How the Organ Transplant System Is Stacked Against the Most Needy, and Why You Should Be a Donor
Being an organ donor is simple and can save lives; conceivably, eight lives. But the system is very much in need of reform.
Ever see the bumpersticker, “Don’t take your organs to Heaven, Heaven knows we need them here!”? Regardless of whether you believe in God, these stickers make a good point: Why are we taking our organs to the crematorium, or burying them six feet underground, when we could use them to avoid someone ending up in the same situation? And by same situation, I mean dead.
More than 100,000 Americans are waiting for lifesaving operations. Unfortunately, organ donation rates do not match organ demand. Each year 6,000 or more people die waiting for organ transplants. What’s more, because the organ transplant system operates with a built-in bias against the poor, minorities are nearly half as likely to receive organs, even though they are more likely than whites to need them. In 2008, 7,182 people died waiting for organs; 4,638 people died waiting for kidney transplants, and 1,542 of them were black. In other words, 64 percent of deaths on waiting lists are for kidneys, and 33 percent of deaths on the kidney waiting list are black patients.
Blacks in America donate organs (13 percent of donors) at about the same rate they make up the population (14 percent), but they represent a disproportionate 35 percent of the kidney waiting list. More problematic is the fact that many in need of an organ do not even make the lists, or not in time, stymied by a complex patchwork system that discriminates against poor and minorities in any number of ways, many of which can be fixed.
Be an Organ Donor
Unfortunately, the steps for signing up to be a donor are not as well known as they should be. Some people do not even know whether they are organ donors, and different states have different processes for enrollment. Some states allow donors to sign up online, while other states have donors sign up at the DMV (sometimes as easy as checking a box), upon renewing a driver’s license or ID card. Most states have both (ideal) or one of these policies in effect, but others also offer the option of obtaining, and carrying, at all times, a donor card -- which, realistically, not everyone does.
One organ donor can save an incredible eight lives. With organ donation, death is an opportunity for others to live. But myths abound, perhaps discouraging people from signing up. One is the absurd idea that a physician may let an organ donor die to save people on the transplant list. Needless to say, it's only after death that organ donor networks are notified of an available organ. Also, it's not like doctors rifle through wallets to check for organ donor status before making a life or death decision. Plus, only certain deaths -- usually brain deaths -- make organs viable for transplant.
As of now, roughly 40 percent of the U.S. population are registered organ donors. Lack of awareness and longstanding myths are the driving forces behind most people opting out of donating -- all major religions, for example, accept or encourage organ donation.
Racial Bias in the Organ Transplant Process
Minority populations are disadvantaged in organ transplantation in several ways. Three key factors prevent African Americans from receiving kidneys at rates equal to whites. First, African Americans exhibit higher rates of diseases that cause kidney failure, like hypertension and diabetes. Five percent of people on wait lists died in 2008 and, more specifically, 4.6 percent of people on kidney wait lists perished. Second, the African-American population has a high prevalence of type B blood, which is more rare in the general population (and a problem because blood type matching is necessary for a successful transplant). Third, race-linked poverty and socioeconomic issues make it much harder to navigate the organ transplant system.
The race wealth gap is now at its highest in 25 years -- by 2009, median wealth of whites was 20 times that of minorities -- since the Census began collecting data. The disparity between African Americans and whites waiting for an organ (or death, whichever comes first) is yet another example of the challenges of poverty. Studies show African Americans, and minorities in general, are referred to the wait list for a kidney transplant later, and once on the list, take longer to finally obtain a lifesaving organ. What’s interesting is that a 2009 study showed that this race gap does not exist in Canada, where, presumably, the same genetic factors affect African Americans. The researchers’ conclusion? “[O]ur results raise potentially important questions about whether better access to health services for African Americans would improve outcomes following kidney transplantation in this population.”
Dr. Clive Callender, founder of and principle investigator at the National Minority Organ and Tissue Transplant Education Program (MOTTEP), says that emphasizing access to preventive care is an important step forward. Because African Americans show disproportionate rates of diabetes and hypertension – the top two causes of kidney failure -- Callender suggests they need to receive earlier preventive care. For example, “They need to get their blood pressure checked at the age of ten – for the majority population, it’s 18-20.” Unfortunately, lack of health insurance causes many minorities to use the emergency room as a doctor’s office, at which point preventive treatment is often no longer an option. So equal access to health care, and more preventive measures, would reduce the need for an organ transplant – or even dialysis.
Short-Term Survival Strategy
Dialysis, which cleanses the blood when failed kidneys no longer can, most often requires three hospital visits a week, for 3-5 hours a time, with bouts of illness and weakness between treatments. The life expectancy of a person on dialysis is roughly five years, though some patients can survive much longer. After a kidney transplant, however, life expectancy triples to about 15 years.
Little access to preventive care is not the only factor causing more African Americans than whites to be on dialysis. According to Silas Norman, chairman of the United Network for Organ Sharing minority affairs committee, “Multiple studies show that time to referral (to transplant) and time to waitlist is different for minority populations.” According to a recent study by the University of Washington, disparity in time from dialysis to waitlist among African Americans hinged on socioeconomic factors like poverty and health insurance.
During dialysis, patients deemed to be physically, mentally and economically able to undergo a transplant receive a transplant referral. However, the amount of time dialysis demands makes many poor people unable to make all of their appointments. Health providers then label the poor “non-compliant,” as opposed to “disadvantaged,” and assume that they will not keep up with the after-care necessary to maintain a successful organ transplant.
The problem is not that minorities choose to stay on dialysis, but that they struggle to meet the demands of the system. “We often require multiple tests or procedures to be done for patients right before they are perceived to be appropriate for the waiting list. If you take patients who are, broadly speaking, financially disadvantaged -- many significantly so -- all are also time-disadvantaged because they’re on dialysis, which is taking up three days a week,” said Norman.
To have African Americans referred to transplant at a rate more equal to whites, Norman advocates incentivizing referrals in a way that affects physicians' pay. Basically, as is often done in the medical field, physicians' pay could be contingent on their referral to transplant data.
Disparity in time from dialysis to wait list would not end, however, with incentivizing referrals. The reality is that those who cannot make it to dialysis regularly would probably not be able to keep up with vital transplant after care, but not due to lack of compliance. According to Callender, Medicare covers about 80 percent of expenses in the first three years following an organ transplant. After three years, patients must come up with the annual $10,000-$20,000 necessary to take the medicine vital to preventing organ rejection. While transplant centers and organizations work with patients so that most can afford the medication, some cannot find another health insurance plan to take over where Medicare left off. If they cannot come up with the cash, the organs will actually be taken back, and the patient must go back on dialysis, which, at $50-60,000 a year, costs a whole lot more than the transplant medication, but is covered by Medicare. In the words of Callender, the policy “makes no sense.”
Ironically, dialysis makes the racial disparities evident in the kidney transplant process somewhat better than other medical inequalities. Minorities without the cash or coverage necessary to secure a spot on a waiting list for other organs simply die. “For heart, liver transplants – there’s no rescue therapy as effective as dialysis…we do better with this than we do better with anything else, which is an irony,” said Callender.
On the List? Race and Poverty Still a Problem
Once on a wait list, people with poor access to care are again disadvantaged. In all but three states – Michigan, California and Iowa -- a patient’s time on the wait list starts when a transplant center deems him or her a candidate for transplantation. Because African Americans, and anyone with limited access to health care, are referred to a transplant center later, the amount of wait time they have under their belts will often be significantly lower than wealthier patients who started dialysis later (and are less sick) but were referred earlier. In MI, CA and IA, however, wait time is counted more fairly -- from the day of approval (assuming kidney functioning is less than 20 percent) or from the start of dialysis, which often occurs at 10-15 percent of kidney function, Norman explained.
For the system to be more equitable, Norman and Callender both advocate counting wait time from the start of dialysis or kidney failure. “If you place a person on the waiting list at 19 percent (of kidney function), they may have enough waiting time that they get an offer of a deceased donor transplant before ever having to go on dialysis, which is ideal,” said Norman. Again, getting patients on the wait list early is just another example of why early referral – and access to health care – is crucial.
And still, inequitable counting procedures are not the only systemic issues affecting minorities. Once on the waiting list, blood type and geographic region play crucial roles in the delay of minority transplantation, according to the University of Washington study.
The Problem With Regional Allocation
For organ transplants, the country is divided into 11 allocation regions. In each region, an organ procurement organization (OPO) oversees the selection of organ transplant patients. Some regions have more donors or transplant centers than others, making the regional list lengths unequal. OPOs give first priority to patients in their region. For many organs, time “on ice,” or between bodies, is crucial. Thus, organs are allocated regionally, with the sickest, best-matched patients receiving organs available within their region. Only after a region’s transplant list yields no viable matches will the organ move on to a nearby location, where the same matching process is applied.
Here, a serious flaw is built into the system: Rich people can afford to fly out to an available organ or “multi-list,” putting their names on several waiting lists, so that they have a better chance of finding a donor match. What minorities could do – had they the information necessary – is multi-list on regions close by. Karen Cummings, a public and professional education specialist reaching out to Dominican and African-American communities at NYODN (New York Organ Donation Network), said the issue for minorities is “making sure they know that, for example, Pennsylvania, Connecticut, those are areas in your region.” But educating minorities on the issues surrounding organ transplantation does not stop there. As Cummings, Callender and Norman all noted, education and communication are vital.
Thanks to educational work by Callender and other minority outreach groups, recent years have shown gradual increases in African-American organ donation (from 3 to 13 percent since 1982). But increasing donors is still vital to saving lives. Callender points to five reasons African Americans are reluctant to be donors – lack of awareness, misperceptions, distrust of health care providers, connecting organ donation to doctors’ inclination to let those near death die, and the assumption that organs go first to white people.
As Cummings pointed out, “A lot of it is myth, but these myths are based on some historical facts. We know about the Tuskegee experiment – we know black people were experimented on without our consent.” The fact that African Americans were experimented on only 30 years ago lends credence to myths that, for example, organs only go to white people or that doctors are more likely to let donor (or black) patients die.
According to Callender, Cummings and Norman, community empowerment, education and encouraging communities to discuss wishes upon death are key to increasing organ transplantation in any community. Often, discussing after-death wishes means reaching out to the church and religious leaders --vital forces in the black community. “We work with the religious communities in black churches because issues around death and dying are very personal, and usually that’s when people become very religious. And in houses of worship we’ve had wonderful success,” said Cummings.
Another, more taboo method to increase organ transplants both among minorities and across the board is cash. As it stands, cash incentives for organ and tissue donation are illegal in America. But as a 2009 report by University of California, Berkeley sociology professor Nancy Shepher-Hughes pointed out, the black market for organ donation is thriving, and many Americans link up with brokers abroad to receive illegal operations in other countries or right here in America. The World Health Organization estimates that one fifth of the 70,000 kidneys transplanted worldwide every year come from the black market. Again, this is a method that only benefits the rich. Instead of allowing the wealthy to go overseas for transplants, the government could, for starters, pay to obtain organs for the minorities our system fails.
Those who oppose cash incentives for organ donation suggest that paying for organs would eliminate, or at least decrease, the number of “altruistic” donors. Still, others believe the two could co-exist. Paying only live donors for organs (like kidneys and partial liver donations) leaves plenty of room for deceased, altruistic donors (already the majority of the donor population) who make the decision to give up their organs upon death.
Another possibility is making organ donation part of an “assumed” process -- requiring people to opt-out of organ donations, e.g. when they get drivers' licenses and denying families the opportunity to prevent their kin from giving organs upon death. There are, however, varying degrees by which this method could be applied, with California, for example, recently enacting a law that requires DMV registrants to select an organ donor preference, rather than just ignore it.
The last, most obvious answer to the organ donation problem would be to make donation registry simpler. Different states have different organ donor sign-up processes, with some more convenient than others. Most states have registries that can be conveniently accessed at the DMV, upon renewing a license or ID card, while a shrinking number request potential donors seek out (usually online) and obtain a donor card they are advised to carry with them at all times.
The bottom line is that minorities are denied organs at disproportionate rates. Their deaths are almost entirely preventable, yet almost entirely ignored.