10 Steps to Better Health Care - NYTimes.com

We have reached a sobering point in our national health-reform debate. Americans have recognized that our health system is bankrupting us and that we have dealt with this by letting the system price more and more people out of health care. So we are trying to decide if we are willing to change — willing to ensure that everyone can have coverage. That means banishing the phrase "pre-existing condition." It also means finding ways to pay for coverage for those who can't afford it without help.

Both of these steps stir heated argument, not to mention lobbyists' hearts. But what creates the deepest unease is considering what we will have to do about the system's exploding costs if pushing more people out is no longer an option. We have really discussed only two options: raising taxes or rationing care. The public is understandably alarmed.

There is a far more desirable alternative: to change how care is delivered so that it is both less expensive and more effective. But there is widespread skepticism about whether that is possible.

Yes, many European health systems have done it, but we are not Europe. And evidence that places like the Mayo Clinic in Minnesota or the Cleveland Clinic are doing it is likewise dismissed because their unique structures (for example, their physicians work on salary rather than being paid for each service) make them seem as far from Middle America as Sweden is.

Yet in studying communities all over America, not just a few unusual corners, we have found evidence that more effective, lower-cost care is possible.

To find models of success, we searched among our country's 306 Hospital Referral Regions, as defined by the Dartmouth Atlas of Health Care, for "positive outliers." Our criteria were simple: find regions with per capita Medicare costs that are low or markedly declining in rank and where federal measures of quality are above average. In the end, 74 regions passed our test.

So we invited physicians, hospital executives and local leaders from 10 of these regions to a meeting in Washington so they could explain how they do what they do. They came from towns big and small, urban and rural, North and South, East and West. Here's the list: Asheville, N.C.; Cedar Rapids, Iowa; Everett, Wash.; La Crosse, Wis.; Portland, Me.; Richmond, Va.; Sacramento; Sayre, Pa.; Temple, Tex.; and Tallahassee, Fla., which, despite not ranking above the 50th percentile in terms of quality, has made such great recent strides in both costs and quality that we thought it had something to teach us.

If the rest of America could achieve the performances of regions like these, our health care cost crisis would be over. Their quality scores are well above average. Yet they spend more than $1,500 (16 percent) less per Medicare patient than the national average and have a slower real annual growth rate (3 percent versus 3.5 percent nationwide).

Caveat: Because we relied on Medicare data for our selections, it is possible that some of these regions are not so low-cost from the viewpoint of non-Medicare patients. But overall data strongly suggest that most of these regions are providing excellent care for all patients while being far more successful than others at not overusing or misusing health care resources.

So how do they do that? Some have followed the Mayo model, with salaried doctors employed by a unified local system focused on quality of care: these include Temple, where the Scott and White clinic dominates the market, and Sayre, where the Guthrie Clinic does. Other regions, including Richmond and Everett, look more like most American communities, with several medical groups whose physicians are paid on a traditional fee-for-service basis. But they, too, have found ways to protect patients against the damaging incentives of a system that encourages fragmentation of care and the pursuit of revenues over patient needs.

The physicians and hospital leaders from Cedar Rapids told us how they have adopted electronic systems to improve communication among physicians and quality of care. Last year, they decided to investigate the overuse of CAT scans. They examined the data and found that in just one year 52,000 scans were done in a community of 300,000 people. A large portion of them were almost certainly unnecessary, not to mention possibly harmful, as CAT scans have about 1,000 times as much radiation exposure as a chest X-ray.

"I was embarrassed for us," said Jim Levett, a cardiac surgeon and the head of a large physician group. More important, the area's doctors and clinics are turning that embarrassment into change by seeking out solutions to reduce the expense and harm of unnecessary scans.

That number of scans in Cedar Rapids may seem shocking, but there is nothing surprising about it. Nationwide, we do 62 million CAT scans a year for 300 million people. So Cedar Rapids's rate was actually better than average. But all medicine is local. And until a community confronts what goes on in its own population — to the point of actually seeking the data and engaging those who can solve the problem — nothing will change.

The team from Portland told us of a collaboration of doctors, state officials, insurers and community leaders to improve care. For more than four years, physicians have been tracking some 60 measures of quality, like medication error rates for their patients, and meeting voluntary cost-reduction goals.

Asheville, after gaining state support to avoid antitrust concerns, merged two underutilized hospitals. In Sacramento, a decade of fierce competition among four rival health systems brought about elimination of unneeded beds, adoption of new electronic systems for patient data and a race to raise quality. Sacramento also went from being one of America's high-cost areas for health care to being among the low-cost elite.

In their own ways, each of these successful communities tells the same simple story: better, safer, lower-cost care is within reach. Many high-cost regions are just a few hours' drive from a lower-cost, higher-quality region. And in the more efficient areas, neither the physicians nor the citizens reported feeling that care is "rationed." Indeed, it's rational.

Many in Congress and the Obama administration seem to recognize this. The various reform bills making their way through the process have included provisions to protect successful medical communities by incorporating payment approaches that reward those that slow spending growth while improving patient outcomes. This is the right direction for reform.

There is a lot of troubling rhetoric being thrown around in the health care debate. But we don't need to be trapped between charges that reforms will ration care and doing nothing about costs and coverage. We must instead look at the communities that are already redesigning American health care for the better, and pursue ways for the nation to follow their lead.

Atul Gawande directs the Center for Surgery and Public Health at Brigham and Women's Hospital in Boston and is a staff writer at The New Yorker; Donald Berwick is the president of the Institute for Healthcare Improvement in Cambridge, Mass.; Elliott Fisher directs policy-reform efforts at the Dartmouth Institute for Health Policy and Clinical Practice; and Mark McClellan is the director of health care reform policy at the Brookings Institution. All are physicians.

http://www.nytimes.com/2009/08/13/opinion/13gawande.html?th=&emc=th&pagewanted=print

The Whole Foods Alternative to ObamaCare - WSJ.com

With a projected $1.8 trillion deficit for 2009, several trillions more in deficits projected over the next decade, and with both Medicare and Social Security entitlement spending about to ratchet up several notches over the next 15 years as Baby Boomers become eligible for both, we are rapidly running out of other people's money. These deficits are simply not sustainable. They are either going to result in unprecedented new taxes and inflation, or they will bankrupt us.

While we clearly need health-care reform, the last thing our country needs is a massive new health-care entitlement that will create hundreds of billions of dollars of new unfunded deficits and move us much closer to a government takeover of our health-care system. Instead, we should be trying to achieve reforms by moving in the opposite direction—toward less government control and more individual empowerment. Here are eight reforms that would greatly lower the cost of health care for everyone.

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http://online.wsj.com/article/SB10001424052970204251404574342170072865070.html?mod=djemEditorialPage

Screening Discovery Could Lead to New Anticancer Drugs - NYTimes.com

Researchers have discovered a way to identify drugs that can specifically attack and kill cancer stem cells, a finding that could lead to a new generation of anticancer medicines and a new strategy of treatment.

Many researchers believe that tumor growth is driven by cancerous stem cells that, for reasons not understood, are highly resistant to standard treatments. Chemotherapy agents may kill off 99 percent of cells in a tumor, but the stem cells that remain can make the cancer recur, the theory holds, or spread to other tissues to cause new cancers. Stem cells, unlike mature cells, can constantly renew themselves and are thought to be the source of cancers when, through mutations in their DNA, they throw off their natural restraints.

A practical test of this theory has been difficult because cancer stem cells are hard to recognize and have proved elusive targets. But a team at the Broad Institute, a Harvard-M.I.T. collaborative for genomics research, has devised a way of screening for drugs that attack cancer stem cells but leave ordinary cells unharmed.

Cancer stem cells are hard to maintain in sufficient numbers, but the Broad Institute team devised a genetic manipulation to keep breast cancer stem cells trapped in the stem cell state.

The team, led by Piyush B. Gupta, screened 16,000 chemicals, including all known chemotherapeutic agents approved by the Food and Drug Administration. The team reported in the Thursday issue of Cell that 32 of the chemicals selectively went after cancer stem cells. These particular chemicals may or may not make good drugs, but the screening system proves, the researchers say, that it is possible to single out cancer stem cells with drugs that leave ordinary cells alone. Only one of the 32 chemicals is approved as a drug for cancer.

Another approach to concentrating on cancer stem cells, based on the use of antibodies, was reported this month by OncoMed Pharmaceuticals, a company founded by Michael F. Clarke, a Stanford researcher who in 2003 discovered cancer stem cells in breast tumors.

If effective drugs against cancer stem cells can be developed, one obvious strategy would be to use them in combination with standard chemotherapeutic agents, so that all types of cells in a tumor could be attacked. That way, cancer would be attacked as AIDS is now — with a cocktail of chemicals that blocks all escape paths. Both the AIDS virus and cancer cells can change DNA to dodge an effective drug, but are thought to perish if confronted with many drugs at once.

Standard chemotherapy is effective because the chemicals are applied in such large doses that they kill all cells. But this approach is stressful for the patient.

"You could probably lower the doses considerably with a combination of drugs that attacked specific types of cell," Dr. Gupta said.

Eric S. Lander, director of the Broad Institute, said: "If we make a drug that kills 99.9 percent of the cells in a tumor but fails to kill the 0.1 percent, that is the real problem. It's a pyrrhic victory."

Dr. Lander said that given the new screening system and the idea of using combinations of drugs against cancer, there was "a potential for a real renaissance in cancer therapeutics."

"We have not been able to do that yet with cancer," he added, "but if we could, it's a numbers game, and we win."

The cancer stem cell theory has been thrust into the spotlight in recent years with the discovery of stem cells in many types of solid tumors, including those of the breast, brain, prostate, colon and pancreas. This month, a Stanford team led by Irving Weissman reported finding the stem cells of bladder cancer.

But the theory is not without critics.

"The cancer stem cell hypothesis has in the past year been challenged on many fronts," said Bert Vogelstein, a leading cancer geneticist at Johns Hopkins University. "For example, a paper on melanomas last year showed that 100 percent of melanoma cancer cells were cancer stem cells."

If many of a tumor's cells are stem cells, then existing chemotherapy agents are clearly killing them, Dr. Vogelstein said, and the cancer stem cell theory is not an effective guide to finding new drugs.

The theory has also aroused opposition because, in its extreme, it implies that standard chemotherapy goes after the wrong targets and is ineffective.

"It's the most amazing polarity that I've seen," Dr. Clarke, the Stanford researcher, said of the debate over stem cells among cancer researchers. "It's like two religions fighting."

Some advocates of the idea believe that to dissolve tumors, it would be necessary to go after only cancer stem cells, if such drugs existed. But the Broad Institute team and others take the view that a combination of drugs attacking each of the types of cells in a tumor would be best.

One reason for using a combination of drugs is the suspicion that mature cancer cells may be able to convert themselves back into stem cells, a route that is apparently prohibited to normal mature cells.

"The possibility is that the nonstem cells in a tumor may regenerate de novo new stem cells," said Robert Weinberg, a leading cancer biologist at M.I.T. and, a co-author with Dr. Lander of the Cell report. "If one had ways of treating both the stem cells and the nonstem cells, then the de novo generation of stem cells would be dealt with."

The basic insight of the cancer stem cell theory is that there is a hierarchy of cells in a tumor, with the stem cells at the top generating the mature cells that are the majority. Most researchers accept that this is a good description of leukemias because Gleevec, a highly effective drug for chronic myelogenous leukemia, does not kill stem cells, and the leukemia returns if the treatment is stopped.

But with solid tumors, Dr. Vogelstein said, "the jury is out." If stem cells are common in solid tumors, not just a small resistant reservoir of cells, "then there's no difference between the stem cells and the bulk cancer — so a screen for drugs to kill melanoma cells is by definition also going to kill the melanoma's cancer stem cells."

Still, in Dr. Vogelstein's view, the Broad Institute's new screening method is important whether or not the cancer stem cell theory is correct. "Because most of the compounds in use now clearly aren't doing the job we'd all like," he said, "then novel methods for screening could be extremely valuable."

The Broad Institute researchers hope that pharmaceutical companies will use their screening method to begin to develop drugs against cancer stem cells.

http://www.nytimes.com/2009/08/14/health/research/14cancer.html?em

Interrogation Inc. - 2 U.S. Architects of Harsh Tactics in 9/11’s Wake - NYTimes.com

Jim Mitchell and Bruce Jessen were military retirees and psychologists, on the lookout for business opportunities. They found an excellent customer in the Central Intelligence Agency, where in 2002 they became the architects of the most important interrogation program in the history of American counterterrorism.

They had never carried out a real interrogation, only mock sessions in the military training they had overseen. They had no relevant scholarship; their Ph.D. dissertations were on high blood pressure and family therapy. They had no language skills and no expertise on Al Qaeda.

But they had psychology credentials and an intimate knowledge of a brutal treatment regimen used decades ago by Chinese Communists. For an administration eager to get tough on those who had killed 3,000 Americans, that was enough.

So "Doc Mitchell" and "Doc Jessen," as they had been known in the Air Force, helped lead the United States into a wrenching conflict over torture, terror and values that seven years later has not run its course.

Dr. Mitchell, with a sonorous Southern accent and the sometimes overbearing confidence of a self-made man, was a former Air Force explosives expert and a natural salesman. Dr. Jessen, raised on an Idaho potato farm, joined his Air Force colleague to build a thriving business that made millions of dollars selling interrogation and training services to the C.I.A.

Seven months after President Obama ordered the C.I.A. interrogation program closed, its fallout still commands attention. In the next few weeks, Attorney General Eric H. Holder Jr. is expected to decide whether to begin a criminal torture investigation, in which the psychologists' role is likely to come under scrutiny. The Justice Department ethics office is expected to complete a report on the lawyers who pronounced the methods legal. And the C.I.A. will soon release a highly critical 2004 report on the program by the agency's inspector general.

Col. Steven M. Kleinman, an Air Force interrogator and intelligence officer who knows Dr. Mitchell and Dr. Jessen, said he thought loyalty to their country in the panicky wake of the Sept. 11 attacks prompted their excursion into interrogation. He said the result was a tragedy for the country, and for them.

"I feel their primary motivation was they thought they had skills and insights that would make the nation safer," Colonel Kleinman said. "But good persons in extreme circumstances can do horrific things."

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http://www.nytimes.com/2009/08/12/us/12psychs.html?th=&emc=th&pagewanted=all

Insurers’ Survey Points to Big Bills as Health Care Problem - NYTimes.com

A patient in Illinois was charged $12,712 for cataract surgery. Medicare pays $675 for the same procedure. In California, a patient was charged $20,120 for a knee operation that Medicare pays $584 for. And a New Jersey patient was charged $72,000 for a spinal fusion procedure that Medicare covers for $1,629.

The charges came out of a survey sponsored by America's Health Insurance Plans in which insurers were asked for some of the highest bills submitted to them in 2008.

The group, which represents 1,300 health insurance companies, said it had no data on the frequency of such high fees, saying that to its knowledge no one had studied that. But it said it did the survey in part to defend against efforts by the Obama administration to portray certain industry practices as a major part of the nation's health care problems.

The health insurers, saying they felt unfairly vilified, gave the report to The New York Times before posting it online on Tuesday, explaining that they wanted to show that doctors' fees are part of the health care problem.

The group said it had used Medicare payments for comparison because Medicare was so familiar and payments are, on average, about 80 percent of what private insurers pay.

"It's the wild, wild West when it comes to prices of anything in the U.S. health care system, whether for a doctor visit or for hospital charges," said Jonathan S. Skinner, a health economist at Dartmouth.

The situation is so irrational, said Uwe E. Reinhardt, a health economist at Princeton, that it simply cannot go on. "We will not emerge out of this decade with this lunacy," Dr. Reinhardt said, adding, "You worry about credit card charges, you scream for consumer protection — why not scream for it here?"

But Dr. Robert M. Wah, a spokesman for the American Medical Association, said there was another side to the story: insurers' low payments to doctors who enter into contracts with them and the doctors' difficulties, in many cases, in getting paid at all. That is why, he said, doctors may simply abandon insurance plans. Then patients end up with extra fees because they have to go outside their networks.

Karen M. Ignagni, president and chief executive of America's Health Insurance Plans, had a different view, saying: "As we think about the health care debate, what's been talked about is, What are the cost-sharing levels? What are the premium levels? How much do health plans pay? No politician has asked how much is being charged."

Some of the health care legislation being considered by Congress would require insurers to increase their disclosure to patients of possible out-of-network costs. And President Obama has proposed changing how Medicare sets its payments to doctors and hospitals. But there are no specific proposals to control prices for out-of-network medical services.

In the survey, patients were insured but saw doctors who were out of their networks of care providers. Those doctors have no obligation to accept the out-of-network fee from insurers as payment in full. Patients may then be accountable for the balance.

"That is what generally happens," said Susan Pisano, a spokeswoman for the health insurers' group. "The consumer is responsible."

The survey looked at 10 companies that insure patients in the 30 most populous states; the companies provided some of the highest bills from 2008. Researchers excluded two types of charges that were likely to be erroneous: those that were greater than 10,000 percent of Medicare's fees for a procedure, or more than 2,000 percent of Medicare's fees and also more than 50 percent higher than the next-highest bill for the same procedure.

State laws protecting patients from getting stuck with medical bills in excess of their normal deductibles or co-payments vary widely, said Betsy M. Pelovitz, the group's vice president for state policy. And, she said, the laws often offer little or no protection to patients who seek care outside their insurance networks.

In New York, patients with managed-care insurers cannot be asked to pay more than the applicable co-payment, deductible or co-insurance for an ambulance regardless of whether the provider is in or out of their network. In New Jersey, hospital emergency rooms treating Medicaid managed-care patients must accept Medicaid payments as payment in full and cannot bill patients extra. In Connecticut, a state law says it is "unfair trade practice" for medical providers to ask patients to pay more than a deductible or co-payment for services covered by their insurance.

But in general, patients hit with high bills from out-of-network doctors and hospitals may have little recourse, said Leslie Moran, senior vice president of the New York Health Plan Association. "When patients dig in their heels and say, 'No, I'm not going to pay it,' it sometimes goes to collection," she said.

While there is no way of knowing how often doctors submit exorbitant bills, insurers tell America's Health Insurance Plans that they see such bills "all the time, every day," Ms. Pisano said.

The New York Health Plan Association provided more examples. In testimony at a state hearing in October, it told of a Long Island surgeon who charged $23,500 for an emergency appendectomy. The patient's insurer paid its out-of-network fee of $4,629. The surgeon demanded the balance or said he would force the patient to pay. The insurance company paid the bill.

Patients who receive unexpected bills may not know what to do. That happened to Charles Bacchi's mother. Mr. Bacchi, executive vice president of the California Association of Health Plans, said his mother was admitted to a hospital that had just dropped its association with her insurer.

Mr. Bacchi's mother, who spent less than a week in the hospital, received a bill for nearly $90,000 and was told that her plan would pay only a small part of it. Mr. Bacchi said she was terrified and hid the bill. "She thought the entire family savings would go up in smoke," Mr. Bacchi said.

When his mother finally told him about the bill, Mr. Bacchi intervened, and eventually the matter was settled by the hospital and the insurance company.

No one intervened for Maria Davis, though, when her son fell and banged his mouth. Ms. Davis, a respiratory therapist in Miller Place on Long Island, took 4-year-old Ryan to an emergency room. "He was bleeding a lot, and it looked like he had a bad cut on the inside of his mouth," she said.

After a long wait, she said, a doctor said he would put in stitches but seemed uncomfortable treating the agitated child. When he said he could call a plastic surgeon, Ms. Davis agreed.

The plastic surgeon, Dr. Gregory J. Diehl of Port Jefferson, "was very nice, very gentle, very kind," Ms. Davis said. He put in three stitches, and Ms. Davis assumed her insurer, UnitedHealthcare, would cover the bill.

It did not. The bill was $6,000 — $300 for the emergency room consultation and $5,700 for putting in the stitches. The Davises paid their deductible of $350 and waited.

After the insurer paid $2,024.80, Dr. Diehl cut his bill by $2,100 and billed the Davises for the balance, $1,525.20. He did not return calls to his office.

So far, the Davises have not paid. "I told them I thought it was an unreasonable amount," said Jonathan Davis, Ryan's father.

"We have gotten several letters, and they have gotten more than a little threatening," Mr. Davis said. Had he known the doctor would charge $6,000, he said, "we may have looked for another doctor."

http://www.nytimes.com/2009/08/12/health/policy/12insure.html?th=&emc=th&pagewanted=all

A Day in the Life of a Family Doctor - Well Blog - NYTimes.com

How many different health problems do family doctors deal with in a given day? In a fascinating post on the blog Dr. Malia Reckons, family physician Dr. Timothy Malia decided to keep track of all the different health issues he had to treat on a single day. Here's his list:

Diabetes, type 2, poorly controlled
Hypertension
Obesity
Vaccinations (tetanus and pneumonia)
Low back pain in elderly man
Increased thoughts of suicide
Attention deficit disorder
Acne
Bronchitis
Insomnia
Emotional stress (marital and child issues)
Weight loss, unexplained
Infant - well child check
Complete physicals, father and son (camp forms completed)
Ringworm
Premature breast tissue development in infant
Toenail fungal infection
Dyshidrotic eczema
Lipoma (a benign fatty growth)
Allergic conjunctivitis
Sliver of fiberglass in finger
Alcoholism
High cholesterol
Asthma

At a time when Congress is debating health care reform, the list is a good reminder of the enormous responsibilities the family physician has as the gatekeeper of the health care system. Most experts agree that for any plan to succeed, reform must also address the growing shortage of family doctors. According to the American Academy of Family Physicians, most medical school graduates now choose better-paying specialty fields like dermatology or orthopedic surgery, a trend that is expected to lead to a shortage of tens of thousands of family doctors within a decade.

http://well.blogs.nytimes.com/2009/08/10/a-day-in-the-life-of-a-family-doctor/

Coping With Chemo Brain - Well Blog - NYTimes.com

Last week, my colleague Jane Brody explored the new scientific thinking about "chemo brain," the foggy thinking and forgetfulness that afflicts many cancer patients after treatment. This week, Jane offers advice for patients in "Taking Steps to Cope With Chemo Brain."

For years, patient complaints about the cognitive losses that seemed to follow cancer treatment were dismissed by doctors, who blamed memory problems on aging or the fatigue of illness. But more recently, many doctors are finally acknowledging chemo brain as a legitimate and vexing after-effect of chemotherapy.

If you have a question about chemo brain, be sure to check out the Consults blog, "When Cancer Treatment Affects Memory," where Dr. Daniel Silverman, a leading researcher in the field and co-author with Idelle Davidson of "Your Brain After Chemo: A Practical Guide to Lifting the Fog and Getting Back Your Focus," is answering questions.

http://well.blogs.nytimes.com/2009/08/11/coping-with-chemo-brain/

A Primer on the Details of Health Care Reform - NYTimes.com

With the debate over the future of health care now shifted from Capitol Hill to town halls, supporters and critics of the Democrats' legislative proposals are polishing their sound bites and sharpening their attack lines.

Increasingly, the battle looks like a presidential contest, with expensive advertising campaigns and Internet-driven efforts to mobilize local support. It can be difficult to sort fact from fiction, as angry protesters denounce the legislation at raucous public forums.

President Obama and his Democratic allies in Congress have made the health care overhaul their top priority, putting their political futures on the line. Democrats had hoped to spend the month whipping up support for the legislation, but instead find themselves on the defensive, responding to what Mr. Obama describes as "outlandish rumors" spread by critics.

Many Republicans view fighting the president as a smart political strategy, turning a potentially wonkish debate over Medicare reimbursement rates and subsidies for the uninsured into an ideological battle over the government's role in health care.

Each side hopes to win ground by boiling down one of the most complex policy discussions in history into digestible nuggets. For beachside viewers who might be more interested in iced-tea service than fee-for-service, here is a guide to the main fight points.

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http://www.nytimes.com/2009/08/10/health/policy/10facts.html?th=&emc=th&pagewanted=print

Brain Power - After Brain Injury, Fighting to Recall a Sense of Family and Self - Series - NYTimes.com

Adam Lepak looked over at his mother and said, "You're fake."

It was a Tuesday in July, late, and Cindy Lepak could see that her 19-year-old son was exhausted. Long days like this one, with hours of physical therapy and memory drills — I had a motorcycle accident, I hit my head and have trouble remembering new things, I had a motorcycle accident — often left him making these accusations.

"What do you mean 'fake,' Adam?" she said.

He hung his head. "You're not my real mom," he said. His voice changed. "I feel sorry for you, Cindy Lepak. You live in this world. You don't live in the real world."

Doctors have known for nearly 100 years that a small number of psychiatric patients become profoundly suspicious of their closest relationships, often cutting themselves off from those who love them and care for them. They may insist that their spouse is an impostor; that their grown children are body doubles; that a caregiver, a close friend, even their entire family is fake, a duplicate version.

Such delusions are often symptoms of schizophrenia. But in the last decade or so, researchers have documented similar delusions in hundreds of people who are not schizophrenic but have neurological problems including dementia, brain surgery and traumatic blows to the head.

A small group of brain scientists is now investigating misidentification syndromes, as the delusions are called, for clues to one of the most confounding problems in brain science: identity. How and where does the brain maintain the "self"?

What researchers are finding is that there is no single "identity spot" in the brain. Instead, the brain uses several different neural regions, working closely together, to sustain and update the identities of self and others. Learning what makes identity, researchers say, will help doctors understand how some people preserve their identities in the face of creeping dementia, and how others, battling injuries like Adam's, are sometimes able to reconstitute one.

"When I wrote up my first case like this back in 1987, no one was much interested; it was a curiosity," said Dr. Todd E. Feinberg, a neurologist and psychiatrist at the Albert Einstein College of Medicine and Beth Israel Medical Center, who just published a book on the topic, "From Axons to Identity." (Axons are nerve fibers.)

"Now there's an explosion of interest in these cases," Dr. Feinberg said, "because of their relation to the self, to the neurobiology of identity — to what it means to be human."

Who Is That?

"Who is that, Adam?" a physical therapist named Mike said on a recent morning, supporting the young man's lean frame in front of a full-length mirror; a nurse supported him from the other side. "Who do you see there?"

"Mike."

"That's right," said Pat Taisey, the nurse, who spends most days with him at home when the Lepaks are at work. "But who else do you see in the mirror, Adam?"

"You. Pat."

"Yes, but who else?" she said.

An uncertain smile creased Adam's face.

Two years ago, it was not a hard question to answer. He was a first-year college student with a girlfriend, a tight group of buddies. A vegetarian; a fitness nut; a master of sarcasm, of the lunatic prank. He was the drummer for Sacred Pledge, a "straight edge" band (no drugs, no alcohol, no promiscuous sex) in the Syracuse area.

After his senior year of high school in Weedsport, he climbed into a van and drove with the band across the country, playing clubs and parties, sleeping on people's floors, Dumpster diving for food, sleeping on the beach in California.

"I was so happy we let him go," Ms. Lepak said. "He decided that that life wasn't for him." He enrolled at Cayuga Community College in nearby Auburn, N.Y.

He was running late to class in October 2007, flying over a slight rise on Weedsport Sennett Road on a Honda Interceptor motorcycle, when he saw — too late — a car in his lane, stopped to make a turn. He dodged the car; he was wearing a helmet, but he lost the bike and tumbled hard over the asphalt. He spent most of the next six months in a near-vegetative state, mute and virtually immobile.

The diagnosis was diffuse axonal injury. "The textbook definition is essentially a blow that shuts down the bundle of wires responsible for keeping us conscious," said Dr. Jonathan Fellus, a neurologist at Kessler Institute for Rehabilitation in West Orange, N.J., who has overseen Adam's gradual recovery. "It's as if the major highways have taken a hit, and now the brain has to use back roads to function. But every brain responds differently. I have given up making predictions."

Researchers who have taken images of the brain as it processes information related to personal identity have noticed that several areas are particularly active. Called cortical midline structures, they run like an apple core from the frontal lobes near the forehead through the center of the brain.

These frontal and midline areas communicate with regions of the brain that process memory and emotion, in the medial temporal lobe, buried deep beneath each ear. And studies strongly suggest that in delusions of identity, these emotion centers are either not well connected to frontal midline areas or not providing good information. Mom looks and sounds exactly like Mom, but the sensation of her presence is lost. She seems somehow unreal.

More ...

http://www.nytimes.com/2009/08/09/health/research/09brain.html?hpw=&pagewanted=print

And You Thought a Prescription Was Private - NYTimes.com

More than 10 years after she tried without success to have a baby, Marcy Campbell Krinsk is still receiving painful reminders in her mail. The ads and promotions started after she bought fertility drugs at a pharmacy in San Diego.

Marketers got hold of her name, and she found coupons and samples in her mail that shadowed the growth of an imaginary child — at first, for Pampers and baby formula, then for discounts on family photos, and all the way through the years to gifts suitable for an elementary school graduate.

"I had three different in vitro procedures," said Ms. Krinsk, now 55, a former telecommunications executive who lives with her husband in San Diego. "To just go to the mailbox and get that stuff, time after time after time, it was just awful."

Like many other people, Ms. Krinsk thought that her prescription information was private. But in fact, prescriptions, and all the information on them — including not only the name and dosage of the drug and the name and address of the doctor, but also the patient's address and Social Security number — are a commodity bought and sold in a murky marketplace, often without the patients' knowledge or permission.

That may change if some little-noted protections from the Obama administration are strictly enforced. The federal stimulus law enacted in February prohibits in most cases the sale of personal health information, with a few exceptions for research and public health measures like tracking flu epidemics. It also tightens rules for telling patients when hackers or health care workers have stolen their Social Security numbers or medical information, as happened to Britney Spears, Maria Shriver and Farrah Fawcett before she died in June.

"The new rules will plug some gaping holes in our federal health privacy laws," said Deven McGraw, a health privacy expert at the nonprofit Center for Democracy and Technology in Washington. "For the first time, pharmacy benefit managers that handle most prescriptions and banks and contractors that process millions of medical claims will be held accountable for complying with federal privacy and security rules."

The law won't shut down the medical data mining industry, but there will be more restrictions on using private information without patients' consent and penalties for civil violations will be increased. Government agencies are still writing new regulations called for in the law.

Ms. Krinsk was never able to find out who sold her information, but companies that have been accused in lawsuits of buying and selling personal medical data include drugstore chains like Walgreens and data-mining companies like IMS Health and Verispan. CVS Caremark, which handles prescriptions for corporate clients, has also been accused of violating patients' privacy.

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http://www.nytimes.com/2009/08/09/business/09privacy.html?hpw=&pagewanted=print