
Organ FailureDoing battle with the National Kidney Foundation.
Posted Friday, Aug. 15, 2008, at 7:06 AM ET
Early this summer, the American Medical Association voted to lobby Congress to permit the study of financial incentives for organ donation. With nearly 100,000 people on the national transplant list and 18 dying every day for want of an organ, the AMA resolution to address the organ shortage could not be more timely.
And yet the National Kidney Foundation, the nation's largest advocacy group for people with kidney disease, won't be a reliable ally. The NKF, which has a $32 million annual budget and is to kidney disease what the American Lung Association is to asthma, says it laments that thousands "die while waiting for that 'Gift of Life.' " But instead of locking arms with the AMA, the kidney foundation is poised to sabotage the association's efforts—in keeping with its recent practice of blocking any attempt to explore the possibility of compensating organ donors. Why the stubborn opposition?
When I spoke with Dolph Chianchiano, senior vice president for health policy and research at the NKF, he told me that "compensating donors would cheapen the gift" and lead to fewer people donating overall. As a kidney recipient, I find this hard to fathom. When I was facing years on dialysis, any healthy kidney, paid for or not, would have been precious to me. What about would-be donors? Won't some be more likely to donate their kidneys, or the organs of their family members, because of the prospect of a financial reward? And if others don't benefit in this way themselves, will they really be dissuaded because other people somewhere in the country accepted a form of payment? When asked in a 2005 Gallup poll commissioned by the U.S. Department of Health and Human Services whether "payments" would affect their willingness to give a family member's organs, 19 percent answered "more likely," while 9 percent said "less likely." That margin favors donation. Young people were especially receptive. One-third of 18-to-34-year-olds said the offer of incentives would make them "more likely" to give a family member's organs, compared with 7 percent who said "less likely."
There's additional evidence that the NKF is wrong here. Paying for other products of the body, such as sperm, ova, and wombs (as in maternal surrogacy) is accepted and has not created shortages. When someone donates his or her body to science, medical schools and tissue processing companies cover the costs of cremation or the burial costs of the entire donated body after dissection or experimental use.
The NKF also makes the standard argument that compensation for organs "could propel other countries to sanction an unethical and unjust standard of immense proportions, one in which the wealthy readily obtain organs from the poor." But India, Pakistan, China, the Philippines, Colombia, and other countries already harbor flourishing underground markets. Compensating donors in America won't spur more wealthy patients to travel abroad for organs. It's more likely to show other governments how to conduct a safe and transparent system of exchange under the rule of law. In the end, more people will receive transplants in their home country.
In the end, of course, the effect of compensation on organ supply is a question that only pilot projects can answer. This is what the NKF is trying to suppress. And yet the foundation once understood the need to experiment. In 1993, the NKF endorsed payment of burial expenses for deceased organ donors, a plan passed by the Pennsylvania Legislature. The foundation also supported a House bill in 1999 that would have granted a $10,000 life insurance policy to families with benefits payable upon transplantation of the deceased's organs. At the time, the chairman of NKF's Office of Scientific and Public Policy testified, "We would support at least a pilot study on financial incentives."
It is unclear why the NKF has become less tolerant of incentives as the organ shortage grows more critical with time. But whatever the reason, it forcefully obstructed efforts at reform in 2003—the last time Congress debated bold incentives. That year, House legislation called for noncash rewards, specifying life insurance policies or annuities to the families of the deceased, not an unfettered free market. But the NKF denounced the proposal, railing against "global economists who would import a poor person into this country" to sell an organ. The bill died in committee, partly because of the NKF's efforts. On the Senate side in 2003, the NKF used its clout to kill a provision to study incentives. Afterward, the NKF boasted on its Web site that "a successful advocacy effort by NKF resulted in the removal of the provision." Imagine the American Cancer Society bragging about having derailed an experimental project that might help breast cancer patients—especially when other respected groups were in favor of the measure.
I have long been mystified by the NKF's stalwart opposition to pilot studies. I was spurred to write now about my puzzlement by a recent encounter with the long arm of the foundation. At the end of July, I was invited to speak about the case for donor compensation at a regional transplant conference. Three days later, I was disinvited. Apparently, my chagrined host had not vetted the topic with the local NKF chapter, which was co-sponsoring the event. "I regret that I am having to withdraw my invitation," he wrote me. The co-sponsoring NKF affiliate, he continued, "was very much concerned about repercussions from the New York office, which they think would view the talk as a repudiation of the party line." The NKF similarly tried to stifle a debate on organ incentives at the American Enterprise Institute in 2006.
To be fair, the NKF does some good. It holds scores of fundraising charity events. It offers the public free screening for kidney disease and makes research grants to scientists. The NKF vigorously lobbies Medicare for better reimbursement rates for dialysis care, and, for better or worse (as some nephrologists will tell you), the foundation's guidelines for dialysis set the standard of care for the 380,000 U.S. patients who receive that treatment.
Congress listens to the NKF because it is a major force within the transplant community. But the foundation's recalcitrance on financial incentives for organ donors is hurting the very constituency it purports to serve. Last year, 4,000 dialysis patients died because they could not survive the wait for an organ. When Congress returns in the fall, the AMA will begin its push for demonstration projects on incentives. The NKF will have a chance to return to its earlier common-sense philosophy about rewarding organ donors. Unless it grasps the opportunity, the foundation should not call itself a true advocate for kidney patients.
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Remarks from the Fray:
The donation of an organ to sperm donation and "maternal surrogacy" is ridiculous. Giving up an organ you're giving up a part of you that helps you to function properly for the rest of your life. Sure we can do without two kidneys, but that doesn't diminish the importance of distinguishing such an important donation. If we get into auctioning off part of our bodies (not fluids or space) where will that lead us? It is ethically untenable. The AMA has been wrong several times before and is wrong now. Rah rah, NKF.
--Pachomius
(To reply, click here.)
As a physician, I am amazed that Sally Satel never mentions the potential value of stem cell research to address the massive organ shortage issues that plague our current medical system. I worry that she avoids this issue because it would place her, as a starch conservative, in an awkward position with her countrymen. It is also possible that she does not mention the probability that paying for organs will lead to an even greater disparity in health care between the have and have-nots and minority and majority groups, respectively, because she does not believe that such disparities exist. (She has consistently disagreed with medical researchers who has identified race-based disparities in health care, most notoriously in organ transplantation.) Dr. Satel is not the objective arbiter that is needed to discuss this very complex issue. I am not sure why the lay-media continue to use her in this fashion.
--Ann Newton
(To reply, click here.)
The National Kidney Foundation stands by its firm opposition to the buying and selling of kidneys. Slates article today featuring the well known views of Sally Satel does not justify making a commodity out of human body parts. Our Board of Directors, many of whom are transplant recipients or family members of recipients, has unanimously voted to oppose any effort to sell kidneys through a commercial transaction.
Such a practice would not increase donation, in NKFs judgment. In fact, 10.8 percent of those polled in a recent national survey would be less likely to grant consent for the organs of a deceased family member to be used for transplant if they were offered a payment, while 68.2 percent said they would be neither more nor less likely to grant consent. Thus, there is little data to show that financial incentives would increase donation rates. More likely, "paying for organs" would lead people to view organs as commodities, having the opposite effect in diminishing the altruistic charitable act of organ donation. NKFs National Donor Family Council and transplant recipients council, transAction share and advocates this position. They honor the gift of an organ as a tribute to the selfless helping of others for no reason other than it is the right thing to do.
Organ donation must remain a gift. To put a price on it or offer money, indeed forming a market for organs, will result in fewer transplants. NKF supports many other programs that will increase transplantation; paired donation, pre-emptive transplants, living donation and extended criteria donors. But, NKF will continue to oppose all efforts to sell the Gift of Life.
--John Davis
(To reply, click here.)
It's obvious from the responses to Dr. Satel's article that the idea of financial incentives for organ donation remains controversial. As the organ shortage continues to grow, I expect public opinion will eventually support a legal organ market and changes in public policy will follow.
In the mean time, there is an already-legal way to put a big dent in the organ shortage -- allocate donated organs first to people who have agreed to donate their own organs when they die. The United Network for Organ Sharing, which manages the national organ allocation system, has the power to make this simple policy change. No legislative approval is required.
Giving organs first to organ donors will convince more people to register as organ donors. It will also make the organ allocation system fairer. People who aren't willing to share the gift of life should go to the back of the waiting list as long as there is a shortage of organs.
Americans who want to donate their organs to other registered organ donors don't have to wait for UNOS to act. They can join LifeSharers, a non-profit network of organ donors who agree to offer their organs first to other organ donors when they die.
--daveundis
(To reply, click here.)
The problem is sheer cost. Let us postulate that a kidney transplant is already expensive; if you compensate 'donors', you raise the cost of the operation. Regardless of who pays for the operation, the price tag is going to have to rise somewhere.
--Shubniggurat
(To reply, click here.)
(8/17)