Obit-Wald.html

Florence S. Wald, American Pioneer in End-of-Life Care, Is Dead at 91

November 14, 2008
The New York Times
By DENNIS HEVESI

Florence S. Wald, whose vision of bringing the terminally ill peace of mind and, to whatever extent possible, freedom from pain led to the opening of the first palliative care hospice in the United States, died on Saturday at her home in Branford, Conn. She was 91.

Her death was confirmed by her son, Joel.

Mrs. Wald, who was dean of the Yale University School of Nursing from 1959 to 1966, was the prime mover, in 1974, in starting the Connecticut Hospice, the nation’s first home-care program for the terminally ill. Six years later, a 44-patient hospice — where the dying could be comforted by their loved ones around the clock and where the staff would do what it could to alleviate suffering — opened in Branford.

“This hospice became a model for hospice care in the United States and abroad,” the publication Yale Nursing Matters said this week, adding that Mrs. Wald’s role “in reshaping nursing education to focus on patients and their families has changed the perception of care for the dying in this country.”

There are now more than 3,000 hospice programs in the United States, serving about 900,000 patients a year.

In recent years, Mrs. Wald had concentrated on extending the hospice care model to dying prison inmates.

“People on the outside don’t understand this world at all,” Mrs. Wald told The New York Times in 1998. “Most people in prison have had a rough time in life and haven’t had any kind of education in how to take care of their health.”

And, she added, “There is the shame factor, the feeling that dying in prison is the ultimate failure.”

Part of Mrs. Wald’s solution was to train inmate volunteers to care for the dying. Besides comforting the terminally ill, she said, the program would save taxpayers’ money and “have rehabilitative qualities for these volunteers.”

More than 150 inmate volunteers in Connecticut prisons have since been trained, and the model is now being molded for residents of veterans’ homes in the state.

Mrs. Wald’s work brought her many honors. In 1998, she was inducted into the National Women’s Hall of Fame in Seneca Falls, N.Y., along with Madeleine K. Albright, Maya Angelou and Beverly Sills. She was also named a Living Legend by the American Academy of Nursing, and received the Founder’s Award of the American Hospice Association.

Florence Sophie Schorske was born in the Bronx on April 19, 1917, one of two children of Theodore and Gertrude Goldschmidt Schorske. Her husband, Henry Wald, died in 2000. In addition to her son, she is survived by a daughter, Shari Vogler; a brother, Carl Schorske, a Pulitzer Prize-winning historian; and five grandchildren.

As a child, Mrs. Wald was often hospitalized because of a chronic respiratory ailment. The care she received, she said, inspired her to go into nursing. After graduating from Mount Holyoke College in 1938, she received a master’s degree in nursing from Yale in 1941. During World War II, while working as a research technician for the Army Signal Corps, she met a young engineering student — Mr. Wald. Soon after, she turned down his marriage proposal.

She returned to Yale, earned a master’s degree in mental health nursing, and became an instructor in the nursing program. In 1958, at 41, she was appointed dean of the school of nursing.

Mr. Wald, by then a widower, read of her appointment in the newspaper. He got in touch, they started dating, and a year later, she accepted his new proposal.

Four years later, in 1963, a friend at Yale persuaded Mrs. Wald to attend a lecture by Dame Cicely Saunders, a British physician who was then planning to open the world’s first hospice, in Sydenham, south of London. Inspired, Mrs. Wald soon resigned as dean of the Yale nursing school to work on creating a similar center in the United States. She was troubled by a medical ethic that insisted on procedure after procedure.

“In those days, terminally ill patients went through hell, and the family was never involved,” she said. “No one accepted that life cannot go on ad infinitum.”

Dr. Saunders’s hospice, St. Christopher’s, opened in 1967, and Mrs. Wald went there to work and learn. After returning, she and several Yale colleagues joined forces to establish an American hospice. In 1971, Mr. Wald left his engineering firm and returned to Columbia University to earn a degree in hospital planning. His master’s thesis became the proposal for the Connecticut Hospice.

When Mrs. Wald received an honorary doctorate from Yale in 1996, she was introduced as “the mother of the American hospice movement.”

“That’s a completely incorrect description,” she said. “There were many, many people in those days who were just as inspired and motivated as I was.”

    Florence S. Wald, American Pioneer in End-of-Life Care, Is Dead at 91, NYT, 14.11.2008, http://www.nytimes.com/2008/11/14/health/14wald.html

Hospitals See Drop in Paying Patients

November 7, 2008
The New York Times
By REED ABELSON

In another sign of the economy’s toll on the nation’s health care system, some hospitals say they are seeing fewer paying patients — even as greater numbers of people are showing up at emergency rooms unable to pay their bills.

While the full effects of the downturn are likely to become more evident in coming months as more people lose their jobs and their insurance coverage, some hospitals say they are already experiencing a fall-off in patient admissions.

Some patients with insurance seem to be deferring treatments like knee replacements, hernia repairs and weight-loss surgeries — the kind of procedures that are among the most lucrative to hospitals. Just as consumers are hesitant to make any sort of big financial decision right now, some patients may feel too financially insecure to take time off work or spend what could be thousands of dollars in out-of-pocket expenses for elective treatments.

The possibility of putting off an expensive surgery or other major procedure has now become a frequent topic of conversation with patients, said Dr. Ted Epperly, a family practice doctor in Boise, Idaho, who also serves as president of the American Academy of Family Physicians. For some patients, he said, it is a matter of choosing between such fundamental needs as food and gas and their medical care. “They wait,” he said.

The loss of money-making procedures comes at a difficult time for hospitals because these treatments tend to subsidize the charity care and unpaid medical bills that are increasing as a result of the slow economy.

“The numbers are down in the past month, there’s no question about it,” said Dr. Richard Friedman, a surgeon at Beth Israel Medical Center in New York, although he said it said it was too early to call the decline a trend.

But many hospitals are responding quickly to a perceived change in their circumstances. Shands HealthCare, a nonprofit Florida hospital system, cited the poor economy and lower patient demand when it announced last month that it would shutter one of its eight hospitals and move patients and staff to its nearby facilities.

The 367-bed hospital that is closing, in Gainesville, lost $12 million last year, said Timothy Goldfarb, the system’s chief executive. “We cannot carry it anymore,” he said.

Some other hospitals, while saying they have not yet seen actual declines in patient admissions, have tried to curb costs by cutting jobs in recent weeks in anticipation of harder times. That includes prominent institutions like Massachusetts General in Boston and the University of Pittsburgh Medical Center, as well as smaller systems like Sunrise Health in Las Vegas.

“It’s safe to say hospitals are no longer recession-proof,” said David A. Rock, a health care consultant in New York.

A September survey of 112 nonprofit hospitals by a Citi Investment Research analyst, Gary Taylor, found that overall inpatient admissions were down 2 to 3 percent compared with a year earlier. About 62 percent of the hospitals in the survey reported flat or declining patient admissions.

Separately, HCA, the Nashville chain that operates about 160 for-profit hospitals around the country, reported flat admissions for the three months ended Sept. 30 compared with the period a year earlier, and a slight decline in inpatient surgeries.

Many people are probably going to the hospital only when they absolutely need to. “The only way they are going to tap the health care system is through the emergency room,” Mr. Taylor said.

And now, as the economy has slid more steeply toward recession in recent weeks, patient admissions seem to have declined even more sharply, some hospital industry experts say. “What we have not seen through midyear this year is the dramatic slowdown in volume we’re seeing right now,” said Scot Latimer, a consultant with Kurt Salmon Associates, which works closely with nonprofit hospitals.

While the drop-off in patient admissions may still seem relatively slight, hospital executives and consultants say it is already having a profound impact on many hospitals’ profitability. As fewer paying customers show up, there has been a steady increase in the demand for services by patients without insurance or other financial wherewithal, many of whom show up at hospital emergency rooms — which are legally obliged to treat them.

“It’s disproportionately affecting the bottom line,” Mr. Latimer said.

In California, for example, the amount of bad debt and charity care among hospitals has been steadily climbing, to $7.1 billion last year from about $5.8 billion in 2005. Those numbers could approach $8 billion for 2008, according to an analysis by Kurt Salmon.

The situation is exposing a main vulnerability of the nation’s hospital care system, which executives say relies heavily on private insurance to subsidize certain services. When there is a decline in profitable procedures paid for by private insurance, hospitals have less money to offset the relatively lower fees they receive from government insurance programs like Medicare and Medicaid.

“What happens in our country is that there’s really a hidden tax built in,” said Richard L. Gundling, an executive with a trade group for hospital financial executives, the Healthcare Financial Management Association. “Hospitals have to balance the mix of patients in order to survive.”

The amount of charity care provided by Shands HealthCare, the operator of the Gainesville hospital, has doubled in the last four years, to $115 million in fiscal 2008, Mr. Goldfarb said. He worries that the financial outlook will become even worse, with the prospect of payment cuts from state governments that are facing large budget shortfalls.

“If we’re going to survive the next few years,” he said, “we have to circle the wagons.”

The rapid moves by hospitals to cut costs — by laying off workers, consolidating facilities and freezing construction and other capital spending — are an abrupt change for an industry traditionally seen as insulated from economic woes.

Some hospital executives say they are simply being prudent. The University of Pittsburgh Medical Center, for example, is eliminating 500 jobs. The hospital system, which includes 20 hospitals and serves a large portion of Medicare and Medicaid patients, says that so far it has not seen a drop in patient admissions, but growth is tailing off.

“It’s much, much slower than we’ve seen in years past,” said Robert A. DeMichiei, Pittsburgh’s chief financial officer.

Mr. DeMichiei said Pittsburgh was mainly trying to reduce administrative jobs as a way to keep ahead of the worsening economy. Because large hospital groups like his have become more professionally managed in recent years, he said, they are no longer slow to reduce expenses.

Hospital executives “are beginning to act more like Corporate America,” said Mr. DeMichiei, whose own résumé includes various jobs at General Electric.

Another source of financial anxiety, hospitals say, is the continued difficulty in raising money through the credit markets. The majority of the nation’s hospitals are nonprofit, and they often raise capital through the municipal bond market to erect new buildings or make other significant capital investments. Because many hospitals say they are still unable to borrow easily, they have reacted by scaling back projects or holding off on major purchases.

“We are being extremely cautious about approving spending in these 60 to 90 days, until the markets stabilize,” said Michael A. Slubowski, the president of hospital and health networks for Trinity Health, a large Catholic system based in Novi, Mich., which operates nearly four dozen hospitals, mostly scattered across the Midwest.

While Trinity says it has not seen an overall reduction in its patient admissions, Mr. Slubowski says many of his counterparts have. “People are seeing declines,” he said.

Making matters worse for some hospitals has been a slowdown in bill payments, particularly by state Medicaid programs. The money hospitals are owed for their services — their accounts receivable — is growing, said Mr. Rock, the health care consultant, who works for the investment and consulting firm Carl Marks & Company in New York. “What we’re finding is one of the key drivers is Medicaid,” he said.

Many hospital executives also expect outright reductions in payments by Medicaid and Medicare.

Mr. Rock predicts that many hospitals will soon start to reconsider the services they provide, with an eye toward scaling back or eliminating some altogether. Procedures that rely heavily on patients’ making sizable cash outlays, like bariatric surgery, are particularly vulnerable, he said.

Hospital executives concede that they may not be as directly affected by the weak economy as retailers and banks, but they also say they are bracing for what is shaping up to be a severe and prolonged recession.

“There’s a lot of C.F.O. doom and gloom,” said Robert Shapiro, the chief financial officer at North Shore-Long Island Jewish Health System. “The sky may be really falling this time.”

    Hospitals See Drop in Paying Patients, NYT, 7.11.2008, http://www.nytimes.com/2008/11/07/business/07hospital.html

Scientists Decode Set of Cancer Genes

November 6, 2008
The New York Times
By DENISE GRADY

For the first time, researchers have decoded all the genes of a person with cancer and found a set of mutations that may have caused the disease or aided its progression.

Using cells donated by a woman in her 50s who died of leukemia, the scientists sequenced all the DNA from her cancer cells and compared it to the DNA from her own normal, healthy skin cells. Then, they zeroed in on 10 mutations that occurred only in the cancer cells, apparently spurring abnormal growth, preventing the cells from suppressing that growth and enabling them to fight off chemotherapy.

Mutations are genetic mistakes, and the ones found in this research were not inborn, but developed later in life, like most mutations that cause cancer. (Only 5 to 10 percent of all cancers are thought to be hereditary.)

The new research, by looking at the entire genome — all the DNA — and aiming to find all the mutations involved in a particular cancer, differs markedly from earlier studies, which have searched fewer genes for individual mutations. The project, which took months and cost $1 million, was made possible by recent advances in technology that have made it easier and cheaper to analyze 100 million DNA samples than it used to be to analyze 100.

The study was done at Washington University in St. Louis and is being published Thursday in the journal Nature. It is the first report of a “cancer genome,” and researchers say many more are to come.

The findings will not help patients immediately, but researchers say they could lead to new therapies and will almost certainly help doctors make better choices among existing treatments, based on a more detailed genetic picture of each patient’s cancer. Though the research involved leukemia, the same techniques can also be used to study the genomes of other cancers, and the researchers expect to apply them to breast, brain and lung cancers.

“This is the first of many of these whole cancer genomes to be sequenced,” said Richard K. Wilson, director of Washington University’s Genome Sequencing Center and the senior author of the study. “They’ll give us a whole bunch of clues about what’s going on in the DNA when cancer starts to bloom.”

Dr. Wilson said he hoped that in 5 to 20 years, DNA sequencing for cancer patients would consist of dropping a spot of blood onto a chip that slides into a desktop computer and getting back a report that suggests which drugs will work best for each person.

“That’s personalized genomics, personalized medicine in a box,” he said. “It’s holy grail sort of stuff, but I think it’s not out of the realm of possibility.”

Until now, Dr. Wilson said, most work on cancer mutations has focused on just a few hundred genes already suspected of being involved in the disease, not the 20,000 or so genes that make up the full human genome.

The earlier research has uncovered many mutations and led to the development of a few so-called targeted drugs, which treat some cancers by homing in on specific defects in the cells. Examples include the drug Herceptin, for women with a certain type of breast cancer, and Gleevec, for a type of leukemia and a rare gastrointestinal cancer.

So the older approach is useful, Dr. Wilson said. But he added, “if there are genes mutated that you don’t know about or don’t expect, you’ll miss them.”

Indeed, 8 of the 10 mutations his group found in the leukemia patient had never been linked to the disease before and would not have been found with the more traditional, “usual suspects” approach.

But researchers have debated which method is best.

“We had a lot of people who said it was a stupid idea to sequence the whole cancer genome,” Dr. Wilson said, noting that a private donor had paid for most of the study and that the National Cancer Institute had chipped in relatively little, and only after the work was well under way.

A cancer expert not involved with the study, Dr. Steven Nimer, chief of the hematology service at Memorial Sloan-Kettering Cancer Center, called the research a “tour de force” and the report “a wonderful paper.” He said the whole-genome approach seemed likely to yield important information about other types of cancer as well as leukemia.

“It is supporting evidence for the idea that you can’t just go after the things you know about,” Dr. Nimer said.

He added: “It would be nice to have this kind information on every patient we treat.”

Dr. Nimer also predicted that oncologists would quickly want to start looking for these mutations in their patients or in stored samples from former patients, to see if they could help in predicting the course of the disease or selecting treatments.

Studying cancer genomes has become a major thrust of research. In the past few years the government has spent $100 million dollars for genome studies in lung and ovarian cancers and glioblastoma multiforme, a type of brain tumor. But that project, The Cancer Genome Atlas, has not decoded an entire genome. So far, it has identified mutations in brain and lung cancers, also reported in Nature in September and October. One discovery is expected to affect medical practice — a mutation that can cause some patients with the brain cancer to get worse instead of better if they are given a common chemotherapy.

The person who gave her cells for the study at Washington University became not only the first cancer patient, but also the first woman to have her entire genome decoded. Her information will be available only to scientists and not posted publicly, to protect her privacy and that of her family. The only other complete human genomes open to researchers so far have come from men, two scientists known for ego as well as intellect, who ran decoding projects and chose to bare their own DNA to the world: James D. Watson and J. Craig Venter. Their genomes are available for all to inspect.

The woman at Washington University had acute myelogenous leukemia, a fast-growing cancer that affects about 13,000 people a year in the United States and kills 8,800. Its cause is not well understood. Like most cancers, it is thought to begin in a single cell, with a mutation that is not present at birth but that occurs later for some unknown reason. Generally, one mutation is not enough to cause cancer; the disease does not develop until other mutations occur.

“Most of them are just these random events in the universe that add up to something horrible,” said Dr. Timothy J. Ley, a hematologist at Washington University and the director of the study.

The researchers chose to study this disease because it is severe and the treatment has not improved in decades.

“It’s one of the nastiest forms of leukemia,” Dr. Wilson said. “It’s very aggressive. It affects mostly adults, and there’s really no good treatment for it. A very large fraction of the patients eventually will die from their disease.”

Dr. Ley said, “We wanted to start studying a cancer where it would make a difference to people and their families if we could begin to unravel its genetic roots.”

They chose this particular patient because she was a perfect example of one of the toughest challenges in treating the disease: figuring out early on which patients have a bad prognosis and immediately need the most aggressive therapy, like a bone-marrow transplant.

Doctors routinely try to gauge the severity of this leukemia by examining patients’ chromosomes, the structures that carry genes. The testing does not examine the DNA itself, but just checks to see if the chromosomes look normal. Certain abnormalities warn of a bad outlook. But some patients whose chromosomes look perfectly fine turn out to have a vicious form of the disease anyway. And that was true of the woman in the study.

Her chromosome test was normal, but she still died just two years after the disease was diagnosed, despite a barrage of chemotherapy and two bone-marrow transplants. Had the doctors known her prognosis early in her illness, they would have treated her even more aggressively from the start, Dr. Ley said.

Before starting treatment, she had donated samples of bone marrow and skin, so the researchers could compare her normal skin cells to cancer cells from her bone marrow. After she died, her family gave the scientists permission to sequence her entire genome. Dr. Wilson said the family knew that her DNA — - and therefore some of their own as well — had now become part of history. The family wishes to remain anonymous, Dr. Wilson said. They did not respond to a request for an interview with The New York Times that was passed on to them by the researchers.

Some of the patient’s mutated genes appeared to promote cancer growth. One probably made the cancer drug-resistant by enabling the tumor cells to pump chemotherapy drugs right out of the cell before they could do their work. The other mutated genes seemed to be tumor suppressors, the body’s natural defense against dangerous genetic mistakes.

“Their job is surveillance,” Dr. Wilson said. “If cells start to do something out of control, these genes are there to shut it down. When we find three or four suppressors inactivated, it’s almost like tumor has systematically started to knock out that surveillance mechanism. That makes it tougher to kill. It gets a little freaky. This is unscientific, but we say, gee, it looks like the tumor has a mind of its own, it knows what genes it has to take out to be successful. It’s amazing.”

It will take more research to determine exactly what the mutations do. Researchers would also like to know the order in which they occurred, and whether there was one that finally tipped the balance towards cancer.

“When this patient came to the cancer center and had a bone marrow biopsy, she already had 10 mutations,” Dr. Wilson said. “You’d love to know, if you had taken a bone marrow sample a year before, what would you have seen?”

Tests of 187 other patients with acute myelogenous leukemia found that none had the eight new mutations found in the first patient.

That finding suggests that many genetic detours can lead to the same awful destination, and that many more genomes must be studied, but it does not mean that every patient will need his or her own individual drug, Dr. Wilson said.

“Ultimately, one signal tells the cell to grow, grow, grow,” he said. “There has to be something in common. It’s that commonality we’ll find that will tell us what treatment will be the most powerful.”

    Scientists Decode Set of Cancer Genes, NYT, 6.11.2008, http://www.nytimes.com/2008/11/06/health/research/06cancer.html?hp

Letters

Fast-Track Treatments for Cancer

November 3, 2008
The New York Times

To the Editor:

“Quickly Vetted, Treatment Is Offered to Cancer Patients” (“The Evidence Gap” series, front page, Oct. 27) explores a profound issue in cancer therapy: development of new treatments versus safety and comfort of the status quo.

The proven method for progress in cancer therapy is the clinical trial. Unfortunately, less than 5 percent of new cancer patients in the United States enter clinical trials. If that number were to grow, knowledge regarding the efficacy and safety of new therapies would result in new treatments’ becoming available at a much faster pace.

Shalom Kalnicki

Bronx, Oct. 27, 2008

The writer, a medical doctor, is professor and chairman, department of radiation oncology, Montefiore Medical Center.

•

To the Editor:

In addition to knowing whether radiotherapies for breast cancer are effective, women also need to know that they are safe. But in choosing the right treatment, questions of relative safety are often overlooked, as they are in this article, which doesn’t address the consequences of radiation exposure associated with each alternative.

The effects of radiation delivered by external beams are not the same as those delivered by radioactive seeds. The doses, frequency and duration of exposure are, in fact, different in each of the cases reviewed here.

Which type of treatment puts women at greater risk for damaging side effects or long-term consequences? And where are the studies that will give us the answers to these questions?

Ellen Leopold

Cambridge, Mass., Oct. 27, 2008

The writer is the author of a book about radiation and cancer.

•

To the Editor:

Your article about the MammoSite balloon highlights the urgent need to align financial incentives with the evidence for new medical technologies. Compensation should be driven by evidence of effectiveness rather than by innovation.

If companies expected that a high level of clinical evidence would be required for coverage of an innovative technology, the time and expense of such studies would become an integral part of their business plan.

The MammoSite device possesses great potential to improve the treatment of women suffering from breast cancer by increasing the number electing breast-conserving surgeries and dramatically shortening the duration of radiation therapy. But the published five-year data for MammoSite are sparse, consisting of 43 women, six years after its approval by the Food and Drug Administration and use in more than 45,000 Americans.

We must not allow the promise of potential benefit to trump the basic requirement for solid evidence.

Jeffrey A. Tice

San Francisco, Oct. 27, 2008

The writer, a medical doctor, is an assistant professor of medicine at the University of California, San Francisco, and a consultant to the California Technology Assessment Forum.

To the Editor:

Your article highlights a fast-track system whereby the Food and Drug Administration clears most medical devices simply by declaring them equivalent to existing devices, rather than by direct proof of their effectiveness. In fact, the MammoSite system, a Class II device, is not the most egregious example of this phenomenon.

There are a number of more complex, typically higher-risk Class III devices (including some heart bypass machines and pacemakers) that have gained F.D.A. clearance through the same fast-track process detailed in the article.

This practice violates a statutory deadline requiring the F.D.A. to phase out the fast-track approval process for these highest-risk devices by the end of 1995. In the meantime, the companies producing these products continue to avail themselves of the fast-track system, at potentially great risk to public health. Jonas Hines

Eunice Yu

Peter Lurie

Washington, Oct. 28, 2008

The writers are on the staff of Public Citizen.

    Fast-Track Treatments for Cancer, NYT, 3.11.2008, http://www.nytimes.com/2008/11/03/opinion/l03cancer.html

The Evidence Gap

Quickly Vetted, Treatment Is Offered to Patients

October 27, 2008
The New York Times
By REED ABELSON

After a surgeon removed a cancerous lump from Karen Medlock’s breast in November, he recommended radiation, a routine next step meant to keep cancer from recurring.

But he did not send her for the kind of radiation most women have received for decades.

Instead, the surgeon referred her to a center in Oakland, Calif., specializing in a newer form of treatment where radioactive “seeds” are inserted in the tumor site. It could be completed in only five days instead of the six weeks typically required for conventional treatment, which irradiates the entire breast using external beams.

To Ms. Medlock, it seemed an obvious choice. The newer treatment — given through a system called MammoSite — has been performed on about 45,000 breast cancer patients in this country since the Food and Drug Administration cleared it for use in 2002.

Only when Ms. Medlock, 49, sought a second opinion did she learn a startling truth: MammoSite is still highly experimental.

The MammoSite system is among the thousands of devices the F.D.A. lets onto the market each year after only cursory review and with no clear evidence that they help patients. Doctors are free to use those products as they see fit, without telling patients that the devices are not proved. And because the doctors are frequently paid more by Medicare as a way to compensate them for the extra time and expense of adopting new procedures, these unproven products can become widely adopted.

F.D.A. officials defend the quick-review process as a way to promote innovation. Because most new products are simply an improvement on an existing device, they say, there is rarely need for a full review.

Demanding lengthy study of such devices would be “very, very inappropriate and a waste of resources,” said Dr. Daniel G. Schultz, the director of the F.D.A.’s Center for Devices and Radiological Health.

The agency let MammoSite on the market on the basis of a study involving only 25 women that did not answer the fundamental question of how effective it is against breast cancer. Six years later, many cancer specialists say there is still no conclusive proof that it works as well as conventional radiation. The F.D.A. says it did require a label warning that the system had not been shown to be a substitute for conventional radiation.

Dr. Valery Uhl, the radiation oncologist who provided Ms. Medlock’s second opinion, outlined the evidence behind the available treatments. Ms. Medlock chose conventional external-beam radiation because of its well-documented record of success in preventing the return of cancer. To use an unproven therapy like MammoSite, Dr. Uhl said, “makes me really nervous.”

Critics say the F.D.A.’s process for reviewing medical technology, under which medical devices have become a $75 billion-a-year industry in this country, is often too lax. More devices, they say, should get the same scrutiny applied to new drugs. While that process is not perfect, a new drug is typically studied in hundreds or even thousands of patients before the F.D.A. will approve it as safe and effective.

But under the fast-track review for most devices, a product’s effectiveness is never directly established. Regulators simply determine if the device does what its maker says it does — in MammoSite’s case, that it delivers radiation — and whether it poses any undue safety risks.

“Nobody is looking to see whether they help patients,” said Diane C. Robertson, an executive with the ECRI Institute, a nonprofit group in Plymouth Meeting, Pa., that evaluates new devices for insurers and hospitals. “We’re never going to wisely allocate resources in health care unless we start to focus on what’s best for patients.”

In response to a Congressional request to study the effectiveness of the F.D.A.’s device-review process, the nonpartisan Government Accountability Office is expected to release a report next month.

Critics say that when the F.D.A. clears a device, the public may wrongly assume that the government has proof it is medically effective. F.D.A. approval has been “widely misinterpreted,” said Dr. Jay R. Harris, the chairman of radiation oncology at the Dana-Farber Cancer Institute and Brigham and Women’s Hospital in Boston.

Differing Opinions

Dr. Dennis R. Hill, the doctor who originally saw Ms. Medlock, scoffs at the notion that MammoSite is in any way experimental. “It is a proven method,” he said. He said the oncologist who told Ms. Medlock it was experimental was skeptical because she provides only traditional radiation.

But the oncologist in question, Dr. Uhl, says she has performed many radioactive-seed treatments but wants to make sure patients are fully informed about the range of options.

Of the 250,000 women in this country who are found to have breast cancer each year, around 200,000 are candidates for radiation treatment if they choose to undergo a lumpectomy or partial removal of a breast. Most still get conventional radiation.

MammoSite proponents say that is because most doctors simply recommend the treatments they know best. “There is a natural bias for radiation oncologists to do what they have been doing,” said David Harding, an executive at Hologic Inc., the company in Bedford, Mass., that markets MammoSite.

Many prominent specialists, though, say the gold standard remains conventional radiation, for which breast cancer local recurrence rates are 3 percent or less at five years. Success in preventing cancer recurrence is measured in long intervals of 5 or 10 years or more, and there has been little long-term study of MammoSite.

Even a radiation oncologist who is a leading proponent of the MammoSite treatment, Dr. Frank A. Vicini, wants to know how it compares with traditional radiation. He is directing a national study of MammoSite’s effectiveness, but he cautions that it could take decades to conclude whether it should be used in lieu of conventional radiation.

“We have to make sure patients know we don’t have 30-year data,” said Dr. Vicini, the chief of oncological services for Beaumont Hospitals in Royal Oak, Mich. “We simply don’t.”
 

A System From the Past

The nation’s system for regulating medical devices was set up more than three decades ago, when devices played a much smaller role in medicine. A growing chorus of doctors, consumer advocates and health insurance executives say it is overdue for an overhaul.

The process has become “a barrier to evidence development,” said Dr. Winifred S. Hayes, whose firm, Hayes Inc., evaluates new health care technologies.

Although federal drug regulation dates back more than 100 years, medical devices did not come under the government’s purview until 1976, after Congress responded to deaths linked to the Dalkon Shield, an intrauterine contraceptive device.

Because the new law would not apply to devices on the market before 1976, Congress did not want makers of newer products to be at a competitive disadvantage. So lawmakers provided the quick review process for any new product deemed “substantially equivalent” to something already on the market. That expedited process became known as a 510(k) review under the relevant section of the law.

But critics say that what Congress intended as a way to let simple devices quickly enter the market has expanded so much that even critical therapies are cleared without enough research.

“It is supposed to be for the Band-aids of the world,” said Diana Zuckerman, president of the National Research Center for Women and Families, a Washington advocacy group. “The 510(k) process should have been used less and less. It’s being used more.”

But defenders of the F.D.A. process, including the officials in charge of it, argue that tighter gatekeeping could deprive patients of promising alternatives. And they contend that most new medical devices introduced each year involve minor modifications to mundane items like thermometers.

To be sure, sophisticated devices like a new artificial hip or a novel heart stent do go through the same evidence-based scrutiny given to new drugs. Of the 41 medical devices that went through that full review last year and in which the F.D.A. reached a decision, 27 received approval.

But during those same 12 months, the F.D.A. reviewed 3,052 devices under the more cursory 510(k) process and cleared 2,640 of them. Critics, though, say MammoSite is significantly different from anything on the market.

On one level, MammoSite was simply the latest version of brachytherapy, a technique that delivers radiation inside the body through seeds. Brachytherapy is widely used to treat prostate cancer because it allows high doses of radiation to be directed to a small area.

MammoSite was developed as a way to deliver brachytherapy for breast cancer, but more simply. For example, earlier versions of brachytherapy required multiple catheters.

With MammoSite, a surgeon inserts a single balloon catheter in the cavity from which the tumor has been removed. The catheter remains in place during the five days that radioactive seeds are inserted into the balloon, twice a day, using a computer-controlled system. After the treatments, the catheter and the balloon are removed, and there is no remaining radiation.

The main “substantially equivalent” product that MammoSite’s maker cited in its F.D.A. application was something called GliaSite, which itself reached the market in 2001 through a 510(k) review. Like MammoSite, it uses a catheter with a small balloon to deliver radiation.

But critics point out that GliaSite is aimed at a far different disease — advanced brain cancer — and it is often tried for patients who do not have the luxury of choosing another treatment. Hologic, which acquired MammoSite and was not involved in the original application process, declined to comment on the F.D.A. process.

The F.D.A. says MammoSite was hardly a radically new technology, because radiation is a standard therapy in treating breast cancer and brachytherapy is an established technique. F.D.A. officials also cite MammoSite’s label as evidence they have warned doctors the treatment is unproved.

“At the end of the day, doctors have to read what’s on the label and make a clinical decision,” Dr. Schultz said.

Still, critics of the 510(k) system point to the sometimes disastrous consequences of letting a device be widely used without adequate study.

Under a 510(k) review, for example, the F.D.A. in 1996 cleared Protegen, a synthetic sling implanted under a woman’s bladder to prevent stress incontinence. No clinical research was required to see how it would work, and Protegen was recalled in 1999 because of a high rate of complications.

Dr. Schultz, the F.D.A. official, said that even when using the fast-track review process, the agency always considers potential risks to patients.

Financial Factors

MammoSite’s proponents say its main advantage is that the shorter course of treatment and reduced exposure to radiation mean more women will consider radiation. Without some form of radiation, the alternative is complete removal of the breast through a mastectomy. Many women and doctors are persuaded by this argument.

But critics, say some of MammoSite’s popularity is a result of the relatively high reimbursements paid by insurers.

Surgeons traditionally do not play a role in a patient’s radiation therapy. But with MammoSite, they can earn several thousand dollars when they insert the balloon catheter that the radiologist uses to administer the radioactive seeds. That money, critics say, encourages some surgeons to recommend the treatment.

What’s more, Medicare initially set the total payments for MammoSite, including the surgeon’s fee, by one estimate at nearly $20,000 — almost twice the amount paid for conventional radiation. That was in keeping with Medicare’s practice of offering more generous payments for new treatments to encourage investment in equipment and training involved in a new procedure.

In keeping with Medicare’s practice, though, the payments have shrunk in recent years. Hologic says Medicare is expected to pay around $15,000 for the treatment next year, compared with $12,000 for conventional radiation. Commercial insurers typically follow Medicare’s lead on reimbursements.

In at least some cases, it is the patient who pushes for MammoSite. After Ida Daugherty, 59, was found to have breast cancer last May, a doctor advised her to consider the MammoSite treatment after her operation. But the specialist she consulted advised against it, telling her, “I don’t feel the results are in.”

After Ms. Daugherty looked at the available research, though, she chose to get MammoSite treatments in July at Beaumont, where Dr. Vicini works.

“I really didn’t want to do six weeks,” Ms. Daugherty said. She worried that the radiation might weaken her bones enough to cause a broken rib — a possible side effect.

Weighing Evidence

The debate now among cancer specialists is whether there is enough evidence to feel comfortable recommending the treatment to women who are not part of a clinical study.

In its marketing materials, Hologic refers to five-year data indicating that women seem to do as well with MammoSite as with conventional therapy. But the cited study involved only 43 patients enrolled in the first clinical trial of the device, 25 of whom were included in the evidence provided the F.D.A.

“We all know there is no sufficient evidence to offer it outside a trial because no one knows whether it is equivalent,” said Dr. Silvia Formenti, the chairwoman of radiation oncology at New York University Medical Center.

Dr. Formenti is wary of pushing any new treatment too aggressively because she recalls another formerly popular breast cancer treatment: high-dose chemotherapy coupled with a bone marrow transplant. In the 1990s, tens of thousands of women with advanced breast cancer were subjected to the toxic effects of that treatment before discovering that it was no more effective than conventional therapies.

Other doctors see no need for further study of MammoSite, saying the practical evidence is already compelling.

“I’m a big believer and proponent and practitioner of brachytherapy,” said Dr. Bradley R. Prestidge, the chief executive of the Texas Cancer Clinic, in San Antonio, which says it has performed more than 600 MammoSite treatments, the most in the country.

Of those 600 patients, Dr. Prestidge said, only three women have had a cancer recurrence, a lower rate than in his patients with conventional radiation.

The clinical trial being led by Dr. Vicini of Beaumont is meant to provide more than anecdotal evidence. The study will look at different techniques, including MammoSite, in which radiation is delivered to only part of the breast. He says the goal is to study 4,300 patients and results are expected in 2015.

“Doing the right thing is collecting the data,” Dr. Vicini said.

    Quickly Vetted, Treatment Is Offered to Patients, NYT, 27.10.2008, http://www.nytimes.com/2008/10/27/health/policy/27device.html?ref=opinion

States forced to cut health coverage for poor

28.10.2008
USA Today
By Julie Appleby

Economic troubles are forcing states to scale back safety-net health-coverage programs — even as they brace for more residents who will need help paying for care.

Many cuts affect Medicaid, which pays for health coverage for 50 million low-income adults and children nationwide, including nearly half of all nursing home care. The joint federal-state program is a target because it consumes an average 17% of state budgets — the second-biggest chunk of spending in most states, right behind education.

"Medicaid programs across the U.S. are going to be severely damaged," says Kenneth Raske, president of the Greater New York Hospital Association. He expects some hospitals nationwide may drop services and some hospitals and nursing homes may lay off employees.

Among the cuts:

• Hawaii this month halted funding for a 7-month-old program aimed at covering all the state's uninsured children.

• South Carolina Gov. Mark Sanford must decide by Thursday whether to sign a budget that would slash $160 million in health care, including an 8.1% cut to Medicaid and a 10.8% cut to the Department of Mental Health. Programs to help autistic children, the elderly who need prescription drugs and low-income workers may be hit.

• California in July cut payments to hospitals 10% under its Medicaid program, Medi-Cal. It had planned to restore 5% in March, but Gov. Arnold Schwarzenegger has called an emergency legislative session Nov. 5 to deal with lower-than-expected revenues.

Health care is a likely target, says Jan Emerson of the California Hospital Association, who expects more hospitals to drop out of Medi-Cal if extra cuts occur. Less than half the state's hospitals currently contract with Medi-Cal. They treat Medi-Cal patients in their ERs, but then transfer them to other hospitals.

• Massachusetts this month cut $293 million from its Medicaid budget, including $40 million from the Cambridge Health Alliance for care it already provided to low-income residents. The alliance, which runs three hospitals and dozens of clinics, says that cut plus other state cuts could total an amount equal to the cost of 650 full-time employees — or 20% of its workforce. "We can't absorb that without some serious re-evaluation of what we do," spokesman Doug Bailey says. "Everything is on the table."

The cuts follow several years of strong budgets and state efforts to bring health coverage to more low-income adults and children.

"When the economy goes down, states have increased pressure (from more uninsured), yet have to curtail plans to broaden coverage," says Diane Rowland, executive vice president of the Kaiser Family Foundation, a non-partisan think tank.

For every 1% jump in unemployment, about 1 million more people enroll in Medicaid, the group found in September.

Lawmakers in at least 27 states are facing budget gaps just months after dealing with some of the largest shortfalls since the recession in 2001, reports the Center on Budget and Policy Priorities, a Washington think tank. States can only make Medicaid cuts that affect people covered under optional state programs, such as children whose families earn slightly more than federal guidelines require.

"We're expecting budget gaps for the rest of this year and into fiscal 2010 to be about $100 billion," says Elizabeth McNichol, a senior fellow at the center. "Health care gets hit hard when states have to cut back."

    States forced to cut health coverage for poor, UT, 28.10.2008, http://www.usatoday.com/news/health/2008-10-28-health-cuts_N.htm

Editorial

The Candidates’ Health Plans

October 28, 2008
The New York Times
 

The nation’s health care system is desperately in need of reform — as far too many Americans know from grim, personal experience. In this election, Barack Obama and John McCain are offering starkly different ideas for how to fix that system.

There is no shortage of problems:

¶ Some 45 million Americans lack health insurance, limiting their ability to get timely care.

¶ The costs of medical care and health insurance are rising much faster than household incomes, making it increasingly difficult for people to afford either.

¶ People can’t carry their insurance from one job to another, limiting their mobility. Outside the workplace, it is hard to find affordable insurance.

¶ Despite the wealth and technological prowess of this country, the quality of medical care often lags behind that available in other industrialized nations.

Both candidates have largely accepted the prevailing expert wisdom on ways to improve quality and lower health care costs over the long run, such as relying more on electronic medical records and better management of the chronically ill. But they have very different ideas on the best way to make insurance available and affordable for all Americans.

We believe that Mr. McCain’s plan, which relies on reshaping the tax code, is far too risky. It is likely to erode employer-provided group health insurance and push more people into purchasing their own insurance on the dysfunctional open market, where insurers often reject applicants with pre-existing conditions.

Mr. Obama has focused primarily on extending coverage to a big chunk of the 45 million uninsured Americans by expanding existing private and public programs with the help of federal subsidies and mandates. His boldest innovation would be a new federally regulated exchange where Americans not covered at work would be able to choose — as federal employees currently can — among a variety of private group policies. He would also create a new public program to compete with the private insurers.

Mr. Obama’s plan is a better start than Mr. McCain’s. But it is still not likely to help all Americans who need and deserve affordable, high-quality medical care.

As voters weigh their choice for next Tuesday’s election, we offer this detailed review of the two candidates’ plans.

THE MCCAIN PROPOSAL Mr. McCain’s main idea is to change the tax code so that workers would have to pay income taxes on the value of their employer’s contribution to their health insurance. In return, all Americans, whether currently insured or not, would receive a tax credit of $2,500 for an individual or $5,000 for a family to buy health insurance, either through their employer or on the open market.

Mr. Obama has derided this plan as giving tax credits with one hand and taking them away with the other. But the tax credits are initially so generous that a great majority of workers would end up ahead: their tax credit would exceed the tax they would have to pay on their employer-provided insurance.

They could stay in the same health plan at work and have extra money that could be applied to other health care costs. Or they could buy policies in the open market. As good as that sounds, a $5,000 credit would not go very far toward buying a typical $12,000 family policy but might well suffice for the young and healthy, who get preferable rates.

Mr. McCain correctly recognizes that there are disadvantages to linking insurance to jobs — as thousands of laid-off American workers already are discovering — and that there is an intrinsic inequity in the current tax code that favors those who have employer plans over those buying individual coverage.

The great danger is that Mr. McCain’s plan will fragment the sharing of risks and costs — the bedrock of any good insurance plan — by enticing young, healthy workers to bail out of their employers’ group policies to seek cheaper insurance on their own. Their older or less healthy colleagues would be left behind, which would drive up premiums at work. The rising costs could lead many companies to drop their health coverage entirely.

The proposal also offers little protection for older and sicker people forced to buy policies in the open market. Mr. McCain says the federal government would help underwrite high-risk pools like those operated by many states to cover such patients. But the subsidies his aides have talked about — some $7 billion to $10 billion a year — would fall far short of the amount needed.

Mr. McCain would loosen state regulations on insurers by allowing companies to sell across state lines. Some states require insurers to accept all applicants and provide specified standard benefits, and they limit the ability of companies to base premiums on health status. In the name of promoting competition, Mr. McCain’s plan would free companies from those terms. Anyone who lost insurance as a result would have to seek coverage through the high-risk pools.

THE OBAMA PLAN Mr. Obama would do far more than his opponent to address the nation’s shameful failure to provide health coverage for all citizens. He would require all parents to get coverage for their children and expand Medicaid and the State Children’s Health Insurance Program. He would also require large and midsize companies to offer health insurance to their workers or pay into a kitty to subsidize coverage elsewhere — a provision that Senator McCain castigates as a “fine” but that really is their fair share of the burden.

Mr. Obama says the government would provide subsidies to encourage small employers to offer coverage and to help low-income people buy insurance. This is not a government-run program — as Mr. McCain claims — but it does give the government a much bigger role than it now has by expanding public programs and creating a new national plan.

Mr. Obama would also greatly increase government regulation of the insurance industry. He would require insurance companies to take every applicant and meet a minimum standard of benefits, and he would prevent them from charging higher premiums based on an applicant’s health. Some states have similar requirements now and insurance companies still sell policies there.

COVERAGE Some experts estimate that the McCain plan would reduce the number of uninsured only modestly because millions of people would drop or lose employer coverage, and not many more than that would buy policies outside of work. The nonpartisan Tax Policy Center estimates that the McCain plan would lower the number of uninsured by a mere two million in 2018, out of a projected 67 million uninsured in that year. The Obama plan would cut the number by 34 million, the center says, but still leave nearly 33 million uninsured.

The McCain campaign makes an optimistic prediction that up to 30 million of the uninsured might take out policies using their tax credits. If so, those policies would probably be meager — with high deductibles, large co-payments and limited benefits — and unlikely to provide much help in a crisis.

COSTS Despite all the Republican warnings about high-spending Democrats, McCain’s plan could be a lot more expensive than Mr. Obama’s, at least in the early years, and possibly in the long term. This is because the generous tax credits would drain federal revenues faster than the tax on employer policies would replenish them.

The Tax Policy Center estimates that the McCain plan would cost the federal government $1.3 trillion over 10 years, and the Obama plan $1.6 trillion. Using different assumptions, the Lewin Group, a consulting firm, estimates that the McCain plan would increase federal spending by $2.05 trillion over 10 years, compared with $1.17 trillion for the Obama package.

Neither candidate has persuasively explained how he would pay for his plan. Mr. Obama says he would apply the money saved by rescinding Bush-era tax cuts for the wealthy and hoped-for savings from reforming the health care system, but there is considerable doubt those savings will materialize quickly.

Mr. McCain also counts on cost-containment measures but is mostly relying on market forces to reduce the cost of health insurance and health care. He expects that people who buy their own coverage will shop for cheaper policies and make more careful choices about what medical care they really need. Among the dangers is that chronically ill people may forgo needed treatments.

Mr. Obama’s plan is the better one because it would cover far more of the uninsured, spread risks and costs more equitably and result in more comprehensive coverage for most Americans. We fear Mr. McCain’s plan would jeopardize employer-based coverage without providing an adequate substitute. At a time when so many employers are reducing or dropping coverage, that is not a risk that the country can afford to take.

    The Candidates’ Health Plans, NYT, 28.10.2008, http://www.nytimes.com/2008/10/28/opinion/28tue1.html

Is surfing the Internet altering your brain?

Mon Oct 27, 2008
7:17am EDT
Reuters
By Belinda Goldsmith

CANBERRA (Reuters) - The Internet is not just changing the way people live but altering the way our brains work with a neuroscientist arguing this is an evolutionary change which will put the tech-savvy at the top of the new social order.

Gary Small, a neuroscientist at UCLA in California who specializes in brain function, has found through studies that Internet searching and text messaging has made brains more adept at filtering information and making snap decisions.

But while technology can accelerate learning and boost creativity it can have drawbacks as it can create Internet addicts whose only friends are virtual and has sparked a dramatic rise in Attention Deficit Disorder diagnoses.

Small, however, argues that the people who will come out on top in the next generation will be those with a mixture of technological and social skills.

"We're seeing an evolutionary change. The people in the next generation who are really going to have the edge are the ones who master the technological skills and also face-to-face skills," Small told Reuters in a telephone interview.

"They will know when the best response to an email or Instant Message is to talk rather than sit and continue to email."

In his newly released fourth book "iBrain: Surviving the Technological Alteration of the Modern Mind," Small looks at how technology has altered the way young minds develop, function and interpret information.

Small, the director of the Memory & Aging Research Center at the Semel Institute for Neuroscience & Human Behavior and the Center on Aging at UCLA, said the brain was very sensitive to the changes in the environment such as those brought by technology.

He said a study of 24 adults as they used the Web found that experienced Internet users showed double the activity in areas of the brain that control decision-making and complex reasoning as Internet beginners.

"The brain is very specialized in its circuitry and if you repeat mental tasks over and over it will strengthen certain neural circuits and ignore others," said Small.

"We are changing the environment. The average young person now spends nine hours a day exposing their brain to technology. Evolution is an advancement from moment to moment and what we are seeing is technology affecting our evolution."

Small said this multi-tasking could cause problems.

He said the tech-savvy generation, whom he calls "digital natives," are always scanning for the next bit of new information which can create stress and even damage neural networks.

"There is also the big problem of neglecting human contact skills and losing the ability to read emotional expressions and body language," he said.

"But you can take steps to address this. It means taking time to cut back on technology, like having a family dinner, to find a balance. It is important to understand how technology is affecting our lives and our brains and take control of it."

(Editing by Paul Casciato)

    Is surfing the Internet altering your brain?, R, 27.10.2008, http://www.reuters.com/article/technologyNews/idUSTRE49Q2YW20081027

On Health Plans, the Numbers Fly

October 22, 2008
The New York Times
By KEVIN SACK

Economics, it is said, is the dismal science. Anyone paying close attention to the campaign debate over the economics of health care might wonder about the science part.

As Senators Barack Obama and John McCain battle over how best to control spending and cover the uninsured, they are both filling their speeches, advertisements and debating points with authoritative-sounding statistics about the money they would save and the millions of Americans they would cover.

But the figures they cite are invariably the roughest of estimates, often derived by health economists with ideological leanings or financial conflicts. Over time, these forecasts have become so disparate and contradictory as to be almost meaningless.

How many of the country’s 45 million uninsured would gain coverage under Mr. McCain’s plan to reconfigure the tax treatment of health benefits?

Consultants paid by Mr. McCain concluded that his plan would cover 27.5 million of the uninsured. But four health economists who looked into the McCain plan at the urging of David Cutler, a health care adviser to Mr. Obama, reached a far different conclusion. They estimated in a peer-reviewed article in the journal Health Affairs that the number of uninsured would grow by 5 million after five years.

How much would it cost for Mr. Obama to offer subsidized health insurance to those with low incomes?

Last week, the Lewin Group, a consulting firm, projected the cost to taxpayers at $1.17 trillion over 10 years. That was about 27 percent lower than the $1.6 trillion estimated by the Tax Policy Center, a joint project of the Urban Institute and Brookings Institution. And it bore little similarity to a $6 trillion estimate — using a broader measurement — put forth by HSI Network, a Minnesota consulting group that was paid $50,000 by the McCain campaign to assess both plans.

The campaigns acknowledge that the numbers are “all over the map,” in the words of Jay Khosla, a McCain adviser. But that does not keep them from selectively highlighting the most favorable ones (as when Mr. Obama says his plan will cut insurance premiums by $2,500 per family, or when Mr. McCain says his tax changes will leave 95 percent of Americans with more money).

Even the economists behind the forecasts say it makes them uncomfortable to hear candidates assert their numbers as indisputable fact, as if stating Derek Jeter’s batting average. What they are modeling, they emphasize, is ultimately unknowable. And the transformational nature of both candidates’ health care plans means that they can only guess at the future behavior of consumers, employers and insurers.

“Every candidate should say that these numbers were produced by my experts and they’re my best estimates but they’re not exact,” said Roger D. Feldman, a health economist at the University of Minnesota who directed the HSI studies. “But the campaign trail is not the time for ‘on the one hand, on the other hand.’ It’s a system where you paint things in black and white.”

Dr. Feldman and other economists said politics and relationships did not sway their science. But they said estimates could vary widely because of the assumptions they must factor into their formulas. Often they are flying blind because the campaigns, aware that details make the fiercest enemies, do not provide critical variables. Mr. Obama, for instance, has steadfastly declined to say how he would penalize employers who do not offer health coverage, an important component of his plan.

The economists are often left to use small-scale studies to predict how the candidates’ policies might affect the cost of coverage or the willingness of employers to provide it.

“The uncertainty surrounding what will happen under these policies is huge,” said John F. Sheils, senior vice president of the Lewin Group.

Sherry A. Glied, a Columbia economist and a co-author of the Health Affairs article about the McCain plan, said, “We are estimating what would happen in a world we’ve never seen.”

The more radical the restructuring, the economists said, the more they must assume. And the more they must assume, the greater the chance that ideology may drive methodology.

“It’s garbage in, garbage out,” said Uwe E. Reinhardt, a health economist at Princeton. “Every econometric study is an effort in persuasion. I have to persuade the other guy that my assumptions are responsible. Depending on what I feed into the model, I get totally different answers.”

Katherine Baicker, a health economist at Harvard, said economists’ views about the mechanics of markets were often shaped by their politics, or vice versa. “Certainly people who work for the campaigns have a strong motivation to see things one way or another,” she said, “but even those not involved in campaigns still come to the table with their own prior beliefs.”

Both candidates are surrounded by advisers with extensive backgrounds in health economics, many of whom could be in line for administration jobs.

For Mr. McCain, there are Douglas Holtz-Eakin, a former Congressional Budget Office director; Stephen T. Parente of the University of Minnesota; Thomas P. Miller of the American Enterprise Institute; Gail Wilensky, a health adviser to the first President Bush; Grace-Marie Turner, president of the Galen Institute; and Mr. Khosla, a former Congressional aide.

Mr. Obama receives advice from Mr. Cutler, David Blumenthal and Jeffrey Liebman, all of Harvard; Stuart Altman of Brandeis; Austan Goolsby of the University of Chicago; Jeanne M. Lambrew of the University of Texas; three campaign aides, Heather Higginbottom, Jason Furman and Neera Tanden; and a Senate office staff member, Dora Hughes. Campaign insiders suspect that if Mr. Obama is elected, a significant health-related position may go to Tom Daschle, the former Senate majority leader and an early Obama endorser who recently published a book on the subject with help from Ms. Lambrew.

The conflicts that devalue economic estimates can be both political and financial.

Mr. Obama, for example, has been claiming in speeches and advertisements that Mr. McCain would cut $882 billion in Medicare benefits to pay for his health plan. The number came from the Center for American Progress Action Fund, a Democratic-leaning group with close ties to the Obama campaign (Ms. Lambrew is a fellow).

“Consider the source,” Mr. Holtz-Eakin urged reporters last Friday.

A week earlier, Mr. Holtz-Eakin issued a news release trumpeting the HSI Network analysis of the McCain plan as “an independent assessment.” He did not mention that the campaign had paid for it (an Aug. 27 payment for $50,000 shows up in Mr. McCain’s disclosure filings) or that Mr. Parente is one of the firm’s owners.

Dr. Feldman, whose work is highly regarded, described himself as an Obama supporter and contributor, but he said he preferred Mr. McCain’s health plan. Though he acknowledged that the McCain campaign’s sponsorship was “certainly a potential conflict,” he said he hoped the study might advance a worthy proposal. “I wouldn’t sign off on these things if I didn’t support them,” he said.

A number of economists said voters would be wise to simply tune out all of the competing numbers and focus instead on the philosophical underpinnings of the candidates’ plans. Indeed, Dr. Reinhardt offered voters the same instruction he delivers to his students, that economics as practiced in the political arena is often “just ideology marketed in the guise of science.”

“I give a lecture on whether you can trust economists, and I tell them no,” Dr. Reinhardt said. “I tell them that if at the end of the year I tell you the time of day and you trust me, I have failed.”

    On Health Plans, the Numbers Fly, NYT, 22.10.2008, http://www.nytimes.com/2008/10/22/us/politics/22health.html?hp

Some Cut Back on Prescription Drugs in Sour Economy

October 22, 2008
The New York Times
By STEPHANIE SAUL

For the first time in at least a decade, the nation’s consumers are trying to get by on fewer prescription drugs.

As people around the country respond to financial and economic hard times by juggling the cost of necessities like groceries and housing, drugs are sometimes having to wait.

“People are having to choose between gas, meals and medication,” said Dr. James King, the chairman of the American Academy of Family Physicians, a national professional group. He also runs his own family practice in rural Selmer, Tenn.

“I’ve seen patients today who said they stopped taking their Lipitor, their cholesterol-lowering medicine, because they can’t afford it,” Dr. King said one recent morning.

“I have patients who have stopped taking their osteoporosis medication.”

On Tuesday, the drug giant Pfizer, which makes Lipitor, the world’s top-selling prescription medicine, said United States sales of that drug were down 13 percent in the third quarter of this year.

Through August of this year, the number of all prescriptions dispensed in the United States was lower than in the first eight months of last year, according to a recent analysis of data from IMS Health, a research firm that tracks prescriptions.

Although other forces are also in play, like safety concerns over some previously popular drugs and the transition of some prescription medications to over-the-counter sales, many doctors and other experts say consumer belt-tightening is a big factor in the prescription downturn.

The trend, if it continues, could have potentially profound implications.

If enough people try to save money by forgoing drugs, controllable conditions could escalate into major medical problems. That could eventually raise the nation’s total health care bill and lower the nation’s standard of living.

Martin Schwarzenberger, a 56-year-old accounting manager for the Boys and Girls Clubs of Greater Kansas City, is stretching out his prescriptions. Mr. Schwarzenberger, who has Type 1 diabetes, is not cutting his insulin, but has started scrimping on a variety of other medications he takes, including Lipitor.

“Don’t tell my wife, but if I have 30 days’ worth of pills, I’ll usually stretch those out to 35 or 40 days,” he said. “You’re trying to keep a house over your head and use your money to pay all your bills.”

Although the overall decline in prescriptions in the IMS Health data was less than 1 percent, it was the first downturn after more than a decade of steady increases in prescriptions, as new drugs came on the market and the population aged.

From 1997 to 2007, the number of prescriptions filled had increased 72 percent, to 3.8 billion last year. In the same period, the average number of prescriptions filled by each person in this country increased from 8.9 a year in 1997 to 12.6 in 2007.

Dr. Timothy Anderson, a Sanford C. Bernstein & Company pharmaceutical analyst who analyzed the IMS data and first reported the prescription downturn last week, said the declining volume was “most likely tied to a worsening economic environment.”

In some cases, the cutbacks might not hurt, according to Gerard F. Anderson, a health policy expert at Johns Hopkins Bloomberg School of Public Health. “A lot of people think there there’s probably over-prescribing in the United States,” Mr. Anderson said.

But for other patients, he said, “the prescription drug is a lifesaver, and they really can’t afford to stop it.”

Dr. Thomas J. Weida, a family physician in Hershey, Pa., said one of his patients ended up in the hospital because he was unable to afford insulin.

Not everyone simply stops taking their drugs.

“They’ll split pills, take their pills every other day, do a lot of things without conferring with their doctors,” said Jack Hoadley, a health policy analyst at Georgetown University.

“We’ve had focus groups with various populations,” Mr. Hoadley said. “They’ll look at four or five prescriptions and say, ‘This is the one I can do without.’ They’re not going to stop their pain medication because they’ll feel bad if they don’t take that. They’ll stop their statin for cholesterol because they don’t feel any different whether they take that or not.”

Overall spending in the United States for prescription drugs is still the highest in the world, an estimated $286.5 billion last year. But that number makes up only about 10 percent of this country’s total health expenditures of $2.26 trillion.

Pharmaceutical companies have long been among those arguing that drugs are a cost-effective way to stave off other, higher medical costs.

The recent prescription cutbacks come even as the drug industry was already heading toward the “generic cliff,” as it is known — an approaching period when a number of blockbuster drugs are scheduled to lose patent protection. That will be 2011 for Lipitor.

Already, a migration to generic drugs means that 60 percent of prescriptions over all are filled by off-brand versions of drugs. But with money tight, even cheaper generic drugs may not always be affordable drugs.

Factors other than the economy that may also be at play in the prescription downturn include adverse publicity about some big-selling medications — like the cholesterol medications Zetia and Vytorin, marketed jointly by Merck and Schering-Plough. And sales of Zyrtec, a popular allergy medication, moved out of the prescription category earlier this year when Johnson & Johnson began selling it as an over-the-counter medication.

Diane M. Conmy, the director of market insights for IMS Health, said the drop in prescriptions might also be partly related to the higher out-of-pocket drug co-payments that insurers are asking consumers to pay.

“Some consumers are making decisions based on the fact that they are bearing more of the cost of medicines than they have in the past,” Ms. Conmy said.

The average co-payment for drugs on insurers’ “preferred” lists rose to $25 in 2007, from $15 in 2000, according to the Kaiser Family Foundation, a nonprofit health care research organization. And, of course, lots of people have no drug insurance at all. That includes the estimated 47 million people in the United States with no form of health coverage, but it is also true for some people who have medical insurance that does not include drug coverage — a number for which no good data may exist.

For older Americans, the addition of Medicare drug coverage in 2006 through the Part D program has meant that 90 percent of Medicare-age people now have drug insurance. And in the early going, Part D had helped stimulate growth in the nation’s overall number of prescriptions, as patients who previously had no coverage flocked to Part D.

But a potential coverage gap in each recipient’s benefit each year — the so-called Part D doughnut hole — means that many Medicare patients are without coverage for part of the year.

The recent IMS Health figures reveal that prescription volume declined in June, in July and again in August, mirroring studies from last year suggesting that prescription use begins dropping at about the time more Medicare beneficiaries begin entering the doughnut hole.

Under this year’s rules, the doughnut hole opens when a patient’s total drug costs have reached $2,510, which counts the portion paid by Medicare as well as the patient’s own out-of-pocket deductibles and co-payments.

The beneficiary must then absorb 100 percent of the costs for the next $3,216, until total drug costs for the year have reached $5,726, when Medicare coverage resumes.

Gloria Wofford, 76, of Pittsburgh, said she recently stopped taking Provigil, prescribed for her problem of falling asleep during the day, because she could no longer afford it after she entered the Medicare doughnut hole.

Her Provigil had been costing $1,695 every three months. “I have no idea who could do it,” she said. “There’s no way I could handle that.”

Without the medication, Ms. Wofford said, she falls asleep while sitting at her computer during the day but then cannot sleep during the night. Because she feels she has no choice, Ms. Wofford is paying out of pocket to continue taking an expensive diabetes medication that costs more than $500 every three months.

For some other people, the boundaries of when and where to cut back are less distinct.

Lori Stewart of Champaign, Ill., is trying to decide whether to discontinue her mother’s Alzheimer’s medications, which seem to have only marginal benefit.

“The medication is $182 a month,” said Ms. Stewart, who recently wrote about the dilemma on her personal blog.

“It’s been a very agonizing decision for me. It is literally one-fifth of her income.”

    Some Cut Back on Prescription Drugs in Sour Economy, NYT, 22.10.2008, http://www.nytimes.com/2008/10/22/business/22drug.html?hp

More Alzheimer’s Risk for Hispanics, Studies Find

October 21, 2008
The New York Times
By PAM BELLUCK

PHILADELPHIA — Antonio Vasquez was just 60 when Alzheimer’s disease derailed him.

He lost his job at a Queens bakery because he kept burning chocolate chip cookies, forgetting he had put them in the oven. Then he got lost going to job interviews, walking his neighborhood in circles.

Teresa Mojica of Philadelphia was 59 when she got Alzheimer’s, making her so argumentative and delusional that she sometimes hits her husband. And Ida J. Lawrence was 57 when she started misplacing things and making mistakes in her Boston dental school job.

Besides being young Alzheimer’s patients — most Americans who develop it are at least 65, and it becomes more common among people in their 70s or 80s — the three are Hispanic, a group that Alzheimer’s doctors are increasingly concerned about, and not just because it is the country’s largest, fastest-growing minority.

Studies suggest that many Hispanics may have more risk factors for developing dementia than other groups, and a significant number appear to be getting Alzheimer’s earlier. And surveys indicate that Latinos, less likely to see doctors because of financial and language barriers, more often mistake dementia symptoms for normal aging, delaying diagnosis.

“This is the tip of the iceberg of a huge public health challenge,” said Yanira L. Cruz, president of the National Hispanic Council on Aging. “We really need to do more research in this population to really understand why is it that we’re developing these conditions much earlier.”

It is not that Hispanics are more genetically predisposed to Alzheimer’s, say experts, who say the diversity of ethnicities that make up Hispanics or Latinos make a genetic explanation unlikely.

Rather, experts say several factors, many linked to low income or cultural dislocation, may put Hispanics at greater risk for dementia, including higher rates of diabetes, obesity, cardiovascular disease, stroke and possibly hypertension.

Less education may make Hispanic immigrants more vulnerable to those medical conditions and to dementia because scientists say education may increase the brain’s plasticity or ability to compensate for symptoms. And some researchers cite as risk factors stress from financial hardship or cultural adjustment.

The Alzheimer’s Association says that about 200,000 Latinos in the United States have Alzheimer’s, but that, by 2050, based on Census Bureau figures and a study of Alzheimer’s prevalence, the number could reach 1.3 million. (It predicts that the general population of Alzheimer’s patients will grow to 16 million by 2050, from 5 million now.)

“We are concerned that the Latino population may have the highest amount of risk factors and prevalence, in comparison to the other cultures,” said Maria Carrillo, the group’s director of medical and scientific relations.

In response, Alzheimer’s and Hispanic organizations have started health fairs and support groups. Some Alzheimer’s centers have opened clinics in Latino neighborhoods.

“There’s some taboos” about Alzheimer’s, said Liany Arroyo, director of the Institute for Hispanic Health at the National Council of La Raza, which surveyed Latinos. “Folks did not necessarily understand what it was.”

Antonia Lopez, who immigrated from Panama to Boston, showed symptoms at about 60, but it was 10 years before the family acknowledged it was Alzheimer’s, said her daughter, Carol Franklin.

“My mom was telling people, in her confusion, that I spanked her,” she said. “My brother believed that. He said to me at one point, ‘Don’t say that my mom has Alzheimer’s, because I believe it’s just part of being old.’ ”

Overwhelmingly, Hispanics with Alzheimer’s live with multigenerational families instead of in nursing homes. That support can be beneficial, experts say, but it severely stresses families.

When Maria Contreras, a Salvadoran immigrant, began wandering and hallucinating, her daughter, Teresa Navas, took her into her home in Silver Spring, Md. The strain on Ms. Navas and her children compelled her to place her mother in a nursing home, but when she kept getting sick, Ms. Navas took her home again and quit her job teaching Spanish.

“I have to be with her all the time,” she said. “Sometimes she doesn’t even know who I am.”

Mr. Vasquez’s daughter, Ana, 39, moved her parents to her Philadelphia home. She works at a neighborhood grocery and tells her sons, 6 and 11, “Watch out for your grandfather.”

Once, Mr. Vasquez was found hitchhiking on a major Philadelphia street. On a visit to the Bronx neighborhood where he had lived, he wandered away, leaving his family frenetically searching subway stations. “I was desperate, crying, especially when the night was coming,” said his wife, also named Ana.

Nine hours later, he appeared on their Philadelphia porch, having happened upon a bus to Philadelphia and given the driver a card with their address.

Scientists are searching for what sets Latinos apart. Dr. Rafael A. Lantigua, a professor of clinical medicine at Columbia University Medical School, said, “There’s no gene at this point that we can say this is just for Latinos.” Dr. Lantigua added that one gene that increased Alzheimer’s risk was less prevalent in Latinos than non-Hispanic whites.

Kala M. Mehta, an assistant professor in the geriatrics division at the University of California, San Francisco, analyzed autopsies from 3,000 Alzheimer’s patients, finding “similar neuropathology” among Latinos, whites and African-Americans.

And Mary Sano, director of the Alzheimer’s Disease Research Center at the Mount Sinai School of Medicine, found that different ethnic groups shared the most common behavioral symptoms, like repeating sentences and uncooperativeness.

But researchers say they have seen disparities in the timing of the illness and its severity when diagnosed.

Dr. Steven E. Arnold, director of the Penn Memory Center at the University of Pennsylvania, studied 2,000 white, African-American and Latino Alzheimer’s patients.

Dr. Arnold found that the Latinos, mostly low-income, poorly educated Puerto Ricans, many with diabetes, “have more depression,” and their scores on tests in Spanish measuring dementia averaged about 15 percent lower than African-Americans and about 30 percent lower than non-Hispanic whites. Latinos were on average about three-and-a-half years younger than non-Hispanic whites and about five years younger than African-Americans, he said.

Dr. Christopher M. Clark, director of the Center of Excellence for Research on Neurodegenerative Diseases at the University of Pennsylvania, studied the age at which 174 Alzheimer’s patients in California, New York and Pennsylvania first showed symptoms and found Spanish speakers were on average 6.8 years younger (about 67) than non-Hispanic whites, regardless of whether they were Mexican, Caribbean or South American. That Latinos are on average younger than other Americans accounted for a small part of the gap, but not most of it, Dr. Clark said.

Research is scant on the age of onset in Latinos remaining in their native homes, but Dr. Clark said patients in two clinics in Mexico and Puerto Rico did not show symptoms early.

Mary N. Haan, a University of Michigan epidemiologist heading the Sacramento Area Latino Study on Aging, studied 1,800 Mexican-Americans over 10 years and found greater likelihood of Alzheimer’s for those more “acculturated” to American society, based on a number of factors, including diet and social networks. Dr. Haan attributed that to higher stress from being “relatively poorer off” and “more socially isolated.”

Dr. Cruz, of the National Hispanic Council on Aging, said, “As you acculturate, you lose those protective factors linked to nutrition, physical activity, social support system, that come with you when you first arrive here.”

Dr. Haan found more acculturated people more prone to diabetes, and people with diabetes or obesity more likely to have Alzheimer’s. Researchers theorize that high insulin levels and poor cerebral blood flow can cause brain changes that accompany Alzheimer’s, said Dr. Jose A. Luchsinger, associate professor of medicine and epidemiology at Columbia University Medical Center.

Dr. Cruz said many Alzheimer’s risk factors “have to do with poor education,” which aggravates nutrition, financial status and health care.

Mrs. Mojica, from Puerto Rico, with five years of schooling, developed diabetes and hypertension after a hard life in a rundown row house, where she and her husband care for their 39-year-old mentally retarded son.

Not all Hispanics have medical or sociological risk factors.

Ida Lawrence, whose Alzheimer’s has made her hide money in socks and shower obsessively, attended high school in Honduras, learning English. Her husband, Robert, said he thought her dementia might be inherited, adding, “She’s been healthy except for the fact that she was coming down with this Alzheimer’s thing.”

Mr. Lawrence, who has prostate cancer, struggles to care for his wife, still only 63. “Everybody says to me, ‘Bob it’s going to get worse,’ ” he said.

Ms. Franklin finally moved her mother, Ms. Lopez, to a nursing home, where she cries and “doesn’t want nobody to touch her,” she said.

“It hurts me so much to see her like that,” Ms. Franklin said. “It’s like I can see her on one side of the mountain and say, that’s not my mom.”

    More Alzheimer’s Risk for Hispanics, Studies Find, NYT, 21.10.2008, http://www.nytimes.com/2008/10/21/us/21alzheimers.html?hp

Reaching an Autistic Teenager

October 19, 2008
The New York Times
By MELISSA FAY GREENE

On a typical Monday morning at an atypical high school, teenage boys yanked open the glass doors to the First Baptist Church of Decatur, Ga. Half-awake, iPod wires curling from their ears, their backpacks unbuckled and their jeans baggy, the guys headed for the elevator. Arriving at Morning Meeting in the third-floor conference room, Stephen, his face hidden under long black bangs, dropped into a chair, sprawled across the table and went back to sleep. The Community School, or T.C.S., is a small private school for teenage boys with autism or related disorders. Sleep disturbances are common in this student body of 10, so a boy’s staggering need for sleep is respected. Nick Boswell, a tall fellow with thick sideburns, arrived and began his usual pacing along the windows that overlook the church parking lot and baseball diamond. Edwick, with spiky brown hair and a few black whiskers, tumbled backward with a splat into a beanbag chair on the floor.

“O.K., guys, let’s talk about your spring schedules,” said Dave Nelson, the 45-year-old founding director. He wore a green polo shirt, cargo shorts and sneakers and had a buzz haircut and an open, suntanned face. After his son Graham, 19, was given a diagnosis of autism spectrum disorder (A.S.D.) as a young child, Nelson left the business world and went into teaching and clinical and counseling work. On that Monday, he was instantly interrupted.

“I had a very bad night!” Edwick yelled from the floor. “Nightmares all night!”

“What was disturbing you, Edwick?” Nelson asked.

“What do you think?” Edwick cried in exasperation. “It’s St. Patrick’s Day!”

“What’s upsetting about that?” Nelson asked.

Edwick dropped his shoulders to relay how tiring it was to have to explain every little thing. “Leprechauns,” he yelled.

“Oh,” Nelson said. “I thought maybe it was the tornado that hit downtown on Friday night.”

“No, not the tornado!” Edwick yelled.

Nick stopped pacing to comment: “Edwick’s not scared of tornados; he’s scared of leprechauns.” I burst out laughing and so did the faculty members, while Nelson seemed to relish the interruption rather than find it a hindrance to the morning routine. His hidden agenda was precisely to entertain outbursts like Edwick’s, while making room for a sardonic intelligence like Nick’s. No matter the stated purpose of Morning Meeting, the true purposes were always the same: conversation, debate, negotiation, compromise and the building of relationships. T.C.S.’s only serious admissions requirements are that a boy should have at least some functional language and that there’s a good chance he can become part of the “community” of the school name.

The group turned to registering for spring classes. In addition to biology, algebra 2/trigonometry, English literature and U.S. history, there were the electives: Dragon Lore, Comic Books, How to Shop for Bargains and the History of Snack Food. Past electives included All About Pirates, Spy Technology, Ping-Pong, Dog Obedience, Breaking World Records, Unusual Foods and Taking Things Apart. (“I just wish they’d come up with a second-quarter class, Putting the Things Back Together,” Nelson told me.)

“I knew it!” Edwick complained, mashing about on the beanbag chair. He was disappointed because no one picked the elective he’d proposed: the History of Meat.

What makes the Community School unusual is not its student body — plenty of schools around the country enroll teenagers with an autism spectrum disorder. But, like about only two dozen schools in the country, it employs a relatively new, creative and highly interactive teaching method known as D.I.R./Floortime, which is producing striking results among T.C.S.’s student body. (D.I.R. stands for developmental, individual differences, relationship-based approach.) The method is derived from the work of Stanley Greenspan, a child psychiatrist and professor of psychiatry, behavioral science and pediatrics at George Washington University, and his colleague Dr. Serena Wieder. D.I.R./Floortime can be effective with all kinds of children, whether they have developmental challenges or not. As applied by T.C.S., it is an approach that encourages students to develop their strengths and interests by working closely with one another and with their teachers. The goal for students is neurological progress through real-world engagement.

With the skyrocketing diagnoses of A.S.D.’s in recent years, parents and school systems are challenged as never before to find techniques to keep these teenagers engaged, productive and nondespairing. Boys with A.S.D. (they outnumber girls four to one) who were difficult to console, to teach, to restrain at age 4 or 8 can be nearly impossible for parents and teachers to manage and to steer at 14 and 18. While a 25-pound toddler’s tantrum is wearying, a 150-pound teenager’s tantrum is dangerous. Puberty and young adulthood take many of these young people unawares.

How best to serve this population remains a subject of debate, because autism is a “final common pathway” diagnosis, meaning children arrive here from different points of origin, are troubled by a wide variety of issues and respond to different strategies. “You meet one child with autism and, well, you’ve met one child with autism,” says Linda Brandenburg, the director of school autism services at the Kennedy Krieger Institute in Maryland. Given the wide range of expression in autism and related disorders, there is no one-size-fits-all intervention. “We now know that there are several different models that seem to work — some more behavioral, some more developmental, some more eclectic,” Dr. Fred R. Volkmar, director of the Yale Child Study Center, told me. “What we really need to be doing, what the law says, is design programs around the kids rather than force kids into a program.”

The vast majority of programs for autistic youth in the U.S. use an approach called Applied Behavior Analysis, in which teachers and therapists use well-established techniques of reward and punishment to shape a student’s actions toward goals like toilet training, learning vocabulary or completing a puzzle. A typical A.B.A. lesson rewards memorized responses, specific behaviors and compliance to external directives — “Pick up the fork, Jared.” An instructor may move the child’s arm, hand and fingers to model the desired behavior. The child is then rewarded — with praise, with hugs, with a treat — when he performs the act correctly. As the first method to work with profoundly self-absorbed children and to demonstrate that progress could be made, A.B.A. — which came to national prominence in the late 1980s — has been a lifesaver for countless families. Critics worry that the method focuses on modifying the symptoms rather than addressing the underlying disabilities, and many say they fear that A.B.A.-trained children often do not “generalize,” that is, take a behavior learned in one setting and apply it in another. A child may learn to make eye contact in response to “How are you?” and to reply, “Fine, how are you?” But such rote memorization does not give the child the intuition to know when a stranger is to be greeted warmly and when to be avoided, and it does not enable him to meet his grandmother with greater warmth than the grocer.

“All teachers and therapists use elements of behaviorism,” Nelson told me. “As an intervention for autism, the A.B.A. movement was one of the first to suggest how intensive the intervention has to be — maybe 40 hours a week — to see results. This notion of intensity has been valuable to everyone that followed.”

The Community School — with a teaching staff of 12 and a $25,000 tuition — employs the intensity but not the methodology of A.B.A. Rather than spend time on a student’s mastery of a skill preselected for him by an adult, the idea is to harness a student’s energy and desire to learn. As a student interacts with peers and teachers, solves problems and expresses his ideas, his behavior should naturally begin to lose its rough edges. The essence of Floortime is that a person learns best when self-motivated, when an inner drive sparks the acquisition of skills and knowledge.

As with A.B.A., achieving D.I.R./Floortime’s far-reaching goals for students requires intense interaction — a wooing of a child from his or her remove — for as many hours of the day as parents and teachers can physically sustain. Dr. Greenspan would like to see an autistic child productively interacting with an adult for most of his waking time, seven days a week. Those drained parents who have the means hire therapists and trained baby sitters to help them approximate that schedule, during either home-schooling days or out-of-school hours.

Because the goal of D.I.R./Floortime is the kindling of a student’s curiosity, intelligence, playfulness and energy, the lessons can take on a spontaneous, electric quality. I have seen sessions with young children during which the child and his or her therapist or parent tumbled across the house, behind the sofa, into closets or onto the porch, picking up balls, puppets, costumes, books and snacks along the way. At T.C.S., classes can look like debates between equals; school days can include board games, sports, plays, science experiments, music, art, ropes courses or rafting trips in which all students and teachers playfully compete, contribute and perform. All the boys at the school probably have average or better intelligence. Onlookers might call a few “high functioning” (though that adjective has no clinical meaning), and T.C.S. is an accredited high school and middle school, offering college prep and high-school courses to students able to complete a conventionally rigorous course of study. (Other students pursue less-demanding tracks oriented toward getting a G.E.D., attaining job skills or developing independent-living skills.) So it’s not all fun and social time. But rote learning is never the goal; the goal is that the students should be able to think, to feel, to communicate and to learn. Most of the kids are making the first friends of their lives here.

T.C.S. does not promise miracles. It does not promise to be a perfect fit for every teenager with an A.S.D. Dave Nelson does not invest great faith in the possibility of leaving the autism spectrum behind, no matter how much parents (like himself) would love to believe it. The breakthroughs at T.C.S. are subtle rather than headline-grabbing, noticeable at first only to the adults closest to the kids and to the students themselves. But for these families, any forward motion can inspire a moment of real hope and happiness, and quite remarkable progress happens every day.

Stephen, 17, a solidly built boy with a sweet face under a heavy thatch of bangs, entered T.C.S. in 2005 prone to blowups of alarming power. His parents adore their son and have been whipped about like sailboats by his furies. His first year at school, during group construction of an outdoor marble-run, a boy fumbled and a marble dropped. “I am going to assassinate him,” Stephen exploded. “I. Will. Behead. Him.” Stephen’s academics are top-notch, but the stance of the Community School is not to ignore a student’s psychological deficits while skipping ahead to schoolwork or life skills. It doesn’t matter that Stephen is at home with algebraic theorems if he is going to react like a toddler when ambushed by a mad or sad feeling.

Ty Martin, 14, is a cute and curly-haired guy who lives in terror of loud or strange noises. The faux thunderstorm in the produce aisles at the grocery store makes it difficult to take him shopping. A classmate’s coughing or a siren in the distance distracts him from schoolwork. His mother often was obliged to retreat to a windowless basement room at home, hugging and soothing her son when the outside world — especially lawn crews next door with leaf-blowers — overwhelmed him. “He doesn’t like crows,” Judy Martin told me last spring. “If crows are at a park, he’ll go from happy to berserk in five seconds. If we go to a restaurant, we’re all on edge, praying the bartender doesn’t turn on the blender.”

Sam Gross visited San Francisco with his mother two years ago at age 15. During a tour of Alcatraz, the handsome olive-skinned boy climbed a nearby fence and prepared to dive. Had his mother not spotted him and screamed, Sam would have been injured or killed by falling onto the rocks. But he was not trying to kill himself. He planned, as he explained in his monotone voice, to turn into a merman and swim back to the mainland.

Then he began to deteriorate. For two years, he spent every day in a ball under his blankets, rising only to pound either side of his head with such ferocity that two bald spots bloomed under his fists, then dangerously swelled. He had to be sedated to stop the self-battery. By the time Sam reached the Community School, he was nearly incommunicative. Whenever he began using his head like a punching bag, the teachers asked him to stop, and he did, but otherwise showed no sign that he heard them.

Students arrive at T.C.S. trailing long histories of school failure and humiliation, suspension, expulsion, truncated transcripts, social isolation, victimization, self-loathing, suicidal ideation or years of home-schooling patched together by mothers forced to leave their jobs. “On our first visit with Dave Nelson, Ty started screaming: ‘I hate this place! I want to leave right now!’ ” Judy Martin says. “Most principals don’t want to work with a kid like that. But what I saw on Dave Nelson’s face was ‘I can work with a kid like this.’ ”

Many prospective parents begin to weep during their intake interviews with Nelson. For them and their children, this place represents something of a last chance.

While there is no direct relationship between Dr. Stanley Greenspan and the nation’s D.I.R./Floortime schools, other than one of mutual respect, the theoretical underpinning of these schools relies on his argument that human intelligence itself is constructed out of the warm back-and-forth signaling between child and parent, beginning at birth. Jean Piaget located a child’s investigation of causality in the material world, for example, with experiments like pulling a string attached to a bell, but Greenspan and his colleague Serena Wieder see these insights occurring in the emotional realm, when a baby learns that his or her smile brings the parent’s smile. Brain development is not a solo pursuit but a rich and complex flowering that occurs only in the hothouse of human relationships.

What does this have to do with autism? A child born at risk of an A.S.D. has cognitive and sensitivity issues that inhibit engagement. Pleasures enjoyed by a typical baby can upset him: a mother’s face seems too close, so the infant cranes away; the father’s tickles may produce fear reflexes rather than laughter. Meanwhile the sunlight is burning his eyes, the diaper scrapes his skin and the baby begins avoiding interaction with people at the cost of normal brain development.

I begin to picture the brain metaphorically as a tangled ball of Christmas lights. When you plug it in, there are strands that light up perfectly and there are dark zones where a single burned-out bulb has caused a line to go out. If the bulb for Exchanging-Smiles-With-Mother doesn’t light up, then Empathy won’t be kindled farther along the strand, or Playfulness, or Theory of Mind (the insight that other people have different thoughts from yours). The electrical current won’t reach the social-skill set, the communication skills, creativity, humor or abstract thinking.

According to the D.I.R. perspective, emotion is the power source that lights up the neural switchboard. D.I.R./Floortime’s goal is to connect autistic students with other people as a way of fueling their cognitive potential and giving them access to their own feelings, desires and insights. The latest findings in the field of neuroplasticity support D.I.R.’s faith in the capacity of the human brain to recoup and to compensate for injury and illness. “Early intervention is optimal,” Dr. Greenspan told me, “but it’s never too late. The areas of the brain that regulate emotions, that sequence ideas and actions and that influence abstract thinking keep growing into a person’s 50s and 60s.”

T.C.S. students are masters of withdrawal, and for the D.I.R. model to work, each student must be an active partner in his own education. But how do you ignite the enthusiasm of an autistic teenager who has long since walled himself off from the outside world; who uses little language or who screeches in random yelps or vulgarities; who flips out when pried away from his computer game; who speaks to you, if at all, in long monologues on arcane subjects with zero interest in your response? What do you use as a staging ground for a relationship with an increasingly furious and despairing adolescent?

The Floortime technique might be summed up as: “Follow the child’s lead and challenge the child.” It is most easily visible on the videotapes documenting Dr. Greenspan’s 25 years of clinical work with younger children. In each video, the gangly psychiatrist crouches on the floor of his comfortably shabby home office in Bethesda, calling instructions to parents about how to catch the attention of and interact with their remote-seeming children. “I treat everything the child does as having a reason — to feel calmer, for example, or to feel excited,” Dr. Greenspan told me. “Often the parents have notions of what the child should be doing, so they’re trying to control the child rather than build on the child’s natural interests.”

In my favorite video, a 30-something husband and wife flank their 4-year-old daughter; the husband, in round horn-rim glasses, sits forward on the sofa; his wife curls up on the floor nearby. Their daughter, with chopped-off blond hair and a doughy face, looks to me like Helen Keller, pre-Anne Sullivan. Seeming almost blind, deaf, mute and mentally retarded, she bounces from sofa to table to wall. She is without affect, her movements ungainly and her eyes unfocused. She makes slurping sounds, as if she has reached the bottom of a drink with a straw. “We’re going to try to get a continuous flow of back-and-forth going here,” Dr. Greenspan says.

The mother smiles sadly, knowingly. “That would be nice,” she says.

“We’re going to build on what she does,” the doctor says.

The girl is flapping a plastic toy in her hand. “Will she give it to Daddy?” Dr. Greenspan asks.

“Can I see that?” the father asks as the child roams the room. The child seems not to hear him. But then the girl, traveling by, indifferently drops the toy into his outstretched hand. Delighted, the father says: “There’s a star on it! And there’s a triangle!”

“Here you’re losing her, Daddy,” Dr. Greenspan says, and sure enough, the girl escapes and heads for a wall. “If you’re trying to educate her with complicated language that she’s not processing, then you’re going to lose her. You want to change your orientation from educating her to interacting with her.”

The child picks up a bright plastic flowered eyeglass case off a table and twiddles it. “See if she’ll give it to you,” the doctor prompts.

“Can you give it to Mommy?” the mother asks, and surprising everyone, the girl hands it over. “Thank you!” the mother says.

The mother hides the eyeglass case behind her on the floor. The girl treads in place for a moment, swinging her arms and slurping. She begins to laugh a strange, heaving laugh. “Huh-huh-huh!” The mother moves a little to show that she’s sitting on the eyeglass case, and the child dives for it.

“Good, good!” Dr. Greenspan cheers.

“Can I have it back?” the mother asks. The mother hides it inside her own sweater, half-exposed.

“Let her get it! Let her get it! Let her get it!” Dr. Greenspan says in excitement. It is of paramount importance to him that the child initiates her own ideas and motor plans. Every time her parents start to physically turn or steer her, he stops them, crying: “Let her do it! Let her do it!”

The mother next slips the eyeglass case into the bib of her daughter’s pink overalls, and the girl stops in her tracks. Dr. Greenspan is prepared to leap over furniture to block the parents from giving her a clue. Suddenly, slowly, the girl’s gaze drops. . . . She finds the eyeglass case! In her own pants! “Ooh! Ooh! Ooh! Ooh!” she says.

“Make it more complicated!” the psychiatrist pleads.

“Can we go give it to Daddy?” the mother asks.

The mother walks over to the father, who hides the eyeglass case in his shirt. The girl freezes in confusion. The psychiatrist loves a moment like this and tries to prolong it. He sees momentary frustration as a vitally creative occasion. He urges parents to be “playfully obstructive.” He’s not after results; he wants to see a child thinking. “She can do this,” he advises them.

The girl slowly looks down, plucking at her overalls. For a moment it seems they have lost her. But — no — she’s looking inside the bib, where she last found the eyeglass case. It’s not there. Again she freezes. She must be thinking, “Mommy went to Daddy. . . . ” Slowly she turns toward her father.

The expression on the father’s face, when his daughter plucks the eyeglass case from his shirt, is of heartbreaking gratitude. A moment later, he pitches the eyeglass case over her head to his wife. The girl turns and beholds her beaming mother holding the eyeglass case. “Ooh! Ooh! Ooh!” she says. Mom pitches the case back to Dad, and when the child turns to run to her father, she skips in her delight, her face radiant, making a hoarse sound of laughter.

Children with autism — especially Asperger’s — are famous for all-consuming interests in Matchbox cars, bus maps, train schedules, oscillating fans, Civil War battles, baseball statistics, black holes, dinosaurs, chess or Star Wars. While most programs try to discourage these obsessions, D.I.R./Floortime argues that they can offer openings into relationships. Does this work? Parents of T.C.S. students say that it does. Most speak in glowing terms about the school’s lifesaving impact on their families. Outside experts are more cautious, reluctant to give any one approach a gold medal when there are so many variables, including the profiles of the students admitted to T.C.S. in the first place. “Stanley Greenspan is an engaged and enthusiastic clinician,” Dr. Volkmar says. “People are attracted to Floortime because it is respectful of the child and the child’s wishes. He wants to follow the child’s lead. I would imagine that more able children do produce leads that are worth following — I’ve seen kids with Asperger’s do well in Montessori programs too — but what if the child isn’t doing much that you’d want to follow? I wonder if following the lead of a child who’s doing nothing but body rocking results in a roomful of people all body rocking with him.”

Dave Nelson says: “T.C.S. is a school, so I’d argue that our success should be measured by how well we educate our students. The boys have far better attendance rates than at their previous schools. They have far better emotional regulation — many could not attend school before due to their outbursts; while here, emotional regulation is core curriculum. Many were depressed to the point of suicidal ideation at their previous schools; that’s not happening here. Some were victims of bullying, some were aggressors at their previous schools; not here. All our parents report that their children are functioning better, are happier and are better communicators, thinkers and learners.”

Judy Martin says: “My son Ty’s progress has been monumental. He doesn’t cry in dark basements anymore. He isn’t entirely focused on himself; he is learning real empathy. He never liked school, and now he loves it. Every day this past summer he asked me when he could be with Dave Nelson. This is a child who never cared about teachers or friends. Now he tells me he loves them. I chatted with Stephen the other day by the vending machine as his money got stuck. He was problem-solving rather than blowing up. We rode the elevator together, chatting about the problem, while he decided to go find a teacher to help him.”

One morning at school, the fire alarm went off. My first thought — like everyone’s — was, Oh, my God —Ty! We descended the stairs to the parking lot. Ty was within a circle of T.C.S. teachers. “It was Elana!” he yelled to everyone about one of the teachers, who had been trying to prepare a snack for her class. “Elana burnt the popcorn in the microwave!” Poor Elana Himmelfarb, covering her face, not knowing whether to laugh or cry, said again and again, “I am just so, so, so, so sorry, Ty.”

He was trying to forgive her, but he kept asking, “Elana, why did you make the fire alarm go off?” His face was red, his curls were plastered back with perspiration and he was rocking a bit, long after the alarm had been silenced. Back upstairs, when the smoke cleared, Ty huddled in a beanbag chair with Rebecca Richter, one of the teachers, beside him.

“I hate that noise,” Ty said. “That’s a bad noise. That has a witch’s voice.”

“You really didn’t like that noise,” she agreed.

“This can NEVER HAPPEN AGAIN,” he sobbed, demanding that Rebecca promise him. “This will never happen again, will it? This can never happen!

“I need you to call my mom,” he said, weeping. “I’m having a very bad day. Will you call my mom? I need her to come get me.” I imagine a region of Ty’s brain blinking hard, a fistful of tiny red lights setting one another off: Panic! Panic!

“If we can keep Ty engaged with us, it means that he is harnessing and organizing his energies in order to interact,” Nelson told me later. “By keeping him connected, we won’t let him be kidnapped by random fragmented thoughts. If you aren’t engaged with other people, then you are completely at the mercy of your own regulatory system. Think about a situation where you were overcome with distress and how being able to tell someone helped you avoid becoming uncontrollably distraught.”

Gently Richter moved Ty from unreality (“the witch’s voice”) onto solid ground (“I’m having a bad day”). Given the tools to hang on, Ty survived until the end of the school day. And the breakthroughs continued. “When Ty came home that day, we talked through the events, as the school has trained me to lovingly do,” Judy Martin told me recently, “and Ty said, ‘Mom, I feel bad for Elana, because she didn’t mean to do it.’

“ ‘Do you think she felt embarrassed?’ I asked him, and he said yes. This moment was huge: Ty has always struggled with seeing the viewpoint of others, and here he was able to take a moment that frightened him and look at it from Elana’s viewpoint. We go to restaurants all the time now, and Ty couldn’t care less about the blenders. Lawn crews arrive next door, and they don’t faze him.”

When Sam Gross, now 17, arrived at T.C.S., he tripped along down the hall on the balls of his feet, rolling his head, thrumming on his chest with his fingers, humming to himself, lost in other worlds. The only points of entry he offered were during serious flights of fancy. “What this school needs,” he murmured in his low, resonant voice one day to a teacher, Lucie Canfield, “is a magic cabinet.”

“What would it do, Sam?” Lucie asked, delighted.

After a long pause he said, “Turn Sam into Samantha.” Sam wanted to travel back in time, he explained, to when he was a little girl; then he changed his mind and wanted to use it for teleporting.

Sam’s parents and his psychiatrist were initially less than enthusiastic about the magic cabinet: “Let’s not get started with this stuff here,” they said. But Lucie had already asked Sam, “What would a magic cabinet look like?”

Sam had replied: “Cow-colored.”

Lucie pushed poster board and colored pencils at Sam and said, “Show me.”

Dave Nelson agreed. This was the clearest opening they’d had from Sam Gross. Everything Nelson knew about Floortime told him to follow the boy’s lead. “Let’s see where this goes,” he told Sam’s parents.

Sam finished several quite beautiful drawings of a tall, rectangular closet. It would have a blue curtain and a bell stand on top, with a chain he would pull when he was finished transforming or teleporting. Nelson brought in a refrigerator box, and Lucie and Sam painted it in a nice Holstein pattern of black on white. “We made a point of always saying to Sam not that we were building a magic cabinet, but that we would pretend with him,” Lucie tells me. “I explained that magicians used tricks to make people think they disappeared.” T.C.S. would facilitate this exploration, with Sam, of the frontier of fantasy, with the expectation that he would encounter some reality along the way.

The special day arrived, and Sam stepped into the cabinet and drew the curtain. Dave waved a magic wand and read words Sam had written: “Abracadabra-a-whirl. Let Sam turn into a girl.”

There was silence inside the box. Then Sam called, “Do it again!” Dave chanted the words again. Silence. Then: “Let Lucie do it!” The teacher took the wand and gave it a try.

Sam peeked out, still male. “This is not the right cabinet for turning into a girl,” he said in consternation. “This is the cabinet that turns you into Paul McCartney.” He exited. At home that night, Sam looked up magicians in the Yellow Pages and booked one to come to school the next day. Dave Nelson canceled. It was time for reality to intervene.

Back at school, Sam spent the week focusing on how to teleport out of the cabinet to surprise folks in the cafeteria on the ground floor. Then one day he made an unusual request of Lucie Canfield: he needed help cutting a back door in the box that would allow him to slip away like a stage magician. It was a striking and brave acknowledgment of the material world.

Sam never staged his trick, as it was real magic that excited him. And he muttered, over the next few weeks, seditious thoughts along the lines of, What kind of school is this that doesn’t provide a real magician? The Magic Cabinet still stands in the art room, bell-towered and cow-colored. Many of the students enjoy stepping behind the blue curtain now and then for a moment of quiet remove from the world or to prepare to burst back upon the room in an assumed role. “It’s expanded from a product of Sam’s fantastic imagination to something of real purpose,” Judy Martin told me. “Kids peek out their heads as characters from books they’ve been reading, changing their voices and facial expressions.” The Magic Cabinet has come to stand for what the Community School offers these students: the possibility of transformation.
 

Melissa Fay Greene is the author of “There Is No Me Without You: One Woman’s Odyssey to Rescue Her Country’s Children.”

    Reaching an Autistic Teenager, NYT, 19.10.2008, http://www.nytimes.com/2008/10/19/magazine/19Autism-t.html?hp

Abortion Rights on the Ballot, Again

October 13, 2008
The New York Times
 

Once again this year, opponents of women’s reproductive rights have managed to get initiatives aimed at ending or limiting abortion rights on ballots — in South Dakota, Colorado and California. These measures, which violate women’s privacy and threaten their health, have implications far beyond those states. If voters approve them, they will become a weapon in the right-wing campaign to overturn Roe v Wade.

The South Dakota initiative is a near twin of the sweeping abortion ban handily rejected by South Dakota voters just two years ago. To make the ban seem less harsh, its backers have included language purporting to make exceptions for incest, rape or the life and health of the mother. But no one should be fooled. The exceptions were drafted to make it nearly impossible to get an abortion, even during the first trimester of pregnancy.

The measure is clearly unconstitutional under existing Supreme Court rulings, and that’s just the point. The underlying agenda is to provide a vehicle for challenging Roe v. Wade, the 1973 decision that legalized abortion.

The Colorado ballot proposal attacks Roe v. Wade by a different route. Known as Amendment 48, this preposterous measure would redefine the term “person” in the state’s Constitution to include fertilized human eggs — in effect bestowing on fertilized eggs, prior to implantation in the womb and pregnancy, the same legal rights and protections that apply to people once they are born.

The amendment, which has split anti-abortion groups, carries broad implications, ranging from harmful to downright ridiculous. Potentially, it could ban widely used forms of contraception, curtail medical research involving embryos, criminalize necessary medical care and shutter fertility clinics. A damaged fertilized egg might be eligible for monetary damages.

Noting the “legal nightmare” the amendment would create, and its potential to endanger the health of women, Gov. Bill Ritter, a self-described “pro-life” Democrat, has joined the opposition to Amendment 48.

In California, meanwhile, abortion opponents have put the issue of parental notification on the ballot for the third time in four years. The proponents of Proposition 4 say mandating notification is necessary to safeguard underage girls. But most 15-year-olds who find themselves pregnant instinctively turn to a parent for support and guidance. Far from protecting vulnerable teens, Proposition 4 would make it difficult for young women caught in abusive situations to obtain an abortion without notifying their parents, even in cases where the father or stepfather is responsible for the pregnancy.

If approved, Proposition 4 would inevitably drive some to attempt a self-induced abortion or to seek the procedure later in pregnancy. California voters were right to reject this damaging approach on the first two attempts. They should do so again.

    Abortion Rights on the Ballot, Again, NYT, 13.10.2008, http://www.nytimes.com/2008/10/13/opinion/13mon1.html

Bailout Provides More Mental Health Coverage

October 6, 2008
The New York Times
By ROBERT PEAR

WASHINGTON — More than one-third of all Americans will soon receive better insurance coverage for mental health treatments because of a new law that, for the first time, requires equal coverage of mental and physical illnesses.

The requirement, included in the economic bailout bill that President Bush signed on Friday, is the result of 12 years of passionate advocacy by friends and relatives of people with mental illness and addiction disorders. They described the new law as a milestone in the quest for civil rights, an effort to end insurance discrimination and to reduce the stigma of mental illness.

Most employers and group health plans provide less coverage for mental health care than for the treatment of physical conditions like cancer, heart disease or broken bones. They will need to adjust their benefits to comply with the new law, which requires equivalence, or parity, in the coverage.

For decades, insurers have set higher co-payments and deductibles and stricter limits on treatment for addiction and mental illnesses.

By wiping away such restrictions, doctors said, the new law will make it easier for people to obtain treatment for a wide range of conditions, including depression, autism, schizophrenia, eating disorders and alcohol and drug abuse.

Frank B. McArdle, a health policy expert at Hewitt Associates, a benefits consulting firm, said the law would force sweeping changes in the workplace.

“A large majority of health plans currently have limits on hospital inpatient days and outpatient visits for mental health treatments, but not for other treatments,” Mr. McArdle said. “They will have to change their plan design.”

Federal officials said the law would improve coverage for 113 million people, including 82 million in employer-sponsored plans that are not subject to state regulation. The effective date, for most health plans, will be Jan. 1, 2010.

The Congressional Budget Office estimates that the new requirement will increase premiums by an average of about two-tenths of 1 percent. Businesses with 50 or fewer employees are exempt.

The goal of mental health parity once seemed politically unrealistic but gained widespread support for several reasons:

¶Researchers have found biological causes and effective treatments for numerous mental illnesses.

¶A number of companies now specialize in managing mental health benefits, making the costs to insurers and employers more affordable. The law allows these companies to continue managing benefits.

¶Employers have found that productivity tends to increase after workers are treated for mental illnesses and drug or alcohol dependence. Such treatments can reduce the number of lost work days.

¶The stigma of mental illness may have faded as people see members of the armed forces returning from Iraq and Afghanistan with serious mental problems.

¶Parity has proved workable when tried at the state level and in the health insurance program for federal employees, including members of Congress.

Dr. Steven E. Hyman, a former director of the National Institute of Mental Health, said it was impossible to justify insurance discrimination when an overwhelming body of scientific evidence showed that “mental illnesses represent real diseases of the brain.”

“Genetic mutations and unlucky combinations of normal genes contribute to the risk of autism and schizophrenia,” Dr. Hyman said. “There is also strong evidence that people with schizophrenia have thinning of the gray matter in parts of the brain that permit us to control our thoughts and behavior.”

The drive for mental health parity was led by Senator Pete V. Domenici, Republican of New Mexico, who has a daughter with schizophrenia, and Senator Paul Wellstone, the Minnesota Democrat who was killed in a plane crash in 2002. Mr. Wellstone had a brother with severe mental illness.

Prominent members of both parties, including Betty Ford, Rosalynn Carter and Tipper Gore, pleaded with Congress to pass the legislation.

Representatives Patrick J. Kennedy, Democrat of Rhode Island, and Jim Ramstad, Republican of Minnesota, led the fight in the House. Mr. Kennedy has been treated for depression and, by his own account, became “the public face of alcoholism and addiction” after a car crash on Capitol Hill in 2006. Mr. Ramstad traces his zeal to the day in 1981 when he woke up in a jail cell in South Dakota after an alcoholic blackout.

The Senate passed a mental health parity bill in September 2007. The House passed a different version in March of this year.

A breakthrough occurred when sponsors of the House bill agreed to drop a provision that required insurers to cover treatment for any condition listed in the Diagnostic and Statistical Manual of Mental Disorders, published by the American Psychiatric Association.

Employers objected to such a requirement, saying it would have severely limited their discretion over what benefits to provide. Among the conditions in the manual, critics noted, are caffeine intoxication and sleep disorders resulting from jet lag.

Doctors often complain that insurers, especially managed care companies, interfere in their treatment decisions. But doctors and mental health advocates cited the work of such companies in arguing that mental health parity would be affordable, because the benefits could be managed.

Pamela B. Greenberg, president of the Association for Behavioral Health and Wellness, a trade group, said providers of mental health care typically drafted a treatment plan for each person. In complex cases, she said, a case manager or care coordinator monitors the patient’s progress.

A managed care company can refuse to pay for care, on the grounds that it is not medically necessary or “clinically appropriate.” But under the new law, insurers must disclose their criteria for determining medical necessity, as well as the reason for denying any particular claim for mental health services.

Andrew Sperling, a lobbyist at the National Alliance on Mental Illness, an advocacy group, said, “Under the new law, we will probably see more aggressive management of mental health benefits because insurers can no longer impose arbitrary limits.”

The law will also encourage insurers to integrate coverage for mental health care with medical and surgical benefits. Under the law, insurers cannot have separate cost-sharing requirements or treatment limits that apply only to mental illness and addiction disorders.

The law comes just three months after Congress eliminated discriminatory co-payments in Medicare, the program for people who are 65 and older or disabled.

Medicare beneficiaries pay 20 percent of the government-approved amount for most doctors’ services but 50 percent for outpatient mental health services. The co-payment for mental health care will be gradually reduced to 20 percent over six years.

The mental health parity law was forged in a highly unusual consensus-building process. For years, mental health advocates had been lobbying on the issue.

Insurers and employers, which had resisted earlier versions of the legislation, came to the table in 2004 at the request of Mr. Domenici and Senators Edward M. Kennedy, Democrat of Massachusetts, and Michael B. Enzi, Republican of Wyoming.

Each side had, in effect, a veto over the language of any bill. Insurers and employers, seeing broad bipartisan support for the goal in both houses of Congress, decided to work with mental health advocates. Each side gained the other’s trust.

“It was an incredible process,” said E. Neil Trautwein, a vice president of the National Retail Federation, a trade group. “We built the bill piece by piece from the ground up. It’s a good harbinger for future efforts on health care reform.”

    Bailout Provides More Mental Health Coverage, NYT, 6.10.2008, http://www.nytimes.com/2008/10/06/washington/06mental.html

Psychoanalytic Therapy Wins Backing

October 1, 2008
The New York Times
By BENEDICT CAREY

Intensive psychoanalytic therapy, the “talking cure” rooted in the ideas of Freud, has all but disappeared in the age of drug treatments and managed care.

But now researchers are reporting that the therapy can be effective against some chronic mental problems, including anxiety and borderline personality disorder.

In a review of 23 studies of such treatment involving 1,053 patients, the researchers concluded that the therapy, given as often as three times a week, in many cases for more than a year, relieved symptoms of those problems significantly more than did some shorter-term therapies.

The authors, writing in Wednesday’s issue of The Journal of the American Medical Association, strongly urged scientists to undertake more testing of psychodynamic therapy, as it is known, before it is lost altogether as a historical curiosity.

The review is the first such evaluation of psychoanalysis to appear in a major medical journal, and the studies on which the new paper was based are not widely known among doctors.

The field has resisted scientific scrutiny for years, arguing that the process of treatment is highly individualized and so does not easily lend itself to such study. It is based on Freud’s idea that symptoms are rooted in underlying, often longstanding psychological conflicts that can be discovered in part through close examination of the patient-therapist relationship.

Experts cautioned that the evidence cited in the new research was still too meager to claim clear superiority for psychoanalytic therapy over different treatments, like cognitive behavior therapy, a shorter-term approach. The studies that the authors reviewed are simply not strong enough, these experts said.

“But this review certainly does seem to contradict the notion that cognitive or other short-term therapies are better than any others,” said Bruce E. Wampold, chairman of the department of counseling psychology at the University of Wisconsin. “When it’s done well, psychodynamic therapy appears to be just as effective as any other for some patients, and this strikes me as a turning point” for such intensive therapy.

The researchers, Falk Leichsenring of the University of Giessen and Sven Rabung of the University Medical Center Hamburg-Eppendorf, both in Germany, reviewed only those studies in which the therapy had been frequent — more than once a week in many cases — and had lasted at least a year or, alternatively, had been 50 sessions long. Further, the studies had to have followed patients closely, using strict definitions of improvement.

The investigators examined studies that tracked patients with a variety of mental problems, among them severe depression, anorexia nervosa and borderline personality disorder, which is characterized by a fear of abandonment and dark squalls of despair and neediness.

Psychodynamic therapy, Dr. Leichsenring wrote in an e-mail message, “showed significant, large and stable treatment effects which even significantly increased between the end of treatment and follow-up assessment.”

The review found no correlation between patients’ improvement and the length of treatment. But improve they did, and psychiatrists said it was clear that patients with severe, chronic emotional problems benefited from the steady, frequent, close attention that psychoanalysts provide.

“If you define borderline personality broadly as an inability to regulate emotions, it characterizes a lot of people who show up in clinics, whether their given diagnosis is depression, pediatric bipolar or substance abuse,” said Dr. Andrew J. Gerber, a psychiatrist at Columbia. For some of those patients, Dr. Gerber said, “this paper suggests that you’ve got to get into longer-term therapy to make improvements last.”

Some psychoanalysts were more surprised by where the paper appeared than by its results: most review papers in major medical journals have hundreds of studies to draw on, or certainly far more than 23. The new review is encouraging, they said, but also a reminder of how much more study needs to be done.

Dr. Barbara L. Milrod, a professor of psychiatry at Weill Cornell Medical College, who like Dr. Gerber is a clinical practitioner of psychodynamic therapy, said further research was crucial as a matter of survival for a valuable treatment.

“Let’s be real,” Dr. Milrod said. “Major medical centers have been shutting down psychodynamic training programs because there isn’t an adequate evidence base.”

This article has been revised to reflect the following correction:

Correction: October 3, 2008
An article on Tuesday about a review of studies of psychoanalytic therapy referred incorrectly to the 23 studies included in the review. In many of the studies — but not all of them — the therapy had been given more than once a week.

    Psychoanalytic Therapy Wins Backing, NYT, 1.10.2008, http://www.nytimes.com/2008/10/01/health/01psych.html?ref=opinion

Doctor and Patient

The Tyranny of Diagnosis

September 19, 2008
The New York Times
By PAULINE W. CHEN

Not long ago, while surfing online for one disease, I got sidetracked by another: cryptogenic cirrhosis.

I have cared for patients with cryptogenic cirrhosis. It is a common cause of liver-related illness and death in the United States, and symptoms can range from jaundice, bleeding and confusion to life-threatening hemorrhage, coma and death.

The cause of the disease, as the name implies (from the Greek “krypt,” or hidden, and “genesis,” or origin), has long been unknown. Every one of my patients with cryptogenic cirrhosis has heard the same thing from their doctors, including myself: “We have no idea why you are so sick.”

For these patients, cryptogenic cirrhosis is not a diagnosis but a non-diagnosis.

Non-diagnoses like cryptogenic cirrhosis pose particular challenges for doctors. While I feel comfortable predicting the post-transplant course and clinical reactions of patients with, for example, hepatitis or liver cancer, I can never be sure with patients who have cryptogenic cirrhosis.

And patients with non-diagnoses face even greater challenges, challenges that go beyond knowing what exactly is wrong or getting treatments.

For several years of my childhood, my mother suffered from an illness that could not be diagnosed. I have memories of her weakness, of days spent whispering so that she could sleep, and of living with the constant darkness of her bedroom and of her suffering.

Debilitated, my mother went from doctor to doctor, clinician to clinician. Despite their rapt attention to the details of her symptoms, she eventually heard from them what her surgeon-daughter would someday tell others: “We have no idea why you are so sick.”

As I read up on cyptogenic cirrhosis, I was reminded of those words again. Over the last few years, medical researchers have made tremendous advances in our understanding of this illness; it is not quite so cryptogenic anymore, and those suffering from the disease may soon have specific drugs for treatment.

That’s good news for patients, I thought as I scanned the Web sites. But also not-so-good news.

As comforting as it may be to have a real diagnosis, those diagnoses also carry powerful assumptions about our bodies and our place in the world, which can in turn influence our health care.

Charles Rosenberg, a Harvard historian, writes about the power of diagnoses in his book “Our Present Complaint: American Medicine, Then and Now” (Johns Hopkins University Press, 2007). He refers to it as the “tyranny of diagnosis.”

The concept of disease, Professor Rosenberg writes, has historically focused on the individual — a single person’s experience, story and sense of meaning.

Over the last century and a half, however, medicine has increasingly decoupled disease from the individual. This decoupling has given rise to the concept of precise, objective and quantifiable diagnoses, diagnoses so separate from patients that they seem in many ways to take on a life of their own.

Diagnoses cluster together by specific physiologic mechanisms, signs and symptoms, pathologic findings. They have insinuated themselves into health care economics as DRG’s, or Diagnosis-Related Groups, which drive physician compensation. They have inspired whole subspecialty training programs and huge advances in how we understand and treat them. Think of heart failure, cancer and my own specialty, liver transplantation.

This greater understanding and improved treatment are important and good news for all, no doubt.

Yet along with these great clinical strides, diagnoses have also fomented their own cultural revolution. Diagnoses have changed the way we approach individuals.

Diagnosing a patient requires placing that single person’s narrative against the larger predetermined trajectory of a diagnosis. When the individual’s story fits into the diagnosis’s trajectory, there is some relief for all of us. We know what is wrong.

But when we know what is wrong, we sometimes stop paying such close attention to those patient experiences that seem to have little relevance to the diagnosis at hand. We focus less on the individual and more on the diagnosis.

When the diagnosis trajectory and patient picture don’t match, we are left with an “atypical,” “complicated,” “idiopathic” or “undiagnosable” case. One of the risks for these patients, in addition to prolonged physical discomfort or suffering, is that without a diagnosis, their experience may lose meaning and relevance in the eyes of others.

My mother has been well for a few decades now, though her doctors still are not entirely sure of what made her so sick years ago. But the diagnoses they have considered, and her own search for one, have influenced how others — both doctors and non-doctors — have treated and listened to her.

When my mother had no diagnosis, her family and friends, clinicians, and others at first listened intently, sifting her narratives for every possible clue. But then most of us eventually lost interest, as if her experience could not really exist if it had no name.

But each time my mother got close to the relief of having a diagnosis, many of us stopped listening, too, choosing to hear only what seemed important to the diagnosis.

That, I now fear, is the not-so-good news for people with diseases like cryptogenic cirrhosis. We seem unable to harness the power of diagnoses and give full weight to the meaning of an individual’s illness experience.

I recently asked Professor Rosenberg about the power that diagnoses have over how all of us view illness and health care. “Some people would call it progress, some people would call it reductionism, some people would call it bureaucracy,” he told me. “But it’s all of those things.”

Are doctors treating the diagnosis or the patient? Join the discussion on the Well blog.

Pauline W. Chen, a liver transplant surgeon, is the author of “Final Exam: A Surgeon’s Reflections on Mortality” (Knopf, 2007; Vintage, 2008). Her online column, “Doctor and Patient,” appears Thursdays on nytimes.com/health.

    The Tyranny of Diagnosis, NYT, 19.9.2008, http://www.nytimes.com/2008/09/19/health/chen9-18.html

5 Pioneering Scientists Win Lasker Medical Prizes

September 14, 2008
The New York Times
By LAWRENCE K. ALTMAN

Akira Endo, a Japanese scientist whose discovery of the first cholesterol-lowering statin drug helped extend the lives of millions of people, is one of five winners of this year’s Lasker Awards for medical research, it was announced Saturday.

An American microbiologist, Stanley Falkow of Stanford University, was honored for greatly expanding knowledge of disease-causing microbes, ranking him as “one of the greatest microbiologists of all time,” the Albert and Mary Lasker Foundation said in making the awards.

A third award went to two Americans and a Briton for their pioneering look into a previously unknown universe of potent molecules, tiny ribonucleic acids known as micro-RNAs. The Americans are Victor R. Ambros, 54, of the University of Massachusetts Medical School in Worcester and Gary B. Ruvkun, 56, of Massachusetts General Hospital in Boston. The Briton is David C. Baulcombe, 56, of the University of Cambridge.

RNA is DNA’s close chemical cousin. These scientists found that snippets of RNA act as genetic regulators governing many activities in animals and plants. Scientists now have implicated micro-RNAs in viral infections, heart failure, cancer, other diseases, and normal functions like muscle action and blood cell specialization.

Dr. Endo, 74, was chosen for ushering in a new era in preventing and treating coronary heart disease, the leading cause of death in the United States and many other countries, said Dr. Joseph L. Goldstein, chairman of the 24-member scientific jury that selects the Lasker recipients.

For two years beginning in 1971, Dr. Endo grew more than 6,000 fungi as a microbiologist working for a Japanese drug company. He was seeking a natural substance that could block a crucial enzyme involved in the body’s production of cholesterol, which occurs largely in the liver. Cholesterol is a crucial component of cells and serves as a raw material for some hormones and nerve sheaths. But it is also a major contributor to coronary artery disease.

At the time, many scientists were skeptical about the safety of lowering the amount of cholesterol because it was an essential body chemical. But by 1980, Dr. Endo’s team found that the statin lowered the LDL, or “bad” cholesterol level, in the blood by 17 percent.

Dr. Endo went on to identify other statins, and his work led the American pharmaceutical company Merck to start a program to develop them as drugs.

Merck manufactured lovastatin (Mevacor), the first statin to be licensed, in 1987. Since then, statins have become among the most widely prescribed drugs in the United States, taken by an estimated 25 million Americans to treat high levels of LDL cholesterol.

Dr. Falkow, 74, was honored for his discoveries that grew out of an extraordinary ability to imagine himself as a bacterium so he could view the world from the microbial perspective.

That talent helped him discover the molecular nature of antibiotic resistance; forge new laboratory tools that revolutionized the way scientists think about how microbes cause disease; and train a number of students who have become scientific leaders in infectious diseases.

Over his 51-year professional career, Dr. Falkow has also developed techniques to help identify disease-causing bacteria that cannot be grown in the laboratory; show how bacteria pass certain traits to one another; pave the way for recombinant DNA technology that has wide use in drug production and in the laboratory; and help untangle mysteries about how bacteria survive and spread.

Dr. Falkow said his research was conducted at the Walter Reed Army Medical Center, Georgetown University, the University of Washington and then Stanford.

The three winners in the basic research category were honored for expanding the versatility of RNA, long regarded as DNA’s poor cousin. Previous scientific convention held that proteins, not RNAs, governed gene activity in animal cells.

“The notion that small RNAs could control gene expression was unheard of,” said Dr. Goldstein, the Lasker jury chairman, who works at the University of Texas Southwestern Medical Center in Dallas.

The scientists’ discovery of micro-RNAs was an accidental finding in research conducted for other reasons.

Dr. Ambros and Dr. Ruvkun were studying how a roundworm, C. elegans, develops from newly hatched larva to adult. The worm serves as a model animal for many geneticists.

Earlier research on flies showed that certain genes instructed embryos where to place wings, legs and other body parts. Suspecting that other genes specified the timing of such developmental events, Dr. Ambros focused on lin-4, a gene that allows immature worms to advance past a particular development stage. Animals with a defective version of lin-4 cannot pass that hurdle.

Dr. Ambros discovered that animals with a different gene, lin-14, skip early steps in development and prematurely acquire characteristics that normally appear later. The two genes exerted opposite effects in worm cells.

Dr. Ambros and Dr. Ruvkun went on to show how the genes collaborated; at an appropriate time, lin-4 blocks lin-14 activity, allowing worms to continue normal development.

In a series of additional steps, the researchers found that they were dealing with very small strands of RNA. At the time, the smallest RNA known to be of importance in cells consisted of 75 nucleotide building blocks. The RNA they found was composed of 22 nucleotides.

Dr. Baulcombe, in a seemingly unrelated line of research in England, expanded the scope of micro-RNAs’ crucial functions by finding that they silenced genes in plants. He called them silencing RNAs and showed that earlier experiments were not intended to find micro-RNAs because their size was much smaller than scientists had imagined.

Now it seems that micro-RNA provides a sophisticated way of adjusting production of amounts of proteins that are needed at one stage of life but must be absent in others.

Recent studies suggest that the human genome contains more than 500 micro-RNAs and that, collectively, they might control a third of all protein-producing genes. Researchers are now trying to develop drugs that work by blocking micro-RNAs.

The winners will received their Lasker Awards at a luncheon on Sept. 26. The prize in each category is $300,000.

    5 Pioneering Scientists Win Lasker Medical Prizes, NYT, 14.9.2008, http://www.nytimes.com/2008/09/14/health/14lasker.html?hp

A Decline in Uninsured Is Reported for 2007

August 27, 2008
The New York Times
By IAN URBINA

Correction Appended

WASHINGTON — After climbing steadily for six years, the number of Americans without health insurance dropped by more than a million in 2007, to 45.7 million, the Census Bureau reported Tuesday.

The drop was the result of growth in government-sponsored health insurance programs, officials said, most of them focused on children. At the same time, the number of people covered by private insurance continued to decline.

Experts cautioned that the report, which also included data on income and poverty, did not take into account the economic downturn that began late last year, and therefore it probably presents a rosier picture than the current economic reality.

According to the report, the nation’s median household income rose by 1.3 percent in 2007, to $50,233, the third consecutive annual increase. The nation’s poverty rate remained flat at 12.5 percent, the report said.

“The data in this report refer to last year, when everything was different,” said Jared Bernstein, a senior economist at the Economic Policy Institute, a liberal policy group in Washington. “This year, we’re losing jobs on a monthly basis, inflation is running well over 5 percent, and unemployment was last seen at 5.7 percent and rising.”

Health-care experts and advocates for the poor said the report also presented an outdated picture regarding health insurance. The rate of people without health insurance declined to 15.3 percent in 2007, from 15.8 percent a year earlier.

“In 2007, at least 26 states made efforts to expand coverage, but as the economy has turned downward so have state efforts,” said Diane Rowland, executive vice president of the Kaiser Family Foundation.

Ms. Rowland added that insurance premiums had risen faster than wages and inflation, causing more people to seek insurance from public programs.

The census report, she said, highlights the importance of expanding government health-care plans like the State Children’s Health Insurance Program.

In December, President Bush signed legislation that extends federal financing for the program through the end of March 2009. That action came after he vetoed two Congressional attempts to expand the program.

David Johnson, chief of the Housing and Household Economic Statistics Division at the Census Bureau, said that the number of people covered by private insurance declined in 2007, but that the overall number of people who were uninsured went down because of federal and state programs.

“The fall in private insurance was similar to recent years,” Mr. Johnson said. “That fall was offset by the rise in government insurance.”

The number of people under 18 without insurance dropped to 11 percent, or 8.1 million, in 2007, from 11.7 percent, or 8.7 million, a year earlier.

Over all, the percentage of people covered by government programs rose to 27.8 percent in 2007 from 27 percent the year before. The percentage and number of people on Medicaid, the government health insurance program for low-income people, rose to 13.2 percent, or 39.6 million, in 2007, up from 12.9 percent, or 38.3 million, in 2006.

Private health insurance fell, covering 67.5 percent of Americans in 2007, down from 67.9 percent in 2006. Employment-based coverage also continued its long decline in 2007, dropping to 59.3 percent from 59.7 percent.

“States such as Massachusetts have also played an important role in stemming the rising tide of uninsured, and thanks to their health reform law they now have one of the lowest uninsured rates,” said Karen Davis, president of the Commonwealth Fund, a private foundation supporting independent health policy and health care research. “But 45.7 million uninsured people are far too many, and we need a national solution to this crisis.”

Changes in economic circumstances varied regionally and by race and age.

Douglas J. Besharov, a resident scholar at the American Enterprise Institute, a conservative research group, said one of the most noteworthy statistics in the report concerned foreign-born residents.

While households led by someone who was native-born had an increase of 1 percent in median income, the income of households headed by foreign-born persons who are noncitizens dropped 7.3 percent in 2007, according to the report.

Real median income (adjusted for inflation) for black and non-Hispanic white households rose between 2006 and 2007, representing the first measured real increase in annual household income for each group since 1999, according to the report. Real median household income remained statistically unchanged for Asians and Hispanics.

Mr. Besharov said an increase in poverty among Hispanics in the construction trade stemmed largely from the bursting of the housing bubble and the ensuing mortgage crisis.

“With more current data, we would see that the type of the poverty that we see among Latinos has actually already spread to the general population,” Mr. Besharov said.

Mr. Bernstein, from the Economic Policy Institute, agreed and said that while comparisons to 2006 showed some improvement, in order to understand the difficulties facing middle- and low-income families, it was important to consider these results in the context of the economic expansion since 2000.

For the first time on record, real household income is no higher at the end of an economic expansion than it was when the cycle began, Mr. Bernstein said.

The median income of working-age households — with household heads under age 65 — rose insignificantly in 2007, when adjusted for inflation, and was $2,010 below its 2000 level.

“Working households helped bake a bigger economic pie but ended up with thinner slices,” Mr. Bernstein said.

The report also found other disparities.

Women earned 78 cents for every $1 earned by men. But that is the highest percentage ever reported for women, when compared with men.

Texas led the nation with the highest percentage of uninsured residents, 24.4 percent, while Massachusetts and Hawaii, at 8.3 percent, had the lowest.

This article has been revised to reflect the following correction:

Correction: August 28, 2008

A map on Wednesday with an article about the percentage of Americans without health insurance erroneously highlighted a state in some copies. The label for Massachusetts, the state with the lowest percentage of uninsured people, pointed to Pennsylvania.

    A Decline in Uninsured Is Reported for 2007, NYT, 27.8.2008, http://www.nytimes.com/2008/08/27/washington/27census.html

Editorial

The Massachusetts Way

August 30, 2008
The New York Times

The pioneering Massachusetts program to provide health insurance for all citizens looks more and more successful with each passing month.

The number of uninsured has dropped — Massachusetts now has the lowest rate in the nation — and so have the number of those who turn to costly emergency rooms for routine care. And while the state has had to seek additional sources of revenue — mainly because of the program’s popularity — the gains in the first 21 months suggest that the plan could become a model for universal health coverage for other states or the nation.

Massachusetts enacted its ambitious health insurance reform two years ago under bipartisan leadership from then-Gov. Mitt Romney and a Democratic Legislature. Although Mr. Romney distanced himself from the plan during the Republican primaries, he was back to extolling its virtues in an opinion piece for The Wall Street Journal last month.

The plan requires everyone to take out health insurance or suffer a tax penalty and requires employers to offer coverage or pay a small assessment if they don’t. Low-income residents can enroll in an expanded state-federal Medicaid program or receive subsidies to pay all or part of the premiums for private insurance. Those who earn more than 300 percent of the federal poverty level (about $63,000 for a family of four) receive no subsidy but can buy private policies through a new insurance exchange at much lower rates than before.

More than 439,000 people have taken out coverage since the program began in mid-2006 — two-thirds of the estimated 650,000 who lacked health insurance when the program began.

More than 40 percent of the newly insured purchased private commercial policies without any government subsidies, defying dire predictions that employers would drop their plans and a horde of individuals would drop private policies. What seems to be happening instead is that workers who previously shunned their employers’ plans have decided to sign up now that insurance is required.

The big expansion in coverage has yielded a commensurate drop in the number of “free riders,” those who use hospital emergency rooms and community health centers for routine care that they don’t pay for. The cost of that uncompensated care dropped from $166 million in the first quarter of fiscal 2007 to $98 million in the first quarter of 2008.

Far more people have enrolled far more quickly than expected, driving up the total budget for subsidized care beyond Medicaid to $869 million in the next fiscal year, about half of which will be absorbed by the state and the other half by redirected federal funds. The cost per person is actually less than expected. The program to date is fully financed.

That may still look like a lot of money, but universal coverage is vitally important to enhance the health of previously uninsured citizens. In the long run, full coverage should serve as a springboard toward reforming the health care system to deliver higher quality, more cost-effective care.

    The Massachusetts Way, NYT, 30.9.2008, http://www.nytimes.com/2008/08/30/opinion/30sat1.html

H.I.V. Is Spreading in New York City at Three Times the National Rate,
a Study Finds

August 28, 2008
The New York Times
By SEWELL CHAN

The virus that causes AIDS is spreading in New York City at three times the national rate — an incidence of 72 new infections for every 100,000 people, compared with 23 per 100,000 nationally — according to a study released on Wednesday by the city’s Department of Health and Mental Hygiene.

The findings, based on a new formula developed by the federal Centers for Disease Control and Prevention, estimated that 4,762 New Yorkers contracted H.I.V. in 2006, the most precise estimate the city had ever offered.

But the city stressed that because the method of estimating infections was new, it could not be said definitively whether the number of new infections in the city had increased or decreased from previous years.

Blacks, and men who have sex with other men, are the groups at greatest risk of contracting H.I.V., the study found. A summary of the new data:

¶Men accounted for 76 percent of new H.I.V. infections and women for 25 percent. (The figures exceed 100 percent because of rounding.)

¶Blacks made up 46 percent of the newly infected; Hispanics, 32 percent; and whites, 21 percent. (Figures for other racial or ethnic groups were not provided.)

¶Those under age 20 made up 4 percent of the newly infected; those 20 to 29 years old, 24 percent; those 30 to 39 years old, 29 percent; those 40 to 49 years old, 29 percent; and those 50 and older, 15 percent.

¶Sex between men was the main cause in 50 percent of new infections; high-risk heterosexual sex in 22 percent; intravenous drug use in 8 percent; and unknown or uncertain causes in 18 percent.

Manhattan accounted for 35 percent of new infections; Brooklyn, 26 percent; the Bronx, 19 percent; and Queens, 17 percent.

As the health department has repeatedly noted, gay minority men were particularly at risk. For example, of new H.I.V. infections among men under age 30 who have sex with men, 77 percent were in black or Hispanic men, as were 59 percent of new H.I.V. infections among men ages 30 to 50 who have sex with men.

Over all, the study found some interesting differences between national and local rates of new H.I.V. infections.

Nearly two-thirds of the city’s new infections occurred in people 30 to 50 years old. Nationally, people under 30 accounted for 41 percent of new infections, compared with 28 percent in New York City.

Also, within New York City, whites were infected at four times the national rate, Hispanics at three times the national rate, and blacks at almost twice the national rate.

The health department said in a news release:

“The analytic technique is new, and the estimates may be imprecise, but even a rough gauge of H.I.V. incidence is a valuable tool for understanding — and combating — the spread of H.I.V. The health department’s new estimate includes 2006 incidence figures for different age groups, racial groups and both genders. By repeating the exercise for subsequent years, researchers may be able to discern increases and decreases over time, and target their prevention efforts accordingly.”

Over the past year, the health department has warned that H.I.V. infections among young gay men have risen and that unsafe sex remains common.

    H.I.V. Is Spreading in New York City at Three Times the National Rate, a Study Finds, NYT, 27.8.2008, http://www.nytimes.com/2008/08/28/health/research/28hiv.html

H.I.V. Study Finds Rate 40% Higher Than Estimated

August 3, 2008
The New York Times
By LAWRENCE K. ALTMAN

MEXICO CITY — The United States has significantly underreported the number of new H.I.V. infections occurring nationally each year, with a study released here on Saturday showing that the annual infection rate is 40 percent higher than previously estimated.

The study, conducted by the Centers for Disease Control and Prevention, found that 56,300 people became newly infected with H.I.V in 2006, compared with the 40,000 figure the agency has cited as the recent annual incidence of the disease.

The findings confirm that H.I.V., the virus that causes AIDS, has its greatest effect among gay and bisexual men of all races (53 percent of all new infections) and among African-American men and women.

The new figures are likely to strongly influence a number of decisions about efforts to control the epidemic, said the disease centers’ director, Dr. Julie L. Gerberding, and other AIDS experts. Timely data about trends in H.I.V. transmission, they said, is essential for planning and evaluating prevention efforts and the money spent on them.

Dr. Gerberding said the new findings were “unacceptable,” adding that new efforts must be made to lower the infection rates. “We are not effectively reaching men who have sex with men and African-Americans to lower their risk,” she said.

Dr. Kevin A. Fenton, who directs H.I.V. prevention efforts at the agency, said, “C.D.C.’s new incidence estimates reveal that the H.I.V. epidemic is and has been worse than previously known.”

A separate historical trend analysis published as part of the study suggests that the number of new infections was probably never as low as the earlier estimate of 40,000 and that it has been roughly stable overall since the late 1990s.

C.D.C. officials said the revised figure did not necessarily represent an increase in the number of new infections but reflected the ability of a new testing method to more precisely measure H.I.V. incidence and secure a better understanding of the epidemic.

Dr. Philip Alcabes, an epidemiologist at Hunter College in Manhattan, raised questions about the validity of the findings. If they are true, Dr. Alcabes said in a statement, the agency has undercounted new H.I.V. infections by about 15,000 per year for about 15 years. “Therefore, there are roughly 225,000 more people living with H.I.V. in the U.S. than previously suspected,” he said. “The previous estimate was 1 million to 1.1 million.”

A C.D.C. spokeswoman said Dr. Alcabes’s estimates were incorrect because the new figures could not be used to calculate the total number of people with H.I.V. The C.D.C. does not know the total number but is expected to determine it later in the year.

The C.D.C., the federal agency responsible for tracking the AIDS epidemic in the United States, said its new monitoring system provided more precise estimates than were previously possible of new infections in specific populations. Infection rates among blacks were found to be seven times as high as for whites (83.7 per 100,000 people versus 11.5 per 100,000) and almost three times as high as for Hispanics (29.3 per 100,000 people), a group that was also disproportionately affected.

The C.D.C. has known of the new figures since last October, when the authors completed a manuscript and sent it to the first of three journals. But the agency refused to release the findings until they were published in a peer-reviewed medical journal. The first two journals rejected the authors’ request for a fast-track review.

The paper is being published in the Aug. 6 issue of The Journal of the American Medical Association. The journal and the disease centers had planned to release it at a news conference on Sunday at the opening of the 17th International AIDS Conference here. But the paper was released on Saturday because the embargo was broken. A number of leading health experts have criticized the agency for not releasing the information earlier. On Nov. 21, C.D.C. officials told AIDS advocacy groups and reporters that the data would be released soon.

In an editorial on June 21, The Lancet, an internationally prestigious journal published in London, severely criticized the disease centers for failing to release the information and said, “U.S. efforts to prevent H.I.V. have failed dismally.”

Dr. Gerberding, in defending the decision not to release the data earlier, said: “This paper has been scrutinized by some of the best statisticians in the country and is much better now than when we started this process. It was so complicated that even I, who has some expertise in this area, could not stand by it without making sure we had gone through the review process.”

She added, “This is one of those examples where getting the external review process to really scrutinize the paper, pick it apart, build it back up, has in my opinion fundamentally improved it.”

The delay, however, has also fueled criticism that the Bush administration, which has earned plaudits for spending tens of billions to fight AIDS in a number of highly affected countries, has not done enough to fight the disease at home.

Representative Henry A. Waxman, Democrat of California and chairman of the Committee on Oversight and Government Reform, was critical of the administration. “H.I.V. prevention has been underfunded and too often hindered by politics and ideology,” Mr. Waxman said in a statement released Saturday.

He said the administration had reduced domestic spending against H.I.V. “Since fiscal year 2002, when adjusted for inflation, C.D.C.’s prevention budget has actually shrunk by 19 percent. The president has recently requested decreases in funding for H.I.V. prevention at C.D.C.”

Mr. Waxman said he would soon hold hearings on why health officials had had “less and less money to actually get these programs to the communities that need them.”

Dr. Alcabes disagreed with critics who contend that the new numbers point to a failure of United States policy on AIDS, saying his conclusion was that “it looks like prevention campaigns make even less difference than anyone thought.”

“H.I.V. incidence did not decline as much from the 1980s to the 1990s as we believed,” he said, “despite the dramatic increase in condom promotion and so-called prevention education.”

The C.D.C. said the findings confirmed sharp declines in the number of new H.I.V. infections each year, from a peak of about 130,000 in the mid-1980s to a low of roughly 50,000 in the early 1990s. But the findings also indicate that the number of new infections increased in the late 1990s but has since remained relatively stable, with estimates of 55,000 to 58,500 in the three most recent time periods analyzed.

Dr. Gerberding said: “If there is any good news here, it is hard to report it, but there is a little bit in the sense that while incidence rates are certainly too high, they are stable. That is important because a stable number of new infections in a world that has got more and more people with H.I.V. and people with AIDS living in it suggests that we are keeping up with that pressure for transmission.”

The revised figures are based on a new laboratory test that can distinguish between recent and long-standing H.I.V. infection, as well as on statistical measures and extrapolations.

The test is done in the laboratory on left-over serum from the standard H.I.V. test after it shows that a person is infected. The Food and Drug Administration has approved the test, known as BED.

Dr. Gerberding said that an earlier version of the new test was too crude to do the same kind of study earlier this decade. Despite the improvements in the test, she said, it is “not perfect yet.”

    H.I.V. Study Finds Rate 40% Higher Than Estimated, NYT, 3.8.2008, http://www.nytimes.com/2008/08/03/health/03aids.html?hp

Immigrants Deported, by U.S. Hospitals

August 3, 2008
The New York Times
By DEBORAH SONTAG

JOLOMCÚ, Guatemala — High in the hills of Guatemala, shut inside the one-room house where he spends day and night on a twin bed beneath a seriously outdated calendar, Luis Alberto Jiménez has no idea of the legal battle that swirls around him in the lowlands of Florida.

Shooing away flies and beaming at the tiny, toothless elderly mother who is his sole caregiver, Mr. Jiménez, a knit cap pulled tightly on his head, remains cheerily oblivious that he has come to represent the collision of two deeply flawed American systems, immigration and health care.

Eight years ago, Mr. Jiménez, 35, an illegal immigrant working as a gardener in Stuart, Fla., suffered devastating injuries in a car crash with a drunken Floridian. A community hospital saved his life, twice, and, after failing to find a rehabilitation center willing to accept an uninsured patient, kept him as a ward for years at a cost of $1.5 million.

What happened next set the stage for a continuing legal battle with nationwide repercussions: Mr. Jiménez was deported — not by the federal government but by the hospital, Martin Memorial. After winning a state court order that would later be declared invalid, Martin Memorial leased an air ambulance for $30,000 and “forcibly returned him to his home country,” as one hospital administrator described it.

Since being hoisted in his wheelchair up a steep slope to his remote home, Mr. Jiménez, who sustained a severe traumatic brain injury, has received no medical care or medication — just Alka-Seltzer and prayer, his 72-year-old mother said. Over the last year, his condition has deteriorated with routine violent seizures, each characterized by a fall, protracted convulsions, a loud gurgling, the vomiting of blood and, finally, a collapse into unconsciousness.

“Every time, he loses a little more of himself,” his mother, Petrona Gervacio Gaspar, said in Kanjobal, the Indian dialect that she speaks with an otherworldly squeak.

Mr. Jiménez’s benchmark case exposes a little-known but apparently widespread practice. Many American hospitals are taking it upon themselves to repatriate seriously injured or ill immigrants because they cannot find nursing homes willing to accept them without insurance. Medicaid does not cover long-term care for illegal immigrants, or for newly arrived legal immigrants, creating a quandary for hospitals, which are obligated by federal regulation to arrange post-hospital care for patients who need it.

American immigration authorities play no role in these private repatriations, carried out by ambulance, air ambulance and commercial plane. Most hospitals say that they do not conduct cross-border transfers until patients are medically stable and that they arrange to deliver them into a physician’s care in their homeland. But the hospitals are operating in a void, without governmental assistance or oversight, leaving ample room for legal and ethical transgressions on both sides of the border.

Indeed, some advocates for immigrants see these repatriations as a kind of international patient dumping, with ambulances taking patients in the wrong direction, away from first-world hospitals to less-adequate care, if any.

“Repatriation is pretty much a death sentence in some of these cases,” said Dr. Steven Larson, an expert on migrant health and an emergency room physician at the Hospital of the University of Pennsylvania. “I’ve seen patients bundled onto the plane and out of the country, and once that person is out of sight, he’s out of mind.”

Hospital administrators view these cases as costly, burdensome patient transfers that force them to shoulder responsibility for the dysfunctional immigration and health-care systems. In many cases, they say, the only alternative to repatriations is keeping patients indefinitely in acute-care hospitals.

“What that does for us, it puts a strain on our system, where we’re unable to provide adequate care for our own citizens,” said Alan B. Kelly, vice president of Scottsdale Healthcare in Arizona. “A full bed is a full bed.”

Medical repatriations are happening with varying frequency, and varying degrees of patient consent, from state to state and hospital to hospital. No government agency or advocacy group keeps track of these cases, and it is difficult to quantify them.

A few hospitals and consulates offered statistics that provide snapshots of the phenomenon: some 96 immigrants a year repatriated by St. Joseph’s Hospital in Phoenix; 6 to 8 patients a year flown to their homelands from Broward General Medical Center in Fort Lauderdale, Fla.; 10 returned to Honduras from Chicago hospitals since early 2007; some 87 medical cases involving Mexican immigrants — and 265 involving people injured crossing the border — handled by the Mexican consulate in San Diego last year, most but not all of which ended in repatriation.

Over all, there is enough traffic to sustain at least one repatriation company, founded six years ago to service this niche — MexCare, based in California but operating nationwide with a “network of 28 hospitals and treatment centers” in Latin America. It bills itself as “an alternative choice for the care of the unfunded Latin American nationals,” promising “significant saving to U.S. hospitals” seeking “to alleviate the financial burden of unpaid services.”

Many hospitals engage in repatriations of seriously injured and ill immigrants only as a last resort. “We’ve done flights to Lithuania, Poland, Honduras, Guatemala and Mexico,” said Cara Pacione, director of social work at Mount Sinai Hospital in Chicago. “But out of about a dozen cases a year, we probably fly only a couple back.”

Other hospitals are more aggressive, routinely sending uninsured immigrants, both legal and illegal, back to their homelands. One Tucson hospital even tried to fly an American citizen, a sick baby whose parents were illegal immigrants, to Mexico last year; the police, summoned by a lawyer to the airport, blocked the flight. “It was horrendous,” the mother said.

Sister Margaret McBride, vice president for mission services at St. Joseph’s in Phoenix, which is part of Catholic Healthcare West, said families were rarely happy about the hospital’s decision to repatriate their relatives. But, she added, “We don’t require consent from the family.”

In a case this spring that outraged Phoenix’s Hispanic community, St. Joseph’s planned to send a comatose, uninsured legal immigrant back to Honduras, until community leaders got lawyers involved. While they were negotiating with the hospital, the patient, Sonia del Cid Iscoa, 34, who has been in the United States for half her life and has seven American-born children, came out of her coma. She is now back in her Phoenix home.

“I can think of three different scenarios that would have led to a fatal outcome if they had moved her,” John M. Curtin, her lawyer, said. “The good outcome today is due to the treatment that the hospital provided — reluctantly, and, sadly enough, only in response to legal and public pressure.”

Unlike Ms. Iscoa and Mr. Jiménez, most uninsured immigrant patients in repatriation cases do not have advocates fighting for them, and they are quietly returned to their home countries. Sometimes, their families accept that fate because they are told they have no options; sometimes they are grateful to the hospital for paying their fare home, given that other hospitals leave it to relatives or consulates to assume responsibility for the patients.

Mr. Jiménez’s case is apparently the first to test the legality of cross-border patient transfers that are undertaken without the consent of the patients or their guardians — and the liability of the hospitals who undertake them.

“We’re the rhesus monkey on this issue,” said Scott Samples, a spokesman for Martin Memorial.

A Life-Changing Accident

Mr. Jiménez’s journey north was propelled by the usual migrant’s dreams. When he pledged thousands of dollars to pay the smuggler who delivered him to the United States, he envisioned years of labor on the lawns of affluent America and then a payoff: the means to buy land of his own, to cultivate his own garden, back in Guatemala.

But fate — in the person of Donald Flewellen, a pipe welder with a drug problem and a long criminal record — intervened. At lunchtime on Feb. 28, 2000, Mr. Flewellen was loitering in the parking lot of a Publix supermarket in Palm Beach Gardens, Fla., when the employees of an irrigation company ran inside, leaving the keys in their van. Seizing the moment, Mr. Flewellen, a thorn in the side of local prosecutors with at least 14 arrests, jumped into the van and drove off.

In the next few hours, Mr. Flewellen consumed enough alcohol to produce a blood-alcohol level four times higher than the legal limit. But drive he did, along the back roads that connect the affluent Treasure Coast to the agricultural interior where Guatemalan Mayan immigrants have settled in a place, coincidentally, called Indiantown.

About 4 p.m., Mr. Flewellen was heading east on a rural road just as Mr. Jiménez and three compatriots were returning home from a day of landscaping. His stolen van and their 1988 Chevrolet Beretta crashed head-on, instantly killing two of the Guatemalans and severely injuring the driver and Mr. Jiménez, a back-seat passenger.

Identified first as John Doe, Mr. Jiménez arrived by ambulance at Martin Memorial, a not-for-profit hospital on the banks of the St. Lucie River in Stuart. He was unconscious and in shock from extensive bleeding, with two broken thigh bones, a broken arm, multiple internal injuries, a terribly lacerated face and a severe head injury. A doctor noted his prognosis as “poor.”

But Mr. Jiménez, after intensive surgical and medical intervention, survived. “He was no longer Luis; he was another person,” Montejo Gaspar Montejo, his cousin by marriage, said, describing a previously husky and industrious laborer who was also a soccer enthusiast. “He didn’t talk. He didn’t understand anything. He stayed curled up in a ball. But he was alive.”

During that time, Martin Memorial asked Michael R. Banks, a local lawyer who specializes in estate planning, to set up a guardianship for Mr. Jiménez. “I said, ‘Sure, what can come of such a case?’ ” Mr. Banks said. “Then it took on a life of its own. They probably regret they ever called me.”

Mr. Jiménez, whose common-law wife and two children remained in Guatemala, had been living for just under a year with Mr. Gaspar’s family. Mr. Gaspar, who works in golf-course maintenance, agreed to serve as guardian.

At first, things were amicable. In the summer of 2000, Mr. Jiménez was transferred to a nursing home in Stuart, which may have accepted him because an insurance payout was possible.

Mr. Flewellen, who eventually pleaded guilty to D.U.I. manslaughter, D.U.I. injury and grand theft auto, was not insured. But the Guatemalan families sought to hold the irrigation company liable since its employees left the keys in the car. Their lawsuit ultimately failed.

In the nursing home, Mr. Jiménez began wasting away. His relatives grew anxious. Then, Robert L. Lord Jr., Martin Memorial’s vice president of legal services, said, “Mr. Jiménez was put back on our doorstep.”

He arrived by ambulance, this time emaciated and suffering from ulcerous bed sores so deep that the tendons behind his knees were exposed. With infection raging, “the question to be answered is if the patient’s condition is terminal,” a doctor wrote in his file.

Again, Martin Memorial’s doctors provided life-saving care. Hospitals are mandated to treat and stabilize anyone suffering from an emergency medical condition, and the federal government does provide emergency Medicaid coverage for illegal and new immigrants.

But hospitals say that emergency Medicaid covers only a small fraction of those expenses: $80,000 in Mr. Jiménez’s case, according to court papers.

Mr. Jiménez remained in a vegetative state, coiled in a fetal position, for “one year, two months and 15 days,” Mr. Gaspar said with precision.

Stunning his relatives and medical officials, though, Mr. Jiménez gradually woke up and started interacting with the world. “One day,” Mr. Gaspar said in Spanish, “we arrived for a visit, and he said to me, ‘You are Montejo.’ ”

Not long afterward, the battle began between Martin Memorial and Mr. Gaspar, a reserved man whose Indiantown living room is decorated with a “We Love America” clock, a beach towel from the ancient city of Tikal and a hammered metal image of the Virgin Mary.

A Hospital’s Dilemma

The average stay at Martin Memorial, a relatively tranquil hospital which features a palm frond design in its gleaming lobby floor and white-coiffed volunteers in its gift shop, is 4.1 days and costs $8,188. Patients rarely linger.

Those like Mr. Jiménez who outstay their welcome are an oddity but not an anomaly. Mr. Jiménez had a roommate from Jamaica, a diabetic who lost both legs. Martin Memorial eventually flew him back to his native country, too.

In addition to trauma patients, there are uninsured immigrants with serious health problems. “In our emergency room, we don’t turn anyone away,” said Carol Plato Nicosia, the director of corporate business services. “The real problem is if we find an underlying problem, and now we have six of them — six patients who showed up in renal failure and that we are now seeing three times a week for dialysis.”

One of the six, she said, voluntarily returned to Guatemala after receiving a poor prognosis. But she showed up at Martin Memorial again after her relatives insisted that she undertake the trek over the borders a second time because she could not get treatment in Guatemala, Ms. Plato Nicosia said.

“I don’t want to sound heartless,” Ms. Plato Nicosia said. “A community hospital is going to give care. But is it the right thing? We have a lot of American citizens who need our help. We only make about 3 percent over our bottom line if we’re lucky. We need to make capital improvements and do things for our community.”

Martin Memorial reported a total margin of 3.6 percent over its bottom line last year and 6 percent in 2006. According to the most recent statewide data, the nonprofit medical center also reported assets of $270.6 million in 2006, with its senior executives earning more than $4 million in salaries and benefits.

Tax-exempt hospitals are expected to dedicate an unspecified part of their services to charity cases, and Martin Memorial devoted $23.9 million in 2006, about 3 percent, which was average for Florida, according to state data.

Mr. Jiménez was a very expensive charity case. In cases like his, where patients need long-term care, hospitals are not allowed to discharge them to the streets. Federal regulations require them — if they receive Medicare payments, and most hospitals do — to transfer or refer patients to “appropriate” post-hospital care.

But in most states, the government does not finance post-hospital care for illegal immigrants, for temporary legal immigrants or for legal residents with less than five years in the United States. (California and New York City are notable exceptions; Medi-Cal, the state’s Medicaid program, spends $20 million a year on long-term care for illegal immigrants, as does the Health and Hospitals Corporation of New York City.)

Martin Memorial’s lawyer, Mr. Lord, said hospitals should not be forced to assume financial and legal responsibility for these cases. “It should be a governmental burden,” he said, “or the government should step in and otherwise exercise its authority for deportation or whatever it wants to do.”

In Mr. Jiménez’s case, the hospital’s doctors determined that appropriate post-hospital care meant traumatic brain injury rehabilitation. Much to the surprise of the hospital staff, Mr. Jiménez had regained cognitive function to about the level of a fourth-grade child.

Hospital discharge planners searched to no avail for a rehabilitation program or nursing home. “Unable to take patient” was the response to many queries, as noted in Mr. Jiménez’s files, which also state: “At this time, patient remains a disposition problem.”

Representing Mr. Jiménez’s guardian, Mr. Banks took the position that the hospital had a responsibility to provide Mr. Jiménez with the rehabilitation he needed — even if it meant paying a rehabilitation center to provide it. That, he noted, could have benefited both the hospital and the patient.

“It would have been more cost-effective for them,” Mr. Banks said, given that daily patient costs in long-term care are far lower than in acute-care hospitals. “And if the rehab worked, then Luis might have become a functional person and nobody’s charge.”

But the hospital declined, as Mr. Lord put it, “to take out our checkbook” and subsidize his care at another institution.

“Once you take that step, for how long are you going to do that — a year, 10 years, 50 years?” Mr. Lord, the lawyer, asked.

At that point, the hospital intensified its efforts to involve the Guatemalan government in the case. In a memorandum obtained by The New York Times, a consular official wrote that the hospital “informed us of how expensive it was becoming to care for Luis given that there was no insurance and that he is illegal and that the state won’t assume responsibility for his charges.”

Eventually, the Guatemalan health minister wrote a letter assuring Martin Memorial that his country was prepared to care for Mr. Jiménez. Gabriel Orellana, who was foreign minister at the time but did not have direct knowledge of the case, said the Guatemalan government was disposed to assist an American institution. “If a hospital in Florida asks if we can take care of a Guatemalan patient, the tendency is to say yes,” Mr. Orellana said.

Mr. Gaspar was dubious, believing the public health care system in his homeland to be grossly inadequate.

So the guardian and the hospital reached an impasse, and Martin Memorial finally took the matter to court, asking a state judge to compel Mr. Gaspar to cooperate with its repatriation plan. In June 2003, a hearing was held before Circuit Judge John E. Fennelly.

The Journey Home

In the courthouse in Stuart, a low-key, upscale town that boasts world-class fishing, George F. Bovie III, a lawyer for Martin Memorial, addressed the judge: “This case is not simply a case, as some would try and paint it, of money. This is a case about care for a man in this country illegally who has reached maximum medical improvement at our hospital and is ready to be discharged and whose home government” is prepared to receive and treat him.

Mr. Banks responded: “Your honor, this is a case about a hospital that has failed to do its job properly,” adding that the hospital sought to “have this court legitimize its patient dumping.”

By the time of the hearing, Mr. Jiménez was essentially a boarder at the hospital, wheeling around the hallways and hanging out at the nursing stations. Diana Gregory, a nurse who supervises case management and discharge planning, said in a recent interview that Mr. Jiménez — “I will affectionately call him Louie” — became “like family” to hospital staff members, who bought him birthday cakes, knitted him blankets and gave him toys.

According to hospital records, however, it was not all pastries and presents. Mr. Jiménez grew depressed as he gradually became more cognizant of his situation. He showed signs of regression, too. Emotional and behavioral volatility often follow serious head injuries, and Ms. Gregory said that Mr. Jiménez had developed some disturbing habits, including spitting, yelling out, kicking and defecating on the floor.

In court, his doctor, Walter Gil, testified that Mr. Jiménez would benefit from returning to the intimacy of his family. In his case file, the doctor had noted that Mr. Jiménez had told him, “Estoy triste,” meaning, “I’m sad.”

Dr. Gil said he asked Mr. Jiménez, “Why are you sad when you have basically everything that could be offered to you?” And, he said, Mr. Jiménez replied, “I miss my family and my wife.”

Mr. Banks’s witnesses challenged what they described as Guatemala’s vague offer to care for Mr. Jiménez.

Dr. Miguel Garcés, a prominent Guatemalan physician and public health advocate, said in a deposition that serious rehabilitation “is almost nonexistent” in Guatemala outside private facilities. He predicted that Mr. Jiménez would be taken in and then released from the country’s one public rehabilitation hospital within a matter of weeks.

“I don’t want him to go home and die,” Dr. Garcés said.

“Nobody wants him to go home and die,” the hospital’s lawyer responded.

A few weeks later, Judge Fennelly ruled. “This Court,” he wrote, “sails on uncharted seas.” He acknowledged that his decision might provoke dissent but opined, “As Aquinas once stated, ‘The good is not the enemy of the perfect,’ ” inverting and misattributing Voltaire’s famous quote, “The perfect is the enemy of the good.”

And then he granted the hospital’s petition, ordering that Mr. Gaspar stop “frustrating” the hospital’s plan to “relocate the ward” back to Guatemala.

Mr. Banks was stunned. He filed a notice of appeal and asked for a stay of the court’s order while the appeal was pending. The judge asked the hospital to file a response by 10 a.m. on July 10 before he ruled on the stay.

Four and a half hours before that response was due, shortly before daybreak on July 10, 2003, an ambulance picked up Mr. Jiménez at the hospital and drove him to the St. Lucie County airport, where an air ambulance waited to transport him back to Guatemala. Mr. Gaspar was not apprised.

“We went to see him at the hospital, and his bed was empty,” he said.

The hospital’s lawyer declined to comment on why the hospital did not wait for the judge to rule on the stay.

Diana Gregory, the nurse, traveled to Guatemala with Mr. Jiménez, bringing a wheelchair, a week’s worth of medications, “lunch/snacks/juices/treats,” and an emergency passport signed with a fingerprint, according to discharge records. Mr. Jiménez wore a Florida Marlins cap and carried a toy cellphone.

During the flight, the records said, Mr. Jiménez dozed, paged through picture books, pushed the window shade up and down and pointed outside, saying, “Look, look!” When he arrived in Guatemala, an ambulance took him to the National Hospital for Orthopedics and Rehabilitation, which occupies the converted stables of an old villa in the historic center of the capital city.

Ms. Gregory accompanied him there, turned over his records and toured the hospital. In a recent interview, Ms. Gregory said she was impressed by the place and especially by the staff’s pride in it, despite equipment that looked “like it could have been donated to the Smithsonian.” She added, “That facility could have taken care of me any day.”

While Ms. Gregory was taking her tour, Mr. Jiménez was holding court, according to her notes in his file, “telling everyone that he was from Miami, Florida, and showing them his toy cat.” At her request, a physician told Mr. Jiménez in Spanish “that he would be staying with his new friends in Guatemala and that I was leaving.” His response, according to her notes: “O.K., O.K., adiós.”

Glad that she had helped reunite Mr. Jiménez with his homeland, she said, “I left Guatemala quiet in my heart.”
 

Care in Guatemala

Immaculately clean but dilapidated, Guatemala’s National Hospital for Orthopedics and Rehabilitation operates on a shoestring budget of approximately $400,000 a year, according to Dr. Harold Von Ahn, who was director when Mr. Jiménez arrived.

Half the hospital is devoted to orthopedic care and the other half serves as an “asylum” for profoundly disabled Guatemalans. Although it is the only public rehabilitation hospital in the country, it dedicates just 32 beds to rehabilitation and does not offer the specialized brain injury treatment that Mr. Jiménez needed.

The Guatemalan foreign ministry said that it knew of 53 repatriations by American hospitals in the last five years. During a visit by The Times to the National Hospital in June, the most recent arrival was an 18-year-old, Diana Paola Miguel, transported there by the University Medical Center in Tucson nine days after a van accident crushed her pelvis, which the Arizona hospital repaired. Supine on a gurney, she Ms. Paola was too tremblingly upset to talk.

Dr. Von Ahn said he believed that American hospitals were dumping patients that should be their responsibility. “It’s the same as the classic fall on the stairs, right?” he said. “You go to my home, you fall on my stairs and then you sue me. I am responsible.”

Shortly after Mr. Jiménez arrived, the Guatemalan hospital contacted his common-law wife, Fabiana Domingo Laureano, who lived in the city of Antigua with their two young sons, and asked her to come get him. Ms. Domingo, who was 27 at the time, was shocked to learn that her husband was back and terrified by the request. Then as now, she was eking out a living, selling traditional woven clothing in a marketplace while sharing a spare, concrete room with her sons in her parents’ humble home.

“I was already living from hand to mouth,” she said in an interview in Antigua, where her sons now supplement her income by selling cigarettes after school. “How could I possibly have given him what he needs?”

The couple met as teenagers in the highland village of Soloma. In the mid-1990s, Mr. Jiménez migrated with his wife’s family to Antigua, a volcano-ringed colonial city where tourism sustains the local economy. While she sold clothing, Mr. Jiménez worked as a bus driver’s assistant. Together, they earned about $6 a day, which was not enough to support their family, so Mr. Jiménez, with his wife’s brother, Francisco Gaspar, decided to follow a well-traveled path to the north. That is when he changed his name from Gervacio Gaspar to Luis Jiménez, which is how he is now known, even by his family.

After pledging to pay a coyote, or smuggler, about $2,000 each to ferry them into the United States, they crossed into California under cover of darkness and made their way to Encinitas, where Mr. Jiménez’s older brother lived, Mr. Gaspar said.

After the two men failed to find regular work, Mr. Gaspar began suffering panic attacks and returned to Guatemala; Mr. Jiménez decided to try his luck in Florida.

“Lamentably,” Mr. Gaspar said, “luck eluded him.”

After the hospital contacted Ms. Domingo, Telemundo, the Spanish-language network, called Ms. Domingo and offered to take her to Guatemala City. Shortly thereafter, the network showed her reunion with her husband.

“You are Maria by chance?” Mr. Jiménez said to his wife as the television cameras rolled.

“Fabiana,” she replied. Their two sons stood by her side, wide-eyed.

A few weeks later, Dr. Von Ahn said, the hospital discharged Mr. Jiménez “because we needed the bed,” transferring him to another public hospital, San Juan de Dios. That is where Mr. Jiménez’s brother, Enrique Lucas Gervacio, found him when he made his way down from the mountains by bus.

“He was lying in the hallway on a stretcher, covered in his own excrement,” Mr. Lucas said. “So we cleaned him up and we brought him home.”

In Favor of Jiménez

In May, 2004, a Florida appeals court overruled Judge Fennelly.

The Fourth District Court of Appeal found that the Florida state judge had overstepped his bounds because deportation is the prerogative of the federal government. The court also declared that no evidence supported the hospital’s assertion that Mr. Jiménez would receive appropriate care in Guatemala; the discharge plan, the ruling said, was not detailed enough to satisfy federal requirements or the hospital’s own rules.

The appeals court voided the judge’s order although, given that Mr. Jiménez was already back in Guatemala, that action came too late for him.

It might affect others, though. The decision has become what is known legally as a case of first impression on the issue of hospital repatriations.

John DeLeon, a lawyer who advises the consulates of Mexico, Honduras and Guatemala in Miami, said he now referred to it when he received calls from hospitals looking to discharge seriously injured or ill immigrants.

“I now write I call my Montejo Gaspar letter,” he said. “It’s a letter that says, ‘Listen, don’t take action to dump this individual because you’ll be risking legal action. The law is now that hospitals can’t dump immigrant patients without securing appropriate after-care. If somebody has a serious illness and needs continuing care, a hospital can’t simply discharge them onto the street, much less put them on a plane.’ ”

Mr. DeLeon said that he was “bombarded by such cases,” adding that he was investigating another medical repatriation by Martin Memorial, which took place two weeks ago “behind the back of the Mexican government.”

Martin Memorial confirmed that on July 16 they flew Neptali Díaz, a severely brain-injured patient to Mexico. A court order authorized Mr. Diaz’s transfer to an unspecified Mexican hospital, ending the man’s 859-day, $2 million stay at Martin Memorial.

After the ruling in Mr. Jiménez’s favor, Martin Memorial did not appeal. But the case did not go away. The appeals court ruling set the stage for a personal injury lawsuit, taken on by Searcy, Denney, Scarola, Barnhart & Shipley in West Palm Beach.

With that established firm behind him, Mr. Gaspar initiated a false imprisonment action claiming that his cousin was essentially kidnapped by the hospital and smuggled out of the country in a kind of medical rendition. Since then, appeals judges have again ruled in Mr. Jiménez’s favor, stating the hospital can be sued for punitive damages as well as for the cost of his medical care.

This infuriates Ms. Plato Nicosia, the hospital administrator, who said it was Mr. Jiménez’s family who owes the hospital money and not vice versa. “Should they win, we would like them to take those damages and pay his hospital bill,” she said.

Jack Scarola, representing Mr. Jiménez’s guardian, said that he empathized with the hospital’s “significant economic burden” but said that it was the “quid pro quo” of accepting Medicare and Medicaid funds to help finance the hospital’s services. (About 45 percent of Martin Memorial’s net operating revenues came from Medicare and Medicaid last year, based on state data.)

“Also,” he continued, “they chose the wrong way to deal with it. The right way would have been through the Legislature. There is no program in place to appropriately distribute care to undocumented persons who are catastrophically injured, and there should be. But you don’t stick a brain-injured immigrant on a private plane and spirit him out of the country in the predawn hours.”

Weighing Quality of Life

The journey to Jolomcú is an arduous one, as Mr. Jiménez’s new legal team discovered when several members — a lawyer, a paralegal, a priest and a bioethicist — first traveled there to meet him.

After a five-hour drive north from Guatemala City to Huehuetenango and then a winding trip, filled with hairpin turns on cliff-hugging roads up and over the Cuchumatán Mountains, they arrived at the provincial city of Soloma.

From there, the road to Mr. Jiménez’s hamlet only goes so far, and the trip must be completed on foot, up and down a rutted dirt path through goat-strewn meadows. The Americans arrived at the top panting. There, awaiting them, in an idyllically situated one-room brick house, was Mr. Jiménez, a broad grin lighting up his face.

“The first striking thing was his disposition: He was very, very happy,” said the Rev. Frank O’Loughlin, who pastored migrant workers in South Florida for decades. “Then, the second thing, he was well cared for. What I did was I got down over him and hugged him but also smelled. And there were no bedsores. Nothing was malodorous.”

As they drove back to Huehuetenango, Marnie R. Poncy, a nurse-lawyer who runs a bioethics law project in Palm Beach County, offered her view: “I said, ‘His quality of life is better than it would be in an American nursing home.’ ”

“But I hazarded a guess that his longevity of existence was probably severely curtailed,” she said.

Still, the team reached a conclusion that surprised them: “There was no real compelling reason to think of bringing him back to Florida,” Father O’Loughlin said. “We needed to focus on getting help to him or him to help in Guatemala.”

Help has been slow in arriving.

When The Times took the trek to visit him in late June, Mr. Jiménez had not budged from his hilltop home since returning there and no medical professional had visited him, either. With his mother too frail to move him into his wheelchair, his life had shrunken to the confines of his bed, across from his mother’s.

During the visit, Mr. Jiménez, wearing a nubby Adidas hat and a ski jacket, sat wrapped in a Guatemalan blanket; his mother, who wore a traditional woven skirt, with a floral scarf braided through her long gray hair, stood by his side. She patted his head; he reached out to pick lint from her sweater.

A few days prior, he had suffered a particularly violent seizure.

“He was almost dead,” his mother, Mrs. Gervacio, said in Kanjobal, which was translated into Spanish by a school principal serving as interpreter. “For many years, I am caring for him like he is a baby, changing his diaper, washing him. But this is worse. I am worried to leave him alone at all.”

She is right to worry, said physicians consulted for this article. Patients suffering seizure disorders run the risk of injuring themselves — and of increasing their brain damage.

Still, Mrs. Gervacio does leave from time to time, she said, to go to Mass, shutting the door behind her and hoping for the best.

“It scares me a lot when you leave, Mama!” Mr. Jiménez blurted out, revealing that he was intently following the conversation that at first took place as if he were not there.

Given that Mr. Jiménez’s mother’s health is failing, the family worries about the future, too. And Mr. Jiménez shares their concern. “The day my mother is no longer, what’s going to happen to me?” he said. “This is what I have on my mind.”

Mr. Jiménez, whose memory is patchy, said he remembered nothing about his time in the United States — not Indiantown, not his job as a gardener, not the accident and not the hospital.

He does, remember the dreams that propelled his migration, and he expressed them eloquently: “I headed north like a peasant with a heavy bundle on his back, bent over, determined to better himself,” he said. “Other people had things so I thought, ‘Why not me?’ But now I regret it. Maybe God was punishing me for my illusions.”

“No, Luis,” the interpreter interjected, “it was just chance, an accident, a car accident.”

In Guatemala City, Dr. Garcés, the public health advocate, said that he was not surprised that, as he had predicted, Mr. Jiménez never received further medical care. “That’s the usual story of patients that are released from the National Orthopedic Hospital,” he said.

Dr. Garcés called Mr. Jiménez’s repatriation “inhumane.”

“In cases like that, if you cut the medical care, you’re hurting that person,” Dr. Garcés said. “You’re doing just the opposite of what the medical system should do. That goes against every international convention of human rights and health. To send him to Guatemala was to send him to very poor living and health conditions and probably he will die because of that, and that’s not fair.”

Without evaluation, doctors cannot know what potential for rehabilitation — or survival — Mr. Jiménez possesses.

If Mr. Jiménez’s guardian were to prevail in the lawsuit, “it would be possible to set up a good health care arrangement for him because in private practice we have all types of specialties that he needs,” Dr. Garcés said. “And transportation could be arranged.” But the case could drag on for years.

On the day of The Times’s visit, before Mr. Jiménez ate a lunch of eggs, tortillas and sugar water, Mr. Banks, the lawyer, gave him a present from his cousins in Florida — a plastic bag bulging with tube socks, undershirts and oversize sweatpants. Mr. Jiménez fingered the clothing with little interest but when a reporter began to read him the accompanying letter in Spanish, he snatched it excitedly from her hands.

Much to the surprise of his visitors, Mr. Jiménez, despite his brain injury, could read. He smoothed out the yellow legal paper from Mr. Gaspar and began: “I am sending you some little things. Luis, I hope that you like them.”

At first, Mr. Jiménez read haltingly, then more fluidly. Later, when all his visitors had gone outside, he read the ending aloud again to himself.

“I want to tell you,” he read, “that we miss you and love you a lot. May God continue to bless you.”

Mr. Jiménez smiled, and repeated, softly, “May God continue to bless you.”

Pilar Conci contributed reporting.

Immigrants Deported, by U.S. Hospitals, NYT, 3.8.2008, http://www.nytimes.com/2008/08/03/us/03deport.html