Thirty years ago this week, President Reagan signed the National Organ Transplant Act (NOTA), which established the federal legal framework for the procurement, donation and transplantation of organs needed by desperately ill Americans. The law’s advocates hoped that it would end organ shortages, but today over 120,000 Americans are on waiting lists. With the need for organs – especially kidneys -- projected to outstrip supply even more in coming years, intense debate has broken out over whether NOTA should be amended to allow funding of incentives for donors.
The interests at stake are colossal. About 30 Americans a day either die on the waiting list or are removed from it because they have become too ill to receive a transplant. Taxpayers also bear a significant burden in the case of kidneys because of the special status of renal dialysis within the Medicare program. In 1972, Congress mandated that Medicare cover the costs of care for end stage renal disease regardless of patient age. In 2011, over 500,000 people took advantage of this benefit at a cost of over $34 billion, which is more than 6% of Medicare’s entire budget.
One commonly proposed solution to the organ shortage derives from behavioral economic “nudge” principles. Rather than requiring Americans to complete paperwork in order to opt-in to donation at death, the country could shift to the European model of presuming that donation at death was acceptable. But Tom Mone, chief executive of OneLegacy, the nation’s largest organ and tissue recovery organization, points out that “The recovery rate for deceased donors in the United States is actually better than that of European nations with presumed consent laws. The United States rigorously follows individual donor registrations whereas presumed consent countries actually defer to family objections.”
In any event, because less than 1% of deceased individuals are medically eligible to donate organs, and 75% of this group in the United States in fact does so, there simply isn’t enough “there there” to remedy the shortage with improved recovery from deceased donors.
This brings up the currently illegal option of providing incentives for living donors. NOTA’s main Capitol Hill champion, a then little-known Congressman Al Gore Jr., allowed for the possibility of rewarding donors if the purely altruism-driven donation system did not keep up with demand. Today, one of the leading exponents of this idea is Dr. Sally Satel, a resident scholar at the American Enterprise Institute. Sally recently participated in a forum on organ donation at Stanford Medical School, after which I interviewed her regarding her proposal to incentivize kidney donation. Below is an edited transcript of our discussion.
Keith Humphreys: What kind of incentives would you envision being tested and who would provide them?
Sally Satel: Donor enrichment would need to begin as a pilot trial. No one is talking about a traditional free market or private contract system. No organ “sales.” And no large lump sum of cash to donors. Those of us who want to test the power of incentives to increase the number of people receiving kidney transplants – and it is a rich network of transplant surgeons, nephrologists, legal scholars, economists, and bioethicists – envision a system where every needy patient, not just the financially well-off, can benefit.
Here is one model: a governmental entity, or a designated charity, would offer in-kind rewards, like a contribution to the donor’s retirement fund, an income tax credit or a tuition voucher, or a gift to a charity designated by the donor. Because a third party provides the reward, all patients, not just the financially secure, will benefit.
Meanwhile, imposing a waiting period of at least six months would ensure that donors didn’t act impulsively and that they were giving fully informed consent. Prospective compensated donors would be carefully screened for physical and emotional health, as is done for all donors now. The use of in-kind benefits coupled with a waiting period would screen out financially desperate individuals who might otherwise rush to donate for a large sum of instant cash and later regret it.
The donors’ kidneys would be distributed to people on the waiting list, according to the rules now in place. People who wanted to donate a kidney to a specific person — say, a father to a son — would still be able to, outside this system. Finally, all rewarded donors would be guaranteed follow-up medical care for any complications, which is not ensured now.
KH: Some remarkable people altruistically donate kidneys to complete strangers. If the U.S. adopted a paid donor model, might such individuals stop donating, thereby making the shortage worse?
SS: There are indeed remarkable people. I am a happy beneficiary of altruism. In 2006, a friend gave me a kidney. She is the epitome of the altruistic spirit – she contacted me out of the blue (upon hearing of my need from a mutual friend); there was no burden of expectation upon her as there is with the family members of needy patients. Had she not come along, I’d likely be among those in Washington DC who wait more than five years, on average, for a transplant- many of whom cannot survive the wait.
Altruism – the “gift of life” narrative – is a beautiful virtue but, clearly, is not enough. Yet, for decades, the transplant establishment has embraced altruism as the only legitimate basis for giving an organ. If we keep thinking of organs solely as gifts, there will never be enough of them. Deaths will mount, needless suffering will continue, and the global black market in organs will continue to flourish.
Your question about suppressing, or “crowding out,” altruistic donation is one that can only be answered, definitively, by piloting incentives and seeing what happens. That said, the “crowding out” is unlikely. We have no shortages of blood plasma, eggs, sperm, and cadavers for medical school dissection. Why? Because donors are remunerated. Also, data suggest that voluntary activities in such contexts are not suppressed as long as the meaning is preserved. Would-be donors could direct the financial equivalent of their benefit option to a needy party, such as the Red Cross. They could leverage their altruism to help another set of people, plus the recipient.
I’ve also heard critics allege that increasing organ donation through donor benefits “cheapens the gift.” It is unlikely that the recipient of a lifesaving kidney would agree. Even the logic is odd: would a grieving mother really say to herself: “I’d love to donate my son’s organs; it would give his tragic death some meaning. But wait, a kidney donor somewhere in the country is getting a tax credit for saving a stranger’s life, so forget it.” Bizarrely, the National Kidney Foundation thinks so, but then the foundation has been notably inept when it comes to increasing donation -- the number of kidney transplants performed over the past several years has been basically flat.
Chances are high that the promise of enrichment would repel far fewer people than it would attract – people who would welcome the chance to be rewarded for giving a kidney to save a stranger’s life.
KH: How big an impact could your proposal make? Would we clear the waiting list or just shorten it?
SS: We have to begin with pilot trials. We need to establish, most importantly, that the net number of transplants increases. There is every reason to expect that it would. After all, persuasive data show that paying for blood leads to greater donation. The U.S. is the one of the very few countries that pays donors for their blood plasma and is, in fact, the supplier for the rest of the world.
Ultimately, the effectiveness of benefits in recruiting more donors is an empirical matter. If you press me for an answer, I would say that the waiting list would be cleared within five years. But, of course, even a local increase in donations remains to be demonstrated on a small scale. Right now, proof of concept for incentivized donation is what we need.
There are a number of other important questions to answer through a trial as well. For example, what are the characteristics of participants? Age? Sex? How many interested prospective donors actually follow through with the transplant? What is the magnitude of an adequate, attractive reward?
And who are the people who choose to participate? I suspect that the opportunity to be enriched would appeal mostly to young people starting out. If compensated donation were allowed, my hunch is it would come to resemble surrogate motherhood which, in some states, allows women to be legally compensated for their time and for the risk they assume.
Surrogate mothers surely welcome the payment they receive but compensation is hardly the only factor in the decision; almost all of them say they are motivated by a strong desire to help another woman fulfill her maternal dream. Financial and humanitarian motives intertwine all the time. Did we honor the heroism of 9/11 firefighters who rushed into the World Trade Center towers any less because they got paid?
Some worry that that rewarded donation will attract only low-income people. This is possible, though only a trial project can provide the answer. But even if this turns out to be the case, why doubt the capacity of low income people to make decisions in their own interest? From the standpoint of the recipient, it is low-income individuals who stand the benefit the most insofar as the majority of people languishing on the waiting list are low income. But most important, regardless of who ends up donating, any plan should be ethically sound. That means donors’ decisions are thoroughly informed; their health is protected; they are rewarded amply; and gratitude is shown them. If these conditions are met, how is anyone exploited?
As a policy, I’ve said that testing incentives for kidney donation strikes me as the gay marriage of public health: there is simply no good reason to oppose it. Emotions? Yes. Reasons? No.
KH: In recent years, Congress and the President have often not come to agreement on less controversial matters than enriching people who donate kidneys. Do you see any reason for optimism that they would be able to amend NOTA and move forward with this proposal?
SS: Actually, it is possible that HHS itself could initiate pilot trials. The Center for Medicare and Medicaid Innovation has impressively broad authority. In theory, the Center could issue NOTA waivers to academic medical centers interested in administering a pilot program wherein living donors would be rewarded with five years of Medicare coverage. The number of transplant operations at the incentivized locations could be compared with non-participating but otherwise matched medical centers or to the historical rate of donation at the same institutions.
States should also get involved. In 1994, the late Pennsylvania Gov. Robert P. Casey, who had received a heart and liver transplant a year earlier, signed a law that would enable a bereaved family of an organ donor to get a burial benefit of up to $3,000 paid by the state directly to the funeral home. But then state health officials got cold feet because they feared that the law flouted NOTA. In the end they did not implement the funeral benefit.
I wish they’d proceeded. It might have prompted the long-overdue debate on Congressional intent vis-à-vis NOTA. I strongly contend that the intent of NOTA was to prohibit brokered, cash sales directly between buyer and seller – not a system of in-kind, third party payments. I can’t believe that Congress wanted a Scranton widow to go to jail for accepting government help in burying the beloved husband who had just bequeathed his organs at death.
The idea of testing incentives is not particularly partisan, so it is not polarizing in that sense. There are also several levels on which the issue can resonate with Congress. There is the public health dimension, the enormous cost to Medicare, and the existence of a global black market. The black market is probably not patronized heavily by Americans, but it’s a human rights fiasco nonetheless. There is some precedent for drafting legislation. The late Senator Arlen Specter of Pennsylvania circulated a draft bill in 2008–2009, The Organ Donor Clarification Act, “to clarify that laws that honor and reward organ donation are not preempted by Federal criminal law and acceptance of such government benefits is not criminal.”
Change will not happen without engaged advocates. Though more transplant surgeons and physicians are acknowledging the unintended cruelty of a rigid, altruism-only system, there is no history of grassroots patient and family agitation for innovation in transplant policy. Members of Congress need to be pushed by the people who vote for them. Mobilizing many of the tens of thousands of people on the list and their loved ones is among the next steps for us.
Keith Humphreys is a Professor of Psychiatry and Mental Health Policy Director at Stanford University. Follow him on Twitter: @KeithNHumphreys