Saturday, December 22, 2012

Is the Cure for Cancer Inside You? -

Claudia Steinman saw her husband's BlackBerry blinking in the dark. It had gone untouched for several days, in a bowl beside his keys, the last thing on anybody's mind. But about an hour before sunrise, she got up to get a glass of water and, while padding toward the kitchen, found an e-mail time-stamped early that morning — "Sent: Monday, Oct. 3, 2011, 5:23 a.m. Subject: Nobel Prize. Message: Dear Dr. Steinman, I have good news for you. The Nobel Assembly has today decided to award you the Nobel Prize in Physiology or Medicine for 2011." Before she finished reading, Claudia was hollering at her daughter to wake up. "Dad got the Nobel!" she cried. Alexis, still half-asleep, told her she was crazy. Her father had been dead for three days.

The Nobel Foundation doesn't allow posthumous awards, so when news of Ralph Steinman's death reached Stockholm a few hours later, a minor intrigue ensued over whether the committee would have to rescind the prize. It would not, in fact; but while newspapers stressed the medal mishap ("Nobel jury left red-faced by death of laureate"), they spent less time on the strange story behind the gaffe. That Steinman's eligibility was even in question, that he'd been dead for just three days instead of, say, three years, was itself a minor miracle.

In the spring of 2007, Steinman, a 64-year-old senior physician and research immunologist at Rockefeller University in New York, had come home from a ski trip with a bad case of diarrhea, and a few days later he showed up for work with yellow eyes and yellow skin — symptoms of a cancerous mass the size of a kiwi that was growing on the head of his pancreas. Soon he learned that the disease had made its way into nearby lymph nodes. Among patients with his condition, 80 percent are dead within the first year; another 90 percent die the year after that. When he told his children about the tumor over Skype, he said, "Don't Google it."

But for a man who had spent his life in the laboratory, who brought copies of The New England Journal of Medicine on hiking trips to Vermont and always made sure that family vacations overlapped with scientific symposia, there was only one way to react to such an awful diagnosis — as a scientist. The outlook for pancreatic cancer is so poor, and the established treatments so useless, that any patient who has the disease might as well shoot the moon with new, untested therapies. For Steinman, the prognosis offered the opportunity to run one last experiment.

In the long struggle that was to come, Steinman would try anything and everything that might extend his life, but he placed his greatest hope in a field he helped create, one based on discoveries for which he would earn his Nobel Prize. He hoped to reprogram his immune cells to defeat his cancer — to concoct a set of treatments from his body's own ingredients, which could take over from his chemotherapy and form a customized, dynamic treatment for his disease. These would be as far from off-the-shelf as medicines can get: vaccines designed for the tumor in his gut, made from the products of his plasma, that could only ever work for him.

Steinman would be the only patient in this makeshift trial, but the personalized approach for which he would serve as both visionary and guinea pig has implications for the rest of us. It is known as cancer immunotherapy, and its offshoots have just now begun to make their way into the clinic, and treatments have been approved for tumors of the skin and of the prostate. For his last experiment, conducted with no control group, Steinman would try to make his life into a useful anecdote — a test of how the treatments he assembled might be put to work. "Once he got diagnosed with cancer, he really started talking about changing the paradigm of cancer treatment," his daughter Alexis says. "That's all he knew how to do. He knew how to be a scientist."

First, Steinman needed to see his tumor. Not an M.R.I. or CT scan, but the material itself. The trouble was that most people with his cancer never have surgery. If there's cause to think the tumor has spread — and there usually is — it may not be worth the risk of having it removed, along with the bile duct, the gallbladder, large portions of the stomach and the duodenum. Luckily for Steinman, early scans showed that his tumor was a candidate for resection. On the morning of April 3, 2007, less than two weeks after his diagnosis, he went in for the four-hour procedure at Memorial Sloan-Kettering Cancer Center, just across the avenue from his office at Rockefeller University.

After two hours on the operating table, his surgeon, Dan Coit, lifted the tumor from his abdomen. It was about two and a half inches long. Coit stitched a short thread across its top and a longer one on the side — an embroidered code to help the pathologists get oriented — and sent the specimen upstairs, wrapped in a towel and nestled in a tray of ice.

Claudia and Alexis were waiting in the lobby, along with Sarah Schlesinger, a longtime friend and member of Steinman's lab, who is also a board-certified pathologist. It would be her job to manage the disbursement of the tumor to Steinman's colleagues around the world, so its every nuance could be tested and its fragments incorporated into the drugs that would compose his treatment. When she arrived at the lab upstairs and held the tumor, it was still so warm that she could feel the heat through her latex gloves.

She chopped and sliced the tumor into samples, based on a list that Steinman helped draw up beforehand. A few grams would be placed in screw-top vials filled with a preservative for their RNA. Steinman's administrative assistant would take another piece to Boston on an afternoon train, and some would go to a former student, Kang Liu, so she could sew confetti-sized squares of the tumor into living mice. If there was any left, they would send it to a researcher in Baltimore named Elizabeth Jaffee, who had mastered the art of culturing pancreatic cancer in a dish.

The mass was big enough that Schlesinger could get through all the items on the list. In the days, weeks and months that followed, Steinman's cancer was sent to labs in Boston and Baltimore, Toronto and Tübingen, Germany, Dallas and Durham, N.C. With help from friends and former students, he would squeeze every bit of data from his cancer that he could.

Steinman's last experiment would be, in many ways, the culmination of a new trend in cancer research: designing custom treatments for each patient. When he got sick, Steinman knew that the five-year survival rate for his kind of tumor was, at most, 1 in 10, even at Sloan-Kettering, one of the best oncology centers in the world. Typically, patients live six months. But he also knew that his chances might not be as bad as they looked. The means and medians of his disease were drawn from populations and so did not reflect the fact that every tumor is unique. Even tumors that look the same — cancers starting from a common organ, or a common kind of cell — may behave in different ways: some shrink and some expand; some succumb to chemotherapy. Now doctors can scan each tumor for clues about its DNA and use those clues to determine its strengths and weaknesses. Steinman could have his case described right down to the letters of its genome, in hopes of figuring out which therapies might work best for him.

This "personalized" approach to treating cancer, which subdivides the classic types according to distortions in their genes, has been growing at a rapid pace. In the past few years, laboratories financed by the government have set out to build a comprehensive atlas of the cancer genome — to collect 500 tumors from each of 25 kinds of the disease and then to analyze their DNA and RNA at a cost of more than $100 million a year. The advent of inexpensive genome sequencing has produced a gold rush in the commercial sector, too, with the promise that anyone's tumor can be sliced and processed and analyzed, until its genetic fingerprint is decoded.

Friday, December 21, 2012

Where Have All the Primary Care Doctors Gone? -

More and more, my family and friends are asking for my help in finding a primary care doctor. That they would be having trouble finding one doesn't surprise me. We've all been reading warnings about an impending doctor shortage for several years now.
What is alarming to me is that there are no sure-fire solutions in place that will bail us all out in time.
In the United States, we are now short approximately 9,000 primary care doctors. These are the general internists, family doctors, geriatricians and general pediatricians, the doctors responsible for diagnosing new illnesses, managing chronic ones, advocating preventive care and protecting wellness. And health care leaders predict that that deficit will worsen dramatically in the next 15 years. Specialties like general surgery, neurosurgery and emergency medicine will also become critically understaffed; but primary care will be hardest hit, with a shortfall of more than 65,000 doctors.
While the demands from a growing and aging population and an influx of 40 million patients newly covered by insurance are considered the main drivers of this crisis, there is no shortage of issues on the physician supply side.
For starters, only 2 percent of all medical students in a recent study expressed interest in practicing primary care as a general internist. Most continue to flock to subspecialty fields like dermatology, anesthesiology, radiology and ophthalmology.
And once trained, primary care practitioners are particularly vulnerable to burnout and more likely to leave clinical practice than doctors in subspecialties like cardiology or gastroenterology.
It's like the patient is bleeding faster than we can transfuse.
Experts have proposed several solutions to the doctor shortage. But for many worried patients and doctors, the best answer is seemingly the most obvious one: churn out more young doctors and funnel them into residency programs that train for primary care.
Unfortunately, according to a new study published in The Journal of the American Medical Association, it's not that obvious.
Researchers asked more than 50,000 doctors training in internal medicine about their career plans. As expected, the majority of these young doctors planned on becoming subspecialists.
What the researchers discovered, however, was that over the course of their training, almost half the young doctors who began wanting to become primary care doctors changed their minds, most deciding to pursue a subspecialty career instead. And by the time the three-year residency was finished, those numbers dwindled even further, with only one out of five indicating that they wanted to become primary care physicians.
Some of the young doctors surveyed were enrolled in a traditional training "track," which centers on inpatient and subspecialty care. But even a majority of those who pursued a primary care track, developed in the 1970s to encourage more doctors to choose primary care and which concentrates on medical work done in outpatient clinics, doctors' offices and other ambulatory settings, were planning to become subspecialists by the end of their training.
"The environment is such that even the primary care track training programs don't have a fighting chance," said lead author Dr. Colin P. West, an associate professor of medicine at the Mayo Clinic in Rochester, Minn., and associate program director of the internal medicine residency training program.
Much of the problem lies in what general practitioners have to look forward to. General practitioners work as many hours as, or more, than their subspecialty colleagues. Yet they have among thelowest reimbursement rates. They also shoulder disproportionate responsibility for the bureaucratic aspects of patient care, spending more time and money obtaining treatment authorization from insurance companies, navigating insurers' ever changing drug formularies and filling out health and disability forms. "All the paperwork," Dr. West said, "interferes with the patient-doctor relationship that drew them to general medicine in the first place and pushes trainees away from primary care unless they are remarkably committed to its goals."
But it is this subset of committed young doctors -- the one in five who still planned on a career in general medicine at the completion of their training -- that may help to provide the answer to the current primary care shortage. In this study, most were female, enrolled in primary care track programs and graduates of American.medical schools. Dr. West believes that understanding more about what attracted them to primary care, and why they remained committed, could help "make the entire field more attractive to more young doctors," he said.
"If we go with the simplistic view that opening more medical schools and more training slots will give us more primary care doctors, we may get a few more, but we're mostly going to end up with more subspecialists," Dr. West said. "And even the few additional primary care internal medicine doctors will not do much to address the shortage."
"The residents are voting with their feet," he added. "And they are telling us something really important."

Thursday, December 20, 2012

Study: U.S. Surgeons Still Leaving Things in Patients - Lindsay Abrams - The Atlantic

PROBLEM: When something goes wrong during a surgery that can be chalked up to human error or a breakdown in the chain of command -- say, a surgical sponge getting left behind in someone's abdomen -- surgeons refer to it as a "never event." Because they should never happen. Unfortunately, they sometimes still do. Measuring how, when, where, and why they happen is a step toward making them literal neverevents.

METHODOLOGY: Johns Hopkins researchers raided a federal trove of official medical malpractice claims to find instances where patients successfully sued -- meaning they needed to have had adequate proof to back up their claims -- over never events that nonetheless occurred. Specifically, they looked at incidents that occurred in the U.S. from 1990 to 2010.

RESULTS: "Never," according to their findings, occurs at least 4,082 times per year. Deaths attributable to these mistakes occurred in 6.6 percent of patients, 32.9 claimed permanent injury, and payments doled out totaled $1.3 billion.

Looked at another way, the researchers estimate that every week, 39 foreign objects are left behind in a patient's body, 20 procedures are performed on the wrong body site, and another 20 are the wrong procedure to begin with. And 12.4 percent of surgeons were repeat offenders.

CONCLUSION: Preventable errors, the researchers conclude, are exacting a serious toll on patients and the health care system.

IMPLICATIONS: Marty Makary, this study's lead author, is a huge proponent of increased transparency in health care; as he told The Atlantic in September, "I think if all of that information is public, patients will not have to walk into a hospital blind. They'll know about the quality of care in their hospital, and the hospital, most importantly, will be accountable." In this case, simple measures that are already used in many medical centers -- like having procedures in place to count sponges and double-triple-quadruple-check patient information before and after surgeries -- can go a long way toward reducing these numbers. In order to drive their widespread implementation in hospitals, Makary argues now, we need to have more data like that revealed in this study to urge them along.

The full study, "Surgical never events in the United States," is published in the journal Surgery .

Another Good Reason to Quit Smoking in New Year: Less Back Pain - University of Rochester Medical Center

A University of Rochester Medical Center analysis of more than 5,300 patients followed for eight months during treatment of spinal disorders showed that cigarette smokers reported far more pain than never-smokers or those who had quit.

Smoking cessation either prior to treatment or during the course of care was related to significant improvements in pain – a result that underlines the need for structured stop-smoking programs among the legions of patients who experience back pain due to degenerative disease, deformity, or musculoskeletal problems, said Caleb Behrend, M.D., chief resident in the Department of Orthopaedics and Rehabilitation at URMC.

Glenn R. Rechtine, M.D., a nationally recognized spinal surgeon and adjunct faculty at URMC, led the study, which was published in the Journal of Bone and Joint Surgery.

"We found that people who stopped smoking had meaningful benefit by reduction of their pain," said Behrend. "The pain improvement is in addition to all the other benefits you gain from quitting."

The relationship between pain and smoking is complex and full of contradictions. Nicotine has analgesic properties, for example, and yet clinical evidence shows that smokers are at higher risk for developing back pain and other chronic pain disorders, according to the American Society of Anesthesiologists.

Scientists already know that nicotine interacts with a family of proteins (nAChR), which have a key role in the central, and peripheral nervous system, and control anxiety and pain. Prolonged exposure to cigarettes upsets the function of these cells and eventually changes the way pain is processed, as well as impairing oxygen delivery to tissues, predisposing a person to bone and joint disorders such as osteoporosis, and inducing inflammation and depression. Smokers with spinal conditions also tend to have persistently more intense pain and more long-term disability.

The URMC study noted a daunting fact: Nearly all people will experience back pain at some point in their lives and many will seek medical care. And because the socioeconomic impact of spinal disorders (cost of care and lost productivity for patients) is so great, researchers wanted to find out if improvements in pain could be achieved with a cost-effective intervention such as smoking cessation.

Researchers reviewed a prospectively maintained database of 5,333 patients, who completed questionnaires about pain at the initial doctors' visit and at the time of discharge from care. Patients were treated with surgery, or with physical therapy, injections, over-the-counter medications, and home exercise programs. Physicians counseled all smokers to quit, and patients were referred to a smoking cessation hotline.

Of the 5,333 people, those who had never smoked or had quit some time ago reported less pain than smokers or those who had just quit. By the end of the follow-up period, the people who had recently quit or who quit during treatment showed significant improvements in pain. People who continued to smoke during treatment had no improvement in pain on all scales.

Behrend noted that younger people tended to comprise the group of current smokers and those who only decided to quit during treatment; this is consistent with other studies showing that smoking is associated with degenerative spine disease at a younger age. Older patients tended to comprise the group who had never smoked or quit long ago.

The rate of smoking cessation was 22 percent, and research shows that up to 36 percent of patients with painful spinal disorders are able to quit with help from a structured program. A grant from the Southwestern Medical Foundation was used to create and maintain the patient database.

Wednesday, December 19, 2012

Flu vaccine safety: Tamiflu and vaccines save lives and show public health science in action. - Slate Magazine

Here's a common complaint about the annual flu vaccine: "The last time I got the shot, I ended up getting the flu anyway!" Epidemiological data seem to back up such anecdotes. According to an American Lung Association report from 2010, there was no sustained decline in influenza-associated deaths over the past decades. Among those older than 65, according to a New England Journal of Medicine review, flu hospitalization rates rose steadily between 1979 and 2001, despite an increase in vaccination rates among seniors from 32 percent in 1989 to 67 percent in 1997.
Such data make the vaccine seem useless. As a result, skepticism has lately moved beyond the usual anti-vaccine, tinfoil-hat crowd. In 2009, the Atlantic published a breathless pieceaccusing drug makers and doctors of foisting bad science on an unsuspecting public and asked, "But what if everything we think about fighting influenza is wrong? What if flu vaccine does not protect people from dying—particularly the elderly?" Last month, the New York Timescalled the flu vaccine a "bonanza" for vaccine manufacturers and gave largely uncritical coverage to a University of Minnesota researcher who claimed the vaccine "does not protect as promoted. It's all a sales job." Similarly provocative articles have run in Harper's ("Viral Marketing"), the Boston Globe ("Flu Shots Are Safe, But Do They Work?"), and the Wall Street Journal ("They Shoot Flu-Shot Skeptics, Don't They?").
Critics of flu-control efforts got a boost recently when the British Medical Journal accusedRoche, which makes the anti-viral drug Tamiflu, of hiding data about the drug's supposed impotence against the flu. In anticipation of a possible pandemic in 2009, the U.S. government stockpiled $1.5 billion worth of Tamiflu and other anti-flu drugs. Now the editor of the British Medical Journal is concerned those pills were oversold. Among the conspiracy-minded, flu-control efforts now have less to do with public health and more to do with corporate profits. The true threat to us all, proclaimed Helen Epstein in the New York Review of Books, isn't the virus at all, but the drug companies.
Informed debate over public health is, well, healthy. But it's wrong to portray the global medical community as a stooge of greedy drug makers. The flu vaccine isn't useless and neither is Tamiflu. It's just that they, like all infection-control measures, are not perfect. There is no question that the vaccine does enhance one's immune response to flu—and it certainly does not give people the flu. It's likely the shot hasn't led yet to a dramatic population-wide decrease in flu deaths. But the proper response isn't for us to finger-point at drug companies and public health officials and call for repealing vaccine efforts.
What critics of flu-control policies don't get is that any global effort to stop an infection always goes through a process in which doctors learn more over successive battles and refine their strategies. That is exactly what is now happening in the battle against flu. We are not witnessing the work of industry puppet-masters. This is the scientific process in action.
It's easy to demonize Big Pharma and just call for more and more studies before taking decisive action. But sometimes we have to move. Consider the chicken-pox vaccine, which was first licensed in the United States in 1995. Preliminary data suggested the vaccine could stop the disease, but the studies included only a few thousand children. Arguments against universal chicken pox vaccination sounded similar to those against flu shots—the illness is harmless, the vaccine doesn't reliably produce immunity, drug companies are running the show, and so on—but authorities persisted and endorsed universal vaccination. Within a few years, we realized that children needed two separate shots, not one, to get stronger immunity, and national policies were changed. Before vaccines, chicken pox killed 100 children and led to 10,000 hospitalizations annually, according to the Centers for Disease Control and Prevention. In school-age children, attack rates fell by almost 80 percent after vaccination began, and deathswere nearly eliminated.
Another example of unfolding science: RotaShield, a vaccine against the leading cause of infant diarrhea, was approved in 1998. When a very rare side effect emerged, the vaccine was pulled in 1999. Two new vaccines were developed and licensed in 2006 (Rotarix and RotaTeq), and those formulations may save hundreds of thousands of lives annually worldwide. Again, more tweaks may be needed over time. In fact, the American Academy of Pediatrics vaccine schedule is constantly changing in small ways—ask any pediatrician who has to keep up—as data filters back about new vaccines against HPV and meningococcus, among others.
Back to flu, which is far more complicated than, say, chicken pox. To begin with, most people who die of the flu aren't actually tested for it; hospitals and clinics aren't required to report flu cases to anyone (unless they involve young children); and most severe consequences of the flu are secondary problems like bacterial pneumonia or heart failure, which end up being listed as the cause of death. Thus, the flu's toll can be estimated only by using complex statistical models. Further, the virus mutates yearly, so the flu's impact varies hugely year by year and makes longitudinal comparisons impossible. Over the past 30 years, the annual American death toll wandered almost randomly between 3,000 and 50,000.
Now add the following: Vaccine makers have to guess what strains of the flu will predominate, so the vaccine may prevent anywhere from 0 to 50 percent of the flu in a bad-guess year and 70 to 90 percent in a good-guess year. The vaccine works best in school-age children and young adults, and unfortunately it works worst in babies and seniors, who sadly are the ones who get sickest. (In 2003, the CDC began requiring state health department to report child flu deaths and found 153 children died of the flu that season, which is more than any other vaccine-preventable illness.) Even more complicated: The nasal mist vaccine works best in children, but the shot is better for adults.
What about Tamiflu? In the event that a virulent flu pandemic occurred and no vaccine was available, antiviral drugs might be critical. In a key 2009 study during the H1N1 outbreak, stockpiled Tamiflu was given to large groups of contacts of newly-infected Singaporeans and cut the transmission rate by 95 percent. Tamiflu also appears to cut the risk of death in hospitalized flu patients. Critics of Tamiflu allege Roche obscured evidence unfavorable to the drug, but the debate is deep and fascinating. (Roche's response to them, in my opinion, seemed reasonable.)
Most importantly, what have we learned about flu control? We found that vaccinating the elderly failed to cut hospitalizations; therefore, doctors hypothesized that children are responsible for spreading most flu to older people. In 2010, a large study of elementary-school-based flu vaccine in Bell County, Texas achieved 50 percent vaccination rates of students and protected people of all ages from the flu (the so-called "herd immunity" effect). Similar findings were seen in a Canadian study. Incorporating this information, the CDC recommended in 2010that all people over 6 months old should be vaccinated. (To guard infants, we now know thatvaccinating pregnant women produces immunity in their newborns.) As in chicken pox control, these new flu policies show public health in evolution. In a few years, we will see if this works. In the meantime, the FDA earlier this year approved a new vaccine that includes four flu strains, instead of three, which may bolster effectiveness. It's another example of science in action.
In the meantime, Americans should learn from the death toll of flu-vaccine skepticism in Japan. It was the only industrialized country to have mandatory universal flu vaccine of children, which helped produce herd immunity, The program fell victim to skeptics and was repealed in 1994. The result? The New England Journal of Medicine reported that flu deaths rose by 40,000 per year—almost as many people as died immediately from the atomic bomb in Hiroshima.
In the end, it's easy to ascribe sinister motives to flu control efforts, especially if you're unwilling to tolerate uncertainty. With a slight shift in perspective, however, one can see our evolving flu control programs as a triumph of public health.

Suicide Spotlights Persistent Genital Arousal Disorder - The Daily Beast

The words "arousal" and "orgasm" are almost universally associated with sexual pleasure—a biological itch that goes away (or at least temporarily subsides) when scratched. But what if scratching only exacerbated that itch, so much that it became an intractable ache often compounded by burning, throbbing, and swelling?

These symptoms were truly unbearable for Gretchen Molannen, a 39-year-old Florida woman who committed suicide earlier this month. Roughly 16 years ago, Molannen developed a rare and little-known condition called persistent genital arousal disorder (PGAD). Like many women who suffer from the debilitating disorder, Molannen was forced to quit her job and had difficulty maintaining relationships with family and friends, let alone boyfriends. She underwent diagnostic procedures and sought treatment for her symptoms from a variety of doctors, none of whom could provide her with any answers or long-term relief. Molannen divulged every detail of her battle with PGAD to The Tampa Bay Times—from her masturbation habits to previous suicide attempts—for an exposé that was printed the day before she put an end to her suffering.

There may have been other triggers that led to Molannen's suicide, but doctors who specialize in PGAD and other pelvic pain disorders say severe depression is not uncommon among their patients. Dr. Robert Echenberg, a gynecologist and founder of Pennsylvania's Institute for Women in Pain, said he's seen at least seven suicide attempts among his 125 patients in the last year, one as recently as last week. Just five months ago, a Dutch woman with PGAD took her own life.

"Depression and pain and hopelessness are a bad combination," Echenberg told The Daily Beast. Even with Molannen's suicide spotlighting the condition in the media, PGAD remains largely ignored or misunderstood in the medical world. "So many patients feel hopeless because they have been treated over and over again without success, and have frequently been told the pain is 'in their heads,'" he said. "Others tell me they'd rather have cancer just so doctors would listen to their plight and they could develop a plan for health care."

Still widely misconceived as a "sexual disorder," PGAD is one of many conditions that falls under the umbrella of vulvodynia, or chronic pelvic pain—an issue that affects 20 percent of reproductive-age women, according to Dr. Echenberg. PGAD was introduced to the medical world in a 2001 study by the late Sandra Leiblum, a pioneer in modern sex therapy.

A small group of researchers scattered around the world have since connected the phenomenon to the pudendal nerve, the sensory neuron that triggers arousal. Dr. Michael Hibner, a gynecological surgeon in Arizona, says PGAD develops when the pudendal nerve is compressed or irritated, causing the clitoral dorsal nerve to fire off at random. As a result, women afflicted with the disorder feel constantly on the brink of the big O.

The concept of multiple, occasionally spontaneous orgasms titillates many women and men, even those in the medical profession. Kim Ramsey, 44, was working as a nurse in an emergency room when she first learned she had PGAD. "My colleagues would be like, 'Wow, you're so lucky,'" she said. "But I genuinely thought I was having some sort of nervous breakdown. I felt flushed. My vagina and breasts were engorged. I kept thinking, 'How do I keep a grip on reality and function in a patient-nurse setting without people knowing?'"

Uninformed doctors have left other patients at their wit's end, some of whom feel they have no choice but to take matters into their own hands.

"Some women have pierced their own genitalia to drain the blood that pools in their genital region," said Anna Reid, 26, who lives in Australia and was diagnosed with PGAD last March. She has since worked with Dr. Hibner and found comfort in online support groups, which were originally launched by Jeannie Allen, 51, in 2006. Allen's PGAD Support was the first such network to be established and remains the most well-known worldwide, with roughly 400 active members.

But that number reflects only a small portion of women around the world with PGAD, which doctors like Hibner estimate to be in the thousands. Other authorities on chronic pelvic pain say causes and treatments are too complex for most gynecologists to comprehend.

Health Care Social Media |

Social Media and technology has the capacity to revolutionise health care.

Curated by Alex Butler

Tuesday, December 18, 2012

A Misguided Focus on Mental Illness in Gun Control Debate -

In the wake of the terrible shooting at an elementary school in Newtown, Conn., national attention has turned again to the complex links between violence, mental illness and gun control.

The gunman, Adam Lanza, 20, has been described as a loner who was intelligent and socially awkward. And while no official diagnosis has been made public, armchair diagnosticians have been quick to assert that keeping guns from getting into the hands of people with mental illness would help solve the problem of gun homicides.

Arguing against stricter gun-control measures, Representative Mike Rogers, Republican of Michigan and a former F.B.I. agent, said, "What the more realistic discussion is, 'How do we target people with mental illness who use firearms?' "

Robert A. Levy, chairman of the Cato Institute, told The New York Times: "To reduce the risk of multivictim violence, we would be better advised to focus on early detection and treatment of mental illness."

But there is overwhelming epidemiological evidence that the vast majority of people with psychiatric disorders do not commit violent acts. Only about 4 percent of violence in the United States can be attributed to people with mental illness.

This does not mean that mental illness is not a risk factor for violence. It is, but the risk is actually small. Only certain serious psychiatric illnesses are linked to an increased risk of violence.

One of the largest studies, the National Institute of Mental Health's Epidemiologic Catchment Area study, which followed nearly 18,000 subjects, found that the lifetime prevalence of violence among people with serious mental illness — like schizophrenia and bipolar disorder — was 16 percent, compared with 7 percent among people without any mental disorder. Anxiety disorders, in contrast, do not seem to increase the risk at all.

Alcohol and drug abuse are far more likely to result in violent behavior than mental illness by itself. In the National Institute of Mental Health's E.C.A. study, for example, people with no mental disorder who abused alcohol or drugs were nearly seven times as likely as those without substance abuse to commit violent acts.

It's possible that preventing people with schizophrenia, bipolar disorder and other serious mental illnesses from getting guns might decrease the risk of mass killings. Even the Supreme Court, which in 2008 strongly affirmed a broad right to bear arms, at the same time endorsed prohibitions on gun ownership "by felons and the mentally ill."

But mass killings are very rare events, and because people with mentally illness contribute so little to overall violence, these measures would have little impact on everyday firearm-related killings. Consider that between 2001 and 2010, there were nearly 120,000 gun-related homicides, according to the National Center for Health Statistics. Few were perpetrated by people with mental illness.

Perhaps more significant, we are not very good at predicting who is likely to be dangerous in the future. According to Dr. Michael Stone, professor of clinical psychiatry at Columbia and an expert on mass murderers, "Most of these killers are young men who are not floridlypsychotic. They tend to be paranoid loners who hold a grudge and are full of rage."

Even though we know from large-scale epidemiologic studies like the E.C.A. study that a young psychotic male who is intoxicated with alcohol and has a history of involuntary commitment is at a high risk of violence, most individuals who fit this profile are harmless.

Jeffery Swanson, a professor of psychiatry at Duke University and a leading expert in the epidemiology of violence, said in an e-mail, "Can we reliably predict violence?  'No' is the short answer. Psychiatrists, using clinical judgment, are not much better than chance at predicting which individual patients will do something violent and which will not."

It would be even harder to predict a mass shooting, Dr. Swanson said, "You can profile the perpetrators after the fact and you'll get a description of troubled young men, which also matches the description of thousands of other troubled young men who would never do something like this."

Even if clinicians could predict violence perfectly, keeping guns from people with mental illness is easier said than done. Nearly five years after Congress enacted the National Instant Criminal Background Check System, only about half of the states have submitted more than a tiny proportion of their mental health records.

How effective are laws that prohibit people with mental illness from obtaining guns? According to Dr. Swanson's recent research, these measures may prevent some violent crime. But, he added, "there are a lot of people who are undeterred by these laws."

Adam Lanza was prohibited from purchasing a gun, because he was too young. Yet he managed to get his hands on guns — his mother's — anyway. If we really want to stop young men like him from becoming mass murderers, and prevent the small amount of violence attributable to mental illness, we should invest our resources in better screening for, and treatment of, psychiatric illness in young people.

All the focus on the small number of people with mental illness who are violent serves to make us feel safer by displacing and limiting the threat of violence to a small, well-defined group. But the sad and frightening truth is that the vast majority of homicides are carried out by outwardly normal people in the grip of all too ordinary human aggression to whom we provide nearly unfettered access to deadly force.

Containing obesity: The last course | The Economist

MICHELLE OBAMA WOULD probably be happy if every child were like Precious Moore of Clinton, Mississippi. Precious has just turned nine and her favourite food is the hamburger. But she likes fruit, too. She and her mother take a quick walk together every day. "We always exercise, since I was four years old," she explains proudly. Her seven-year-old sister often asks to go to McDonald's, but Precious disapproves. "I don't really like their food at all," she says, scrunching her nose.

Precious and her ilk may be one reason why obesity rates in Mississippi are dipping from their towering heights. In 2005 some 44% of schoolchildren aged 5-18 were overweight or obese; last year the figure was down to 41%. Across America, obesity rates in 2010 among both children and adults seemed to be levelling out. It is unclear why. Recent anti-obesity initiatives may have helped. Dr Leibel of Columbia University thinks that Americans may be reaching their biological limit for obesity in an environment where food is cheap and exercise discretionary: those predisposed to obesity may have become fat already.

Whatever the explanation for the minor improvement, the broader problem is hardly wasting away. In Mississippi white children are slimming down but black children are as round as ever. American boys and men are still getting bigger, as are black and Mexican-American women. And in most of the rest of the world people still seem to be getting fatter faster.

According to Dr Stevens of the WHO and Dr Ezzati of Imperial College, London, obesity rates worldwide nearly doubled from 1980 to 2008, to 12%. Half of the increase was concentrated in just eight years, from 2000 to 2008. The fastest rise for women was in Oceania and parts of Latin America and for men in North America and Australasia. Even if obesity rates were to remain at their current levels, which seems too much to hope for, the consequences would still remain grave not just for the individuals concerned but also for world food supplies, productivity and government finances. This demands action.

Given how hard it is to lose weight, governments should concentrate their efforts on trying to prevent people from gaining it in the first place. Children are an obvious target. Chubby kids often become chubby adults, so it is worth catching them before they do. By the same logic developing countries, which mostly remain slim for now (though obesity rates are rising), still have the chance to nip the problem in the bud.

The question is how. From an economist's perspective, the best way to dissuade people from eating junk would be to make it more expensive. Franco Sassi of the OECD has modelled the cost-effectiveness of different measures to prevent obesity and reckons that fiscal measures are the only ones that will save more than they cost.

But demand for food and drink is relatively insensitive to changes in price, and if one type of junk food becomes more expensive consumers may simply buy another sort instead. Taxing fat is not the simple answer it appears to be. Some fatty foods also contain healthy protein, and a rush to low-fat foods in the 1980s did not bring a decline in obesity. Sugary drinks, which have no nutritional value, are a better target. A well-designed tax would be high enough to deter consumers and broad enough to keep them from switching to another junky drink. But that would raise political problems. A high tax would disproportionately affect the poor, who might be outraged.

The unfortunate truth is that no single policy will bring down obesity rates on its own. Societies got fat for a variety of reasons, and individuals, companies and governments must come to grips with all of them to reverse the process. It is easy to argue that if fat people would only stick to their diets and take more exercise, the problem would disappear, but environmental, psychological and biological factors make it much harder to lose weight than it seems.

Much will depend on whether food companies will continue to push junk food or speed up the shift to healthier products. They have no incentive to stop making junk foods until consumers stop buying them, but consumers will not renounce such foods until companies make healthy ones more attractive.

Insurers and governments, for their part, will need to find new ways to nudge people into better behaviour. Policymakers now have a better understanding of why people make poor decisions about their health, and mobile technology can help them to make better ones. As such experiments continue, there will be more evidence of what works, and whether it can be made politically acceptable. Such ideas can then spread elsewhere.

If things were to go on as they are, the implications would be devastating. Ageing is already increasing the rate of chronic disease. Obesity could make the burden much heavier, overwhelming health services, particularly in poor countries. And agricultural supplies are already stretched. If everyone became as heavy as the average American, according to one estimate, the world's human biomass would jump by 20%, the equivalent of adding about 1 billion normal-sized people.

Fortunately obesity is that rare thing, an entirely preventable problem. Its rise has been quick and extreme. Now the world must act to reverse that rise, and fast.

In this special report

Australian university's partnership with American academic health center graduates its first class | Inside Higher Ed

The first class of nine students graduated Saturday from the University of Queensland School of Medicine's unique partnership program with Ochsner Health System, in New Orleans. In total, 171 students have enrolled in the transnational program since it launched in January 2009 with the stated goal of producing more physicians for the United States. Students must hold U.S. citizenship or permanent residence in order to enroll in the Queensland-Ochsner program, which entails two years of basic sciences in Brisbane, two years of clinical training in New Orleans, and culminates in the awarding of a bachelor of medicine, bachelor of surgery, the Australian equivalent to an M.D.

Queensland also sends its "traditional" medical students to its clinical school at Ochsner for up to three clinical rotations, or six months. So far, 254 traditional Queensland students have rotated through Louisiana in the course of their degrees.

"We're very pleased with the progress that we've made," said William W. Pinsky, executive vice president and chief academic officer at Ochsner Health System and head of the University of Queensland-Ochsner Clinical School. "We think we're doing a good thing for these students, we think we're doing a good thing for Ochsner and UQ, and we think we're doing a good thing for our state and our country in terms of producing more doctors."

The program is marketed as being "for the many qualified U.S. students who do not gain admittance to a U.S. medical school or for those who prefer a more international experience." A New York-based company, MedEdPath, recruits for the program. The tuition rate of $54,080 is pricey but on par with that of nearby Tulane University's medical school, and the Queensland-Ochsner students are eligible for U.S. government loans. For the entering class of 2012, the average undergraduate GPA of students was 3.28 and the average Medical College Admission Test score 28. These are lower than the average GPAs and MCATs for students entering U.S. medical schools -- 3.67 and 31.1 in 2011, the latest year for which data are available. Queensland-Ochsner's average MCAT scores are one to three points higher than those reported by some of the better-known Caribbean medical schools.

The first cohort of Queensland-Ochsner students -- that is, the entering class of 2009 -- originally numbered 16, but Pinsky said that four stayed in Australia rather than returning to New Orleans. (He added that the admissions letter has since been reworded to make it clear that's not an option.) Another three took one or more rotations off and are still completing the program.

Of the nine that are graduating, Pinsky said that all scored above the national average on Step 2 of the U.S. Medical Licensing Exam. In order to practice in the U.S., graduates of the Queensland-Ochsner program must be certified by the Educational Commission for Foreign Medical Graduates, but Pinsky said that has not proven to be much of a barrier, as there is no separate test requirement (as used to be the case). In order to be certified, students must graduate from a program on ECFMG's approved list of universities (which includes Queensland) and pass the USMLE.

Two of the nine graduates have been offered internships in Australia. The remaining seven are interviewing for residencies in the U.S.

Although some U.S. medical schools have ventured abroad -- Cornell in Qatar and Duke in Singapore – the Queensland-Ochsner partnership represents the first case of a foreign medical school establishing a degree-granting outpost on U.S. soil. There may, however, be emerging interest in the model. Pinsky said he has fielded calls from administrators at hospital systems in Michigan and Texas who are considering launching similar partnerships with Australian universities. "It's bubbling," he said.

John E. Prescott, chief academic officer for the Association of American Medical Colleges, said the Queensland-Ochsner students have the same challenges of navigating the ECFMG process and applying for residencies in American hospitals as other students who have not attended Canadian or U.S. medical schools. "It sounds like they're doing that. And that's good," he said. More generally, Prescott said there is increasing interest on the part of American students in traveling abroad for part of their medical education, if not for the whole degree. The AAMC's surveys show that 65 percent of entering medical students express an interest in a global health opportunity and 35 percent of graduates have engaged in one.

"Demand has grown so much that it exceeds each medical school's ability to respond to it," said Jenny Samaan, the director of the AAMC's new Global Health Learning Opportunities network.

Twenty-four medical schools from around the world, including 10 in the U.S., are participating in the pilot phase of the network, which is intended to facilitate mobility of final-year medical students as well as collaborative research. The idea is that participating medical schools will advertise clinical or research electives that students at other institutions in the network can then apply for. The electives vary in terms of selection criteria and prerequisites – some, for example, will require second language proficiency, whereas others will not – and in length, but each must be at least four weeks in duration. And it's not just U.S. students moving outward, but students from the participating international medical schools – in Australia, Belgium, Brazil, England, Germany, India, Israel, Italy, Lebanon, Malaysia, the Netherlands, Peru, Poland, and Portugal – can circulate throughout the network as well. Samaan said it is a priority to bring additional medical schools from sub-Saharan Africa and Central and South America into the network, and to create electives in community and public health, as well as more traditional clinical electives.

The pilot is set to launch early in 2013. 

Monday, December 17, 2012

Canada needs to regulate non-medical use of genetic information - The Globe and Mail

While predictive genetic testing holds the promise of advancing the understanding of disease, there is also great potential for the information to be misused. Currently, Canada is the only G-8 country without a policy or legislation on the use and collection of genetic information for non-research or health purposes. This is dangerous and could undermine people's willingness to take part in Canada's ambitious Personal Genome Project, which aims to make public the genome of 100,000 people, alongside personal profiles that put the DNA sequencing into context, so scientists can study them for the greater good.

This legislative black hole raises troubling issues around privacy rights, as well as the possibility that people could be discriminated against because of genetic markers that predict the onset of disease, including Alzheimer's, cancer, diabetes and cystic fibrosis.

The interplay between genes and environment is so complex that it becomes impossible to say with certainty whether genetic predisposition actually results in the development of a particular disease. There are legitimate fears that genetic data could be over-interpreted.

"Knowledge about the implications of genetic test information is presently incomplete, even in the science and medical community, let alone amongst third parties in the commercial sector that may have an interest in accessing the genetic information of individuals," says the Council for Responsible Genetics, a U.S. non-governmental group.

The U.S.'s Genetic Information Non-Discrimination Act bans health insurers and employers from using a person's genetic information. In contrast, insurance companies in Canada, and even in theory employers, can ask people if they have undergone genetic testing, request the results and then refuse to insure or hire them. Such prejudice already exists, according to Bev Heim-Myers, chair of the Canadian Coalition for Genetic Fairness, particularly among those with a family history of Huntington's disease.

People's genetic information must receive a minimum level of privacy and security. Otherwise the considerable promise in genome research for the future treatment and prevention of disease – something of benefit to all Canadians – will never be realized.