As the demand for donor organs outstrips the supply, the transplant community has continued its quest for innovative solutions to narrow the gap.
“What we're doing now is not working,” said Robert S. Gaston, MD, Codirector of the Comprehensive Transplant Institute and Endowed Professor of Transplant Nephrology at the University of Alabama at Birmingham, in a phone interview. Dr. Gaston is also Past President of the American Society of Transplantation (AST), but he noted in the interview that he was expressing his own opinion, not that of the society.
“The number of living donors continues to decline, the number of deceased donors is relatively flat, and the number of people who need kidneys grows every year. I think that we need to look at specific things that can be done.”
While there is consensus that organ donation should be increased, the question of exactly how to do that is another story. For the AST's part, the society is embarking on an effort to examine its position on organ donor compensation, an issue that has long been debated in the transplant community and society at large.
“We have several different position statements that address the issue from different angles such that if each were interpreted literally they are almost contradictory,” Dr. Gaston said.
“On the one hand, we have a position statement that would advocate looking at how incentives might be implemented through pilot projects. On the other hand, we have endorsed the Declaration of Istanbul, which outlaws any kind of incentive in the process, and then we have another statement that said there should be no monetary or cash payment in any way to donors.
“We have put together a task force to try and look at each of these and come up with a recommendation back to the Board for a position statement that is through and through consistent.”
Meet in the Middle
Much of the discussion on organ donor compensation has taken place at the extremes of opinion.
“I think one of the problems is that the debate on this issue has been highly polarized between a group and some individuals who would really favor a free-market approach to organs, on the one hand, and, on the other hand, the group that opposes any sort of cash compensation in the mix,” Dr. Gaston said.
“It's not that clear-cut black-and-white. There is a huge middle ground where you recognize the sacrifice of donors, recognize that perhaps that sacrifice may be a strong disincentive to people to donate and that rectifying that might have a benefit in terms of increasing the number of living donors.
“My sense is that there are a few people on each pole but that the majority of the membership is somewhere in the middle and that if you could find some way to capture that sentiment in terms of real policy proposals that you might be able to move forward.”
The National Organ Transplant Act (NOTA) currently outlaws the exchange of organs for valuable consideration.
“I would never recommend that AST endorse or that anyone personally endorse a fruit-basket overhaul of the whole system,” Dr. Gaston said. “I think where it is now you would look at strategically changing NOTA to allow pilot projects and then to test the hypotheses in pilot projects that would be limited to organ recovery area or a single state or some defined area and come up with some real data that then would further inform the national debate.”
What's in a Name
One aspect of this national debate is how terminology is used, as indicated by Sandra J. Taler, MD, Consultant in the Division of Nephrology and Hypertension and Associate Professor of Medicine at the Mayo Clinic, as well as Vice Chair of the Organ Procurement and Transplantation Network Living Donor Committee.
“I do not feel comfortable with monetary incentives, and so I think it depends on how you define an incentive,” she said in a phone interview.
“I think that the whole area of insurance is very important, and I believe that we have some obligation to donors to make sure that they stay well and that they get follow-up. Right now there really isn't a good mechanism for that.
“I don't think we can afford to provide complete health insurance, complete medical insurance, to donors, but I do think that there are certain things that need to be followed that some of them don't have coverage and don't get checked. I could see things like hypertension coverage, monitoring of kidney function, and, possibly, kidney failure care.”
Lloyd E. Ratner, MD, MPH, Professor of Surgery at Columbia University and Director of Renal and Pancreatic Transplantation at New York–Presbyterian Hospital, expressed a similar point of view.
“There are incentives, and there's removal of disincentives,” he said in a phone interview. “I've long been someone who's advocated for removal of disincentives, and where the removal of disincentives begins and giving incentives ends off is sort of a gray zone.
“Way back in 1995 when we started doing the laparoscopic donor nephrectomy, we decreased pain, decreased hospitalization, decreased recuperative time so people could get back to work earlier so they wouldn't take as much of a financial hit in terms of lost wages—all that is removal of disincentives.”
Direct monetary payment is a more complicated story.
“I think there's a lot of room for abuse there,” Dr. Ratner said. “I'm not inherently opposed to it, but I think that unless it's structured properly, and I'm not sure how to do that, there's a lot of opportunity for abuse and coercion and for people to be dishonest about their medical histories.”
The debate over compensation for organ donation has reached a stalemate, he noted.
“I think that we're not going to reach consensus on this issue,” he said. “The issue's been debated for a couple of decades now, and I don't think anyone is swaying anyone else's opinion either for or against. It's time to break away from this argument and discussion and start looking at other ways to improve organ donation.”
Other ways to promote organ donation include education of the public and dissemination of living donation best practices to transplant programs, noted Didier Mandelbrot, MD, Medical Director of the Living Kidney Donor Program at Beth Israel Deaconess Medical Center. Dr. Mandelbrot is also a member of the Executive Committee of AST's Live Donor Community of Practice.
“There's actually already a number of programs to try to address financial disincentives to living donation, and I personally am very supportive of these programs,” Dr. Mandelbrot said. “I think there's actually room to expand them.
“One of them is called the National Living Donor Assistance Center. This is funded by the government, and that center will reimburse up to $6,000 in travel and lodging and meal expenses for living donors.”
Certain states also offer up to a $10,000 tax deduction to living organ donors for lost wages and for travel and lodging expenses, he added.
“These are the kind of incentives that I personally support,” he said. “It's a fairly substantial amount of money, up to $6,000, but I still think there's an ethical difference, a quantum leap, that would be involved in going to actually paying for organs and developing a market for organs, even if it were government regulated. The idea of a market for organs would really open a can of worms that I personally have concerns about.”
That perspective doesn't rule out support for a test of organ donation incentives.
“This is an emotional issue; a lot of people take very strong emotional positions and feel very strongly that this will help things or this will hurt things if we developed a market for organs, but I think a lot of us think we should at least get data to see how a market for organs might work,” Dr. Mandelbrot said.
“I personally think that it would really inform the discussion. If something's not ethical and doesn't work, obviously it's not something that's going to be implemented. If something is pushing the limits of ethics but is very successful, then there may be ways to consider it, to modify it.
“I think a lot of the society membership, and I personally, would be supportive of a very limited, well-designed clinical trial that looks at what are the outcomes with paying for organs.”
The recommendations of the AST task force are due to be presented in December, AST media contact Sean Carney wrote in an e-mail message.
“The purpose of any demonstration project would be to see if addressing these issues that we've been discussing would have an impact on the donor population,” Dr. Gaston said. “If it doesn't have an impact, then I think that the entire issue can be put to rest.”
Canadian Public Supports Organ Donation Incentives, Survey Says
Members of the general public were much more accepting of financial incentives for living and deceased donation than health professionals were, according to the results of a Canadian study published early online by Clinical Journal of the American Society of Nephrology.
Braden Manns, MD, MSc, of the Division of Nephrology at the University of Calgary, was the senior author.
A web-based survey was given to three groups of participants: the general public (2,004 respondents), health care professionals (339 respondents), and people affected by kidney disease (268 respondents). Reponses were collected over a four-week period beginning Oct. 11, 2011.
About 71% of the general public, 66% of people affected by kidney disease, and 62% of health professionals supported one or more types of financial incentives to increase deceased donation.
Reimbursement of funeral expenses found the most support among all groups, followed by a tax break or credit to the donor's family. A monetary payment to the donor's estate was least supported. Respondents also were strongly in favor of efforts to remove financial disincentives to living donation by reimbursing expenses.
Around 40% of all three groups found a government tax break or credit following living kidney donation to be acceptable.
While 45% of the general public responded that a monetary payment would be an acceptable incentive for living kidney donation, only 15% of health professionals shared that perspective.
“Future research in this area should focus on the determination of the impact, effectiveness, and cost-effectiveness of financial incentives on donation rates,” Dr. Manns and colleagues wrote.
The study was funded by the George and Kay Goldlist Family Foundation.