In honor of last week’s National Public Health Week, we have a lot of fresh, new PHLR. The latest crop of papers from public health law researchers touch on a number of important points and issues including transportation safety, implementation, tobacco control, and media presentation of public health law. Check out Scott Burris’s brief summaries after the jump!
By Deborah Cho
In recent years, providers have attempted to shift how health care is delivered so as to include the patient in the decision-making process. This concept of shared decision-making was most memorably relayed to me in medical school through a critical lesson during which we were instructed to replace the word “noncompliant” with “non-adherent” when describing patients who were unwilling or unable to stick with treatment regimens. Noncompliance painted a picture of a paternalistic provider mandating the rules of play, while the patient cowered below as a disobedient subordinate. It also implied that the patient did something wrong by breaking the rules and that the actions of the patient ought to be modified to fit the rules, rather than the other way around. On the other hand, non-adherence signified that the patient was a contributing partner in the development of the treatment plan and, further, that he may be justified for not abiding by the terms of his plan.
There were two overarching reasons for the shift to the shared decision-making model: first, that this would produce better overall clinical results and second, that this view shows more respect for patient autonomy. Providers were learning and accepting that treatment plans prescribed within their vacuums could fail to be affordable, intelligible, or even realistic given a patient’s life circumstances.
So how does this relate to law students and lawyers?
Earlier this month, landmark findings were published in the American Journal of Psychiatry illuminating the effect of disclosing genetic risk for Alzheimer’s disease on older adults’ cognition and memory. In a case-control study, researchers administered memory function tests to a group of known carriers of the apolipoprotein E4 allele (one of the best studied genetic risk factors for developing Alzheimer’s disease), half of whom were informed of their carrier status, and half of whom were not informed of their carrier status. They reported “[s]ignificant genotype-by-disclosure interaction effects were observed on several memory rating scales and tests of immediate and delayed verbal recall. Older adults who knew their ε4+ genotype judged their memory more harshly and performed worse on an objective verbal memory test than did ε4+ adults who did not know. In contrast, older adults who knew their ε4− genotype judged their memory more positively than did ε4− adults who did not know…informing older adults that they have an APOE genotype associated with an increased risk of Alzheimer’s disease can have adverse consequences on their perception of their memory abilities and on their performance on objective memory tests. Similar consequences might be expected if other indices of an increased risk of Alzheimer’s disease are disclosed (e.g., neuroimaging or CSF biomarkers of preclinical Alzheimer’s disease.)”
These findings raise profound questions for practitioners who must make regular decisions concerning how to communicate health risk information to patients, and more fundamentally, about what principles and policies ought to govern which findings should be disclosed or disguised.
The study and its implications bear striking correlates to a set of key issues in philosophy of language relating to the meta-descriptive aspects of speech and discourse. In a series of lectures later published as How We Do Things with Words, philosopher J.L. Austin persuasively argued against a longstanding philosophical tradition that had conceptualized language as a construct that exists solely to describe reality as it is or is imagined to be; Austin reasoned that language can serve not only to describe facts but can also serve to establish new facts by representing them as such.
By Nathaniel Counts
If, out of concern for public health, the government banned potato chips today, a lot of people would get very angry. Only some of these people would be angry because they missed potato chips. For most it would be the principle of the thing – the government should not interfere with our autonomy to eat whatever we want, as long as it does not harm others, and some days this will include potato chips. I would posit that the autonomy at issue here is a narrow understanding of autonomy, and one that we should be suspicious of.
Imagine yourself in the biggest Costco in the world. It has every food in existence and they are all placed equidistant from you, and you may survey the scene and choose whatever food you most desire and then eat it. This would be true autonomy. The world we live in, however, is deeply constrained and we should question how meaningful our autonomy is.
In reality, every time someone who came to the Costco before you made a purchase, the store owners moved the product a little bit closer to you, and manufacturers began shipping more variants of it. The decisions that determined the composition of your commercial world were made over hundreds of years by individuals with no understanding of health – diet and exercise, hypertension and heat disease all being foreign concepts until recently. Today potato chips, in all their variety, take up quite a lot of shelf space, and healthful foods are hard to come by.
It is estimated that 500,000 patients are discharged from U.S. hospitals against the recommendations of medical staff each year. This category of discharges, dubbed discharges against medical advice (DAMA), encompasses cases in which patients request to be discharged in spite of countervailing medical counsel to remain hospitalized. Despite safeguards that exist to ensure that patients are adequately informed and competent to make such decisions, these cases can be ethically challenging for practitioners who may struggle to balance their commitments to patient-centered care with their impulse to accomplish what is in their view best for a patient’s health.
Writing in the most recent issue of JAMA, Alfandre et al. contend that “the term ['discharge against medical advice'] is an anachronism that has outlived its usefulness in an era of patient-centered care.” They argue that the concept and category of DAMA “sends the undesirable message that physicians discount patients’ values in clinical decision making. Accepting an informed patient’s values and preferences, even when they do not appear to coincide with commonly accepted notions of good decisions about health, is always part of patient-centered care.” The driving assumption here seems to be that if physicians genuinely include patients’ interests and values in their assessments, then the possibility of “discharge against medical advice” is ruled out ab initio, since any medical advice issued would necessarily encapsulate and reflect patients’ preferences. They therefore propose that ”[f]or a profession accountable to the public and committed to patient-centered care, continued use of the discharged against medical advice designation is clinically and ethically problematic.”
While abandoning DAMA procedures may well augment patients’ sense of acceptance among medical providers and reduce deleterious effects on therapeutic relationships that may stem from having to sign DAMA forms, it leaves relatively unaddressed the broader question of how to mitigate health risks patients may experience following medically premature or unplanned discharge. Alfandre and Schumann’s robust interpretation of patient-centeredness also raises the question of how to handle situations in which patients refuse medically appropriate discharge. On this interpretation, can the ideal of patient-centered care be squared with concerns for optimizing the equity and efficiency of resource allocations more broadly?
In the United States, over 250 million turkeys are slaughtered each year, with over 45 million just for Thanksgiving. The overwhelming majority of these birds (over 99%) are a genetically engineered and industrially-farmed breed known as Broad Breasted White. As the name suggests, this breed of turkey has an unnatural abundance of white breast meat. In many ways, industrial turkey farms are similar to industrial chicken farms–typically there are thousands of birds packed into a closed space with no natural light, no access to the outdoors, and mechanized feed and water (often laced with antibiotics and growth hormones). Adult turkeys in an industrial farm typically cannot walk properly or reproduce on their own, and artificial insemination is the norm. The eggs are hatched in an incubator and newborns have no contact with their mother. Shortly after birth, the young turkeys are placed into a large dark warehouse that will be the only space they will ever know. Their toes and beaks are cut without pain killers. Due to the grotesque environment, millions of birds die from “stress-induced conditions“. Those that survive grow at an astonishing rate, attaining market weight in just 12-18 weeks. The adults often are blind, due to lack of natural light and other factors (such as pecking fights in the tight quarters). According to one study, if a 7 pound human newborn grew at the same rate as an industrial turkey, it would be 1,500 pounds at 18 weeks of age.
A small but growing number of turkeys are non-genetically engineered Heritage Breeds. Heritage Breeds were in existence prior to the industrial-farming practices introduced in the 1960s, with some breeds tracing their roots to the 1800s. Standard farming practices for Heritage breeds include liberal roaming of pastures, humane growing conditions, and no antibiotics or growth hormones. Heritage turkeys are difficult to find, with some farmers requiring advanced notice (often months in advance) to purchase. The higher cost of Heritage turkeys (about $7 a pound, compared to approximately $1.50 a pound for industrial birds) reflects the higher cost of raising them, as well as insufficient subsidies for farmers employing organic and/or sustainable practices (along with over-subsidization of industrial and corporate farms).
It’s important to note that an organic turkey is not necessarily a Heritage breed. An organic turkey is any breed that has been fed an organic diet. Similarly, a free-range turkey is not necessary a Heritage breed. In fact, free-range does not mean that the turkey has actually stepped foot on a pasture. Rather, under USDA regulations, a bird can be labeled free-range if it lives in a space where there is access to the outdoors. Reaching the outdoors is immaterial. If knowing your turkey matters to you, be sure to ask the right questions, including the breed of the turkey, what feed the turkey has been provided (including whether the feed was comprised of genetically-modified ingredients), whether the turkey has been given antibiotics or other drugs or hormones, and whether the bird actually foraged in a pasture.
By Nathaniel Counts
We have all been confronted with the procrastination problem in one form or another. You have a paper due in a month, and you have two options. You can either work on it a little every day, or you can save it for the last two days and finish it all then. If you do not procrastinate, you will be happier – the work will feel like less of a burden and you will be less stressed out. However, one of your primary interests is spending time with your friends. Your friends are all in class with you, and you do not have other friends. If you decide not to procrastinate and they procrastinate, your little bit of work every day will mean that you will have to miss out on trips that your friends go on, and when you are available nearer to the paper’s due date, your friends will all be busy.
Your friends all procrastinate. What do you do? You procrastinate as well. In your calculus, the additional stress of having to do the paper in less time is offset by the additional time with friends.
Now re-imagine the scenario with the same closed social group, but the decision is whether or not to do drugs. If you decide not to do drugs, you will likely live a longer, healthier life, but if your friends decide to do drugs and trade in health for pleasure in the short-term, you are once again presented with the procrastination problem. If you choose the “responsible” choice, you miss out on activities with your friends now and will be healthy and capable later when your friends are not. What do you do?
By Deborah Cho
With the implementation of the Affordable Care Act, many consumers can now (or eventually…) head to HealthCare.gov to compare health insurance plans to find one that fits their needs. Health insurance plans, however, can be complicated and fraught with exceptions and exclusions that consumers learn of only when it is too late and medical bills have already started to pile up. Consumers are directed to consult member handbooks to learn their plan’s terms and conditions, but these handbooks are often nearly a hundred pages in length and densely packed with information.
Nonetheless, patients are held responsible for understanding and abiding by the terms of their plans, even if those terms are confusing and hard to fully appreciate. For example, patients are expected to know what types of medical care require prior authorization from their insurance carriers and that they must obtain approval before receiving that care. If these steps are not taken in the correct order, payment can be denied and the patient may be left to foot the bill for the services. Similarly, patients must understand that their policies may fully cover only in-network providers and must additionally know who is in-network and who is not. Because the member handbook and/or benefits document allegedly provide adequate notice, the patient is out of luck if he is not aware of these conditions.
The outcome is similar even when a medical provider or the provider’s staff does something to indicate that the medical care in question is covered by the patient’s insurance plan. This can be as simple as suggesting a specific procedure to help with the patient’s condition or even merely referring the patient to a particular specialist. A patient may accept care on the understandable yet incorrect assumption that an action recommended by his treating physician is automatically covered by his insurance plan. Though providers often verify that costly care will be covered by a patient’s insurance in order to ensure proper compensation, the instances when this does not happen can be financially devastating to patients.
So who should be responsible for knowing the ins and outs of these health insurance policies?
Art Caplan has a new piece at NBCNews.com. In “Is your doctor spying on your tweets? Social media raises medical privacy questions,” Caplan argues:
Presuming doctors, their helpers or your neighbors are going to look, ethical standards or not, shouldn’t patients be told if someone does? I think so. I think the transplant candidate had the right to know that he tweeted himself right out of a shot at a liver transplant. And you need to realize that information you put up on social media sites may wind up being used by your doctor, hospital, psychologist, school nurse or drug counselor.
Right now there are no rules or even suggestions to guide doctor-patient relationships over the Internet. Both now have new ways to look at one another outside the office or exam room. If they are going to continue to trust one another then we need to recalculate existing notions of medical privacy and confidentiality to fit an Internet world where there is not much of either.
For more, check out the full piece.
Bill of Health Contributor Art Caplan has a new opinion piece online at MedScape: “YOUR Fault if Your Unvaccinated Child Makes Someone Sick.” (Note: Registration to access MedScape is free.)
Are you doing enough to make sure that your patients and their kids are getting vaccinated? Sometimes we leave this for the pediatrician to worry about, but I think that every doctor who sees patients should make it a part of taking the history to ask if they are up to date on vaccinations. Have they gotten their boosters? What are they doing with their kids?
All over the United States, we are tragically seeing the recurrence of diseases that weren’t here 20 years ago. Whooping cough, mumps, and measles are all on the rebound because people don’t vaccinate their kids or they don’t get the booster shots that they need to grant immunity to themselves.
And Dorit Reiss has a new article up on SSRN: “Compensating the Victims of Failure to Vaccinate: What are the Options?“
Enjoying the fall foliage in Mt. Auburn Cemetery yesterday, I came across this marker for Benjamin Waterhouse. In the overwrought language that is appropriate on a grave marker: “In 1800 he introduced to the new world the blessing of vaccination. Overcame popular prejudice and distrust by testing it on his own children and thus established a title to the gratitude of future generations.”
No less today, there seems to be plenty of popular distrust of elite science. (And it doesn’t help that so much of contemporary science is infected by conflicts of interest.) Self-experimentation does have a long venerable history, which has recently become more prominent in the quantified self movement. (I’m not sure about experimenting on my kid though.)
Tomorrow, I’m heading to NYC to make a pitch to the Robert Wood Johnson Foundation’s Pioneer Fund, for major funding to launch a new project that would create a platform for robust, randomized experiments of lifestyle interventions (think: migraine management, diets, exercise regimens, nutritional supplements) for which there is virtually no FDA oversight and thus no regulatory imperative for rigorous scientific investigations. Nonetheless, these lifestyle factors are the primary drivers of health and healthcare costs. By crowdsourcing these sorts of experiments in an sound ethical framework robust against institutional corruption, I hope to develop gold-standard scientific knowledge with huge samples, but also build public engagement, public understanding, and public trust of health science.
The crowd uses Wikipedia to organize knowledge, and Indiegogo to invest in new health devices. The crowd needs a platform to create knowledge too, especially through randomized interventions, which have the potential to actually change behaviors for the better and eliminate the confounding factors that undermine observational studies.
So, wish me luck in NYC tomorrow: http://bit.ly/pioneerpitch
I have been a bit slow on blogging recently due to moving to a new house at the start of a semester (remind me why I thought *that* would be an OK idea again?) but I did want to share this very interesting piece from the New Yorker by Christopher Glazek “Why Is No One On the First Treatment To Prevent H.I.V.?“
At Petrie-Flom we held a great panel discussion right when this PrEP (pre-exposure prohylaxis) treatment (and the OraQuick home HIV test) came out, and you can watch it here. (The event featured Robert Greenwald, Director of the Center for Health Law and Policy Innovation; Douglas A. Michels, President and CEO, OraSure Technologies, Inc; David Piontkowsky, Senior Director for Medical Affairs, HIV and HIV Global Medical Director, Gilead Sciences, Inc; Kenneth H. Mayer, Medical Research Director, Co-Chair of The Fenway Institute; Kevin Cranston, Director, Bureau of Infectious Disease, Massachusetts Department of Public Health; Mark Barnes, Partner, Ropes Gray, Lecturer in Law, Harvard Law School.)
As the New Yorker Article describes (and full disclosure, I sat on an IRB that oversaw a good chunk of this research at Fenway Health at one point in my career, so I am not a disinterested observe) the use of of the drug Truvada for PrEP has some pretty impressive figures from the clinical studies:
while adherence is a concern, as it is with condoms, Truvada offers H.I.V. protection that is more effective than any other method short of abstinence. In the N.I.H. study, for example, 5.2 per cent of the placebo group “seroconverted,” or became H.I.V. positive, compared with 2.9 per cent of the Truvada group. That’s a forty-four-per-cent added protection over-all—better than inconsistent condom use. More impressively, patients who maintained a detectable amount of the drug in their system were protected at a rate of ninety-five per cent. (A later statistical analysis estimated that the drug would need to be taken four times a week to offer protection in that range.) Grant said that people in the study who took the drug four to seven days a week “were absolutely protected. We didn’t have anyone seroconvert in our cohort in the United States.”
Taking Truvada to prevent H.I.V. comes with very few risks. In the N.I.H. study, one in two hundred people had to temporarily go off the pill owing to kidney issues, but even those people were able to resume treatment after a couple of weeks. While bone-density loss occasionally occurs in Truvada takers who are already infected with the virus, no significant bone issues have emerged in the PrEP studies. And though about one in ten PrEP takers suffer from nausea at the onset of treatment, it usually dissipates after a couple of weeks. According to the U.N. panel’s Karim, Truvada’s side-effects profile is “terrific,” and Grant said that common daily medications like aspirin and birth control, as well as drugs to control blood pressure and cholesterol, are all arguably more toxic than Truvada.
Perhaps more important, drug resistance has not been observed in people who were H.I.V.-negative when they began treatment. “We’re not seeing people getting infected who are actually taking the drug,” said Grant. “There are people who take the drug home with them and choose not to take it; they get infected, but you’re not going to get drug resistance from something that stays in a drawer.” Some patients who entered the trials turned out to already have an H.I.V. infection that was too recent to be caught by a blood test. These subjects showed a small amount of drug resistance, which is why the F.D.A. now requires doctors to conduct an H.I.V. test before putting their patients on PrEP. The larger resistance threat, though, comes from the ten million H.I.V.-positive people around the world who take antiretrovirals for treatment, including, in some cases, Truvada. “The best way to prevent drug resistance is to prevent H.I.V. infection entirely,” said Grant. “We know that when we prevent a case of H.I.V., we’re preventing a lifelong risk of drug resistance.”
But that just prompts the mystery, why aren’t more people taking the drug?
Art Caplan has co-authored a new article, with Nirav R. Shah, published online today by JAMA. In “Managing the Human Toll Caused by Seasonal Influenza: New York State’s Mandate to Vaccinate or Mask,” Caplan and Shah discuss New York’s new mandate that health care personnel who have not been vaccinated against the flu must wear a mask during the coming flu season.
As healthcare institutions work to meet the triple aim of reducing healthcare costs while improving quality of care and population-wide health, efforts to expand the role of patient involvement in clinical decision making have gained appreciable momentum. Interest in increasing patient participation in clinical decision making and goal setting is premised in large part on the notion that greater patient involvement can improve health outcomes by ensuring that treatment plans align with patients’ interests, abilities and sociocultural contexts. A recent study published in the Journal of Personality and Social Psychology adds to the growing body of empirical research supporting these efforts, suggesting that the very act of allowing patients to choose between treatment alternatives can augment the efficacy of treatment by enhancing patients’ sense of personal control. By giving patients more opportunities to exercise autonomy at times when many are inclined to perceive their circumstances as well beyond their influence, healthcare providers can help to restore patients’ sense of self-governance and optimize patients’ perceptions of their situations and the medical care they receive.
The idea that empowering patients to choose between treatment options might itself contribute to better health outcomes invites clinicians to rethink how to approach formulating and conveying treatment plans to patients. Whereas traditionally some clinicians might have conceptualized their roles as experts whose responsibility is to design therapeutic plans on behalf of their patients, the principle of patient-centered care encourages providers to regard patients as associates in developing shared plans to advance and sustain health. This paradigm of care and the distinctive stance that it demands of clinicians is poetically captured by a letter penned by novelist John Steinbeck to his personal physician, in which he incisively relates “What do I want in a doctor? Perhaps more than anything else—a friend with special knowledge.”
Effectively transitioning to this horizontal model of therapeutic relationships will require careful planning and implementation. Indeed, boosting patient involvement in clinical decision making may prove increasingly elusive as medical knowledge continues to grow exponentially complex in substance and scope. As such, to realize the promises of patient-centered care, clinicians should work to develop concrete plans and quantifiable measures to operationalize the ideal of patient engagement within the context of day-to-day practice. As a first step in this direction, healthcare providers might consider ways to deliver complex biomedical knowledge to patients and surrogates in ways that are more accessible, timely and actionable. By coupling enhancements in patient education with efforts to promote patient involvement in clinical decision making, clinicians can play a pivotal role in maximizing the efficacy of healthcare innovations and delivery systems of the future.
Professor M. G. Marmot et al. conducted two studies, Whitehall I and Whitehall II, in which they studied morbidity and mortality in the British civil service sector in the 1960s and the 1980s. British civil servants are under the same plan with the National Health Service, so the studies controlled for access to healthcare. But what these famous studies found was that morbidity and mortality still correlated with income. Further research and analysis has concluded that it is job satisfaction and social status more so than income that determines health outcomes. Does an individual feel like she has control over the work she does? Is she stressed out a lot? How does she feel about herself in relationship to those around her? Does she feel healthy? Does she like her life? Those who feel in control of their lives, feel valued by society, and feel good about their health actually end up living longer and healthier lives on average compared to those who don’t share these beliefs.
Deep structural inequalities exist in every society, and social justice groups work toward greater social equality everywhere. Does the notion that social inequalities are hurting people in a physiological way change the way we feel about the mission of equality? Is health so fundamentally different that individuals who accept economic inequality might mobilize over health inequality? It is certainly implicated in the right to a dignified life, a concept underpinning the human rights movement as whole. It may be though that the social inequalities on their own terms are an equal evil, because the limitations on one’s abilities to pursue her interests are as inimical to human rights as worse health.
As public health concerns over obesity and diabetes continue to rise, physicians, public health organizations, and medical educators are thinking out of the box — and into the kitchen and grocery store. Two stories done by NPR this week feature programs aimed to increase physician influence in patient dietary choices. The first article describes Wholesome Wave, a program in which a physician writes a “prescription” for fruits and vegetables in the form of a voucher for overweight or diabetic children (and their families). The second article reports on a collaboration between Tulane University School of Medicine and Johnson & Wales University College of Culinary Arts. The hope for the two schools is for both groups of students to learn more about nutrition.
Hearing these two stories reminded me of work I did as a student at the Harvard Legal Services Center, working with the Mississippi Food Policy Council to get food stamps accepted at farmers’ markets and improve access to fruits and vegetables. Most would agree (including Michelle Obama) that providing access to fruits and vegetables in “food deserts” is a laudable goal, but I’m struck by the way in which “prescriptions” for healthy foods versus providing access to healthy food changes the level of autonomy patients have in choosing what they eat.
Couple programs like Wholesome Wave with the ACA’s increased incentives for wellness programs, and I wonder how much a doctor, employer, or insurance plan may dictate consuming that one apple (or bunch of kale) per day. As Professor Matt Lamkin described in his work last year, some employer insurance plans contain high deductibles ($4,400 in the example he describes) that are much lower ($400) if a wellness plan is followed, which often includes following a doctor’s recommendations. In the example Lamkin uses, a patient must choose between continuing unpleasant chemotherapy or paying thousands dollars more to satisfy the obligations of a higher deductible. What if patients want to toss out a doctor’s “prescription” for kale and grab a KitKat instead?
While combating obesity and diabetes is of tantamount importance, how much outside influence over what we eat (or what our children eat) is too much influence? I’m not sure where I come down on this issue, but it gives those of us simultaneously concerned with public health and patient autonomy something to chew on . . .
The congregation of Eagle Mountain International Church in Newark, Texas, recently discovered that prayer is no substitute for vaccination.
After visiting Indonesia, an unidentified visitor to the megachurch 50 miles outside Dallas — where ministers have long favored faith-healing over vaccinations — infected at least 21 people in the church and neighboring towns with measles. One victim was a 4-month old baby too young to receive a vaccination and thus totally dependent on others to do so.
Confronted with the measles outbreak, church leaders changed their tune, launched a vaccination drive, hosted vaccination clinics and encouraged the entire congregation to get immunized. The Old Testament is “full of precautionary measures,” senior pastor Terri Pearsons said after the mini-epidemic.
Theological revelation aside, Pearsons and other church leaders should have thought about this sooner. They and other vaccine resisters — from wealthy suburbanites who worry about the dangers they’ve heard from celebrities to conspiracy theorists who see only corporate profits driving a push to cover-up risks — are directly to blame for spreading unwarranted fear of vaccines.
Read the full article here.
By Kathleen West, B.S. (J.D., expected ’15)
As the world watched Prince William place the new royal baby, reluctantly snug in his car seat, into a vehicle a few weeks ago, my thoughts were not limited to, “Oh, how cute!” After two months researching and collecting a dataset to capture the U.S. laws and regulations for child passenger restraint systems, I also thought, “I wonder if he took a class and knows how to do that correctly?” Perhaps an odd thought, but misuse and faulty installation of child restraint systems is actually a major concern.
According to the CDC, proper restraint use can reduce the risk of death or injury by more than 50 percent. Yet, ongoing studies by the National Highway Traffic Safety Administration (NHTSA) are finding that as many as 20 percent of drivers with child passengers are not reading any of the instructions regarding proper installation, while 90 percent of drivers of child passengers are reporting that they are confident that they are properly installing and using child restraint systems.
Anthony Stokes, a fifteen year old kid from Decatur County, Georgia, is expected to die in a matter of months, according to his doctors at the Children’s Healthcare of Atlanta. Maybe, they say, he will live for six months. Who knows? Anthony suffers from an enlarged, increasingly less functional heart. His condition is not unusual, and a reasonably effective cure is at hand: a heart transplant. (Learn more about Anthony’s story here.)
However, Anthony has become the latest victim of a dysfunctional U.S. transplantation system, which tempts Americans with a transplant waiting list, but kicks them off if they become too sick or too old. The problem is that there are too few organs to meet demand, and this perennial problem receives far too little attention from Congress. Indeed, the U.S. transplantation list, coordinated by the United Network for Organ Sharing, UNOS, (a private organization that coordinates significant aspects of the U.S. transplant system) is so overcrowded that patients increasingly turn to black markets in India, China, Pakistan, South Africa, and other countries if they hope to survive. (Learn more about that here.) Congressional hearings document Chinese prisoners dying and shortly thereafter Americans receiving organs.
Anthony’s family and some local organizations claim that racism is behind doctors refusing to place the boy on the transplant list. Anthony is African American. They ask, what is the harm in letting him on the list?