History > 2011 > USA > Health (IV)

Supreme Court

Is Asked to Rule on Health Care

September 28, 2011
The New York Times
By ADAM LIPTAK

WASHINGTON — The Obama administration asked the Supreme Court on Wednesday to hear a case concerning the 2010 health care overhaul law. The development, which came unexpectedly fast, makes it all but certain that the court will soon agree to hear one or more cases involving challenges to the law, with arguments by the spring and a decision by June, in time to land in the middle of the 2012 presidential campaign.

The Justice Department said the justices should hear its appeal of a decision by a three-judge panel of the United States Court of Appeals for the 11th Circuit, in Atlanta, that struck down the centerpiece of the law by a 2-to-1 vote.

“The department has consistently and successfully defended this law in several courts of appeals, and only the 11th Circuit Court of Appeals has ruled it unconstitutional,” the Justice Department said in a statement. “We believe the question is appropriate for review by the Supreme Court.

“Throughout history, there have been similar challenges to other landmark legislation, such as the Social Security Act, the Civil Rights Act and the Voting Rights Act, and all of those challenges failed,” the statement continued. “We believe the challenges to the Affordable Care Act — like the one in the 11th Circuit — will also ultimately fail and that the Supreme Court will uphold the law.”

On Monday, the administration announced that it would not seek review from the full 11th Circuit. Its Supreme Court petition was not due until November.

The administration did not explain why it did not take routine litigation steps that might have slowed the progress of the challenges enough to avoid a decision in the current Supreme Court term. It did say in its brief that the 11th Circuit’s decision striking down the central piece of a comprehensive regulatory scheme created “a matter of grave national importance.”

The political calculus is complicated. A decision striking down President Obama’s signature legislative achievement only months before the election would doubtless be a blow. But a decision from a court divided along ideological lines could further energize voters already critical of last year’s 5-to-4 campaign finance decision, Citizens United.

A decision upholding the law might also both help and hurt Mr. Obama’s chances. It would represent vindication, but it could also spur some voters to redouble their efforts to elect candidates committed to repealing it.

The three federal courts of appeal that have issued decisions on the law so far have all reached different conclusions, with one upholding it, a second — the 11th Circuit— striking it down in part, and a third saying that threshold legal issues barred an immediate ruling. A fourth challenge to the law was heard last week by the United States Court of Appeals for the District of Columbia Circuit.

The views of the appeals court judges have not uniformly tracked the presumed views of the presidents who appointed them. Judge Jeffrey S. Sutton, appointed by President George W. Bush, joined the majority in a 2-to-1 decision of the United States Court of Appeals for the Sixth Circuit, in Cincinnati, which upheld the law. Judge Frank M. Hull of the 11th Circuit was appointed by President Bill Clinton and was an author of its majority opinion.

Also on Wednesday, two sets of plaintiffs who had won on the core issue in the 11th Circuit filed their own requests for Supreme Court review.

“Time is of the essence,” wrote Paul D. Clement, a former United States solicitor general who represents 26 states that are challenging the law. “The grave constitutional questions surrounding the A.C.A. and its novel exercise of federal power will not subside until this court resolves them.”

The 11th Circuit, in a decision issued in August, ruled that a part of law requiring the purchase of insurance — the so-called individual mandate — was an unconstitutional exercise of Congressional power.

The majority decision, written by Chief Judge Joel F. Dubina and Judge Hull, said, “We have not found any generally applicable, judicially enforceable limiting principle that would permit us to uphold the mandate without obliterating the boundaries inherent in the system of enumerated Congressional powers.”

The United States solicitor general, Donald B. Verrilli Jr., disputed that analysis in the administration’s brief. The law, he wrote, requires most people to buy insurance “rather than rely on a combination of attempted self-insurance and the back-stop of care paid for by other market participants.” The individual mandate, he went on, “like the act as a whole, thus regulates economic conduct that substantially affects interstate commerce.”

The 11th Circuit ruled against the 26 states and the other plaintiffs on two points. It said its ruling on the individual mandate did not require “wholesale invalidation” of the law, and it upheld the law’s expansion of the Medicaid program.

The petition from the 26 states and a second one, from the National Federation of Independent Business and two individuals, sought review on the issues they had lost in the 11th Circuit. The administration’s brief and those of the plaintiffs mostly addressed different questions and talked past one another. Each side now has a chance to respond and tell the court its views about whether the issues identified by its adversaries warrant review.

But almost all of the usual signs indicate that the court will agree to hear at least one challenge to the law: a federal appeals court has struck down a major piece of federal legislation, the lower courts are divided about its constitutionality, and all sides, including the federal government itself, agree that review is warranted.

It is less clear which case the justices will agree to hear. Also pending before the justices is a petition from several individuals and the Thomas More Law Center, which describes itself as a defender of “America’s Christian heritage and moral values,” seeking review of the Sixth Circuit decision.

Nor is it clear which issues the justices will focus on. Simply agreeing to hear a case does not guarantee that the Supreme Court will decide whether Congress had the power under the Constitution’s commerce clause to enact the individual mandate, the question at the heart of the challenges.

The court could agree with some lower courts that some or all of the plaintiffs lack standing to sue or that the central issue is not yet ripe for decision. The United States Court of Appeals for the Fourth Circuit, in Richmond, Va., for instance, ruled this month that it was premature to decide the central question, citing a federal law allowing suits only after certain taxes and penalties are due. The administration found itself in an awkward position on this question before the Supreme Court, as it had initially pressed but later abandoned the argument.

In Wednesday’s brief, Mr. Verrilli said the administration did not think it should win on the Fourth Circuit’s theory. It nonetheless suggested that the court consider the issue and perhaps appoint a lawyer to present arguments in favor of it, as the court occasionally does when the parties agree on a significant issue that could alter the outcome of the eventual decision.

    Supreme Court Is Asked to Rule on Health Care, NYT, 28.9.2011,
    http://www.nytimes.com/2011/09/29/us/justice-dept-asks-supreme-court-for-health-care-ruling.html

Wilson Greatbatch, Pacemaker Inventor, Dies at 92

September 28, 2011
The New York Times
By BARNABY FEDER

Wilson Greatbatch, a professed “humble tinkerer” who, working in his barn in 1958, designed the first practical implantable pacemaker, a device that has preserved millions of lives, died on Tuesday at his home in Williamsville, N.Y. He was 92.

His death was confirmed by his daughter, Anne Maciariello.

Mr. Greatbatch patented more than 325 inventions, notably a long-life lithium battery used in a wide range of medical implants. He created tools used in AIDS research and a solar-powered canoe, which he took on a 160-mile voyage on the Finger Lakes in New York to celebrate his 72nd birthday.

In later years, he invested time and money in developing fuels from plants and supporting work at the University of Wisconsin in Madison on helium-based fusion reaction for power generation.

He also visited with thousands of schoolchildren to talk about invention, and when his eyesight became too poor for him to read in 2006, he continued to review papers by graduate engineering students on topics that interested him by having his secretary read them aloud.

“I’m beginning to think I may not change the world, but I’m still trying,” Mr. Greatbatch said in a telephone interview in 2007.

He was best known for his pacemaker breakthrough, an example of Pasteur’s observation that “chance favors the prepared mind.”

Mr. Greatbatch’s crucial insight came in 1956, when he was an assistant professor in electrical engineering at the University of Buffalo. While building a heart rhythm recording device for the Chronic Disease Research Institute there, he reached into a box of parts for a resistor to complete the circuitry. The one he pulled out was the wrong size, and when he installed it, the circuit it produced emitted intermittent electrical pulses.

Mr. Greatbatch immediately associated the timing and rhythm of the pulses with a human heartbeat, he wrote in a memoir, “The Making of the Pacemaker,” published in 2000. That brought to mind lunchtime chats he had had with researchers about the electrical activity of the heart while he was working at an animal behavior laboratory as an undergraduate at Cornell in 1951.

Back then, he had surmised that electrical stimulation could compensate for breakdowns in the heart’s natural circuitry. But he did not believe the electronic gear of that era could be bundled into a stimulator for continuous use, much less into a device small and reliable enough to implant.

After the unintended circuit rekindled his interest, Mr. Greatbatch began experiments to shrink the equipment and shield it from body fluids. On May 7, 1958, doctors at the Veterans Administration hospital in Buffalo demonstrated that a version he had created, of just two cubic inches, could take control of a dog’s heartbeat.

Mr. Greatbatch soon learned he was in a race with other researchers in the United States and Sweden to perfect a practical implant for humans. Relying on $2,000 in savings and a large vegetable garden to help feed his growing family, he went to work full time on the device in the barn behind his home in Clarence, N.Y. He was assisted by his wife, Eleanor, who administered shock tests for the pacemaker’s transistors by first taping them to a bedroom wall.

His major collaborator was Dr. William C. Chardack, chief of surgery at the hospital where he had first tested the device on dogs. Mr. Greatbatch’s device was implanted in 10 human patients in 1960, including two children. The device was licensed in 1961 to Medtronic, a Minneapolis company that had developed an external pacemaker. Buoyed by the new implanted devices, Medtronic went on to become the world leader in cardiac stimulation and defibrillation.

The American Heart Association says that more half a million pacemakers are now implanted every year.

Mr. Greatbatch profited handsomely from his invention and invested in other projects. In one, he adapted for human use equipment he had designed to monitor the health of test monkeys launched into space by the government. But he soon returned to address a crucial limitation in his pacemaker: its zinc-mercury batteries, which could drain in as little as two years.

Mr. Greatbatch acquired rights to a lithium iodine design invented in 1968 by researchers in Baltimore, and by 1972 he had re-engineered the device — it had been potentially explosive — into a compact sealed package that could be implanted in the body for a decade or more.

A company he founded in 1970 to make the batteries, today called Greatbatch Inc., became a leading power-component supplier for the entire medical device industry and later expanded into related businesses.

Mr. Greatbatch often told students that 9 out of 10 of his ideas failed, either technically or commercially. His last major interest, helium fusion experiments, may be the longest shot of all.

The reaction is theoretically attractive; unlike nuclear fusion, it produces no radioactive materials. But the raw material for it is an isotope of helium that exists only in trace amounts on earth. For the fusion to generate significant amounts of power, the isotope would have to be mined on the moon.

Wilson Greatbatch was born on Sept. 6, 1919, in Buffalo, the only child of Warren Greatbatch, a construction contractor who had immigrated from England, and the former Charlotte Recktenwalt, who worked as a secretary and named him in honor of Woodrow Wilson.

As a teenager, Mr. Greatbatch became fascinated with radio technology. He put his skills to use in the Navy during World War II working on shipboard communications and guidance systems before being assigned to fly combat missions. Mr. Greatbatch, a Presbyterian, cited the seeming randomness of death in wartime as the inspiration for his religious faith.

Returning from the war, Mr. Greatbatch married Eleanor Wright, his childhood sweetheart, and worked for a year as a telephone repairman before entering Cornell.

Nothing in Mr. Greatbatch’s grades foretold success, but that was partly because he was also working at outside jobs to support his family. The jobs kept him abreast of developments in the electronics industry. After earning a master of science degree in electrical engineering at the University of Buffalo, he became manager of the electronics division of the Taber Instrument Corporation in Buffalo.

When Taber was unwilling to take on the risk of his pacemaker implant experiments, he began his life as an independent inventor and entrepreneur.

Eleanor Greatbatch died in January. Besides his daughter, Anne, of Sarasota, Fla., Mr. Greatbatch is survived by three sons, Warren, of Buffalo, Kenneth, of Swanzey, N.H., and John, of Paris, Ky.; 12 grandchildren, and eight great-grandchildren. Another son, Peter, died in 1998.

Mr. Greatbatch saw a divine hand in much of what he did. When experiments bore no fruit, he wrote, it was impossible to know whether what looked like failure had not been intended by God as a contribution to success in the future. And he saw invention as an end in itself.

“To ask for a successful experiment, for professional stature, for financial reward or for peer approval,” he wrote in his memoir, “is asking to be paid for what should be an act of love.”

 

Daniel E. Slotnik contributed reporting.

    Wilson Greatbatch, Pacemaker Inventor, Dies at 92, NYT, 28.9.2011,
    http://www.nytimes.com/2011/09/28/business/wilson-greatbatch-pacemaker-inventor-dies-at-92.html

U.S. Health Insurance Cost Rises Sharply, Study Finds

September 27, 2011
The New York Times
By REED ABELSON

The cost of health insurance for many Americans this year climbed more sharply than in previous years, outstripping any growth in workers’ wages and adding more uncertainty about the pace of rising medical costs.

A new study by the Kaiser Family Foundation, a nonprofit research group that tracks employer-sponsored health insurance on a yearly basis, shows that the average annual premium for family coverage through an employer reached $15,073 in 2011, an increase of 9 percent over the previous year.

“The open question is whether that’s a one-time spike or the start of a period of higher increases,” said Drew Altman, the chief executive of the Kaiser foundation.

The steep increase in rates is particularly unwelcome at a time when the economy is still sputtering and unemployment continues to hover at about 9 percent. Many businesses cite the high cost of coverage as a factor in their decision not to hire, and health insurance has become increasingly unaffordable for more Americans. Over all, the cost of family coverage has about doubled since 2001, when premiums averaged $7,061, compared with a 34 percent gain in wages over the same period.

How much the new federal health care law pushed by President Obama is affecting insurance rates remains a point of debate, with some analysts suggesting that insurers have raised prices in anticipation of new rules that would, in 2012, require them to justify any increase of more than 10 percent.

In addition to increases caused by insurers getting ahead of potential costs, some of the law’s provisions that are already in effect -- like coverage for adult children up to 26 years of age and prevention services like mammogram screening -- have contributed to higher expenses for some employers.

The Kaiser survey includes both big and small companies using employer-sponsored coverage representing about 60 percent of all insured Americans of working age. The annual growth in premiums, according to the survey, had slowed in recent years to 5 percent, rising just 3 percent in 2010, in part due to the lingering effects of the recession. After years of double-digit increases, the moderation was a welcome relief.

The unexpected increase in premiums raises questions about whether health care costs are, in fact, stabilizing at all, as people have postponed going to the doctor or dentist and have put off expensive procedures. “No one quite knows,” said Mr. Altman.

Throughout this year, major health insurers have defended higher premiums — and higher profits — saying that their expenses would rise once the economy recovered and people believed they could again afford medical care. The struggling economy will probably keep suppressing demand for medical care, particularly as people pay a larger share of their own medical bills through higher deductibles and co-payments, according to benefits consultants and others. About three-quarters of workers now pay part of the bill when they go see a doctor, and nearly a third have a deductible of at least $1,000 if they have single coverage, up from just one in 10 in 2006, according Kaiser.

Although demand for care appears to be growing relatively slowly, insurers and benefit consultants also say prices for medical care continue to climb as prescription drug makers and hospitals charge more. “If they’re a popular brand or anchor hospital, they’re going to negotiate a significant increase if they can,” said Edward A. Kaplan, a benefits expert with the Segal Company, which recently surveyed insurers about medical costs.

The question for employers and insurers is whether the lackluster economy, as well as recent efforts by employer and insurers to better manage the medical care of workers, will keep premiums increasing at a more moderate level. Early responses to a survey by Mercer, a consulting firm, suggest employers are expecting the cost of providing health benefits to go up about 5 percent next year, according to Beth Umland, Mercer’s director of research for health and benefits. These companies may be factoring in the more pessimistic view of the economy, she said, where any recovery seems further off than it did a few months ago.

Employers are reporting that their workers are using less medical care, said Ms. Umland, but they and insurers have been slow to estimate costs that reflect the lower demand. “It always takes a while for underwriting to catch up with reality,” she said.

Some small business say they expect their premiums to moderate, but only because of changes in their work force — partly caused by younger, healthier employees — that make it less likely that the companies will incur high medical claims. “Up until last year, we saw very hefty increases -- double digits,” said Heather Gombos, an executive for R. M. Jones & Company and affiliated businesses in New Britain, Conn., a group that insures about 50 of its 80 employees.

Family coverage is now running $12,000 a year, Ms. Gombos said, and she is waiting to see what rate increases her insurer proposes for the coming year. She thinks premiums will not rise as sharply in 2012. “What it comes down to is we’ve had some good luck,” she said.

Some businesses say they anticipate relief from higher costs in the coming year for a variety of reasons. At Ogilvy & Mather, the New York advertising firm, the company believes its efforts to encourage wellness and better oversee its employees’ health through an on-site medical clinic are paying off. "We are not anticipating any cost increase for employer and employee," said Gerri Stone, the senior partner who oversees the firm’s benefits strategy.

Ms. Stone acknowledged that the firm’s 3,600 employees were relatively young and healthy, helping it avoid some of the sharp increases experienced by other businesses. "We’ve never gone into the double digits," she said. Family coverage runs about $16,000 a year, she said.

Insurers and benefits consultants say, however, it is difficult to predict whether health care demand will again take off when the economy rebounds or whether some other factor is at play. "We’ve seen a moderation in the increase in health services, particularly in discretionary services," said Tom Richards, an executive with Cigna. While he attributes some of the moderation to the poor economy, he says the increase in cost-sharing by employees and programs that more closely monitor their health could be having a more permanent impact.

The question, he said, is "what is the economy going to be and what is the new normal."

Obama administration officials argue that new regulations are forcing insurers to be more circumspect about raising rates. Insurers seeking to raise premiums next year by more than the 10 percent maximum will have to publicly justify their rate increases, and the new law requires the companies to spend at least 80 cents of every dollar they collect in premiums on medical care. If they end up taking too much in premiums, they will have to refund the money to consumers.

But employers and others say much more still needs to be done to control overall costs, especially when workers’ wages are essentially flat. Of the $15,073 in average premiums paid for family coverage, Kaiser found that employees paid $4,129 towards the cost, in addition to whatever out-of-pocket costs they shouldered.

“We’re going to continue to have this yawning gap,” said Helen Darling, the chief executive of the National Business Group on Health, which represents employers that provide health coverage to their workers. Health care costs continue to climb much faster than overall inflation, she noted.

“The health economy acts as if it’s a boom economy,” she said.

    U.S. Health Insurance Cost Rises Sharply, Study Finds, NYT, 27.9.2011,
    http://www.nytimes.com/2011/09/28/business/health-insurance-costs-rise-sharply-this-year-study-shows.html

Is Junk Food Really Cheaper?

September 24, 2011
The New York Times
By MARK BITTMAN

THE “fact” that junk food is cheaper than real food has become a reflexive part of how we explain why so many Americans are overweight, particularly those with lower incomes. I frequently read confident statements like, “when a bag of chips is cheaper than a head of broccoli ...” or “it’s more affordable to feed a family of four at McDonald’s than to cook a healthy meal for them at home.”

This is just plain wrong. In fact it isn’t cheaper to eat highly processed food: a typical order for a family of four — for example, two Big Macs, a cheeseburger, six chicken McNuggets, two medium and two small fries, and two medium and two small sodas — costs, at the McDonald’s a hundred steps from where I write, about $28. (Judicious ordering of “Happy Meals” can reduce that to about $23 — and you get a few apple slices in addition to the fries!)

In general, despite extensive government subsidies, hyperprocessed food remains more expensive than food cooked at home. You can serve a roasted chicken with vegetables along with a simple salad and milk for about $14, and feed four or even six people. If that’s too much money, substitute a meal of rice and canned beans with bacon, green peppers and onions; it’s easily enough for four people and costs about $9. (Omitting the bacon, using dried beans, which are also lower in sodium, or substituting carrots for the peppers reduces the price further, of course.)

Another argument runs that junk food is cheaper when measured by the calorie, and that this makes fast food essential for the poor because they need cheap calories. But given that half of the people in this country (and a higher percentage of poor people) consume too many calories rather than too few, measuring food’s value by the calorie makes as much sense as measuring a drink’s value by its alcohol content. (Why not drink 95 percent neutral grain spirit, the cheapest way to get drunk?)

Besides, that argument, even if we all needed to gain weight, is not always true. A meal of real food cooked at home can easily contain more calories, most of them of the “healthy” variety. (Olive oil accounts for many of the calories in the roast chicken meal, for example.)In comparing prices of real food and junk food, I used supermarket ingredients, not the pricier organic or local food that many people would consider ideal. But food choices are not black and white; the alternative to fast food is not necessarily organic food, any more than the alternative to soda is Bordeaux.

The alternative to soda is water, and the alternative to junk food is not grass-fed beef and greens from a trendy farmers’ market, but anything other than junk food: rice, grains, pasta, beans, fresh vegetables, canned vegetables, frozen vegetables, meat, fish, poultry, dairy products, bread, peanut butter, a thousand other things cooked at home — in almost every case a far superior alternative.

“Anything that you do that’s not fast food is terrific; cooking once a week is far better than not cooking at all,” says Marion Nestle, professor of food studies at New York University and author of “What to Eat.” “It’s the same argument as exercise: more is better than less and some is a lot better than none.”

THE fact is that most people can afford real food. Even the nearly 50 million Americans who are enrolled in the Supplemental Nutrition Assistance Program (formerly known as food stamps) receive about $5 per person per day, which is far from ideal but enough to survive. So we have to assume that money alone doesn’t guide decisions about what to eat. There are, of course, the so-called food deserts, places where it’s hard to find food: the Department of Agriculture says that more than two million Americans in low-income rural areas live 10 miles or more from a supermarket, and more than five million households without access to cars live more than a half mile from a supermarket.

Still, 93 percent of those with limited access to supermarkets do have access to vehicles, though it takes them 20 more minutes to travel to the store than the national average. And after a long day of work at one or even two jobs, 20 extra minutes — plus cooking time — must seem like an eternity.

Taking the long route to putting food on the table may not be easy, but for almost all Americans it remains a choice, and if you can drive to McDonald’s you can drive to Safeway. It’s cooking that’s the real challenge. (The real challenge is not “I’m too busy to cook.” In 2010 the average American, regardless of weekly earnings, watched no less than an hour and a half of television per day. The time is there.)

The core problem is that cooking is defined as work, and fast food is both a pleasure and a crutch. “People really are stressed out with all that they have to do, and they don’t want to cook,” says Julie Guthman, associate professor of community studies at the University of California, Santa Cruz, and author of the forthcoming “Weighing In: Obesity, Food Justice and the Limits of Capitalism.” “Their reaction is, ‘Let me enjoy what I want to eat, and stop telling me what to do.’ And it’s one of the few things that less well-off people have: they don’t have to cook.”

It’s not just about choice, however, and rational arguments go only so far, because money and access and time and skill are not the only considerations. The ubiquity, convenience and habit-forming appeal of hyperprocessed foods have largely drowned out the alternatives: there are five fast-food restaurants for every supermarket in the United States; in recent decades the adjusted for inflation price of fresh produce has increased by 40 percent while the price of soda and processed food has decreased by as much as 30 percent; and nearly inconceivable resources go into encouraging consumption in restaurants: fast-food companies spent $4.2 billion on marketing in 2009.

Furthermore, the engineering behind hyperprocessed food makes it virtually addictive. A 2009 study by the Scripps Research Institute indicates that overconsumption of fast food “triggers addiction-like neuroaddictive responses” in the brain, making it harder to trigger the release of dopamine. In other words the more fast food we eat, the more we need to give us pleasure; thus the report suggests that the same mechanisms underlie drug addiction and obesity.

This addiction to processed food is the result of decades of vision and hard work by the industry. For 50 years, says David A. Kessler, former commissioner of the Food and Drug Administration and author of “The End of Overeating,” companies strove to create food that was “energy-dense, highly stimulating, and went down easy. They put it on every street corner and made it mobile, and they made it socially acceptable to eat anytime and anyplace. They created a food carnival, and that’s where we live. And if you’re used to self-stimulation every 15 minutes, well, you can’t run into the kitchen to satisfy that urge.”

Real cultural changes are needed to turn this around. Somehow, no-nonsense cooking and eating — roasting a chicken, making a grilled cheese sandwich, scrambling an egg, tossing a salad — must become popular again, and valued not just by hipsters in Brooklyn or locavores in Berkeley. The smart campaign is not to get McDonald’s to serve better food but to get people to see cooking as a joy rather than a burden, or at least as part of a normal life.

As with any addictive behavior, this one is most easily countered by educating children about the better way. Children, after all, are born without bad habits. And yet it’s adults who must begin to tear down the food carnival.

The question is how? Efforts are everywhere. The People’s Grocery in Oakland secures affordable groceries for low-income people. Zoning laws in Los Angeles restrict the number of fast-food restaurants in high-obesity neighborhoods. There’s the Healthy Food Financing Initiative, a successful Pennsylvania program to build fresh food outlets in underserved areas, now being expanded nationally. FoodCorps and Cooking Matters teach young people how to farm and cook.

As Malik Yakini, executive director of the Detroit Black Community Food Security Network, says, “We’ve seen minor successes, but the food movement is still at the infant stage, and we need a massive social shift to convince people to consider healthier options.”

HOW do you change a culture? The answers, not surprisingly, are complex. “Once I look at what I’m eating,” says Dr. Kessler, “and realize it’s not food, and I ask ‘what am I doing here?’ that’s the start. It’s not about whether I think it’s good for me, it’s about changing how I feel. And we change how people feel by changing the environment.”

Obviously, in an atmosphere where any regulation is immediately labeled “nanny statism,” changing “the environment” is difficult. But we’ve done this before, with tobacco. The 1998 tobacco settlement limited cigarette marketing and forced manufacturers to finance anti-smoking campaigns — a negotiated change that led to an environmental one that in turn led to a cultural one, after which kids said to their parents, “I wish you didn’t smoke.” Smoking had to be converted from a cool habit into one practiced by pariahs.

A similar victory in the food world is symbolized by the stories parents tell me of their kids booing as they drive by McDonald’s.

To make changes like this more widespread we need action both cultural and political. The cultural lies in celebrating real food; raising our children in homes that don’t program them for fast-produced, eaten-on-the-run, high-calorie, low-nutrition junk; giving them the gift of appreciating the pleasures of nourishing one another and enjoying that nourishment together.

Political action would mean agitating to limit the marketing of junk; forcing its makers to pay the true costs of production; recognizing that advertising for fast food is not the exercise of free speech but behavior manipulation of addictive substances; and making certain that real food is affordable and available to everyone. The political challenge is the more difficult one, but it cannot be ignored.

What’s easier is to cook at every opportunity, to demonstrate to family and neighbors that the real way is the better way. And even the more fun way: kind of like a carnival.

    Is Junk Food Really Cheaper?, NYT, 24.9.2011,
    http://www.nytimes.com/2011/09/25/opinion/sunday/is-junk-food-really-cheaper.html

When Your Therapist Is Only a Click Away

September 23, 2011
The New York Times
By JAN HOFFMAN

THE event reminder on Melissa Weinblatt’s iPhone buzzed: 15 minutes till her shrink appointment.

She mixed herself a mojito, added a sprig of mint, put on her sunglasses and headed outside to her friend’s pool. Settling into a lounge chair, she tapped the Skype app on her phone. Hundreds of miles away, her face popped up on her therapist’s computer monitor; he smiled back on her phone’s screen.

She took a sip of her cocktail. The session began.

Ms. Weinblatt, a 30-year-old high school teacher in Oregon, used to be in treatment the conventional way — with face-to-face office appointments. Now, with her new doctor, she said: “I can have a Skype therapy session with my morning coffee or before a night on the town with the girls. I can take a break from shopping for a session. I took my doctor with me through three states this summer!”

And, she added, “I even e-mailed him that I was panicked about a first date, and he wrote back and said we could do a 20-minute mini-session.”

Since telepsychiatry was introduced decades ago, video conferencing has been an increasingly accepted way to reach patients in hospitals, prisons, veterans’ health care facilities and rural clinics — all supervised sites.

But today Skype, and encrypted digital software through third-party sites like CaliforniaLiveVisit.com, have made online private practice accessible for a broader swath of patients, including those who shun office treatment or who simply like the convenience of therapy on the fly.

One third-party online therapy site, Breakthrough.com, said it has signed up 900 psychiatrists, psychologists, counselors and coaches in just two years. Another indication that online treatment is migrating into mainstream sensibility: “Web Therapy,” the Lisa Kudrow comedy that started online and pokes fun at three-minute webcam therapy sessions, moved to cable (Showtime) this summer.

“In three years, this will take off like a rocket,” said Eric A. Harris, a lawyer and psychologist who consults with the American Psychological Association Insurance Trust. “Everyone will have real-time audiovisual availability. There will be a group of true believers who will think that being in a room with a client is special and you can’t replicate that by remote involvement. But a lot of people, especially younger clinicians, will feel there is no basis for thinking this. Still, appropriate professional standards will have to be followed.”

The pragmatic benefits are obvious. “No parking necessary!” touts one online therapist. Some therapists charge less for sessions since they, too, can do it from home, saving on gas and office rent. Blizzards, broken legs and business trips no longer cancel appointments. The anxiety of shrink-less August could be, dare one say ... curable?

Ms. Weinblatt came to the approach through geographical necessity. When her therapist moved, she was apprehensive about transferring to the other psychologist in her small town, who would certainly know her prominent ex-boyfriend. So her therapist referred her to another doctor, whose practice was a day’s drive away. But he was willing to use Skype with long-distance patients. She was game.

Now she prefers these sessions to the old-fashioned kind.

But does knowing that your therapist is just a phone tap or mouse click away create a 21st-century version of shrink-neediness?

“There’s that comfort of carrying your doctor around with you like a security blanket,” Ms. Weinblatt acknowledged. “But,” she added, “because he’s more accessible, I feel like I need him less.”

The technology does have its speed bumps. Online treatment upends a basic element of therapeutic connection: eye contact.

Patient and therapist typically look at each other’s faces on a computer screen. But in many setups, the camera is perched atop a monitor. Their gazes are then off-kilter.

“So patients can think you’re not looking them in the eye,” said Lynn Bufka, a staff psychologist with the American Psychological Association. “You need to acknowledge that upfront to the patient, or the provider has to be trained to look at the camera instead of the screen.”

The quirkiness of Internet connections can also be an impediment. “You have to prepare vulnerable people for the possibility that just when they are saying something that’s difficult, the screen can go blank,” said DeeAnna Merz Nagel, a psychotherapist licensed in New Jersey and New York. “So I always say, ‘I will never disconnect from you online on purpose.’ You make arrangements ahead of time to call each other if that happens.”

Still, opportunities for exploitation, especially by those with sketchy credentials, are rife. Solo providers who hang out virtual shingles are a growing phenomenon. In the Wild Web West, one site sponsored a contest asking readers to post why they would seek therapy; the person with the most popular answer would receive six months of free treatment. When the blogosphere erupted with outrage from patients and professionals alike, the site quickly made the applications private.

Other questions abound. How should insurance reimburse online therapy? Is the therapist complying with licensing laws that govern practice in different states? Are videoconferencing sessions recorded? Hack-proof?

Another draw and danger of online therapy: anonymity. Many people avoid treatment for reasons of shame or privacy. Some online therapists do not require patients to fully identify themselves. What if those patients have breakdowns? How can the therapist get emergency help to an anonymous patient? “A lot of patients start therapy and feel worse before they feel better,” noted Marlene M. Maheu, founder of the TeleMental Health Institute, which trains providers and who has served on task forces to address these questions. “It’s more complex than people imagine. A provider’s Web site may say, ‘I won’t deal with patients who are feeling suicidal.’ But it’s our job to assess patients, not to ask them to self-diagnose.” She practices online therapy, but advocates consumer protections and rigorous training of therapists.

Psychologists say certain conditions might be well-suited for treatment online, including agoraphobia, anxiety, depression and obsessive-compulsive disorder. Some doctors suggest that Internet addiction or other addictive behaviors could be treated through videoconferencing.

Others disagree. As one doctor said, “If I’m treating an alcoholic, I can’t smell his breath over Skype.”

Cognitive behavioral therapy, which can require homework rather than tunneling into the patient’s past, seems another candidate. Tech-savvy teenagers resistant to office visits might brighten at seeing a therapist through a computer monitor in their bedroom. Home court advantage.

Therapists who have tried online therapy range from evangelizing standard-bearers, planting their stake in the new future, to those who, after a few sessions, have backed away. Elaine Ducharme, a psychologist in Glastonbury, Conn., uses Skype with patients from her former Florida practice, but finds it disconcerting when a patient’s face becomes pixilated. Dr. Ducharme, who is licensed in both states, will not videoconference with a patient she has not met in person. She flies to Florida every three months for office visits with her Skype patients.

“There is definitely something important about bearing witness,” she said. “There is so much that happens in a room that I can’t see on Skype.”

Dr. Heath Canfield, a psychiatrist in Colorado Springs, also uses Skype to continue therapy with some patients from his former West Coast practice. He is licensed in both locations. “If you’re doing therapy, pauses are important and telling, and Skype isn’t fast enough to keep up in real time,” Dr. Canfield said. He wears a headset. “I want patients to know that their sound isn’t going through walls but into my ears. I speak into a microphone so they don’t feel like I’m shouting at the computer. It’s not the same as being there, but it’s better than nothing. And I wouldn’t treat people this way who are severely mentally ill.”

Indeed, the pitfalls of videoconferencing with the severely mentally ill became apparent to Michael Terry, a psychiatric nurse practitioner, when he did psychological evaluations for patients throughout Alaska’s Eastern Aleutian Islands. “Once I was wearing a white jacket and the wall behind me was white,” recalled Dr. Terry, an associate clinical professor at the University of San Diego. “My face looked very dark because of the contrast, and the patient thought he was talking to the devil.”

Another time, lighting caused a halo effect. “An adolescent thought he was talking to the Holy Spirit, that he had God on the line. It fit right into his delusions.”

Johanna Herwitz, a Manhattan psychologist, tried Skype to augment face-to-face therapy. “It creates this perverse lower version of intimacy,” she said. “Skype doesn’t therapeutically disinhibit patients so that they let down their guard and take emotional risks. I’ve decided not to do it anymore.”

Several studies have concluded that patient satisfaction with face-to-face interaction and online therapy (often preceded by in-person contact) was statistically similar. Lynn, a patient who prefers not to reveal her full identity, had been seeing her therapist for years. Their work deepened into psychoanalysis. Then her psychotherapist retired, moving out of state.

Now, four times a week, Lynn carries her laptop to an analyst’s unoccupied office (her insurance requires that a local provider have some oversight). She logs on to an encrypted program at Breakthrough.com and clicks through until she reads an alert: “Talk now!”

Hundreds of miles away, so does her analyst. Their faces loom, side by side on each other’s monitors. They say hello. Then Lynn puts her laptop on a chair and lies down on the couch. Just the top of her head is visible to her analyst.

Fifty minutes later the session ends. “The screen is asleep so I wake it up and see her face,” Lynn said. “I say goodbye and she says goodbye. Then we lean in to press a button and exit.”

As attenuated as this all may seem, Lynn said, “I’m just grateful we can continue to do this.”

This article has been revised to reflect the following correction:

Correction: September 24, 2011

A caption on a picture in an earlier version of this article incorrectly described the technology used by Marlene M. Maheu to communicate remotely with patients. She uses video conferencing, not Skype.

    When Your Therapist Is Only a Click Away, NYT, 23.9.2011,
    http://www.nytimes.com/2011/09/25/fashion/therapists-are-seeing-patients-online.html

Investing in Helping Adults With Autism

September 23, 2011
The New York Times

To the Editor:

“Autistic and Seeking a Place in an Adult World” (front page, Sept. 18) painted a poignant picture of a dilemma facing over three million Americans today — what happens when my child with autism becomes an adult with autism?

For decades, autism’s focus has centered mostly on young children, with shocking increases in prevalence announced on a regular basis. This “autism boomlet” is now entering adulthood in droves, placing significant demands on already strained social systems as well as families who have struggled to help their children attain the best outcomes possible.

Autism today is one of the most important public health challenges facing our nation. That’s why Congress is soon expected to reauthorize the Combating Autism Act so the rapidly growing field of autism scientists can continue searching for answers.

Until those answers are found, we must help adults with autism like Justin Canha, 22, featured in your article, become valued members of our community. People with autism are no different from anyone else — they want a job, a home and friends.

SUZANNE WRIGHT
BOB WRIGHT
Co-founders, Autism Speaks
New York, Sept. 20, 2011



To the Editor:

Your article points out the many problems faced by young adults as they make the transition from richly funded school programs to a world where there is no mandate to pay for programs for them. The day a person with a disability turns 22, funding for them is drastically curtailed and in some cases disappears altogether.

In this fiscal environment it is extremely difficult to provide the kind of individual supports needed to place and keep adults with significant cognitive challenges in meaningful employment.

It is unrealistic to think that employers have the time or the resources to train these young people. And yet these same young people, as the article points out, have skills and talents that could be harnessed not only to support themselves but also to serve as a resource to employers and the community.

Any revamping of Medicaid should include looking at how to improve funding for our citizens with cognitive challenges so that they can fully participate in the world of work and live as independently as possible.

SHARON B. RAIMO
Washington, Sept. 19, 2011

The writer is chief executive of St. Coletta of Greater Washington, a special education school.


To the Editor:

As the parent of an adult child with autism and executive director of Autism Works, I applaud your article for providing a realistic view of the struggles we face helping our loved ones gain their independence. Justin Canha’s situation reflects the growing need to develop services that appropriately help him and others reach their employment goals.

Justin is a gifted artist whose talents can be a boon for businesses. Rather than looking at disabilities, we need to learn to look at each individual’s abilities, investigate the whole person, and draw on the skills, talents and special interests around which successful outcomes are created.

Let’s embrace a diverse work force and capitalize on the great gifts and talents people of all types provide. It’s good for people like Justin, and it’s good for all of us.

MELISSA KENIG
Edina, Minn., Sept. 19, 2011



To the Editor:

The young adult with autism profiled in your article, Justin Canha, has had parental, educational, employment and community resources to support him. Unfortunately, many children with autism do not have access to all these resources, and children who are not as functional as Justin need even more help.

It is time for policy makers to realize that austerity measures are counterproductive when it comes to investing in resources for those with autism and other developmental disorders. Not only are such measures coldhearted, but they also end up costing society more financially because higher levels of care will be necessary to support such individuals.

Moreover, increased investment in research to develop better interventions in autism will have the most profound payoffs. These two parallel approaches — increased resources for families and for research — will ensure that society will fully enjoy the unique contributions of individuals with autism spectrum disorder.

JOSEPH BUXBAUM
New York, Sept. 19, 2011

The writer is director of the Seaver Autism Center for Research and Treatment at Mount Sinai School of Medicine.

    Investing in Helping Adults With Autism, NYT, 23.9.2011,
    http://www.nytimes.com/2011/09/24/opinion/investing-in-helping-adults-with-autism.html

Young Adults Make Gains in Health Insurance Coverage

September 21, 2011
The New York Times
By KEVIN SACK

Young adults, long the group most likely to be uninsured, are gaining health coverage faster than expected since the 2010 health law began allowing parents to cover them as dependents on family policies.

Three new surveys, including two released on Wednesday, show that adults under 26 made significant and unique gains in insurance coverage in 2010 and the first half of 2011. One of them, by the Centers for Disease Control and Prevention, estimates that in the first quarter of 2011 there were 900,000 fewer uninsured adults in the 19-to-25 age bracket than in 2010.

This was despite deep hardship imposed by the recession, which has left young adults unemployed at nearly double the rate of older Americans, with incomes sliding far faster than the national average.

The Obama administration, intent on showcasing the benefits of a law that has been pilloried by Republicans, attributes the improvement to a provision of the Affordable Care Act that permits parents to cover dependents up to their 26th birthdays. Until that measure took effect one year ago this week, children typically had to roll off their parents’ family policies at 18 or 21 or when they left college.

Some twentysomethings adopted a posture of “young invincibility,” forgoing health insurance they could afford while gambling that they would not incur steep medical expenses. But others, like Kylie R. Logsdon, who credits the provision for enabling her heart transplant in July, were living with chronic or life-threatening conditions and had no prospects for coverage.

“I honestly don’t know what we would have done,” said Ms. Logsdon, 23, of Gerlaw, Ill., who gained coverage under her father’s policy after losing her job as a legal secretary. “There was no way we could have afforded it. I might not be here right now.”

Last week, the Census Bureau reported that the share of young adults without health insurance dropped in 2010 by 2 percentage points, to 27.2 percent. That decline meant that 502,000 fewer 18- to 24-year-olds were uninsured. Most gained coverage through private policies, not government programs.

For every other age group, the proportion without insurance increased, as high unemployment and contractions in employer coverage continued to take their toll. For the first time in more than 10 years, 18- to 24-year-olds were not the least insured group, having been overtaken by those 25 to 34.

Kathleen Sebelius, the secretary of health and human services, accentuated the silver lining in an otherwise grim census poverty report by declaring: “The Affordable Care Act is working.”

On Wednesday, the C.D.C. released its survey showing that the trend might have accelerated in the first quarter of 2011. That report, the National Health Interview Survey, which differs in methodology from the census count, estimates that 900,000 fewer adults ages 19 to 25 were uninsured in the first quarter of this year than in 2010. Also released Wednesday, a Gallup survey found similar rates in the second quarter of 2011.

The Department of Health and Human Services had projected last year that 650,000 uninsured would gain coverage in 2011 because of the provision.

Although cause and effect have not been proved, government officials and health industry analysts said they could not imagine another explanation for the change. In the census numbers, young adults were the only age bracket with an increasing share insured by employers (albeit presumably their parents’ employers).

“It would be hard to construe it to be anything but the Affordable Care Act,” said Mark F. Olson, a senior actuary with Towers Watson, the human resources consulting firm.

There have been no studies of the provision’s impact on cost. But Mr. Olson and several insurance industry spokesmen credited it for raising enrollments and premiums by between 1 percent and 3 percent at many firms.

“It’s a basic principle of economics that when more benefits are added to a policy or more people are covered under that policy there are additional costs incurred,” said Robert Zirkelbach, a spokesman for America’s Health Insurance Plans, the industry trade group. “The cost impact is even greater to the extent ‘adverse selection’ occurs, meaning that only people who need health care services choose to enroll in their parents’ plan.”

The dependent coverage provision allows parents to insure adult children even if the children are married. Children are not eligible if they have an offer of employer-based coverage.

Although the provision did not take effect until Sept. 23, many insurers voluntarily extended their dependent coverage months earlier. A majority of states had recently passed similar laws, but they had varying age limits and did not apply to some large insurance plans.

Advocacy groups have worked assiduously to educate students about the new provision. One of the groups, Young Invincibles, is running a campaign this week on 16 college campuses under the inevitable banner of “Friends With Benefits.”

Miriam A. Brand, a senior at the University of Maryland, said it gave her profound peace of mind to know she could remain on her father’s group insurance policy for several years while attending graduate school or searching for a first job, preferably in counseling. Ms. Brand, 22, has been managing Type 1 diabetes since she was 6, and she said her medications and supplies cost at least $8,000 a year.

“I’m not like most college students,” Ms. Brand said. “I don’t have the luxury of putting medical care to the wayside. Now I have the gift of time in finding a job in this scary job market.”

Ms. Sebelius reinforced that point. “In a world where great inventors, entrepreneurs and C.E.O.’s can be young or old,” she told reporters on Wednesday, “we can’t take the chance that the next Facebook will never happen because its creator took a desk job just to get health insurance.”

The young adults provision is one of several measures in the health law designed as a stopgap until 2014, when the number of uninsured is expected to drop significantly.

Providing the act is not struck down by the Supreme Court or repealed by Congress, most Americans at that point will be required to obtain insurance. Pre-existing condition exclusions will be eliminated for adults, Medicaid eligibility will be expanded and government subsidies will make private coverage more affordable for many.

Not all of the stopgap measures have proved as popular as young adult coverage. The pre-existing condition insurance plans created under the law were projected to cover 375,000 otherwise uninsurable people in 2010. Only 30,000 had signed up as of July.

Because entry-level jobs frequently do not have health benefits, and individual policies can be unaffordable on a starting salary, the rate of young adults without coverage is nearly double the national average. A Commonwealth Fund survey found that 45 percent of young adults reported delaying medical care because of cost in 2010, up from 32 percent in 2001.

    Young Adults Make Gains in Health Insurance Coverage, NYT, 21.9.2011,
    http://www.nytimes.com/2011/09/22/us/young-adults-make-gains-in-health-insurance-coverage.html

Obama Proposes $320 Billion

in Medicare and Medicaid Cuts Over 10 Years

September 19, 2011
The New York Times
By ROBERT PEAR

WASHINGTON — President Obama’s budget director said Monday that the president’s new deficit-reduction plan would impose “a lot of pain,” and that is clearly true of White House proposals to cut $320 billion from projected spending on Medicare and Medicaid in the coming decade.

Mr. Obama proposed higher premiums and deductibles for many Medicare beneficiaries and lower Medicare payments to teaching hospitals and rural hospitals. He would start charging co-payments to frail homebound older people who receive home health services. And he would reduce the growth of federal payments to states for treating low-income people under Medicaid.

The White House said Mr. Obama’s proposals would cut $248 billion from the projected growth of Medicare in the next 10 years, while shaving $72 billion from Medicaid and other health programs. A large share of the Medicare savings would, in effect, be used to pay doctors, who would otherwise face deep cuts in the fees they receive for treating Medicare patients.

The proposals are part of a package to reduce deficits by more than $3 trillion over 10 years, beyond the $1 trillion in savings already assumed under the debt limit law that Mr. Obama signed in early August. The package includes tax changes intended to raise $1.5 trillion in revenue over 10 years.

Mr. Obama would also allow the Postal Service to cut its losses by ending Saturday mail delivery. He would reduce farm subsidies by $31 billion over 10 years, require federal employees to contribute more to their pension plans, force military retirees to pay more for prescription drugs and charge higher fees to air travelers for “aviation security.”

Jacob J. Lew, director of the White House Office of Management and Budget, rejected suggestions that the White House was going after rich people.

“If you look at the details of what’s in the plan that the president is sending to the Congress,” Mr. Lew said, “there is a lot of pain, and it’s spread — it’s spread broadly and we think fairly.”

Medicare and Medicaid insure more than 100 million people and account for nearly one-fourth of all federal spending. The proposed savings, which provoked predictable protests from health care providers, represent less than 3 percent of what the government expects to spend on the programs in the next 10 years.

Speaking in the Rose Garden on Monday, Mr. Obama said his plan — in the form of recommendations to a bipartisan Congressional committee on deficit reduction — “includes structural reforms to reduce the cost of health care in programs like Medicare and Medicaid.”

The proposal would require new beneficiaries to pay higher deductibles before Medicare coverage of doctors’ services and other outpatient care kicks in. The deductible, now $162 a year, is already adjusted for inflation. Mr. Obama would increase it further by $25 in 2017, 2019 and 2021.

In addition, the White House would increase Medicare premiums by about 30 percent for new beneficiaries who buy generous private insurance to help fill gaps in Medicare.

Many beneficiaries choose these private Medigap policies because they want the financial security they get from the extra insurance. But the White House said this protection “gives individuals less incentive to consider the costs of health care and thus raises Medicare costs.”

Mr. Obama would raise $20 billion over 10 years by charging higher premiums to higher-income beneficiaries and by freezing the income thresholds so more people would have to pay the surcharges.

About 5 percent of the 48 million Medicare beneficiaries now pay the higher premiums. The proportion would eventually rise to 25 percent under the proposal.

Starting in 2017, Mr. Obama would require certain new beneficiaries to pay co-payments for home health care, which is now exempt from such charges. The co-payment would be $100 per episode, defined as a series of five or more home health visits not preceded by a stay in a hospital or a skilled nursing home.

Howard J. Bedlin, vice president of the National Council on Aging, a service and advocacy group, said such co-payments would “significantly increase out-of-pocket costs for many low-income widows with multiple chronic conditions.” Likewise, Mr. Bedlin said, “The Medigap proposal would shift costs onto Medicare beneficiaries.”

Mr. Obama also proposed these changes:

¶ Require drug companies to provide additional discounts, or rebates, to Medicare for prescription drugs bought by low-income beneficiaries. This proposal, opposed by drug makers, would save the government $135 billion over 10 years.

¶ Squeeze $42 billion over 10 years from Medicare payments to nursing homes, home health agencies and rehabilitation hospitals. Cut Medicare payments to nursing homes with large numbers of patients hospitalized because they did not receive appropriate care in the nursing home.

¶ Require doctors to get approval from Medicare for the most expensive imaging services.

¶ Revise the formula for calculating Medicaid payments to states, saving $15 billion over 10 years. Restrict states’ ability to finance their share of costs by imposing taxes on care providers.

¶ Cut $3.5 billion over 10 years from a prevention and public health fund created by the new health care law.

Another White House proposal would save $20 billion over 10 years by reducing Medicare payments to hospitals and other providers for bad debts that result when beneficiaries fail to pay deductibles and co-payments.

    Obama Proposes $320 Billion in Medicare and Medicaid Cuts Over 10 Years, NYT, 19.9.2011,
    http://www.nytimes.com/2011/09/20/us/politics/medicare-and-medicaid-face-320-billion-in-cuts-over-10-years.html

Autistic and Seeking a Place in an Adult World

September 17, 2011
The New York Times
By AMY HARMON

MONTCLAIR, N.J. — For weeks, Justin Canha, a high school student with autism, a love of cartoons and a gift for drawing, had rehearsed for the job interview at a local animation studio.

As planned, he arrived that morning with a portfolio of his comic strips and charcoal sketches, some of which were sold through a Chelsea gallery. Kate Stanton-Paule, the teacher who had set up the meeting, accompanied him. But his first words upon entering the office were, like most things involving Justin, not in the script.

“Hello, everybody,” he announced, loud enough to be heard behind the company president’s door. “This is going to be my new job, and you are going to be my new friends.”

As the employees exchanged nervous glances that morning in January 2010, Ms. Stanton-Paule, the coordinator of a new kind of “transition to adulthood” program for special education students at Montclair High School, wondered if they were all in over their heads.

Justin, who barely spoke until he was 10, falls roughly in the middle of the spectrum of social impairments that characterize autism, which affects nearly one in 100 American children. He talks to himself in public, has had occasional angry outbursts, avoids eye contact and rarely deviates from his favorite subject, animation. His unabashed expression of emotion and quirky sense of humor endear him to teachers, therapists and relatives. Yet at 20, he had never made a true friend.

People with autism, whose unusual behaviors are believed to stem from variations in early brain development, typically disappear from public view after they leave school. As few as one in 10 hold even part-time jobs. Some live in state-supported group homes; even those who attend college often end up unemployed and isolated, living with parents.

But Justin is among the first generation of autistic youths who have benefited throughout childhood from more effective therapies and educational opportunities. And Ms. Stanton-Paule’s program here is based on the somewhat radical premise that with intensive coaching in the workplace and community — and some stretching by others to include them — students like Justin can achieve a level of lifelong independence that has eluded their predecessors.

“There’s a prevailing philosophy that certain people can never function in the community,” Ms. Stanton-Paule told skeptics. “I just don’t think that’s true.”

With some 200,000 autistic teenagers set to come of age in the United States over the next five years alone, little is known about their ability to participate fully in public life, or what it would take to accommodate them. Across the country, neighbors, employers, colleagues and strangers are warily interacting with young adults whose neurological condition many associate only with children.

Some advocates of “neurodiversity” call this the next civil rights frontier: society, they say, stands to benefit from accepting people whose brains work differently. Opening the workplace to people with autism could harness their sometimes-unusual talents, advocates say, while decreasing costs to families and taxpayers for daytime aides and health care and housing subsidies, estimated at more than $1 million over an adult lifetime.

But such efforts carry their own costs. In this New York City suburb, the school district considered scrapping Ms. Stanton-Paule’s program almost as soon as it began, to save money on the extra teaching assistants who accompanied students to internships, the bank, the gym, the grocery store. Businesses weighed the risks of hiring autistic students who might not automatically grasp standard rules of workplace behavior.

Oblivious to such debates, many autistic high school students are facing the adult world with elevated expectations of their own. Justin, who relied on a one-on-one aide in school, had by age 17 declared his intention to be a “famous animator-illustrator.” He also dreamed of living in his own apartment, a goal he seemed especially devoted to when, say, his mother asked him to walk the dog.

“I prefer I move to the apartment,” he would say, reluctantly setting aside the notebook he spent hours filling with tiny, precise replicas of every known animated character.

“I prefer I move to the apartment, too,” his father, Briant, a pharmaceutical company executive, replied on hard days.

Over the year that a New York Times reporter observed it, the transition program at Montclair High served as a kind of boot camp in community integration that might also be, for Justin, a last chance. Few such services are available after high school. And Justin was entitled to public education programs, by federal law, until only age 21.

Ms. Stanton-Paule had vowed to secure him a paid job before he left school — the best gauge, experts say, of whether a special needs student will maintain some autonomy later in life. She also hoped to help him forge the relationships, at work and beyond it, that form the basis of a full life.

But more prosaic lessons arose at every turn: when he should present money at the pizza place (not until after he ordered), how close to stand to the person using the weight machine he wanted at the gym (not so close), what to say when he saw a co-worker drinking a Coke (probably not “Coca-Cola is bad for your bones”). Often, Ms. Stanton-Paule and her staff seemed to spend as much time teaching the residents of Montclair about Justin as teaching him the tasks at hand.

“Don’t tell me, tell him,” they directed cashiers. “We need your help to make this work,” they pleaded with potential employers. “Justin has autism,” Ms. Stanton-Paule explained to librarians, the manager at the animal shelter, students at the local college. “How he communicates might be different from what you’re used to.”

For his part, Justin sometimes flagged in his pursuit of autonomy. “When do I retire from this?” he asked of drills in phone etiquette. But he never stopped trying, sometimes warbling the theme song to his favorite movie, “Pinocchio,” as a means of soothing himself.

“When you wish upon a star,” he sang, “makes no difference who you are.”

“Pinocchio,” he informed anyone who asked, “is about a wooden puppet who was brought to life by a blue fairy and goes through mischief and mayhem so he can be approved to be a real boy.”

If he recognized himself in Pinocchio’s classic quest for acceptance, Justin did not say it in so many words.

Family That Won’t Take ‘No’

Justin’s adulthood had been looming for his parents, Briant and Maria Teresa Canha, ever since he was given his diagnosis in 1993 at age 3. Like many parents of autistic children before them, they wondered what would become of their son, who threw frequent tantrums, looked straight through them and did not answer to his name.

But some things were changing for the better. The explosion of research that followed the formal recognition of autism as a psychiatric diagnosis in 1980 underscored its biological basis, lifting some of the stigma that persisted through the 1970s, when bad mothering was often blamed for the condition’s mix of social impairments and circumscribed, repetitive behaviors.

And Justin’s parents were not alone. As the condition’s hallmark behaviors became better recognized, many children who were previously designated as mentally retarded or just dismissed as strange were being given an autism diagnosis, a trend that has continued. Some experts also believe that the actual number of people with autism has been climbing.

Even now, autism’s root causes remain unknown; many genetic and environmental factors are believed to contribute to its different forms and degrees of severity. Justin, for example, is unusually sensitive to noise; others are uncomfortable with light or touch. Some are physically aggressive, others withdrawn. About half score low on I.Q. tests, a handful are savants, and many, like Justin with his drawing, shine brightly in one particular area and stumble in others.

But emboldened by the growing understanding of what it means to be autistic, parents in the 1990s were increasingly demanding full access to education for their children and searching for ways to help them.

Many interventions the Canhas tried — gluten-free diets, neurofeedback therapy, high doses of vitamin B6 powder — made no apparent difference. A trip to Israel “to swim with those sweet bottle-nosed dolphins,” as Justin later described it, was a boon for a boy whose affection for animals contrasted with the indifference he showed people, but it yielded no breakthroughs.

Months of intensive language and cognitive therapy at age 4, however, did seem to help Justin, who learned a few words in sign language. To communicate with him, Justin’s brother, Julian, 18 months older, learned them, too.

If Briant occasionally raised an eyebrow at his wife’s tireless trial and error, he never held her back. He could not bring himself to have the third child she wanted, unwilling to risk another with autism. But the decision made the search all the more pressing: Julian, they knew, might one day be his brother’s sole caretaker.

The family had been living in Europe, where Briant had a promising career in international business and Maria Teresa, the daughter of a Brazilian diplomat, had embraced an expatriate lifestyle. There Justin found some comfort drawing characters from the Disney videos he watched incessantly; at 5, he littered the Canha home with hundreds of likenesses of Dumbo, Simba and a “Jungle Book” favorite, Baloo the Bear.

But when Justin was in first grade, near Munich, his tantrums became so frequent that he was often removed from the classroom. For months, he would eat only grilled cheese sandwiches. A generation earlier, his parents might have placed Justin in an institution. Instead, the Canhas returned to the United States in 1997 to look for better services.

The realization that Justin was among the most severely impaired in the classroom set aside for children with autism in their new Florida school district was a blow to his mother, already battling depression. But with help from a new form of behavioral therapy that would prove to be one of the few effective interventions for some with the condition, Justin’s tantrums subsided.

With positive reinforcements for small tasks, Justin was coaxed by his therapists to answer questions like “what did you do today?” by drawing, providing a first glimpse of the confusion behind his outbursts, as well as his sense of humor.

The day a teacher at school took his markers away, he drew himself crying on a long, winding road home. After his father returned from a fishing trip, Justin drew a “bad dream”: his own body on a plate, a fish above him with knife and fork, ready to dig in. By the time the Canhas moved to be near family in Providence, R.I., Justin, 9, had taken the top award in a cartooning contest for students in kindergarten through 12th grade. His diet, still devoid of all vegetables, had expanded. He spoke a few short phrases.

And by the time Briant was offered a job in northern New Jersey a year later, Maria Teresa had learned of “inclusion,” a practice that allowed students with disabilities to participate fully in mainstream classes. Said to produce better academic outcomes for such students and instill compassion in their classmates, it held the chance for Justin, his mother believed, to learn the social language that was still so foreign to him.

It took a year to find a public school that would take Justin on those terms; over the 1990s, federal courts had ruled that districts must try to integrate students with disabilities, but gave them discretion. Three superintendents told his mother without even meeting Justin that they would bus him to a specialized private school.

But in Montclair, her plea to have her son educated in the community where she hoped he would one day work and live had been sounded by other parents just a year earlier. Having already trained teachers and adapted material so that six middle school children with other special needs could attend regular classes, there was no reason, the superintendent agreed, not to accommodate Justin.

 

A Celebrity, of Sorts, in School

The move to Montclair in 2002 took its toll on Justin, who clung to routine. In his high-pitched singsong, he ticked off to himself each place the Canhas had lived. “Five moves,” he said. “I hate it.” With a new cognitive behavior therapist, he practiced making eye contact and strategies to stanch the steady stream of “self-talking” that drew stares even as it soothed his anxiety.

Alone in his room, he filled composition books with a vast cast of miniature characters, drawing swiftly with a mechanical pencil that he sharpened after every two strokes. He learned the release date of every Disney film, its animators, its voiceover stars and whether it was “one of the best movies of all time” or “bombed at the box office,” both outcomes he proclaimed with relish. He memorized entire episodes of “The Simpsons” and “Family Guy.”

And with new computer software, he developed his own cartoon animations and a comic strip called “Jickey and Fanky” about a fox and a wolf that sometimes took on a decidedly personal twist. In “Jickey Goes to Behavior Therapy,” for instance, Dr. Fanky P. Wolf gets his eyes gouged out by his patient, Jickey, whom he is prodding to make eye contact.

When Maria Teresa probed his feelings, Justin brushed her off.

“Don’t be curious,” he told her in what became an oft-used refrain. “Don’t be interested.”

But at his new middle school, Justin’s autistic qualities earned him a kind of celebrity status. His classmates stifled smiles when he yelled “You’re fired!” at an unpopular teacher, and the novelty of his composition book served as a social bridge.

“I drew Baloo from ‘The Jungle Book,’ ” he would say to fellow students, opening to a page. “Do you like ‘The Simpsons’? What’s your favorite character?”

If he did not exactly have friends, he had admirers.

With simplified copies of school books and an aide to keep him focused, Justin participated in the same lessons as his peers, often using art to complete assignments. And when the Ricco Maresca gallery sold more than a dozen of his drawings for as much as $4,000 each at the Outsider Art Fair in Manhattan shortly after Justin entered high school, the Canhas allowed themselves the thought that he might one day support himself through his art.

The family paid for mentoring sessions with an art facilitator and arranged a tour of Pixar Animation Studios in California, where Justin informed the guide, “I am in heaven here.”

Julian, by phone from the University of Michigan, where he was attending college, voiced concern. “You’re investing so much in Justin’s art career,” he told his mother. “What if that doesn’t work out?”

But meeting regularly with Justin’s family, under the new requirements of a civil rights law called the Individuals With Disabilities in Education Act, school officials encouraged him to pursue independence. The term became a mantra of sorts for the Canhas. For Justin, like any adolescent, it seemed the key to freeing himself from his parents’ grip — and from the very activities designed to help him reach that goal.

“Mom, when is the last day of Dr. Selbst?” Justin asked on the weekly trips to the cognitive behavior therapist.

“Well, Justin, what’s the goal?” his mother asked. “Why do we go to Dr. Selbst?”

“Independence,” Justin sighed, turning on classical music on his iPod and settling in for the ride.

At bustling Montclair High, where Justin wore giant ear protectors to block out hallway noise, he faced a less gentle side of inclusive education. A gym teacher threw him out when the murmur of his self-talking broke an order for “total silence.” His middle school fans shrugged him off when he approached with his composition book. “They’re busy,” Justin reported when his mother asked if he ever had lunch with classmates or wanted to invite anyone over.

Some students purposely set off Justin’s emotional outbursts. “Kill Elmo,” they whispered, aware of his fascination with Internet videos portraying the demise of the popular “Sesame Street” character. “Why?” Justin would exclaim, sometimes loud enough to get sent to the principal’s office. “Why kill Elmo? Why?”

He still had trouble with basic math, and with understanding someone else’s point of view. His speech was halting, almost formal, and he never asked a reciprocal question in conversation except when prompted. He bristled at criticism, particularly of his artwork (“No opinions, please” was a Justinism his teachers knew well).

Yet by senior year, Justin had, in his way, assimilated. He had traded the earmuffs for discreet earplugs. He had railed against racism in a social justice class (“It’s not fair!”) and cultivated his skill in posing provocative questions that would get a rise out of classmates. “Why is it not OK,” he often wondered aloud of the adviser of the school cartoon club, “to say ‘Mr. Tucker is a sucker?’ ”

And sometimes, the rules bent his way. Justin’s aide braced herself when he raised his hand one day in a class that had focused for several months on Africa. The students had just finished reading a book on apartheid.

“Mr. Moore,” Justin complained, “I’m tired of learning about sad black people.”

The teacher, who was black, turned around.

“You know what, Justin?” he said. “Me too.”

Justin would walk with his classmates at graduation in June 2009. But at 19, he would be staying on for two years devoted to preparing for adult life. That spring, Ms. Stanton-Paule asked him to design a poster to present at a leadership conference for students with disabilities.

“If you could achieve anything, what would it be?” she challenged him.

He contemplated the outline she gave him: in a bubble at the top, he was to write his vision of the future. On steps leading to his goal, he would write his course of action.

On graduation day, he dressed in a cap and gown. As he paced in the overheated hallway, talking loudly to himself, his classmates calmed him. When they marched out on stage together, they made sure he took his place in line.

 

A Teacher’s Mission

Before Justin joined her program, Ms. Stanton-Paule drove her teaching assistants to a low-slung building near the high school known as a “sheltered workshop.” There, in a windowless room, people with autism and other developmental disabilities sorted colored combs and placed them in plastic bags. They were paid by the piece at sub-minimum wage rates, based on how fast they performed compared with the prevailing rate for nondisabled workers.

Some family members see such government-subsidized facilities as safe, productive alternatives to keeping disabled adults idle at home. Others criticize them as a form of segregation, where people cannot reach their potential.

To Ms. Stanton-Paule, the workshop represented one of the grim realities her students might face should they fail to find real jobs before leaving school. And for Justin, the stakes were particularly high. Post-high-school programs that have had some success in placing adults with disabilities like Down syndrome in rewarding jobs are often ill suited for those with autism, whose challenges center more on social and communication barriers than basic cognitive functioning.

“School is over when it’s over,” Ms. Stanton-Paule told her assistants. “And then it’s like, life.”

Like all of the nation’s public school districts, Montclair was required by federal law to provide some kind of transition program to prepare special education students to live independently. As in many schools, Montclair had traditionally assigned them to a classroom equipped with appliances, so they could practice skills like cooking and folding laundry. Some also worked in town a few hours a week.

But in the fall of 2008, Ms. Stanton-Paule had moved nine such students out of the school building entirely and into the town. Individually supervised, they shopped for food, went to the gym and worked at the local businesses that provided internships in response to her combination of charm, persistence and offers of free labor.

The approach, sometimes called “community-based instruction,” is widely viewed by educators as the best way to prepare special needs students to navigate real-life settings. But the federal government, which pays states extra for their education, does not require that school districts track which students are employed in the years after they leave school to determine the relative success of different transition programs.

And experts say few schools implement programs based fully in the community, which require a type of very public teaching for which there is little training.

“We’re asking teachers to get out of the classroom,” said Dan Baker, a pediatrics professor at the Robert Wood Johnson Medical School who was hired by New Jersey’s Education Department to promote the model to its own schools. “That is not necessarily in their comfort zone.”

Deceptively calm, with straight blond hair and an unflinching green gaze, Ms. Stanton-Paule, 49, had long championed the approach: a decade earlier she had found jobs for several special needs students who still worked in town, at a hair salon, at the library, at the Y.M.C.A. The same group of activist parents who had inspired the Canhas’ move to Montclair had requested that Ms. Stanton-Paule be hired back when their children reached high school, and another teacher, Leslie Wallace, quickly volunteered to be her co-director. The program, they argued, could serve even the students most severely affected by autism and other disabilities.

But others saw them as overly idealistic.

The vice provost at Montclair State University, for example, suggested at a meeting that it would not be in the best interest of Ms. Stanton-Paule’s students to audit college classes, even if the institution had resources to handle them. “This is a competitive environment,” she told the teacher.

And a year after she started the community-based program, Ms. Stanton-Paule was already clashing with administrators about whether they would assign enough teaching assistants, at a cost of about $20,000 per student, to continue it.

Regardless of the expense, some school officials were not convinced the program was right for students who needed so much help just to navigate high school. One student “was lost in the school building the other day,” a colleague pointed out. “Do you really think she’s going to be safe in the community, Kate?”

As for Justin, another colleague warned her, “The world can be a rough place.”

“People out there will help Justin,” insisted Ms. Stanton-Paule, who has a master’s degree in special education and rehabilitation psychology. “We’ll show them how.”

The Canhas were counting on it. Their quest for inclusive education had all been aimed at enabling Justin’s independence. But so far, the only place he went by himself was the volunteer job Ms. Stanton-Paule had set up at the Montclair Township Animal Shelter — where he excelled, as it turned out, at “socializing” stray cats.

“Please stand by us,” Justin’s mother pleaded in an e-mail to school administrators, who ultimately reinstated the program’s teaching assistants. “What we have achieved so far would be lost if Justin could not continue to be supported as he has been in Montclair.”

The morning he was to present his “Dream” poster at the statewide conference at a local college, Justin buzzed with excitement.

“O.K., Kate, when am I going to talk about my poster?” he demanded. Finally, he stood before a room filled with several dozen students, teachers and local television news reporters and held it up. On the lower steps of the poster, he had written “learn how to take the bus.” At the top, he had drawn himself at a drafting table, in a jacket and tie, with a red-brick apartment building. “Famous animator-illustrator” he had written, and, on the step marked 2014, “move to the apartment.”

In large blue letters, he had also written the word “Single.” “Marriage,” he said, drawing out his words in his exaggerated style, “is too comp-li-cat-ed.”

Ms. Stanton-Paule, listening, thought, “Don’t be so sure.”

 

Working Toward a Dream Job

It had taken months for Ms. Stanton-Paule to persuade Randy Rossilli, the president and founder of the start-up animation studio Nightstand Creations, to meet Justin.

“Call me next week,” Mr. Rossilli, whose company had won a regional Emmy for a children’s show, told her over the fall of 2009.

There were other disappointments that fall as the teachers sought internships for Justin, promising on-the-job support that would fade only when everyone was ready. The supervisor at the public library where Justin volunteered to shelve books gave him high marks for accuracy, but budget cuts meant there would be no paid position. Artware, a store that made custom T-shirts and coffee mugs, declined to take him on.

“I can’t do it, Kate,” said Diana Polack, the owner, who had recently employed someone with disabilities and found the extra attention he required too costly.

Justin’s other volunteer job, assisting an elementary school art teacher, was initially going well. The first graders delighted in his deft animal sketches, and he laid down the law with a moral clarity that might be attributed to his autism.

“Children,” he told students snickering at one boy’s drawing. “Stop being mean. Be kind.”

The art teacher, Kathleen Cooney, who had had some trepidation about Justin’s internship, started to relax. But one afternoon in December, when Justin repeatedly mentioned the coming Christmas holiday to his students, Ms. Cooney asked him to stop talking about religion at school.

“Well, I believe in Jesus Christ, and I want to say ‘Merry Christmas,’ ” he insisted. “Why it is not O.K. to say ‘Christmas?’ Why?”

He paced in the hall, his self-talking growing louder. He made explosion sounds. Ms. Cooney summoned Ms. Stanton-Paule to help calm Justin.

It was when rules of social behavior rang false to him, Ms. Stanton-Paule suspected, that he found them especially hard to grasp. But later that month, she saw a new empathy in her student when she accompanied Justin to distribute holiday cards he had hand-made for colleagues.

“I’m not allowed to say ‘Merry Christmas,’ Marilyn,” Justin said abruptly to one of the librarians, thrusting a card at her. “So, happy holidays.”

He turned to walk away as she started to thank him.

“Justin,” Ms. Stanton-Paule said with unusual sharpness, “I think Marilyn was speaking.”

He stopped.

“I appreciate that you said ‘happy holidays,’ Justin,” the librarian said calmly, “because I celebrate Hanukkah.”

“Oh,” he said, as though it had never occurred to him. “Happy Hanukkah then.”

And when Mr. Rossilli finally agreed to meet on that cold morning in January 2010, in an office with posters of Mickey Mouse on the wall, Justin was better prepared than he had ever been.

“Hi, Randy,” he said, sticking out his hand. “What is your favorite Disney animation?”

Mr. Rossilli did not miss a beat. “My favorite Disney animated film was ‘Jungle Book,’ and my favorite character of all time is Baloo the Bear,” he answered.

“ ‘Jungle Book’ is a great Disney animated film,” Justin concurred. “It was released in 1969.”

“As a matter of fact, let me show you how much I love the film,” Mr. Rossilli said, rolling up his sleeve to reveal a tattoo of Baloo.

“Oh,” Justin said reverently, reaching out his hand to touch it. “That’s beautiful.”

With Ms. Stanton-Paule and Ms. Wallace on the sofa beside their student, Mr. Rossilli flipped through Justin’s portfolio and his composition book, trying to ignore the feeling that he was interviewing a star who had come with his manager.

“How do you keep your focus when you’re doing your art?” he asked.

“I don’t know,” Justin replied, staring off at the Mickey Mouse poster.

Ms. Stanton-Paule forced herself to remain silent.

Then Justin looked his potential first boss in the eye. “I use my brain,” he said.

Mr. Rossilli was impressed with Justin’s passion for a craft he loved himself. But his offer of a two-day-a-week unpaid internship was a business decision. The company was developing a property called “Tinosaurs.” There was no doubt that Justin could draw tiny, and he just might have the attention to detail it would take to learn animation.

“We’ve got the same haircut,” Mr. Rossilli joked at the end of the meeting. “People might think you’re a better-looking version of me.”

“Yeah,” Justin agreed, unaware that he was teasing.

Mr. Rossilli smiled. Somehow, it made him all the happier to give Justin a chance.

 

Finding His Own Voice

Justin had long relied on his mother for direction, and few were more tenacious advocates. Maria Teresa and her husband had divided up their labor, relying on Briant’s job, which required frequent travel, for income, while she focused on their son. Even as Justin’s internship began at Nightstand, she was pressing his portfolio into the hands of an acquaintance at “Sesame Street.”

But as the snow melted in the spring of 2010, Justin began to develop what Ms. Wallace called “his own voice.” His teachers encouraged it.

Maria Teresa, for instance, encouraged Justin to pack his lunch.

“Do you want to buy lunch sometime?” Ms. Stanton-Paule asked Justin one morning. Several of the other students went to local restaurants during their breaks.

“I like to buy lunch, but Maria Teresa forbids me,” Justin replied in his formal way, exaggerating slightly for effect.

“Yeah, but whose life is it?” Ms. Stanton-Paule asked.

“Mine!” Justin said.

On another occasion, he complained about his after-school schedule, packed with therapy and social skills classes.

“Kate, I dislike Maria Teresa’s opinion sometimes,” he said. “I prefer to foil her plans.”

“Well, you need to tell her, Justin,” Ms. Stanton-Paule said. “You have to say, ‘I would rather do it at a different time.’ ”

Justin spoke his mind, too, in a cartooning class he was auditing at Montclair State University (Ms. Stanton-Paule quietly helped him enter through the college’s program for the gifted, avoiding the provost’s objections). One classmate credited Justin’s suggestion that she use Porky Pig in an illustration of swine flu with making her project funnier and improving her grade.

And if Nightstand was not the permanent job they had all hoped for, it was a work experience that could not have been replicated in school.

Justin’s teachers taught him to take the public bus to the office, first accompanying him and then spying from afar. Since he did not talk to himself when he listened to music, Ms. Stanton-Paule coached him to avoid drawing hostile looks by turning on his iPod.

Ms. Wallace advised him on his dress.

“You look like a geek, Justin,” she told him when he pulled his pants up too high one day.

“A geek!” Justin exclaimed, fascinated. “Why do I look like a geek?”

“Let your pants ride,” she said, and he pushed them down on his hips.

Most days, Justin remembered to greet his colleagues by name and to ask, “How was your weekend?” Next came a lesson in following up. How about, Ms. Stanton-Paule suggested, “Did you have a good time?”

Because Justin could be overwhelmed by verbal information, Ms. Stanton-Paule asked his co-worker and chief tutor, Javier Manzione, 30, to sit next to him with his computer and encouraged him to refocus Justin when necessary. “You’re not hurting his feelings,” she assured him.

Over the following weeks, Justin learned to animate an arm, to lip-sync a character’s voice and, perhaps just as importantly, to make small talk with colleagues. It helped that their interest in animation was as genuine as his.

One afternoon, Mr. Manzione heard Justin muttering lines from “Family Guy.” “Was that the episode they were on the couch throwing up in the living room?” he asked.

“Yes!” Justin answered, surprised. No one had ever interrupted his self-talking before except to tell him to stop.

He completed every assignment he was given and was the only one to complain when a snow day forced the office to close. But when Justin came in for a morning entirely on his own, he yawned, used the bathroom several times and was unable to focus, Mr. Rossilli reported to Ms. Stanton-Paule. And small disruptions to routine threatened his growing social confidence.

One Tuesday morning, for instance, he marched up the steps to the high school to meet Ms. Stanton-Paule before going to work, unaware that standardized tests were being given that day. Ignoring the man with a “volunteer” badge at an official-looking table near the entrance, he turned down the hall.

“Can I help you?” the man asked testily.

Oblivious to the subtle signals that carry so much social meaning — a tone of voice, a furrowed brow — Justin took the question literally. “I don’t need your help,” he said.

“Yes, you do,” the man replied, his voice rising. Justin, with his dark buzz cut and large backpack, appeared to be just another test-taker arriving late — and rude to boot. “Do you have ID?”

“I don’t have ID because I graduated,” Justin proclaimed proudly. “I’m here to see Kate Stanton-Paule.”

A guard hearing the ruckus advised him, not unkindly, to come back another time. But when Justin, outside, called Ms. Stanton-Paule’s cellphone, as she had taught him to do in emergencies, he grew confused by her voicemail and hung up.

“I am waiting patiently,” he informed a snowdrift.

For Ms. Stanton-Paule waiting inside, the episode was among the most nerve-racking in the program so far. Her boss, Dr. Keith Breiman, who supervised special education at the high school, was the one to spot Justin kicking the snow outside his window.

“Kate,” Dr. Breiman said, delivering him to the meeting room. “I believe Justin was looking for you.”

 

Practicing for Independence

When Ms. Stanton-Paule visited Florida with her family the following month, she received a message from Justin.

“Hello,” it said. “I wanted to talk to Kate about — how is, uh, how is — how is the day, in Florida? See you later!”

Weeks of cellphone practice had paid off. Later that month, when Justin’s parents drove to Michigan for Julian’s college graduation, leaving Justin alone for the first time, he promised to keep in touch by texting, his new preferred mode of communication. “Why are you interrupting my independence?” he asked his mother when she called from the road.

Less successful were the friendships Ms. Stanton-Paule had sought to foster with other students in the program. Fearing that Justin would not leave his room all weekend, the Canhas paid one of his teaching assistants to meet him at Starbucks. Told that they were to meet “for a drink,” Justin had his drink and immediately departed.

He was more interested in completing his latest “Tinosaur” sketch for Mr. Rossilli — a kind of “Where’s Waldo?” with dinosaurs. His first rendition had too much white space, Mr. Rossilli told him, a comment Justin took with a new humility.

“Randy gave me a feedback,” Justin told his co-worker, Mr. Manzione, and revised the drawing until Mr. Rossilli declared it perfect.

But Justin still needed more one-on-one training to become an animator than Nightstand could provide, and by the summer of 2010, Mr. Rossilli had signaled that the internship would need to end. The business was faltering, and he needed to lay off his last two employees.

The Canhas learned too, that the state’s Division of Developmental Disabilities, where Justin would apply for support after the transition program ended, had threatened major budget cuts. And in the fall, they were told, Ms. Wallace’s hours in the transition program would be cut in half.

At home, Briant and Maria Teresa’s voices rose as they discussed Justin’s future. None of Justin’s artwork had sold that year.

“Maybe ‘Sesame Street’ will come through,” Maria Teresa ventured.

“Let’s just deal with what’s in front of us,” Briant insisted.

“I don’t like the parents discussing in the background,” Justin told a visitor. “I prefer the apartment.”

The next month, he woke his mother in the night, crying. He had had a nightmare, about “parents’ death and my death,” he told her.

It was, his mother thought, the first time he had registered what it would mean to truly be on his own.

 

A Friend, at Last

In January 2010, Gower Nibley, another student with autism who had joined the transition program the previous fall, received a text on his cellphone from Justin.

“My baloney has a first name, it’s H-O-M-E-R,” it read, the first line of a “Simpsons” takeoff on an iconic advertising jingle. Gower’s phone soon buzzed again: “My baloney has a second name,” this text said. “It’s H-O-M-E-R.”

On his way to his internship at a nursing home, Gower, 20, let out a giggle.

The grin that spread across Justin’s face whenever he saw Gower was striking. And Ms. Stanton-Paule, who was struggling to convince Justin’s parents that this budding friendship was a priority, hastened to schedule time for the two to eat lunch together. She created “Plan an Activity” worksheets so that they would not stand each other up by accident when they intended to get together, as had already happened more than once.

But with just five months left in the program, a rare fissure had opened between the teacher and Justin’s parents. Maria Teresa insisted that Justin was spending too much time on activities that did not involve finding work. “Kate,” Maria Teresa had told her sharply in a voicemail, “you need to get on top of this!”

Over the summer of 2010, the Canhas had enrolled Justin in a cake-decorating course; if he could not immediately find employment in animation, a job at a bakery, they all agreed, would allow him to use his artistic talent. He would enjoy decorating cakes with cartoon characters, Justin told his teacher, “because it cheers people up.”

That September, Maria Teresa had peppered Ms. Stanton-Paule with suggestions of gourmet bakeries where Justin might intern. The voicemail followed when a few weeks passed and the busy teacher had not yet followed up on all her leads.

But by October, Ms. Stanton-Paule had prevailed on Gencarelli’s Bakery in nearby Bloomfield to train Justin to dip cookies. And at a tense meeting in January, she told the Canhas that Justin needed to spend time with fellow students, even taking time to attend a class she was teaching on relationships and sexuality.

Maria Teresa objected. How could they be sure Gencarelli’s would turn into a real job? Perhaps he should take an animation class at Montclair State.

Briant, jet-lagged from a trip, closed his eyes.

Ms. Stanton-Paule held her ground. “Justin’s social competence is going to be a huge gauge of whether he is accepted in the workplace,” she said. Beyond that, she thought, he simply needed a friend.

Gower, who liked classic Hanna-Barbera cartoons like “Scooby-Doo,” took Justin’s probing, often repetitive questions about animation with a seriousness that no one else did. (“Sadly, in 2006, William Barbera passed away,” Justin had informed his friend.)

“You know, Brooks,” Gower commented to a teaching assistant who was with them at the supermarket, “I think if there were ever a trivia contest about cartoons, Justin would win.”

“Thanks,” Justin said, looking sideways at Gower.

But Gower was considered higher-functioning than Justin. His interests included weather and geography, and he had a girlfriend. Fearing that Gower would tire of Justin’s single-minded focus, Ms. Stanton-Paule had urged Justin to broaden his discussion topics. But it was slow going.

At the meeting in January, Ms. Stanton-Paule finally turned to Justin: “Would you like to continue to make time for getting together with Gower?”

“Yes!” he exclaimed.

Maria Teresa began to cry. Of course she wanted her son to have a friend. It was just that the responsibility for Justin’s future was suddenly almost unbearable, she apologized. She wanted so desperately for him to live up to his promise.

“Kate,” she said, “what will we do without you?”

Her husband reached over and put his hand on her arm.

 

Going It Alone

One day as Justin dipped cookies in chocolate in the bakery, a baker bumped into a co-worker carrying a tub of custard.

“Oh, did I hit the bucket?” she exclaimed, her words slurring somewhat in her alarm.

Justin, thinking she had used profanity to express frustration, rushed over. “It is not appropriate to curse at work,” he lectured her, proceeding to supply a lengthy list of alternatives. She might consider “fudge,” for instance, or “fiddlesticks.”

“You’re right, Justin,” the woman said, though she explained through her laughter that she had not, in fact, cursed.

The report of the incident, by amused bakery employees, filled Ms. Stanton-Paule with unexpected joy. Justin had not needed her prompting to interact with his colleagues. And they had not needed her to decipher his quirks.

Ariel Tuck, 21, Justin’s supervisor, found herself enjoying his spontaneous off-key singing. Justin was not quite as fast as the other interns, Ms. Tuck told the bakery’s co-owner, but his work was neater. Justin was filling up entire racks of cookies now, 14 trays at a time. With each new assignment, she had learned to ask him to use the notepad Ms. Stanton-Paule had supplied; drawing the shapes helped him remember which cookies went with which color sprinkles.

Justin received his first paycheck, for $84, in March, shortly after the Valentine’s Day rush, where he learned to write with chocolate for the first time. For now, he would work two days a week, at minimum wage.

“Right now I am dipping cookies,” Justin told people. “Maybe someday I will decorate cakes.”

That winter his mother made time to arrange a visit for Justin with Paloma Kalish, a Manhattan teenager and fellow animation buff with a form of high-functioning autism who was, as Justin put it, “a big fan of me.”

Paloma had followed Justin’s art career on his Web site after meeting him once at an exhibit, and her mother had sought out Maria Teresa. When the two met at the Kalishes’ home, Justin drew Paloma’s favorite character, Tod the Fox, in a composition book she had bought as an homage to him. A few months later, both mothers drew back as Justin took Paloma’s hand after a visit to his solo exhibition at the gallery in Chelsea.

“Don’t be curious,” he told his mother when she asked about the pile of fox pictures he was collecting on his desk at home. “Don’t be interested.”

If there was a hint that something more than friendship could grow — perhaps with Justin’s adoption of vegetables into his diet, after watching Paloma eat a salad — their discussion seldom strayed from animation.

But one spring morning with Gower, Justin took a conversational leap. “I hate moving,” Justin confided on their walk in a local park, recounting the places and dates of his moves, as he had so often done for himself over the years. Gower told him that he, too, disliked moving.

The young men lay down in a field and looked up at the sky. Justin told Gower that he planned on saving money, and that he might get a cat when he moved to his own apartment.

“Once I move into the apartment I’m going to feel so relieved,” Justin said. Gower would be welcome to visit whenever he wanted.

Ms. Stanton-Paule visited the bakery once more before the transition program ended in June, just as Ms. Tuck — whom Justin enjoyed calling “my boss” — was showing him how to make cookies that looked like rolled-up diplomas and hats.

Another part-time job had come through for him too, stocking shelves at an art supply store. And this year, at least, he would have a state-financed job coach a few hours a week and $16,000 in aid for continued training in independent living skills like banking, shopping and cooking.

His teacher watched him for a while as he worked.

Finally, he turned around.

“What are you still doing here, Kate?” he asked, his trademark bluntness making her smile.

“I’m just watching, Justin,” she said. “Is it O.K.?”

“Oh, O.K.,” he said.

She stayed for a little longer. Then she slipped away, the glass door closing behind her.

    Autistic and Seeking a Place in an Adult World, NYT, 17.9.2011,
http://www.nytimes.com/2011/09/18/us/autistic-and-seeking-a-place-in-an-adult-world.html

A Mother’s War on Germs at Fast-Food Playlands

September 17, 2011
The New York Times
By MARC LACEY

GILBERT, Ariz. — One of those who kicked off her shoes and slithered her way through the multihued plastic tubes of a fast-food restaurant playground here one recent morning was not enjoying herself in the least. In fact, she had a frown on her face.

“It’s bad,” Erin M. Carr-Jordan said, swab in hand, as she collected samples from a surface that she would later deliver to a lab for microbial testing. Nearby, a restaurant worker diligently sanitized tabletops and banisters outside the play area, but he did not appear to use his rag and spray bottle inside the children’s maze.

Dr. Carr-Jordan, a child development professor and a mother of four from Chandler, Ariz., has visited dozens of restaurant playgrounds in 11 states in recent months to test them for cleanliness. What the inspections and lab analyses have revealed is the widespread presence of an array of pathogens, from coliform bacteria to staphylococcus, at levels that experts said indicated that restaurants might not be disinfecting their playlands as diligently as they should.

Those same experts pointed out that germs are everywhere and that they are not always dangerous. They add that hand washing is an important safeguard.

“I’m not shocked or blown out of the water, because this is my business,” said Philip M. Tierno Jr., director of clinical microbiology and immunology at NYU Langone Medical Center in New York, who surveyed some of Dr. Carr-Jordan’s results. At the same time, Dr. Tierno said, “There are very high counts, and that means these places are not cleaned properly or not cleaned at all.”

Dr. Carr-Jordan’s campaign, which has attracted the attention of the fast-food industry, began in April when she stopped at a McDonald’s near her Phoenix-area home because one of her sons needed to go to the bathroom. On the way out, her children asked if they could play in the children’s park, which McDonald’s calls a PlayPlace. She assented and accompanied her children inside.

What she saw was alarming.

“My kids were going, ‘Yuck!’ ” she recalled of the scene, which she videotaped with her cellphone and posted on YouTube. “It was gross and sticky. There were curse words and gang graffiti. The windows were black. There was matted hair and an abandoned Band-Aid.”

Despite complaints to the manager and several follow-up visits, the play area was not cleaned, she said. So Dr. Carr-Jordan, who has a Ph.D. in developmental psychology but is no expert in microbiology, had samples tested. When the results were analyzed by Legend Technical Services Inc., an environmental testing company, they indicated the presence of potentially harmful bacteria, and she began inspecting and testing the playgrounds at other fast-food restaurants in her neighborhood. Lab results — she has since switched to another commercial lab — showed that most were far from clean, she said.

Intent on showing that the problem was not an isolated matter, she has been mixing family vacations with her play area inspections. From New York to California, she has squeezed herself into the playgrounds at Burger King, Chuck E. Cheese’s, Peter Piper Pizza and numerous other restaurants.

Playtime, a Colorado company that supplies play equipment to McDonald’s and other restaurants, recommends on its Web site that restaurant operators regularly clean and inspect their equipment to keep a check on “smudges, ink, goo.” The restaurants say they have policies in place that require the regular cleaning of their play areas. Danya Proud, a McDonald’s spokeswoman, said the company had stringent sanitizing procedures but had nonetheless assigned a team to review those procedures in light of Dr. Carr-Jordan’s complaints.

“We’re human, and we make mistakes,” Ms. Proud said, indicating that McDonald’s considers cleanliness a priority.

Still, Dr. Carr-Jordan said that of the nearly 50 play areas she had tested, only one had come back essentially free of pathogens, and that was at a Chick-fil-A restaurant not far from her home. That is now the only restaurant play area she permits her children to visit.

To draw attention to the issue and push for legislation mandating stricter standards for play areas, Dr. Carr-Jordan, who teaches at Arizona State University and several other institutions, has formed a nonprofit group called Kids Play Safe. Her calls to health officials, from local health departments to the Centers for Disease Control and Prevention, have failed to prompt any crackdown, she said.

A C.D.C. spokeswoman, Bernadette Burden, said the federal agency would get involved only if called in by state officials concerned about a major disease breakout. In Maricopa County, which includes Phoenix, the Environmental Services Department considers play areas nonfood areas, and thus less of a priority during inspections than other parts of restaurants, said Johnny Diloné, a spokesman.

So Dr. Carr-Jordan, fast-food vigilante, continues to climb into tubes, wriggle through tunnels and slide down slides. After emerging from one play area she inspected in Arizona last week, she shook her head. “No one would want their child playing in there,” she said, “and that one wasn’t the worst.”

    A Mother’s War on Germs at Fast-Food Playlands, NYT, 17.9.2011,
    http://www.nytimes.com/2011/09/18/us/a-mothers-war-on-germs-at-fast-food-playgrounds.html

Killing Jobs and Making Us Sick

September 16, 2011
The New York Times
By JOE NOCERA

“In January, Mr. Obama signed a food safety law that provides broad new authority to the Food and Drug Administration,” wrote Robert Pear in Friday’s Times, in an article about the Congressional appropriations mess. But House Republicans, he added, had voted “to cut the agency’s budget.”

Well, yes, in a nutshell, that is the sad story of the food safety law — the first major change in how the government regulates food safety in over 70 years. But the way the Republicans have dealt with its funding represents more than appropriations problems. It also represents the way they’ve allowed their unyielding antitax, antispend ideology to get in the way of common sense — and the common good.

A few weeks ago, in describing the absurd lawsuit the National Labor Relations Board brought against Boeing — for the crime of opening a plant in nonunion South Carolina — I characterized the N.L.R.B.’s effort as a case study in how Democrats hurt job creation. In that column I promised to return with an equally absurd Republican example. The refusal to properly fund the new food safety law is exactly that.

For years, the food industry and consumer groups have been aligned on the need to modernize the nation’s food safety inspection system. “Food-borne illnesses” — an outbreak of salmonella or E. coli, for instance — are a problem not just for consumers but for industry as well. Recalls are expensive. Sales shrink, even for companies not involved in the recall. Lawsuits ensue. Employees lose their jobs. It can take years to recover from a food scare.

F.D.A. inspections have always been geared toward domestic foodstuffs. But food is now a global industry. “Today,” said Scott Faber, a vice president of the Grocery Manufacturers Association, “we combine ingredients from hundreds of thousands of suppliers in over 200 countries.” Government’s food inspection has not kept pace.

The result was a bill, the Food Safety Modernization Act, whose contours had the approval of both industry and groups like the Center for Science in the Public Interest. It called for an overhaul of the inspection process, and applied tough new standards on food processors, food importers and foreign suppliers. The agency was required to do more foreign inspections, and use approved foreign governments or third-party auditors for importers. It had other important provisions to help prevent outbreaks of food-borne illnesses — and to track them down more quickly when they did occur.

As for paying for this overhaul, the bill included an eminently sensible mechanism: a fee on the industry. Originally set at $2,000 per food facility, it was whittled down to $500, which still would have raised an impressive $300 million. In 2009, when the bill came to a House vote, it passed with bipartisan support; even Michele Bachmann voted for it.

In the Senate, however, with its ever-present threat of Republican filibuster, the fee never had a chance. Never mind that many of the biggest industry players supported the fee. Indeed, many in industry wanted the fee. To the Republicans, “fee” was code for “tax.” When the Senate finally passed the bill in late 2010, the fee was gone.

There’s more. When President Obama submitted his 2012 budget to Congress, he asked for $955 million for food safety, a $120 million increase. The increase was necessary, of course, because without the fee, the F.D.A. was going to be hard-pressed as it began the expensive process of changing how it inspected food.

Needless to say, that increase never had a chance either. With the House firmly in Republican hands, it slashed the agency’s food budget by $87 million, to $750 million. That was a staggering $200 million less than the White House had requested, an amount so low that it will make the F.D.A.’s already difficult task nearly impossible.

Then again, the chairman of the Appropriations subcommittee on agriculture, Jack Kingston of Georgia, doesn’t really seem to think food safety is worth worrying about; he’s on record saying that the nation’s food supply is “99.99 percent safe.” He told The Washington Post last year that the amount of money the agency wanted to fund the new law would be scaled back if it was “significant overreach.” Apparently he thought it was significant overreach.

A few weeks ago, the Senate voted to increase funding just $40 million, which still leaves the F.D.A. short. With so much chaos surrounding the appropriations process, it is impossible to know how this will play out. To put it another way, as the F.D.A. starts to carry out the new law, and industry prepares for it, there is no certainty. This, of course, is exactly what Republicans complain about when they say the Obama administration is hurting job creation.

There is certainty about one thing, though. The next time there is an E. coli outbreak, we’ll know who to blame.

 

Gail Collins will appear in tomorrow’s Sunday Review.

    Killing Jobs and Making Us Sick, NYT, 16.9.2011,
    http://www.nytimes.com/2011/09/17/opinion/nocera-killing-jobs-and-making-us-sick.html

Pat Robertson’s Remarks on Alzheimer’s Stir Passions

September 16, 2011
The New York Times
By ERIK ECKHOLM

The televangelist Pat Robertson’s suggestion that a man whose wife was far “gone” with Alzheimer’s should divorce her if he felt a need for new companionship has provoked a storm of condemnation from other Christian leaders but a more mixed or even understanding response from some doctors and patient advocates.

On his television show, “The 700 Club,” on Tuesday, Mr. Robertson, a prominent evangelical who once ran for president, took a call from a man who asking how he should advise a friend whose wife was deep into dementia and no longer recognized him.

“His wife as he knows her is gone,” the caller said, and the friend is “bitter at God for allowing his wife to be in that condition, and now he’s started seeing another woman.”

“This is a terribly hard thing,” Mr. Robertson said, clearly struggling to think his way through a wrenching situation. “I hate Alzheimer’s. It is one of the most awful things, because here’s the loved one — this is the woman or man that you have loved for 20, 30, 40 years, and suddenly that person is gone “

“I know it sounds cruel,” he continued, “but if he’s going to do something, he should divorce her and start all over again, but to make sure she has custodial care, somebody looking after her.”

When Mr. Robertson’s co-anchor on the show wondered if that was consistent with marriage vows, Mr. Robertson noted the pledge of “’til death do us part,” but added, “This is a kind of death.”

He said the question presented an ethical dilemma beyond his ability to answer. “I certainly wouldn’t put a guilt trip on you if you decided that you had to have companionship, you’re lonely, you have to have companionship,” Mr. Robertson said.

The reaction from many evangelical leaders, who see lifelong, traditional marriage as the cornerstone of morality and society, was harsh and disbelieving.

“This is more than an embarrassment,” Russell D. Moore, dean of the School of Theology at the Southern Baptist Theological Seminary in Louisville, Ky., wrote in a blog post on Thursday. “This is more than cruelty. This is a repudiation of the gospel of Jesus Christ.”

But Beth Kallmyer, senior director of constituent services at the Alzheimer’s Association in Chicago, declined to question Mr. Robertson’s remarks.

“This is a challenging, devastating and eventually fatal illness, and it affects everybody differently,” she said. “The most important thing is that families get help.”

In the association’s experience, she said, it is rare for people to get divorced because of Alzheimer’s. But Alzheimer’s can go on for years or decades, progressively worsening.

“The decisions people make are personal,” Ms. Kallmyer said.

Dr. Amanda G. Smith, medical director of the University of South Florida Health’s Alzheimer’s Institute, in Tampa, said of Mr. Robertson’s remarks: “I think he was trying to give someone the freedom to move on, but he only took account of the caregiver without taking account of the patient.”

“Even if someone doesn’t recognize a spouse as specifically their spouse, there is often a familiarity with that person and a feeling of comfort, especially if they have been married for decades,” Dr. Smith said.

At the same time, Dr. Smith said, when the disease is advanced, she sees nothing wrong with caregivers developing other relationships “that bring joy and fill a void.” By the same token, she said, “it’s O.K. if a patient in a facility finds a girlfriend to sit with at dinner every night.”

Dr. James E. Galvin, a neurologist who runs a dementia clinic at New York University’s Langone Medical Center, said it was wrong to say that people with Alzheimer’s were “gone,” or to call its late stages “a kind of death.”

“While it’s true that in terminal phases, patients may not be fully aware of what’s going on, they tend to recognize the people who are closest to them,” Dr. Galvin said.

With good care, people may live 15 to 20 years with the disease, most of that time at home, Dr. Galvin said. If they eventually move to a nursing home and seem unaware of what is going on around them, he said, then spouses face “an individualized decision” about when and how to develop new relationships, ones based on religion and ethics, not science.

Mr. Robertson helped make the Christian Coalition into a formidable political force in the 1990s and is still popular on television. But over the years, he has also stirred anger among some conservative Christians with statements considered unorthodox by one group or another, including a defense of China’s one-child population policy and assertions that dire events like the Sept. 11, 2001, terrorist attacks and the Haiti earthquake were punishments from God.

“Few Christians take Robertson all that seriously anymore,” wrote Mr. Moore, of the Southern Baptist seminary. “Most roll their eyes and shake their heads when he makes another outlandish comment.”

Through a spokesman, Mr. Robertson on Friday declined to elaborate on his televised remarks.

    Pat Robertson’s Remarks on Alzheimer’s Stir Passions, NYT, 16.9.2011,
    http://www.nytimes.com/2011/09/17/us/pat-robertson-remarks-on-alzheimers-stir-passions.html

Abuse of Xanax Leads a Clinic to Halt Supply

September 14, 2011
The New York Times
By ABBY GOODNOUGH

LOUISVILLE, Ky. — Gayle Mink, a nurse practitioner at a community mental health center here, had tired of the constant stream of patients seeking Xanax, an anti-anxiety drug coveted for its swift calming effect.

“It is such a drain on resources,” said Ms. Mink, whose employer, Seven Counties Services, serves some 30,000 patients in Louisville and the surrounding region. “You’re funneling a great deal of your energy into pacifying, educating, bumping heads with people over Xanax.”

Because of the clamor for the drug, and concern over the striking number of overdoses involving Xanax here and across the country, Seven Counties took an unusual step — its doctors stopped writing new prescriptions for Xanax and its generic version, alprazolam, in April and plan to wean patients off it completely by year’s end.

The experiment will be closely watched in a state that has wrestled with widespread prescription drug abuse for more than a decade and is grasping for solutions as it claims more lives by the week. While Kentucky and other states have focused largely on narcotic painkiller addiction, experts say that benzodiazepines, the class of sedatives that includes Xanax, are also widely misused or abused, often with grim consequences.

While the patients at Seven Counties are mostly poor, experts say the appeal of Xanax cuts across socioeconomic lines. Alprazolam was the eighth most prescribed drug in the nation last year, according to SDI, a data firm that tracks drug sales. Even more than the figures suggest, Xanax has become part of the popular lexicon, as well known as a panic antidote as Prozac is for depression.

The Centers for Disease Control and Prevention last year reported an 89 percent increase in emergency room visits nationwide related to nonmedical benzodiazepine use between 2004 and 2008. And here in Kentucky, the combination of opiate painkillers and benzodiazepines, especially Xanax, is common in fatal overdoses, according to the state medical examiner.

Seven Counties is not the first health care provider to cut off prescriptions for controlled substances — at least several others around the country have stopped giving patients certain opiates and benzodiazepines — but the practice remains contentious. Some doctors say that refusing to prescribe certain drugs under any circumstance is overly rigid, noting that Xanax helps many people who use it responsibly.

“What they’re doing is a noble idea,” said Dr. Laurence H. Miller, who heads a committee on public and community psychiatry for the American Psychiatric Association. But he added: “I could never say never to anything. There are some people who may have done very well on it, are on a small dose and manage their lives on it, and that’s probably O.K.”

But Dr. Scott Hedges, senior vice president for medical services at Seven Counties, said he felt certain that Xanax did not need to be among the options offered there.

“The literature strongly suggests there are lots of really good ways to treat panic and anxiety disorders without using this particular medication,” Dr. Hedges said. “And the risk to the community, if we continue to use this medication, is very high.”

Xanax poses a particular risk for abuse and withdrawal, doctors say, because its effects are felt almost immediately, but last only a few hours. Users often quickly want more, experts say, and as their tolerance builds, they want increasingly higher doses.

Dr. Hedges said that while Seven Counties bore some blame for prescribing Xanax in the first place, many patients initially got it from primary care doctors. Alprazolam is one of the three most-prescribed controlled substances in Kentucky, along with hydrocodone and oxycodone, according to the state’s Cabinet for Health and Family Services.

“We pick these folks up way down the road,” said Dr. Robert Caudill, a Seven Counties psychiatrist, “where they’re already on a big dose and don’t want to give it up because they’ve been given no skills along the way” for otherwise dealing with panic and anxiety.

For people dependent on opiates, Xanax can be especially alluring because the fear of withdrawing from the opiates is so huge. After someone has experienced opiate withdrawal, Dr. Caudill said, “they really are scared to go into it again because it’s so horrible.”

“They will panic,” he added, “literally.”

At Seven Counties, some of the roughly 3,000 patients who were on Xanax have been switched to clonazepam, a longer-acting benzodiazepine that does not kick in as quickly and is thought to pose less risk of addiction.

“They don’t get the high that’s associated with Xanax,” Dr. Hedges said, “nor the withdrawal associated with it.”

The eventual goal is to wean patients off clonazepam, too, he said. People with severe anxiety should ideally take an antidepressant as well as a benzodiazepine, he said, and learn coping mechanisms with cognitive behavioral therapy.

The doctors and nurses at Seven Counties have encouraged patients on Xanax to consider these options in addition to clonazepam or instead of it. But the transition has been cautious and slow, Dr. Hedges said, with Xanax doses generally being reduced in half-milligram increments over a number of months.

“It’s a very slow and intentional process of weaning down,” Dr. Hedges said, “precisely because we don’t want to create all this anxiety and panic over, ‘Well, I’m not going to get it anymore.’ ”

After the policy change was announced in March, everyone from the doctors to the receptionists at Seven Counties anticipated some tense moments as patients got used to the idea. It was not lost on them that a doctor in rural eastern Kentucky was shot to death by a patient in 2009 after refusing to prescribe a painkiller.

Indeed, some transitions have been rough. Tina Graham, 44, a Seven Counties patient who suffers debilitating panic attacks, said her anxiety had sharply increased after switching from Xanax to clonazepam this summer. Clonazepam helps for about two hours after taking a pill, but for much of the day, she said, “I’m scared to do anything.”

“I’m not saying I have to be back on Xanax,” Ms. Graham said. “But if this ain’t doing it, something’s got to change.”

But Dr. Hedges said that such complaints had been relatively few, with about 90 percent of the patients who were taking Xanax already off it.

“We haven’t had any episodes of violence, any acting out or difficult behavior in our clinics,” he said. “We tried to prepare for that, but in fact it hasn’t happened.”

    Abuse of Xanax Leads a Clinic to Halt Supply, NYT, 14.9.2011,
    http://www.nytimes.com/2011/09/14/us/in-louisville-a-centers-doctors-cut-off-xanax-prescriptions.html

An Immune System Trained to Kill Cancer

September 12, 2011
The New York Times
By DENISE GRADY

PHILADELPHIA — A year ago, when chemotherapy stopped working against his leukemia, William Ludwig signed up to be the first patient treated in a bold experiment at the University of Pennsylvania. Mr. Ludwig, then 65, a retired corrections officer from Bridgeton, N.J., felt his life draining away and thought he had nothing to lose.

Doctors removed a billion of his T-cells — a type of white blood cell that fights viruses and tumors — and gave them new genes that would program the cells to attack his cancer. Then the altered cells were dripped back into Mr. Ludwig’s veins.

At first, nothing happened. But after 10 days, hell broke loose in his hospital room. He began shaking with chills. His temperature shot up. His blood pressure shot down. He became so ill that doctors moved him into intensive care and warned that he might die. His family gathered at the hospital, fearing the worst.

A few weeks later, the fevers were gone. And so was the leukemia.

There was no trace of it anywhere — no leukemic cells in his blood or bone marrow, no more bulging lymph nodes on his CT scan. His doctors calculated that the treatment had killed off two pounds of cancer cells.

A year later, Mr. Ludwig is still in complete remission. Before, there were days when he could barely get out of bed; now, he plays golf and does yard work.

“I have my life back,” he said.

Mr. Ludwig’s doctors have not claimed that he is cured — it is too soon to tell — nor have they declared victory over leukemia on the basis of this experiment, which involved only three patients. The research, they say, has far to go; the treatment is still experimental, not available outside of studies.

But scientists say the treatment that helped Mr. Ludwig, described recently in The New England Journal of Medicine and Science Translational Medicine, may signify a turning point in the long struggle to develop effective gene therapies against cancer. And not just for leukemia patients: other cancers may also be vulnerable to this novel approach — which employs a disabled form of H.I.V.-1, the virus that causes AIDS, to carry cancer-fighting genes into the patients’ T-cells. In essence, the team is using gene therapy to accomplish something that researchers have hoped to do for decades: train a person’s own immune system to kill cancer cells.

Two other patients have undergone the experimental treatment. One had a partial remission: his disease lessened but did not go away completely. Another had a complete remission. All three had had advanced chronic lymphocytic leukemia and had run out of chemotherapy options. Usually, the only hope for a remission in such cases is a bone-marrow transplant, but these patients were not candidates for it.

Dr. Carl June, who led the research and directs translational medicine in the Abramson Cancer Center at the University of Pennsylvania, said that the results stunned even him and his colleagues, Dr. David L. Porter, Bruce Levine and Michael Kalos. They had hoped to see some benefit but had not dared dream of complete, prolonged remissions. Indeed, when Mr. Ludwig began running fevers, the doctors did not realize at first that it was a sign that his T-cells were engaged in a furious battle with his cancer.

Other experts in the field said the results were a major advance.

“It’s great work,” said Dr. Walter J. Urba of the Providence Cancer Center and Earle A. Chiles Research Institute in Portland, Ore. He called the patients’ recoveries remarkable, exciting and significant. “I feel very positive about this new technology. Conceptually, it’s very, very big.”

Dr. Urba said he thought the approach would ultimately be used against other types of cancer as well as leukemia and lymphoma. But he cautioned, “For patients today, we’re not there yet.” And he added the usual scientific caveat: To be considered valid, the results must be repeated in more patients, and by other research teams.

Dr. June called the techniques “a harvest of the information from the molecular biology revolution over the past two decades.”

Hitting a Genetic Jackpot

To make T-cells search out and destroy cancer, researchers must equip them to do several tasks: recognize the cancer, attack it, multiply, and live on inside the patient. A number of research groups have been trying to do this, but the T-cells they engineered could not accomplish all the tasks. As a result, the cells’ ability to fight tumors has generally been temporary.

The University of Pennsylvania team seems to have hit all the targets at once. Inside the patients, the T-cells modified by the researchers multiplied to 1,000 to 10,000 times the number infused, wiped out the cancer and then gradually diminished, leaving a population of “memory” cells that can quickly proliferate again if needed.

The researchers said they were not sure which parts of their strategy made it work — special cell-culturing techniques, the use of H.I.V.-1 to carry new genes into the T-cells, or the particular pieces of DNA that they selected to reprogram the T-cells.

The concept of doctoring T-cells genetically was first developed in the 1980s by Dr. Zelig Eshhar at the Weizmann Institute of Science in Rehovot, Israel. It involves adding gene sequences from different sources to enable the T-cells to produce what researchers call chimeric antigen receptors, or CARs — protein complexes that transform the cells into, in Dr. June’s words, “serial killers.”

Mr. Ludwig’s disease, chronic lymphocytic leukemia is a cancer of B-cells, the part of the immune system that normally produces antibodies to fight infection. All B-cells, whether healthy or leukemic, have on their surfaces a protein called CD19. To treat patients with the disease, the researchers hoped to reprogram their T-cells to find CD19 and attack B-cells carrying it.

But which gene sequences should be used to reprogram the T-cells, from which sources? And how do you insert them?

Various research groups have used different methods. Viruses are often used as carriers (or vectors) to insert DNA into other cells because that kind of genetic sabotage is exactly what viruses normally specialize in doing. To modify their patients’ T-cells, Dr. June and his colleagues tried a daring approach: they used a disabled form of H.I.V.-1. They are the first ever to use H.I.V.-1 as the vector in gene therapy for cancer patients (the virus has been used in other diseases).

The AIDS virus is a natural for this kind of treatment, Dr. June said, because it evolved to invade T-cells. The idea of putting any form of the AIDS virus into people sounds a bit frightening, he acknowledged, but the virus used by his team was “gutted” and was no longer harmful. Other researchers had altered and disabled the virus by adding DNA from humans, mice and cows, and from a virus that infects woodchucks and another that infects cows. Each bit was chosen for a particular trait, all pieced together into a vector that Dr. June called a “Rube Goldberg-like solution” and “truly a zoo.”

“It incorporates the ability of H.I.V. to infect cells but not to reproduce itself,” he said.

To administer the treatment, the researchers collected as many of the patients’ T-cells as they could by passing their blood through a machine that removed the cells and returned the other blood components back into the patients’ veins. The T-cells were exposed to the vector, which transformed them genetically, and then were frozen. Meanwhile, the patients were given chemotherapy to deplete any remaining T-cells, because the native T-cells might impede the growth of the altered ones. Finally, the T-cells were infused back into the patients.

Then, Dr. June said, “The patient becomes a bioreactor” as the T-cells proliferate, pouring out chemicals called cytokines that cause fever, chills, fatigue and other flulike symptoms.

The treatment wiped out all of the patients’ B-cells, both healthy ones and leukemic ones, and will continue to do for as long as the new T-cells persist in the body, which could be forever (and ideally should be, to keep the leukemia at bay). The lack of B-cells means that the patients may be left vulnerable to infection, and they will need periodic infusions of a substance called intravenous immune globulin to protect them.

So far, the lack of B-cells has not caused problems for Mr. Ludwig. He receives the infusions every few months. He had been receiving them even before the experimental treatment because the leukemia had already knocked out his healthy B-cells.

One thing that is not clear is why Patient 1 and Patient 3 had complete remissions, and Patient 2 did not. The researchers said that when Patient 2 developed chills and fever, he was treated with steroids at another hospital, and the drugs may have halted the T-cells’ activity. But they cannot be sure. It may also be that his disease was too severe.

The researchers wrote an entire scientific article about Patient 3, which was published in The New England Journal of Medicine. Like the other patients, he also ran fevers and felt ill, but the reaction took longer to set in, and he also developed kidney and liver trouble — a sign of tumor lysis syndrome, a condition that occurs when large numbers of cancer cells die off and dump their contents, which can clog the kidneys. He was given drugs to prevent kidney damage. He had a complete remission.

What the journal article did not mention was that Patient 3 was almost not treated.

Because of his illness and some production problems, the researchers said, they could not produce anywhere near as many altered T-cells for him as they had for the other two patients — only 14 million (“a mouse dose,” Dr. Porter said), versus 1 billion for Mr. Ludwig and 580 million for Patient 2. After debate, they decided to treat him anyway.

Patient 3 declined to be interviewed, but he wrote anonymously about his experience for the University of Pennsylvania Web site. When he developed chills and a fever, he said, “I was sure the war was on — I was sure C.L.L. cells were dying.”

He wrote that he was a scientist, and that when he was young had dreamed of someday making a discovery that would benefit mankind. But, he concluded, “I never imagined I would be part of the experiment.”

When he told Patient 3 that he was remission, Dr. Porter said, they both had tears in their eyes.

Not Without Danger to Patients

While promising, the new techniques developed by the University of Pennsylvania researchers are not without danger to patients. Engineered T-cells have attacked healthy tissue in patients at other centers. Such a reaction killed a 39-year-old woman with advanced colon cancer in a study at the National Cancer Institute, researchers there reported last year in the journal Molecular Therapy.

She developed severe breathing trouble 15 minutes after receiving the T-cells, had to be put on a ventilator and died a few days later. Apparently, a protein target on the cancer cells was also present in her lungs, and the T-cells homed in on it.

Researchers at Memorial Sloan Kettering Cancer in New York also reported a death last year in a T-cell trial for leukemia (also published in Molecular Therapy). An autopsy found that the patient had apparently died from sepsis, not from the T-cells, but because he died just four days after the infusion, the researchers said they considered the treatment a possible factor.

Dr. June said his team hopes to use T-cells against solid tumors, including some that are very hard to treat, like mesothelioma and ovarian and pancreatic cancer. But possible adverse reactions are a real concern, he said, noting that one of the protein targets on the tumor cells is also found on membranes that line the chest and abdomen. T-cell attacks could cause serious inflammation in those membranes and mimic lupus, a serious autoimmune disease.

Even if the T-cells do not hit innocent targets, there are still risks. Proteins they release could cause a “cytokine storm”— high fevers, swelling, inflammation and dangerously low blood pressure — which can be fatal. Or, if the treatment rapidly kills billions of cancer cells, the debris can damage the kidney and cause other problems.

Even if the new T-cell treatment proves to work, the drug industry will be needed to mass produce it. But Dr. June said the research is being done only at universities, not at drug companies. For the drug industry to take interest, he said, there will have to be overwhelming proof that the treatment is far better than existing ones.

“Then I think they’ll jump into it,” he said. “My challenge now is to do this in a larger set of patients with randomization, and to show that we have the same effects.”

Mr. Ludwig said that when entered the trial, he had no options left. Indeed, Dr. June said that Mr. Ludwig was “almost dead” from the leukemia, and the effort to treat him was a “Hail Mary.”

Mr. Ludwig said: “I don’t recall anybody saying there was going to be a remission. I don’t think they were dreaming to that extent.”

The trial was a Phase 1 study, meaning that its main goal was to find out whether the treatment was safe, and at what dose. Of course, doctors and patients always hope that there will be some benefit, but that was not an official endpoint.

Mr. Ludwig thought that if the trial could buy him six months or a year, it would be worth the gamble. But even if the study did not help him, he felt it would still be worthwhile if he could help the study.

When the fevers hit, he had no idea that might be a good sign. Instead, he assumed the treatment was not working. But a few weeks later, he said that his oncologist, Dr. Alison Loren, told him, “We can’t find any cancer in your bone marrow.”

Remembering the moment, Mr. Ludwig paused and said, “I got goose bumps just telling you those words.”

“I feel wonderful,” Mr. Ludwig said during a recent interview. “I walked 18 holes on the golf course this morning.”

Before the study, he was weak, suffered repeated bouts of pneumonia and was wasting away. Now, he is full of energy. He has gained 40 pounds. He and his wife bought an R.V., in which they travel with their grandson and nephew. “I feel normal, like I did 10 years before I was diagnosed,” Mr. Ludwig said. “This clinical trial saved my life.”

Dr. Loren said in an interview, “I hate to say it in that dramatic way, but I do think it saved his life.”

Mr. Ludwig said that Dr. Loren told him and his wife something he considered profound. “She said, ‘We don’t know how long it’s going to last. Enjoy every day,’ ” Mr. Ludwig recalled.

“That’s what we’ve done ever since.”

    An Immune System Trained to Kill Cancer, NYT, 12.9.2011,
    http://www.nytimes.com/2011/09/13/health/13gene.html

One Sperm Donor, 150 Offspring

September 5, 2011
The New York Times
By JACQUELINE MROZ

Cynthia Daily and her partner used a sperm donor to conceive a baby seven years ago, and they hoped that one day their son would get to know some of his half siblings — an extended family of sorts for modern times.

So Ms. Daily searched a Web-based registry for other children fathered by the same donor and helped to create an online group to track them. Over the years, she watched the number of children in her son’s group grow.

And grow.

Today there are 150 children, all conceived with sperm from one donor, in this group of half siblings, and more are on the way. “It’s wild when we see them all together — they all look alike,” said Ms. Daily, 48, a social worker in the Washington area who sometimes vacations with other families in her son’s group.

As more women choose to have babies on their own, and the number of children born through artificial insemination increases, outsize groups of donor siblings are starting to appear. While Ms. Daily’s group is among the largest, many others comprising 50 or more half siblings are cropping up on Web sites and in chat groups, where sperm donors are tagged with unique identifying numbers.

Now, there is growing concern among parents, donors and medical experts about potential negative consequences of having so many children fathered by the same donors, including the possibility that genes for rare diseases could be spread more widely through the population. Some experts are even calling attention to the increased odds of accidental incest between half sisters and half brothers, who often live close to one another.

“My daughter knows her donor’s number for this very reason,” said the mother of a teenager conceived via sperm donation in California who asked that her name be withheld to protect her daughter’s privacy. “She’s been in school with numerous kids who were born through donors. She’s had crushes on boys who are donor children. It’s become part of sex education” for her.

Critics say that fertility clinics and sperm banks are earning huge profits by allowing too many children to be conceived with sperm from popular donors, and that families should be given more information on the health of donors and the children conceived with their sperm. They are also calling for legal limits on the number of children conceived using the same donor’s sperm and a re-examination of the anonymity that cloaks many donors.

“We have more rules that go into place when you buy a used car than when you buy sperm,” said Debora L. Spar, president of Barnard College and author of “The Baby Business: How Money, Science and Politics Drive the Commerce of Conception.” “It’s very clear that the dealer can’t sell you a lemon, and there’s information about the history of the car. There are no such rules in the fertility industry right now.”

Although other countries, including Britain, France and Sweden, limit how many children a sperm donor can father, there is no such limit in the United States. There are only guidelines issued by the American Society for Reproductive Medicine, a professional group that recommends restricting conceptions by individual donors to 25 births per population of 800,000.

No one knows how many children are born in this country each year using sperm donors. Some estimates put the number at 30,000 to 60,000, perhaps more. Mothers of donor children are asked to report a child’s birth to the sperm bank voluntarily, but just 20 to 40 percent of them do so, said Wendy Kramer, founder of the Donor Sibling Registry.

Because of this dearth of records, many families turn to the registry’s Web site, donorsiblingregistry.com, for information about a child’s half brothers or half sisters.

Ms. Kramer, who had her son, Ryan, through a sperm donor, started the registry in 2000 to help connect so-called donor families. On the Web site, parents can register the birth of a child and find half siblings by looking up a number assigned to a sperm donor. Many parents, she said, are shocked to learn just how many half siblings a child has.

“They think their daughter may have a few siblings,” Ms. Kramer said, “but then they go on our site and find out their daughter actually has 18 brothers and sisters. They’re freaked out. I’m amazed that these groups keep growing and growing.”

Ms. Kramer said that some sperm banks in the United States have treated donor families unethically and that it is time to consider new legislation.

“Just as it’s happened in many other countries around the world,” Ms. Kramer said, “we need to publicly ask the questions ‘What is in the best interests of the child to be born?’ and ‘Is it fair to bring a child into the world who will have no access to knowing about one half of their genetics, medical history and ancestry?’

“These sperm banks are keeping donors anonymous, making women babies and making a lot of money. But nowhere in that formula is doing what’s right for the donor families.”

Many of those questions were debated in Britain shortly after the birth there, in 1978, of Louise Brown, the first baby born using in vitro fertilization. In 1982, the British government appointed a committee, led by Mary Warnock, a well-known English philosopher, to look into the issues surrounding reproductive health.

The groundbreaking Warnock Report contained a list of recommendations, including regulation of the sale of human sperm and embryos and strict limits on how many children a donor could father (10 per donor). The regulations have become a model for industry practices in other countries.

“It is quite unpredictable what the ultimate effect on the gene pool of a society might be if donors were permitted to donate as many times as they chose,” Baroness Warnock wrote recently in an e-mail.

Without limits, the same donor could theoretically produce hundreds of related children. And it is even possible that accidental incest could occur among hundreds of half siblings, said Naomi R. Cahn, a law professor at George Washington University and the author of “Test Tube Families: Why the Fertility Markets Need Legal Regulation.”

Sperm donors, too, are becoming concerned. “When I asked specifically how many children might result, I was told nobody knows for sure but that five would be a safe estimate,” said a sperm donor in Texas who asked that his name be withheld because of privacy concerns. “I was told that it would be very rare for a donor to have more than 10 children.”

He later discovered in the Donor Sibling Registry that some donors had dozens of children listed. “It was all about whatever they could get away with,” he said of the sperm bank to which he donated. “It is unfair and reprehensible to the donor families, donors and donor children.”

Ms. Kramer, the registry’s founder, said that one sperm donor on her site learned that he had 70 children. He now keeps track of them all on an Excel spreadsheet. “Every once in a while he gets a new kid or twins,” she said. “It’s overwhelming, and not what he signed up for. He was promised low numbers of children.”

The fertility industry has long resisted regulation, but the explosion of related half siblings may change that. Dr. Robert G. Brzyski, chairman of the American Society for Reproductive Medicine ethics committee, had been skeptical that there could be donors with more than 100 children. But now, he said, it is time to take another look at donor limits.

“In the past, when decisions were made about how many children should be attributed to a donor, it was based on estimates of the risk of unintended consanguinity between brothers and sisters who could meet and marry,” Dr. Brzyski said. “I think those models were very limited in their vision when they were created. Now I think there needs to be a reassessment of the criteria and the policies regarding the appropriate number of offspring.”

Because there is so much secrecy surrounding sperm and egg donations, Ms. Kramer said, it has been difficult for families of children born via sperm donation to step forward with their concerns. Some heterosexual couples never tell a child that he or she is the product of a sperm donation.

Ms. Daily, the Washington social worker, said that other parents in her son’s group had been secretive because of fears that their children would be stigmatized. She and other donor parents are coming forward, she said, because they “need to start advocating for some regulation.”

Experts are not certain what it means to a child to discover that he or she is but one of 50 children — or even more. “Experts don’t talk about this when they counsel people dealing with infertility,” Ms. Kramer said. “How do you make connections with so many siblings? What does family mean to these children?”

    One Sperm Donor, 150 Offspring, NYT, 5.9.2011,
    http://www.nytimes.com/2011/09/06/health/06donor.html

G.O.P. Candidates’ Stances on Health Care

Mask Their Records as Governors

September 3, 2011
The New York Times
By KEVIN SACK

The three most prominent current or former governors running for president — Rick Perry, Mitt Romney and Jon M. Huntsman Jr. — are firmly united in their commitment to repealing President Obama’s health care law. But that unanimity masks a broad divergence in their approaches to the issue while in office, spanning the spectrum of Republican positioning.

The place of health care in the Republican primaries will necessarily be defined by Mr. Romney’s skill at neutralizing criticism of his landmark Massachusetts experiment and its paternity of “Obamacare,” as opponents have dubbed the law. But each of the governors has vulnerabilities, and they have sought thus far to credential themselves less by their own past records than by their current opposition to what is officially known as the Affordable Care Act.

“They are more focused on expressing that view than showing how their health care records as governor reveal what they would do as president,” said Alan Weil, executive director of the National Academy for State Health Policy.

The politics of the primaries have made toxic any consideration of once-conservative concepts like health insurance mandates and marketplace exchanges, because of their association with Mr. Obama’s plan. But in a different day and environment, Mr. Romney in Massachusetts and Mr. Huntsman in Utah embraced those very devices as state solutions, to differing degrees.

Mr. Perry, by contrast, eschewed direct efforts to expand coverage in Texas and cemented its status as the state with the highest rate of people without insurance.

When Mr. Perry succeeded George W. Bush in December 2000, about 22 percent of Texans had no insurance, second only to New Mexico. After Mr. Perry’s decade in office, Texas now claims the highest uninsured rate, at 26 percent, as well as other distinctions like the lowest rate of prenatal care.

Regardless, Mr. Perry has offered few initiatives to extend coverage. Instead, under the banner of state sovereignty, he has waged a running battle against the ballooning cost and structure of Medicaid, which covers more than a third of Texas children. At various points, Mr. Perry and the Republican-controlled Legislature have cut Medicaid benefits and provider reimbursement rates and made enrollment more onerous.

“The governor believes that expanding government-sponsored insurance is not the answer,” said a spokeswoman, Catherine Frazier. “Nor is requiring people to purchase it. He looks to free-market solutions.”

Any failure to cover more Texans, Ms. Frazier said, is the federal government’s for declining, under Mr. Bush and Mr. Obama, to grant Mr. Perry’s requests to lift federal restrictions on Medicaid eligibility and benefits.

Rather than expanding public insurance, Mr. Perry sought to improve access by revamping the medical liability system. In 2003, he backed a successful measure that limited noneconomic damages against physicians and hospitals to a total of $750,000.

Mr. Perry boasted in New Hampshire last month that the law resulted in “21,000 more physicians practicing medicine in Texas,” attracting specialists to underserved counties.

But three law professors — Bernard Black of Northwestern University, David A. Hyman of the University of Illinois and Charles Silver of the University of Texas — find deep flaws in Mr. Perry’s calculations and conclude that the supply of practicing doctors actually increased at a slower rate after the 2003 changes than before.

In working papers, the researchers assert that tort reform significantly reduced the number and cost of liability claims. But they found no evidence that it slowed the growth of health care costs.

Mr. Perry has railed against the 2010 federal health law as “socialism on American soil” and strongly backs litigation challenging its requirement that most Americans, starting in 2014, obtain insurance.

But his state agencies have accepted nearly $20 million in grants authorized by the act, including $1 million to plan for the new insurance marketplaces known as exchanges. Nonetheless, Mr. Perry this year persuaded the Legislature to shelve a Republican bill to begin the planning process.

“He thought it would hurt our legal challenge to the law,” said State Representative John Zerwas, the measure’s sponsor. “And whether we like it or not, health insurance exchange has become synonymous with Obamacare, and there are political consequences to that.”

Mr. Perry continues to pay a political price for one decision he made to impose a health care mandate — an executive order in 2007 that made Texas the first state to require young girls to be vaccinated against cervical cancer with Gardasil. The order infuriated conservatives, and the Legislature quickly passed a bill to overturn it, which Mr. Perry allowed to take effect without his signature.

The governor, whose former chief of staff was a lobbyist for Merck, the maker of Gardasil, defended his “pro-life decision” in a debate last year. But after announcing his bid for president last month, he began describing it as a mistake.

One day before Mr. Romney signed his landmark 2006 health care bill amid pomp at Faneuil Hall, he declared victory in a column in The Boston Globe: “Every uninsured citizen in Massachusetts will soon have affordable health insurance and the costs of health care will be reduced.”

Mr. Romney is batting .500.

For the 10 percent of residents who had been uninsured, the commonwealth’s coverage mandate, coupled with government subsidies for the poor, has proved a striking success. A study last year concluded that 98.1 percent of residents, and 99.8 percent of children, had health insurance, leading the country. The state also found, to the surprise of some, that the share of employers contributing to their workers’ coverage (rather than accepting a modest penalty for not doing so) had risen.

But the law was not intended to make a serious assault on the state’s above-average health costs. A recent state report concluded that growth in private insurance premiums since 2006 had outpaced the increase in national heath care spending.

In pushing for the law, which features an exchange and requires insurers to cover pre-existing conditions, Mr. Romney championed an insurance mandate as the “ultimate conservative idea.” The targets of his “personal responsibility principle” were the free-riders who gambled by not buying policies and then relied on taxpayers, hospitals and the privately insured to cover the cost of their uncompensated care.

Mr. Romney could not have known then that his legacy would become such a bludgeon, with Mr. Perry, Mr. Huntsman and, impishly, Mr. Obama crediting him for the blueprint of the federal overhaul.

Tax increases have been needed to keep the Massachusetts plan afloat. But they have not been back-breaking, largely because the federal government underwrites much of the subsidized coverage. Mr. Romney is quick to remind voters that the Democratic-led Legislature overrode his veto of the requirement that employers contribute to their workers’ coverage and of benefits he considered gold-plated.

As a national candidate, Mr. Romney has argued that the law was appropriate for Massachusetts but is constitutionally prohibited as a federal solution. He does not, however, disown it.

“I’m not going to back away from the fact that I signed that bill,” Mr. Romney said recently in New Hampshire.

In Utah, Mr. Huntsman was clearly intrigued by what Mr. Romney had achieved, and in 2007, his third year in office, he set a goal of cutting the number of uninsured in half by 2010. With about 17 percent of residents uninsured, the governor viewed expanded coverage as a way to lower costs for employers and stoke his state’s competitiveness.

He had already lifted a spending cap on the state’s Children’s Health Insurance Program, which allowed unlimited enrollment and contributed to declines in the number of young uninsured.

In 2007, he hired John T. Nielsen, a former hospital system lawyer, to investigate whether “we could replicate what Massachusetts had done,” Mr. Nielsen said. He also lent his aides to a high-powered working group convened by the United Way of Salt Lake that ultimately devised a plan that relied on an exchange and an individual mandate.

In at least two interviews that year, Mr. Huntsman described a mandate as necessary to achieving the kind of expansion he envisioned. “I think if you’re going to get it done and get it done right, mandate has to be part of it in some way, shape or form,” Mr. Huntsman told the public television station KUED.

But the governor’s top health advisers, including Mr. Nielsen and Dr. David N. Sundwall, his health commissioner, said Mr. Huntsman never expressed a preference for the mandate in their discussions. And once Greg Curtis, the House speaker at the time, informed Huntsman aides that the mandate would be a nonstarter in the Republican-controlled Legislature, Mr. Huntsman did not push back.

“He’s a pragmatic politician,” Mr. Sundwall said. “He said, ‘Then let’s go with what we can get.’ ”

The resulting package, enacted in 2008, featured a scaled-down exchange, available only to small businesses. It has attracted 165 employers covering 4,206 workers and dependents, one-fiftieth the number in the Massachusetts exchange.

As a presidential candidate, Mr. Huntsman gives little sense that he was ever open to an insurance mandate. Asked on CNN last month how he differed from Mr. Romney, he answered: “How about a free-market approach to health care reform instead of a heavy handed Obama-like mandate?”

    G.O.P. Candidates’ Stances on Health Care Mask Their Records as Governors, NYT, 3.9.2011,
    http://www.nytimes.com/2011/09/04/us/politics/04governors.html

When Doctors Become Patients

September 2, 2011
The New York Times
By ERIC D. MANHEIMER

FRANK SINATRA’S greatest hits album, filtered through the jet engine noise of the Varian linear accelerator, was not what I felt like hearing at 9 a.m. I made a mental note to bring a Steely Dan CD for my next appointment.

I was strapped to a hard metal sheet, and the technician had just bolted my head down using a black mask that had been heat-molded to the contours of my face. The sheet and I would slide first up and then back in an overhead arc that would send high-energy electrons into my head and neck from computerized data sets outlining my throat cancer and its spread into adjacent lymph nodes.

I wasn’t a doctor anymore. I was a patient.

That was almost three years ago. This spring, the Archives of Internal Medicine published a much-discussed study that showed that doctors might recommend different treatments for their patients than they would for themselves. They were far more likely to prescribe for patients a potentially life-saving treatment with severe side effects than they were to pick that treatment for themselves.

Understandably, people are worried that this means doctors know something they’re not telling their patients. But my own experience with illness taught me a simpler truth: when it comes to their own health, doctors are as irrational as everyone else.

I had squamous cell carcinoma of the throat, a pea-size lesion first, then the cancer spread to my lymph nodes. I knew that this was a bad actor; I’d seen the disease and its consequences many times while wearing a white coat, a stethoscope dangling from my neck, at a patient’s bedside.

At the beginning, I knew intellectually what was in store for me. I allowed myself to be a patient, to trust my doctors and let them lead me through the treatments and complications and side effects that rolled out with alarming regularity. I submitted to a brutal treatment regimen that had not changed in over 40 years. Two thousand units of radiation a day for 35 days, with high doses of platinum chemotherapy, followed, a year later, by a dissection of the right side of my neck to remove the lymph nodes in which the cancer had reappeared.

I soon realized I had no idea what kind of rabbit hole I had fallen into.

For my doctors, it was all about the numbers, the staging of my cancer, my loss of weight and strength. For me, too, it was about the numbers: the six feedings I pushed through the syringe into the plastic tube in my stomach every day; the number of steps I could take by myself; how many hours I had to wait before I could grind up the pill that allowed me to slip into unconsciousness.

But it was also about more: my world progressively shrinking to a small, sterile, asteroidal universe between the interminable nausea and the chemobrain that left my head both empty and feverish, between survival and death.

Survival was a percentage, and not a horrible one — 75 percent if I completed the treatment regimen, by the reckoning of my physicians. But more and more I found myself thinking about what would happen if I was in that 25 percent. If I completed the regimen and the tumor came back, there were no other treatment options. It was morphine and palliative care. I was 58 years old. Death was a 100 percent certainty, eventually. So did it matter?

During one particularly desperate hospitalization, after receiving blood transfusions and a drug to stimulate my white cells, I decided that I had had enough. I refused further radiation and chemotherapy. I lay in my bed and watched the events around me — the distress of my family, the helplessness of my doctors — without anxiety, comfortable that I had made the correct decision.

My doctors couldn’t override it or persuade me to change my mind, but, luckily, my wife, Diana, could and did. From my mental cocoon in the hospital bed, I could sense Diana at my side. “You’re going to finish the treatment,” she said softly. I did not have the energy, or perhaps the will, to disagree. She wheeled me down herself to finish my radiation treatments in the basement of the hospital.

My dreams of dying were not the products of anxious moments of terror. The life force had simply slipped away and made me ready to die. It had also rendered me incapable of making the right decision for myself. My disease was treatable and the odds were favorable. My doctors were professional and gentle but ultimately could not decide for me. When neither doctor nor patient can make the right decision, it is vital to have a caring family — though even here the legal and ethical issues are complicated.

Next week it will be three years since I first noticed the hoarseness that was a symptom of cancer, and I am back to work and a busy life. But my illness has changed me profoundly as a physician. Even having lived through this illness, I’m not sure that I would be any better prepared if I had to relive it again. No amount of doctoring can prepare you for being a patient.

If anything, it’s that recognition of vulnerability as well as expertise that makes me a better doctor today.

 

Eric D. Manheimer, the medical director of Bellevue Hospital Center,
is the author of the forthcoming memoir “Twelve Patients.”

    When Doctors Become Patients, NYT, 2.9.2011,
    http://www.nytimes.com/2011/09/03/opinion/when-doctors-become-patients.html

Maurice M. Rapport, Who Studied Serotonin, Dies at 91

September 2, 2011
The New York Times
By WILLIAM GRIMES

Maurice M. Rapport, a biochemist who helped isolate and name the neurotransmitter serotonin, which plays a role in regulating mood and mental states, and who first described its molecular structure, a development that led to the creation of a wide variety of psychiatric and other drugs, died on Aug. 18 in Durham, N.C. He was 91.

The death was confirmed by his daughter, Erica Rapport Gringle.

In the 1940s Dr. Rapport (pronounced RA-port) was a freshly minted biochemist from the California Institute of Technology when he began working at the Cleveland Clinic Foundation with Irvine H. Page, a leading specialist on high blood pressure and cardiovascular disease.

Scientists had known since the 1860s of a substance in the serum released during clotting that constricts blood vessels by acting on the smooth muscles of the blood-vessel walls. In the 20th century, researchers pinpointed its source in blood platelets, but its identity remained a mystery.

Dr. Rapport, working with Dr. Page and Arda A. Green, isolated the substance and, in a paper published in 1948, gave it a name: serotonin, derived from “serum” and “tonic.”

On his own, Dr. Rapport identified the structure of serotonin as 5-hydroxytryptamine, or 5-HT, as it is called by pharmacologists. His findings, published in 1949, made it possible for commercial laboratories to synthesize serotonin and study its properties as a neurotransmitter.

More than 90,000 scientific papers have been published on 5-HT, and the Serotonin Club, a professional organization, regularly holds conferences to report on research in the field.

Initially, researchers focused on agents to block serotonin, which, by constricting blood vessels, causes blood pressure to rise. After researchers discovered its presence in the brain, and its chemical similarity to LSD, which mimics serotonin in the brain, they began focusing on serotonin’s role in regulating mood and mental functioning.

Further research showed that serotonin also plays a critical role in the central nervous system — where it helps regulate mood, appetite, sex and sleep — and the gut.

This new understanding of the structure and functioning of serotonin led to a changing view of mental disorders as chemical imbalances and opened the way to the development of antidepressants and antipsychotic drugs that act on 5-HT, as well as drugs for treating cardiovascular and gastrointestinal disease.

Maurice Rapoport was born on Sept. 23, 1919, in Atlantic City. His father, a furrier who had emigrated from Russia, left the family when Maurice was a small child. His mother changed the spelling of the family name and Maurice later adopted the middle initial “M,” although it did not stand for anything.

After graduating from DeWitt Clinton High School in the Bronx, he earned a bachelor’s degree in chemistry from City College in 1940 and a doctorate in organic chemistry from Cal Tech in 1946. For his work on serotonin he was awarded a Fulbright Scholarship in 1952 to study with Dr. Daniel Bovet, later a Nobel Prize winner for his work in pharmacology, at the Istituto Superiore di Sanità in Rome.

After doing research in biochemistry at Columbia, immunology at the Sloan-Kettering Institute for Cancer Research and biochemistry at the Albert Einstein College of Medicine, Dr. Rapport joined the staff of the New York Psychiatric Institute, where he created the division of neuroscience by combining the old divisions of chemistry, pharmacology and bacteriology. He also held the post of professor of biochemistry at Columbia’s College of Physicians and Surgeons.

Dr. Rapport retired in 1986 and was a visiting professor in the neurology department of the Albert Einstein College of Medicine until his death.

Dr. Rapport did important research on cancer, cardiovascular disease, connective-tissue disease and demyelinating diseases, a type of nervous-system disorder that includes multiple sclerosis.

One productive area of his research focused on the immunological activity of lipids found in the nervous system, notably cytolipin H, which he isolated from human cancer tissue in 1958. He also identified the lipid galactocerebroside as the substance responsible for producing antigens specific to the brain, a finding that led to a better understanding of the immune system.

Dr. Rapport’s wife, Edith, died in 1988. He lived in Hastings-on-Hudson with his longtime companion, Nancy Reich, who survives him, before failing health made it necessary for him to move in with his daughter, Erica, in Durham, in July. Other survivors are his son, Ezra, of Oakland, Calif.; five grandchildren; and a great-granddaughter.

    Maurice M. Rapport, Who Studied Serotonin, Dies at 91, NYT, 2.9.2011,
    http://www.nytimes.com/2011/09/03/health/03rapport.html