Monday, December 6, 2010

Kidney sales and incentives for donors: current controversy

The American Journal of Transplantation has over the past year been full of surveys about the attitudes of various groups towards compensation of organ donors, including particularly live kidney donors. The groups surveyed have included transplant surgeons, the general public, kidney patients, and kidney donors. The surveys reveal a great deal of variance within groups, but a surprising willingness across groups to consider various kinds of compensation for donors, especially when subject to government regulation. So there's at least a suggestion that some kinds of payment to donors may one day become a "formerly repugnant transaction," i.e. it seems that its status as a repugnant transaction may be shifting.

The discussion was punctuated by a signed editorial, with a surprisingly contemptuous tone, called “Kidneys for Sale: Whose Attitudes Matter?”  It took the point of view that kidney transplantation is a business run by kidney surgeons, and that no one else's opinions should be consulted on matters of health policy related to kidney patients.

This is an especially surprising view given that kidney disease is treated very specially by Medicare, to the great benefit of kidney patients (as well as kidney surgeons). (Medicare is financed primarily by payroll taxes and general tax revenues, as well as premia paid by beneficiaries, and it presently spends about $8 billion a year on dialysis, for example; see Medpac for good Medicare background).

But the view of the editorialists that kidney transplantation is only about surgeons seems to be a fringe view (certainly not shared by the surgeons I've had an opportunity to work with on kidney exchange, although they have varied opinions on donor compensation). Subsequent letters to the AJT rebuked the editorialists, not only for their contemptuousness, but also for misrepresenting the data from the survey of transplant surgeons.

Below are the citations, with abstracts of the articles, and excerpts from the editorial and letters, since those don't have abstracts.

Stimulus for Organ Donation: A Survey of the American Society of Transplant Surgeons Membership by J. R. Rodrigue, K. Crist, J. P. Roberts, R. B. Freeman Jr., R. M. Merion and A. I. Reed, Am J Transplant 2009; 9 (September): 2172–176.
     "Federal legislation has been proposed to modify the National Organ Transplant Act in a way that would permit government-regulated strategies, including financial incentives, to be implemented and evaluated. The Council and Ethics Committee of the American Society of Transplant Surgeons conducted a brief webbased survey of itsmembers’ (n = 449, 41.6% response rate) views on acceptable or unacceptable strategies to increase organ donation. The majority of the membership supports reimbursement for funeral expenses, an income tax credit on the final return of a deceased donor and an income tax credit for registering as an organ donor as strategies for increasing deceased donation. Payment for lost wages, guaranteed health insurance and an income tax credit are strategies most strongly supported by the membership to increase living donation. For both deceased and living donation, the membership is mostly opposed to cash payments to donors, their estates or to next-of-kin. There is strong support for a government-regulated trial to evaluate the potential benefits and harms of financial incentives for both deceased and living donation. Overall, there is strong support within the ASTS membership for changes to NOTA that would permit the implementation and careful evaluation of indirect, government-regulated strategies to increase organ donation."

"How Different Conceptions of Risk Are Used in the Organ Market Debate," by A. Aronsohn, J. R. Thistlethwaite, Jr., D. L. Segev, and L. F. Ross, American Journal of Transplantation, 10, 4, 931-937, APR 2010
"The success of kidney and liver transplantation is hindered by a shortage of organs available for transplantation. Although currently illegal in nearly all parts of the world, a living 'donor' or 'vendor' kidney market has been proposed as a means to reduce or even end this shortage. Physician members of the American Society of Transplantation, the American Society of Transplant Surgeons and the American Association for the Study of Liver Disease were surveyed regarding organ markets for both living kidney and living liver transplantation. The survey queried respondents about their attitudes toward directed living donation, nondirected living donation, the potential legalization of living donor organ markets and the reasons for their support or opposition to organ markets. Partial or completed surveys were returned by 346 of 697 eligible respondents (50%). While virtually all supported or strongly supported directed living donation (98% and 95% for kidney and liver lobes, respectively), the vast majority disagreed or strongly disagreed with the legalization of living donor organ markets (80% for kidneys and 90% for liver lobes). Both those who support and those who oppose a legalized living donor organ market rate risk to the donor among the most important factors to justify their position."

Leider, Stephen and Alvin E. Roth, “Kidneys for sale: Who disapproves, and why?” American Journal of Transplantation, 10 (May), 2010, 1221-1227.
     "The shortage of transplant kidneys has spurred debate about legalizing monetary payments to donors to increase the number of available kidneys. However, buying and selling organs faces widespread disapproval.
We survey a representative sample of Americans to assess disapproval for several forms of kidney market, and to understand why individuals disapprove by identifying factors that predict disapproval, including disapproval of markets for other body parts, dislike of increased scope for markets and distrust of markets generally. Our results suggest that while the public is potentially receptive to compensating kidney donors, among those who oppose it, general disapproval toward certain kinds of transactions is at least as important as concern about specific policy details. Between 51% and 63% of respondents approve of the various potential kidney markets we investigate, and between 42% and 58% want such markets to be legal. A total of 38% of respondents disapprove of at least one market.
Respondents who distrust markets generally are not more disapproving of kidneymarkets; however we find significant correlations between kidney market disapproval and attitudes reflecting disapproval toward certain transactions—including both other body markets andmarket encroachment into traditionally nonmarket exchanges, such as food preparation."

Patient Willingness to Pay for a Kidney for Transplantation, by D. K. Herold,
American Journal of Transplantation, Volume 10, Issue 6, pages 1394–1400, June 2010
     "While kidney transplantation is the most cost-effective treatment available for end-stage renal disease (ESRD) and affords patients with the best quality of life, the current supply of kidneys does not meet the demand. A potential solution to increasing the supply is to compensate living donors for a kidney. The purpose of this study was to describe ESRD patient willingness to pay for a kidney. Using a self-administered survey, 107 patients in 31 U.S. states completed the survey. The quantitative method and descriptive survey design employed descriptive, correlational, nonparametric and multivariate statistical tests to evaluate the data. Of participants, 78.5% were willing to pay for a kidney; there were significant correlations between gender, health status, household income, preferred source of a kidney and willingness to pay. Men, patients with poor and fair health status and those with household incomes ≥$50 000 were more willing to pay. Step-wise regression analysis found price and doctor’s influence accounting for 52% of variance in willingness to pay. As price increased and doctor’s opinion mattered, willingness to pay increased. This study supports development of additional studies with
larger sample sizes and patients on kidney transplant waiting lists."

"For Love or Money? Attitudes Toward Financial Incentives Among Actual Living Kidney Donors", by M. C. Van Buren, E. K. Massey, L. Maasdam, W. C. Zuidema, M. T. Hilhorst, J. N. IJzermans and W. Weimar, American Journal of Transplantation, Volume 10, Issue 11, pages 2488–2492, November 2010
     "Due to lengthening waiting lists for kidney transplantation, a debate has emerged as to whether financial incentives should be used to stimulate living kidney donation. In recent surveys among the general public approximately 25% was in favor of financial incentives
while the majority was opposed or undecided. In the present study, we investigated the opinion of living kidney donors regarding financial incentives for living kidney donation. We asked 250 living kidney donors whether they, in retrospect, would have wanted a financial reward for their donation.We also investigated whether theywere in favor of using financial incentives in a government-controlled system to stimulate living anonymous donation. Additionally, the type of incentive deemed most appropriate was also investigated.
In general almost half (46%) of the study population were positive toward introducing financial incentives for living donors. The majority (78%) was not in favor of any kind of reward for themselves as they had donated out of love for the recipient or out of altruistic principles. Remarkably, 60% of the donorswere in favor of a financial incentive for individuals donating anonymously. A reduced premium or free health insurance was the preferred incentive."

And here is the editorial against finding out what non-surgeons think:

D. L. Segev and S. E. Gentry “Kidneys for Sale: Whose Attitudes Matter?” American Journal of Transplantation 2010; 10: 1113–1114
"...Should we devote resources to investigating the nuances of public attitudes toward these markets? Probably not, for two major reasons."
"First, nothing else is relevant until physicians support organ sales....
"Second, and more importantly from a logistical standpoint, is that it will take an act of Congress—that is the reversal of the National Organ Transplant Act (NOTA) of 1984—to make organ markets a reality. And this act will be nearly impossible to come by."

And the following two entries are letters to the editor objecting to the Segev-Gentry editorial, the first by Arthur Matas (a kidney transplant surgeon and former president of the American Society of Transplant Surgeons), the second by Sally Satel, a doctor, kidney recipient, and commentator working at the American Enterprise Institute.

A. J. Matas, Department of Surgery, University of Minnesota
"Markets or Incentives: Terminology Is Critical," American Journal of Transplantation 2010; 10: 2374
     "I am disappointed in Segev and Gentry’s Editorial (1) regarding Leider and Roth’s survey, which was recently published in The American Journal of Transplantation (2). Leider and Roth conducted a survey of public attitudes regarding markets for living and deceased donation. They found that a majority of respondents approved of either individual or government payment for either living or deceased donation (although there was considerably stronger support for government payment).
     "Segev and Gentry respond by noting that a survey of the membership of the American Society of Transplant Surgeons (ASTS) showed that only 20% were in favor of ‘cash
payments’ for donation (3). Segev and Gentry are correct. But what they did not note in their editorial,was that for deceased donation, the majority of ASTS respondents were
in favor of funeral expenses (73%), an income tax credit (65%) and about halfwere in favor of a donation to a charity selected by the donor’s family (51%) and reimbursement
of next-of-kin expenses (56%). For living donation, the majority supported payment of lost wages (76%), payment of health insurance premiums (72%) or an income tax credit
(64%) and 56% supported payment of life insurance premiums."...
     "It is a disservice to the debate and discussion to present only part of the ASTS survey results. There are other issues with Segev and Gentry’s Editorial. They suggest that doing these kinds of public opinion surveys are a waste of resources because: (a) physicians are against ‘sales’ and (b) to establish trials of ‘organ markets’ would require changing the law (1). However, using the same survey data that they quote (see above), (a) physicians are in favor of incentives (and before trials of incentives could be developed the law would need to be changed) and (b) legislators are certainly going to be more inclined to change the law if the public supports such a change. Finally, they conclude that the many recent advances in donation may solve the tremendous organ shortage problem,
making need for incentives moot. But the data says otherwise;  in spite of laparoscopic nephrectomy, use of ECDs, DCD, desensitization and paired exchange, there has been little or no increase in donation over the last few years and the wait list for a kidney transplant has continued to grow (4)."

Sally Satel, "The Physicians’ Voice Is Only One of Many," American Journal of Transplantation 2010; 10: 2558
    "...medical policy is a social activity, not a guild enterprise. The traditions and preferences of learned practitioners have a large role, to be sure, but they are not, nor
should they be, the sole determinants of clinical policies."
"As for physician opinion, Segev and Gentry relate only half of the story. True, a mere one-fifth of physician respondents to an ASTS poll endorsed cash payments to donors (1). Unmentioned, however, is the highly significant fact that 64% of respondents favored income tax credits to living donors (12% were neutral or undecided). This finding has critical policy relevance because it is regulated in-kind benefits, such as tax credits, not free market cash exchange, that have long been the basis for serious reform efforts in Congress and in state legislatures. Notably, the American Medical Association has endorsed proposals for pilot trials on three occasions between 1995 and 2008 (1995, 2003 and 2008) (3)."

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