March 29, 2008
Schizophenia Linked to Genetic Mutations
The Washington Post and other news outlets reported last week on a new study in the journal Science which examines a potential link between certain gene mutations and schizophrenia. The Washington Post's Rick Weiss states,
Patients with schizophrenia are three to four times as likely as healthy people to harbor large mutations in genes that control brain development, and many of those glitches are unique to each patient, researchers reported yesterday. The findings are forcing scientists to rethink the reigning model of how genes and environment conspire to cause the debilitating disease, which affects about 1 percent of the population worldwide. In part, scientists said, the new view is daunting because it suggests that many people with schizophrenia have their own particular genetic underpinnings.
At the same time, the study shows that new screening techniques can find and differentiate among those various mutations. In the long run that could help doctors choose the best medications for individual schizophrenics and speed the development of drugs tailored to certain patients' needs. "If the genetics tells us that schizophrenia is really 10 different disorders, then let's have 10 treatments that optimize the outcomes for everyone and not just use the same drugs for everybody," said Thomas Insel, director of the National Institute of Mental Health, which helped fund and conduct the study. The work also offers evidence that autism shares some genetic roots with schizophrenia.
"Take away schizophrenia's hallucinations and delusions," said Jon McClellan, a child psychiatrist at the University of Washington and a leader of the study, published in yesterday's online issue of the journal Science, "and the symptoms that remain, the lack of social interest and withdrawal, are what we call autism. There is clearly an intersection of the brain systems involved."
. . . . The genes implicated are diverse, but many are known to play crucial roles in how the brain gets wired early in life. Normally that process starts with a huge overproduction of neurons, followed by a controlled winnowing that leaves only those that have made proper connections.
"Changes in these genes could bias the way circuits get sculpted out and could perhaps lead to a brain in which signals that would normally get filtered out don't get filtered out," which could interfere with thinking and prompt hallucinations, Insel said.
Lights Out Tonight
Thank you for your suggestions, energy and enthusiasm. We are both
thrilled and overwhelmed with the outpouring of support for this
historic climate change initiative.
First, here is a quick look at Earth Hour. On March 29, 2008, from 8pm
to 9pm, local time, participants around the globe will join together
to literally turn off the lights to offer leadership and symbolize
their commitment to finding climate change solutions.
Earth Hour is a global event, created to symbolize that each one of
us, working together, can make a positive impact on climate change--no
matter who we are or where we live. It is intended to bring together a
diverse group of community, government, corporate and nongovernmental
organizations to heighten awareness about climate change and to
inspire consumers and businesses to take practical actions to reduce
their own carbon footprints.
We at WWF are hard at work pulling together downloadable content and
promotional materials that individuals, communities, groups, and
business can use to get the message out about Earth Hour. We are
targeting the beginning of February to have that content available on
our global WWF Earth Hour website. Please check back then.
In the meantime, showcase your commitment to finding climate change
solutions by making a personal pledge to reduce your own carbon
footprint at worldwildlife.org/earthhour.
Project Director, Earth Hour US
World Wildlife Fund
March 27, 2008
The Washington Post's Jacob Hacker has an interesting piece on socialized medicine and how it might be time to retire the fear that the word generates. He writes,
"Socialized medicine" is the bogeyman that just won't die. The epithet has been hurled at every national health plan since the New Deal -- even Medicare, which critics warned would strip Americans of their freedom.
And now it's back. Republicans from President Bush on down have invoked the specter of socialism in denouncing Democrats' attempts to expand publicly funded health insurance for children. Erstwhile GOP presidential contenders Rudy Giuliani and Mitt Romney lambasted the health plans of the leading Democratic candidates for mimicking "the socialist solution they have in Europe" (Giuliani) and trying to impose "a European-style socialized medicine plan" (Romney). The presumptive Republican nominee, Sen. John McCain, hasn't used the S-word yet, but after sewing up the nomination in early March, he criticized Democrats for intending "to return to the failed, big-government mandates of the '60s and '70s to address problems such as the lack of health-care insurance for some Americans."
Never mind that nobody is proposing to turn doctors into public employees and hospitals into government institutions -- the literal meaning of socialized medicine. The slogan gets its punch because it invokes a visceral public fear: that government involvement will drive up costs and drive down quality, wrecking the economy and damaging your health. Expanding government's role, the naysayers insist, will destroy what McCain calls "the world's best medical care."
But the critics have it backward. The best American medical care is indeed extremely good, but much of our system falls short -- especially when you consider how costly it is, how heavy a burden it places on employers and families, and how many it excludes. And far from being a threat, getting the government more involved in health care would actually reduce costs, improve quality and bolster the U.S. economy -- which helps explain why public insurance is the secret weapon in both of the leading Democratic candidates' plans. If socialized medicine means doing what our public-insurance programs and other nations' health systems do to control costs, expand coverage and improve the quality of care, it's high time for a little socialization.
To see the advantages of public insurance, just look at the program that once prompted the fiercest charges of socialized medicine, Medicare. Since the introduction of cost controls in the 1980s, Medicare's expenditures have grown at a substantially slower rate than spending on private insurance, according to a recent analysis by the health-care experts Cristina Boccuti and Marilyn Moon. And despite Medicare's comparative frugality, the program's beneficiaries express greater happiness with their coverage than do privately insured patients in surveys of consumer satisfaction. . . .
Indeed, by some measures, U.S. health care looks downright lousy. A six-country study by researchers at the Commonwealth Fund, a health-care think tank with a generally liberal bent, concludes that the United States "scores particularly poorly on its ability to promote healthy lives, and on the provision of care that is safe and coordinated." Meanwhile, a recent analysis of 19 rich nations by Ellen Nolte and C. Martin McKee of the London School of Hygiene and Tropical Medicine found that the United States has the highest rate of "amenable mortality" before age 75 (the odd term of art for deaths that could have been prevented with timely care) -- and that we're falling farther behind. . . .
It's time, in other words, to embrace a government role in health care, rather than run from it. . . . That's wise, because the only proven way to provide good affordable care to all Americans over the long run is to expand public insurance.
Don't take my word for it. The Lewin Group, a well-respected health-care consulting firm, recently estimated the potential impact of a health plan I've developed with the support of the Economic Policy Institute. The proposal -- which resembles the plans of the leading Democrats, whom I've advised -- requires employers either to cover their workers or to contribute to the cost of their workers' coverage. Workers whose employers make the contribution will be enrolled in a public plan modeled after Medicare. Like those covered by Medicare, they will have the option of purchasing regulated private insurance instead. According to the estimates, this proposal would cover all but a tiny sliver of the non-elderly population -- about half through the new federal system and half through employers. Yet it would actually reduce national health spending, cost the federal government an eminently reasonable $50 billion a year (about what the Medicare drug benefit costs) and save states and employers big money.
How is it possible to cover everyone without driving up costs? The one-word answer is "government" -- specifically, government's ability to lower service prices, streamline administration and get a better deal on drugs, thus reducing medical inflation over time. And these are only the direct savings. Reducing the burden of health care on employers will allow them to compete more effectively (and on a level playing field) with foreign producers. Just as important, making coverage affordable for everyone will allow people to change jobs or start their own businesses without the fear of catastrophic costs or the hassle, expense and inadequacy of individually purchased coverage.
Maybe socialized medicine doesn't sound so bad after all.
Thanks to Erza Klein for the cite.
Happy Birthday Viagra!
Yes, Viagra has been around for ten years. For some reason, perhaps all the spam e-mail I continue to receive, it seems like it has been around for so much longer. The Wall Street Journal's Health Blog has a post to mark this special occasion but notes, as is fitting a financial newspaper that the drug hasn't lived up to what some thought was its profit potential. Jacob Goldstein writes,
Ten years ago today, the FDA approved Viagra. The drug became an instant cultural icon, and sales took off immediately, prompting some optimistic analysts to predict that annual sales could reach $20 billion some day, the WSJ reported at the time.
Viagra turned into a world-famous brand, a legend that shifted the notion of what the pharmaceutical industry can do and defined a new category of lifestyle medicines. But sales of the Viagra, though solid, haven’t lived up to the early hype — under $2 billion a year world-wide for the last several years, less than sales of humbler Pfizer drugs like the painkiller Celebrex, not to mention Lipitor.
Why the chasm between the idea of Viagra, a global megabrand, and the sales figures for the pills themselves? Part of it is that Viagra now has competitors, Levitra (from Bayer, GlaxoSmithKline and Schering-Plough) and Cialis (from Lilly). But even collectively, the sales of the drugs never came close to the early predictions. Abraham Morgentaler, a Harvard urologist who wrote a book called The Viagra Myth, suggests that no pill could ever live up to Viagra’s hype. . . . .
“Relationships are complicated, sex is complicated, and sometimes when there are issues in the relationship, the bedroom is the place where the most obvious failures are,” he says. “But being able to have a hard penis isn’t necessarily going to solve the relationship problem.”
Many of his patients realized that only after trying the drug. Apparently, other patients realized it too — about half of patients nationwide who have gotten Viagra prescriptions have never gone back for a refill, Morgentaler says. In some cases, he suggests, nature may be best left to its own devices. . . .
They also post their favorite Viagra ad.
March 26, 2008
Disability, Reproduction and Parenting Symposium
Saint Louis University School of Law will hold an interesting and informative one-day symposium, "Disability, Reproduction and Parenting," on Friday, April 4, 2008 at their law school. It is the 20th Annual
The desire to form a family and have a child has long been central to many people’s idea of a good life. It has also long been surrounded by stigma for people with disabilities -- whether parents, prospective parents or children -- who continue to face barriers to the full enjoyment of reproductive autonomy, parenting and family life. Against this backdrop, advances in technology such as assisted reproductive technologies and prenatal diagnostic techniques represent the potential for increased access to informed reproductive choice but also for the increased stigmatization of individuals with actual or perceived disabilities. Available care, services and support often reflect an inaccurate understanding of what it means to be disabled, for both parents and children. This Symposium will examine the impact of these issues on parents, prospective parents and children living with disabilities.
The symposium looks great with many terrific speakers and a complex topic that will benefit from such intelligent examination. Thanks to Elizabeth Pendo for the information.
Job Posting: Director for Law Library and Information Technology
Cincinnati Seeks Director for Law Library and Information Technology
The University of Cincinnati College of Law is looking to hire a Director for Law Library and Information Technology. As the position announcement explains, this is an exciting opportunity to join our small public law school at a wonderful point in its 175-year history. Under the leadership of our new dean and university president, with an outstanding, collegial, and supportive faculty and staff, and a top-notch student body, the new director will have all the tools and resources necessary to help implement the College's ambitious strategic plan.
Qualifications: Applicants for the Director’s position must have a J.D. degree from an ABA-accredited law school and a M.L.S. or M.L.L. degree from an A.L.A.-accredited institution. A minimum of seven years of professional experience as a law librarian is required. Such experience should include an active leadership role in an academic law library and the administration and management of information technology within a law school. Teaching experience, a publication record, and contributions to the profession are also desirable. Salary will be commensurate with qualifications and experience. In appropriate cases, the Director may be considered for a tenured or tenure-track appointment to the faculty.
Please submit a letter of interest, a detailed resume listing qualifications and experience, and the names, addresses, telephone numbers and e-mail addresses of at least three professional references who may be contacted. For fullest consideration, please submit materials by April 15, 2008. The review of materials will begin immediately and will continue until the position is filled. Apply to this position through the University’s on-line website. Go to www.uc.edu/hr, click on “job seekers”, and apply for position #28UC0633.
Please email (Betsy.Malloy@uc.edu) or call me (513) 556-0115 if you would like to find out more about this wonderful opportunity.
Advanced Look at US News Rankings
I cannot vouch for the accuracy of this data but others with blogs are posting it as the advanced ranking from US News that will be available to all on Friday. The pdf file for the top 100 schools can be found here. I am not a fan of the rankings but I understand that most everyone is curious to know where their school happens to fall this year.
I also received an e-mail from the ABA Journal concerning their recent article examining the rankings process. The e-mail encourages individuals to participate in a discussion about the rankings. Below is the e-mail:
Because you’re a blogger who is a member of the legal education community, we thought you and your blog’s readers would be interested in an ABA Journal cover story about U.S. News & World Report’s law school rankings that was posted today (http://www.abajournal.com/magazine/the_rankings_czar/). And we’re holding a live online chat next month with the rankings czar from U.S. News in which you can participate.
Robert Morse, the man who created the law school rankings for U.S. News, offers an olive branch to law school deans who have long complained about the effect of the rankings on legal education. “Deans are welcome to call me or come by my office in Washington,” Morse says. “I want to work with them to improve the rankings.”
Some deans and former deans think they should engage the magazine, rather than just complain about it. “I think rankings need to be changed, and the only way that will happen is if law school deans sit down with Bob Morse for honest discussion,” says Nancy Rapoport, who resigned as dean of the University of Houston Law Center after her school dropped almost 20 points in the rankings. “I would attend a meeting like that without hesitation.”
This year’s U.S. News law school rankings are scheduled to be released this Friday, March 28. Morse will be taking questions from the public on ABAJournal.com on Friday, April 11, from 3 to 4 p.m. ET. We hope you and your readers will participate.
March 25, 2008
AFL-CIO Study on What Americans Are Willing to do for Health Insurance
This morning, NPR's Morning Edition ran a brief story on the some of the results of the AFL-CIO's survey of what Americans were willing to do for health insurance. Many responded that they had stayed in jobs they did not enjoy and without a future, one individual discussed how her son joined the National Guard and spent a year in Iraq. These should not be choices that people have to make in order to get health insurance. Here is the AFL-CIO website with further information on their survey.
Pregnant Women as Temporarily Disabled?
Feministing has a post concerning a recent, failed piece of legislation in California that would have labeled women in their third trimester as temporarily disabled so that they could qualify for disabled parking spaces. While I appreciate the sentiment, why not just have some extra parking spaces just like my local drug store does, for expecting moms. Anyway, here is blogger Samhita's take on the legislation,
A Republican California assemblyman proposed a bill that would deem pregnant women "temporarily disabled" in the third trimester of their pregnancy and allow them access to handicapped parking. The bill failed, but I think this is really interesting.
The classification of differently-abled people is usually pretty stigmatizing. Disability rights activists have talked about the problem with being overly protective of differently-abled people while overlooking systemic problems in the care of people with disabilities and the lack of appropriate legislation to protect their individual rights.
People with disabilities are constantly fighting against a misinformed public, discrimination and the often erroneous belief that differently-abled people are helpless and can't make decisions for themselves. It is not OK, but we can agree that these assumptions are prevalent. So if that is the case, and we have politicians that want to classify pregnant women as "disabled" these same misconceptions apply on some level. There is then the belief that pregnant women are unable to take care of themselves, make choices for themselves, etc. Is the answer for society's mistreatment of both differently-abled people and pregnant women legislation that will classify women as "temporarily disabled?". . . .
March 24, 2008
The New York Times reported on Sunday about a new website, PatientsLikeMe, that permits patients to share medical data and learn more about treatments, drug doses, clinical trials and symptoms of a variety of diseases. The website raises some interesting issues including how the internet distributes data to patients perhaps encouraging self-medication as well as the privacy concerns from the public sharing of such health data (with some quotes from Professor Mark Rothstein).
At first glance, the Web site looks like just any other online community, a kind of MySpace for the afflicted. Members have user names, post pictures of themselves and post updates and encouragements. As such, it’s related to the chat rooms and online communities that have inhabited the Internet for more than a decade.
But PatientsLikeMe seeks to go a mile deeper than health-information sites like WebMD or online support groups like Daily Strength. The members of PatientsLikeMe don’t just share their experiences anecdotally; they quantify them, breaking down their symptoms and treatments into hard data. They note what hurts, where and for how long. They list their drugs and dosages and score how well they alleviate their symptoms. All this gets compiled over time, aggregated and crunched into tidy bar graphs and progress curves by the software behind the site. And it’s all open for comparison and analysis. By telling so much, the members of PatientsLikeMe are creating a rich database of disease treatment and patient experience. . . .
Yet even doctors who consider themselves advocates of online medical information raise concerns about patients self-medicating or self-treating. Erik Ensrud, a neurologist at Brigham and Women’s Hospital in Boston, specializes in many of the diseases that PatientsLikeMe focuses on. “The nervous system is the most complicated system in the body,” he says. “It’s so often much more difficult to quantify and study than we think it will be.” . . .
For decades, our personal health information has been protected largely by disorganization and chaos, suggests Mark Rothstein, a bioethics and health-policy professor at the University of Louisville. But now, with major health-maintenance organizations and hospitals finally adopting electronic records, fallow storerooms of paper records are being converted into neat and portable digital form. “Technology is racing ahead of society,” says Rothstein, who advises the Department of Health and Human Services on electronic privacy. “If this is sensitive information — sexual history, mental illness, substance abuse — even if nothing bad happens, people are subject to stigma and embarrassment.” . . . .
PatientsLikeMe upends this dialectic; in technology terms, it routes around the problem. Since the company is an opt-in service and not a health-care provider, Hipaa doesn’t apply. Good thing, really, since the site identifies members’ cities and their ages, two of Hipaa’s 18 prohibited categories of personal information. But Hipaa is extraneous not just legally but philosophically as well. Many PatientsLikeMe members volunteer even more information from those 18 categories. They not only post their photos but also post photos of their children and spouses. They add brief autobiographies and describe their conditions in precise detail — including potentially embarrassing particulars on sexual function, bladder control or constipation. And though they all have user names, most go by their first names on the site’s forums.
“Currently, most health-care data is inaccessible due to privacy regulations or proprietary tactics,” it declares. “As a result, research is slowed, and the development of breakthrough treatments takes decades. . . . When you and thousands like you share your data, you open up the health-care system. . . . We believe that the Internet can democratize patient data and accelerate research like never before.” . . . That pretty much defines pragmatism, and it exemplifies these strategic information-for-benefit exchanges people make like taking a blood test to get life insurance or consenting to a background check to secure a new job. Only now, at places like PatientsLikeMe, information has a currency that’s far more liquid than ever. Converted into data and bundled with information from those like us, private information can be invested for both immediate gains and long-term returns. And there’s a fortunate side effect to converting your health history into data — it strips it of metaphor, of secrecy, of stigma. It becomes concrete, manageable and valuable. . . . .
PatientsLikeMe raises many more questions and quandaries than it answers. Joe Heyman, a practicing physician in Amesbury, Mass., and the chair-elect of the A.M.A.’s board of trustees, praises the potential benefits of a tool like PatientsLikeMe for patients. He’s just uncomfortable with who’s minding the toolbox. “The idea of them is a wonderful thing,” he says. “But you know, as a physician I have a code of ethics. We have licensing boards and accreditation and all these people keeping an eye on us.” Heyman suggests that if physicians themselves aren’t sole stewards of the patient data — his first choice — then there should be some national standards or a law that covers a company like PatientsLikeMe that traffics in such data.
Heyman is also uncomfortable with how PatientsLikeMe encourages patients to take their medical information and then act on it. “Sometimes patients misunderstand what a doctor says to them,” he says, “so by the time it gets to the third or fourth party it’s like a game of telephone. It’s not as reliable as coming from the horse’s mouth.”
Heyman may be speaking from the perspective of the injured party — PatientsLikeMe could be seen as a direct challenge to physicians’ omniscience — but there’s still something to his concerns. PatientsLikeMe not only lets members track their disease; it also tacitly encourages them to take action. While PatientsLikeMe advises users to consult a doctor before changing their treatments or dosages — patients can print out an exhaustive status report, replete with graphs and charts, to take on doctors’ visits, and personal physicians can register as caregivers on the site — there will inevitably be patients who treat the Web site’s apparent rigor and depth as a substitute for a physician’s training and expertise.
Erik Ensrud, the neurologist at Brigham and Women’s Hospital, worries that patients could spot an animal study or early-stage trial investigating an off-label usage of a drug and then start taking that drug in the hope that the researchers are onto something. “Even if a treatment seems promising, it could result in a very serious reduction in lifespan,” he suggests. “We’re talking survival.” . . .
Measles in California and Vaccine Exemptions
On Friday, just after I finished taking my son, recently turned 5, to the doctor for his three vaccinations, I read an article in the New York Times about how many parents don't feel the need to protect their children in this way - which is extremely unfortunate for the rest of us. The Times article reports,
In a highly unusual outbreak of measles here last month, 12 children fell ill; nine of them had not been inoculated against the virus because their parents objected, and the other three were too young to receive vaccines.
The parents who objected to their children being inoculated are among a small but growing number of vaccine skeptics in California and other states who take advantage of exemptions to laws requiring vaccinations for school-age children. The exemptions have been growing since the early 1990s at a rate that many epidemiologists, public health officials and physicians find disturbing.
Children who are not vaccinated are unnecessarily susceptible to serious illnesses, they say, but also present a danger to children who have had their shots — the measles vaccine, for instance, is only 95 percent effective — and to those children too young to receive certain vaccines. . . .
Every state allows medical exemptions, and most permit exemptions based on religious practices. But an increasing number of the vaccine skeptics belong to a different group — those who object to the inoculations because of their personal beliefs, often related to an unproven notion that vaccines are linked to autism and other disorders. Twenty states, including California, Ohio and Texas, allow some kind of personal exemption, according to a tally by the Johns Hopkins University.
“I refuse to sacrifice my children for the greater good,” said Sybil Carlson, whose 6-year-old son goes to school with several of the children hit by the measles outbreak here. The boy is immunized against some diseases but not measles, Ms. Carlson said, while his 3-year-old brother has had just one shot, protecting him against meningitis. “When I began to read about vaccines and how they work,” she said, “I saw medical studies, not given to use by the mainstream media, connecting them with neurological disorders, asthma and immunology.”
Ms. Carlson said she understood what was at stake. “I cannot deny that my child can put someone else at risk,” she said. . . . .
“If you have clusters of exemptions, you increase the risk of exposing everyone in the community,” said Dr. Omer, who has extensively studied disease outbreaks and vaccines. . . . . “The very success of immunizations has turned out to be an Achilles’ heel,” said Dr. Mark Sawyer, a pediatrician and infectious disease specialist at Rady Children’s Hospital in San Diego. “Most of these parents have never seen measles, and don’t realize it could be a bad disease so they turn their concerns to unfounded risks. They do not perceive risk of the disease but perceive risk of the vaccine.”
Dr. Sawyer and the vast majority of pediatricians believe strongly that vaccinations are the cornerstone of sound public health. Many doctors view the so-called exempters as parasites, of a sort, benefiting from the otherwise inoculated majority. Most children get immunized to measles from a combined measles, mumps and rubella vaccine, a live virus. . . .
Recent news that a federal vaccine court agreed to pay the family of an autistic child in Georgia who had an underlying mitochondrial disorder has led some skeptics to speculate that vaccines may worsen such conditions. Again, researchers say there is no evidence to support this thesis. Alexandra Stewart, director of the Epidemiology of U.S. Immunization Law project at George Washington University, said many of these parents are influenced by misinformation obtained from Web sites that oppose vaccination. . . .
While many parents meet deep resistance and even hostility from pediatricians when they choose to delay, space or reject vaccines, they are often able to find doctors who support their choice. . . . “I don’t think it is such a critical public health issue that we should force parents into it,” Dr. Sears said. “I don’t lecture the parents or try to change their mind; if they flat out tell me they understand the risks I feel that I should be very respectful of their decision.”
Some parents of unvaccinated children go to great lengths to expose their children to childhood diseases to help them build natural immunities. In the wake of last month’s outbreak, Linda Palmer considered sending her son to a measles party to contract the virus. Several years ago, the boy, now 12, contracted chicken pox when Ms. Palmer had him attend a gathering of children with that virus. “It is a very common thing in the natural-health oriented world,” Ms. Palmer said of the parties. She ultimately decided against the measles party for fear of having her son ostracized if he became ill. . . .
While the laws vary from state to state, most allow children to attend school if their parents agree to keep them home during any outbreak of illnesses prevented by vaccines. The easier it is to get an exemption — some states require barely any paperwork — the more people opt for them, according to Dr. Omer’s research, supported by other vaccine experts.
There are differences within states, too. There tend to be geographic clusters of “exempters” in certain counties or even neighborhoods or schools. According to a 2006 article in The Journal of The American Medical Association, exemption rates of 15 percent to 18 percent have been found in Ashland, Ore., and Vashon, Wash. In California, where the statewide rate is about 1.5 percent, some counties were as high as 10 percent to 19 percent of kindergartners. . . .
March 23, 2008
Organ Transplant Waiting List Problems
The Washington Post reports today on the list of individuals waiting for organ transplants and reports that many on the waiting list are actually ineligible. Rob Stein writes,
The list of patients waiting for organ transplants, which is widely used to promote organ donations, includes thousands who are ineligible for the operations, according to statistics kept by the national network that manages the allocation of organs.
More than a third of the nearly 98,000 patients on the list at any one time are classified as "inactive," meaning they could not be given an organ if it became available because they are too sick, or not sick enough, or for some other, often unexplained, reason.
Although the need for organs far outpaces the supply, critics say the large number of inactive patients on the list may signal that potential recipients are languishing in limbo too long and that including them could mislead potential donors, recipients and policymakers about the magnitude of the need.
Officials at the United Network for Organ Sharing (UNOS), which oversees the transplant system under a federal contract and provided a breakdown of its waiting list at the request of The Washington Post, defend the practice. Many patients are inactive for only short periods because of temporary complications or other issues that are often resolved, they say. But critics note that a significant number of patients have been inactive for more than two years and may never become eligible. . . .
The revelation comes at a time when advocates of organ donation have come under fire for using increasingly aggressive strategies to obtain organs, justifying their efforts by citing the long and steadily growing waiting list. "Part of the argument for the push to get more people to be donors, and for expanding the types of procedures that we do to get organs, is there's all these people waiting for organs and dying in the meantime," said Joan McGregor, a bioethicist at Arizona State University. "If the number is not accurate, that's giving people the false impression that the situation is more serious than it is. It's deceptive."
The advocates, however, say that there are compelling reasons to keep many inactive patients on the list and that the continuing shortfall in organs overshadows any questions about them. "Whether it's 75,000 or 100,000, there are still far more people who need transplants than can get them," said Robert Higgins, president-elect of UNOS. "None of this changes the fact that there is a significant number of people who die waiting."
Of 97,772 patients on the waiting list as of Feb. 29, which officials said provided a representative snapshot, 32,014 -- nearly 33 percent -- were inactive. The proportion of inactive patients varied with the type of organ, ranging from nearly 26 percent of those needing livers to nearly 69 percent of those waiting for a pancreas. Nearly 33 percent of those waiting for kidneys, the transplant most often sought, were inactive. Most inactive patients had been ineligible for at least a year -- and often for more than two years. More than 55 percent of the patients on the list for hearts, and nearly 49 percent waiting for livers, had been inactive for more than two years. Nearly half of those waiting for kidneys had been inactive for at least a year -- and nearly a third for more than two years.
"I could expect people to be on there for months potentially," said Arthur L. Caplan, a University of Pennsylvania bioethicist. "But more than two years? What's that about?" . . . .
"This raises the question about whether the transplant centers are doing their jobs," Caplan said. "If I've been on the inactive list for two years, my question is, 'What has been done to either get me on the active list or take me off the list?' " . . . .
The size of the list could be particularly important to people who are considering becoming a "living donor" by donating a kidney or a piece of their lung, liver or pancreas -- a practice that has spurred intense debate over whether such donors are fully counseled about the risks. Exaggerating the size of the list is also unfair to active recipients, said Luebke, who donated a kidney to her sister in 1994. "It plays on the psyche of the person who's on the wait list," she said. " 'Am I up against 74,000 or 50,000?' " . . . .
"I don't believe there is any reason to be concerned about this," said James F. Burdick, who heads the division of transplantation at the federal Department of Health and Human Services. "I don't think there's anything that indicates that patients are not getting a fair shake."
Others noted that the size of the list is often used in lobbying efforts to seek funding or to change organ-procurement policies. Donation advocates are campaigning to revise state laws to make it easier to obtain organs in ways some say may sacrifice the needs of dying patients and their families. "It does help the political cause to push for legislation and policies to increase donor rates to use the bigger numbers," Caplan said. "It's not the accurate and truthful thing to be doing." Advocates are also pushing a controversial strategy for obtaining organs from patients who are not yet brain-dead, known as donation after cardiac death, or DCD. "The push for DCD is based solely on the idea that we have a huge disparity of organs," said Gail Van Norman, an anesthesiologist and bioethicist at the University of Washington. "But if 30 percent of the names are the list are inactive, the data isn't a true reflection."