The Cost of Giving
Those who know me recognize that I am not an expert on all things (or some might say, on anything). Given this reality, and in an effort to keep the president’s blog fresh, I have decided to identify topics that I believe are important and of interest to the members of the AST, and then ask experts to comment and provide their insight.
For the first blog, I invited Bob Gaston, MD, a former AST President and someone with a long-standing interest in disincentives to organ donation, to comment on recent initiatives aimed at removing disincentives to living kidney donation.
The cost of giving
One of the saddest tasks for any transplant professional is to explain the nuance of the waiting list and organ allocation to a prospective recipient: “…in 5-8 years, we may have a kidney for you…” Over the course of my career, I have come to realize that, for us, “job one” is to get people transplanted, and with good kidneys. We all recognize the best source of good kidneys is living donors, the fact that underlies our current emphasis on swaps and desensitization. Promoting donor integrity is also a primary concern. At the same time ongoing research is better defining the associated psychological and medical risks, it is increasingly obvious that we impose on donors’ financial risk, a concept that threatens our perceptions of donation as an altruistic act. Gill et al (JASN, 2014 Jul 17, epub) documented, in the recent economic downturn, greatest decline in living donation among those most challenged socioeconomically, indicating the role of financial risk in discouraging “altruistic” donors.
All this is occurring against a backdrop of intense controversy regarding “incentives” for donation that has raged for years, incorporating both national and global perspectives on ethics, economics, black markets, free markets, and so on. Amidst so much controversy, though, some light is beginning to emerge. Strong ethical and economic arguments can be advanced for and against incentives. The Declaration of Istanbul outlines important precepts that address unethical practices, including underground markets, on a global basis. However, in the United States, with a well-developed organ recovery infrastructure and rule of law, examples from the underground market (as were the basis of a recent New York Times expose) may be less relevant. There is emerging support in the US for a regulated infrastructure that could address the financial implications of organ donation. The National Living Donor Assistance Center (NLDAC) already offers limited assistance for those means-tested as unable themselves to underwrite the cost of donation. Extending assistance to eliminate all financial costs regardless of means, including access to healthcare, is now considered a mainstream view (far from the reception for a similar proposal from a small working group eight years ago: Gaston et al, AJT 6: 2548, 2006).
In 2006, I learned the importance of nuance and semantics in discourse regarding living donation: one person’s incentive is another’s removal of disincentive. Opinions both inside and outside our field are changing. Participants in two recent meetings (both held in Chicago in June and sponsored in part by AST) will soon be publishing white papers that seek to clarify the discussion regarding compensation of living donors in the US. It is obvious that a great deal can be done within NOTA to remove disincentives (as both white papers are likely to endorse). In medicine, it is usually desirable to address controversy with evidence, as might be obtained via limited demonstration projects of targeted incentives. Though these would likely require amendment of NOTA, such has already occurred twice with the Charlie Norwood and HOPE acts, both crafted in response to a changing environment and both endorsed by AST. Our task, if we are to do everything possible for our wait-listed patients and protecting all the interests of potential donors, is to make sure we get the nuances right.