Friday, April 3, 2015

There's no consensus on incentives for kidney donation, but maybe there is on removing disincentives

The discussion of whether there should be incentives for organ (particularly kidney) donation remains heated. But there seems to be a growing consensus that removing financial disincentives is important, ethical, and do-able. Here's a paper that I presume will be published jointly with the one in my previous post.

Living and Deceased Organ Donation Should Be Financially Neutral Acts
F. L. Delmonico, D. Martin, B. Domínguez-Gil, E. Muller, V. Jha, A. Levin, G. M. Danovitch andA. M. Capron
Article first published online: 31 MAR 2015
DOI: 10.1111/ajt.13232

"Introduction: The supply of organs—particularly kidneys—donated by living and deceased donors falls short of the number of patients added annually to transplant waiting lists in the United States. To remedy this problem, a number of prominent physicians, ethicists, economists and others have mounted a campaign to suspend the prohibitions in the National Organ Transplant Act of 1984  (NOTA) on the buying and selling of organs. The argument that providing financial benefits would incentivize enough people to part with a kidney (or a portion of a liver) to clear the waiting lists is flawed. This commentary marshals arguments against the claim that the shortage of donor organs would best be overcome by providing financial incentives for donation. We can increase the number of organs available for transplantation by removing all financial disincentives that deter unpaid living or deceased kidney donation. These disincentives include a range of burdens, such as the costs of travel and lodging for medical evaluation and surgery, lost wages, and the expense of dependent care during the period of organ removal and recuperation. Organ donation should remain an act that is financially neutral for donors, neither imposing financial burdens nor enriching them monetarily.
Pilot Experiments of Financial Incentives Are Fundamentally Wrong
"Proponents of financial incentives claim to be merely seeking pilot programs to test their proposals [2, 4]. However, an experiment that abandons a moral principle—in this case, the principle that the human body as such should not be treated as an object of commerce—cannot preserve that principle. There is no reason to perform the experiment unless the result can affect subsequent decisions; thus, conducting an experiment with organ payments only makes sense if policymakers are willing to suspend the prohibition on paying for organs as a permanent matter.

"Suspending the prohibition on organ sales for a certain period so a trial can be conducted would make reinstatement of the prohibition difficult to accomplish. Assuming that any trial would need to be conducted for a number of years to provide reliable information, the basic attitude of the population toward donation would be reshaped during the trial period towards an expectation of financial rewards and hence commercialized “donation.” If as a consequence, paying donors crowds out altruistic donation [10], such effects would likely persist after the pilot trial [11]. Moreover, if the benefits offered do not produce enough organs, the proponents are unlikely to abandon their efforts but will rather lobby to increase the value of the incentive and try again. Taking on the risks involved in such experiments seems difficult to defend, since the donation rates in countries that have prohibited payment exceed those in countries where payment is legal or tolerated. The latest confirmation of the deleterious effect of payment comes from the marked rise in living related and deceased donation in Israel following the enactment in 2008 of a law ending the practice of paying for Israelis to go to countries where they could get transplants with purchased kidneys [12].

"If pilot experiments of payments to organ donors are conducted in the United States, it would foster the resumption of programs of financial “gratuities” in the Philippines, India, Pakistan and Egypt where “the intersection of a high poverty level (which translates to a large number of individuals susceptible to exploitation) and a high corruption index (which translates to a high likelihood that exploitation of the vulnerable would occur)” [13].

"Finally, the advocates have never explained the details of such experiments—their length, the jurisdictions that would be involved, the comparator (historical data vs. an active “control” group in the same or another jurisdiction that would still be subject to existing law), or the metrics by which the results would be evaluated.

Removal of Disincentives to Donation Should Be a Priority
"The energies directed to the debate about financial incentives would be better utilized in finding ways to remove barriers to organ donation, in particular financial disincentives. For example, it has been estimated that living donors in the United States may incur on average $6000 or more in costs for travel expenses and lost wages [14]. During the recent recession, the rate of living kidney donations decreased in the United States because some potential donors could not afford to bear such expenses [15] and were either unaware of, or did not meet the requirements for, programs that (due to limited funding) cover some of but not all of donors' financial costs and losses [14].

"The removal of financial disincentives is not only ethically preferable but is also recognized as legitimate by the WHO Guiding Principles [16], other international standards [17, 18] and the laws in many countries [19], which differentiate between paying money for an organ as such and reimbursing donors for the expenses and financial losses they bear as a consequence of their gift. The costs of the potential donor's care from predonation screening to postoperative recovery, lost wages and the costs of care for those dependent upon the donor should be borne by whichever entity is paying for the transplant procedure (private insurance, Medicare, Medicaid, etc.). The payments may be made directly from that entity or through the transplant program but in no case should they come directly from the organ recipient. Financial provision should also be made for the maintenance of long-term follow up and treatment of any conditions related to the nephrectomy or partial hepatectomy, including any costs not covered by the donor's medical insurance. The aim should be to provide coverage to ensure the donor does not suffer an economic loss from medical complications.

"The Live Donor Community of Practice (LDCOP) of the American Society of Transplantation (AST) has recognized the need to identify effective strategies to improve access to LDKT/LKD and improve LKD education and evaluation processes. The LDCOP has suggested that “Expansion of the National Living Donor Assistance Center (NLDAC) is likely to have the most immediate and substantial impact on attenuating financial disparities in LKD” [20].

"Thus, if a donor's medical insurance does not provide complete coverage of costs related to the donation procedure, the additional insurance could be administered by the existing NLDAC and provided by the entity that is paying for the transplant procedure [21]. This can be done without creating a financial incentive of the sort that would arise were donors given general medical insurance that they would otherwise lack. We recognize that NLDAC does not currently provide for this donor insurance; so we have requested that a Task Force be convened by HHS Secretary Burwell to develop pilot programs for removing these financial obstacles to organ donation [22]. Complications related to the donor nephrectomy or partial hepatectomy are not difficult to identify. They include for example perioperative infections (wound, urinary tract, or pneumonia), an extremity deep vein thrombosis, depression in the weeks following the donation and conditions of later onset which treating physicians may attribute to the donor surgery, such as an intestinal obstruction. The LDCOP is reportedly underway with drafting codes of organ donor complications (such as ICD codes used by CMS).

"Donors should also be provided with life insurance to cover death as a result of being a living donor. The death should be attributable/associated with the donor procedure; and would be a readily recognizable complication of bleeding, pulmonary embolism, myocardial infarction, or sepsis (as has occurred following living liver donation).

"Discrimination against donors seeking to purchase their own health and life insurance has been reported [23] and must be outlawed.

"Making available reimbursement for the actual costs or losses incurred, regardless of donors' financial resources, would not enrich them but merely make donating a kidney a financially neutral act. Similarly, the families of deceased organ donors should not have to pay any expenses generated by posthumous donation, such as costs related to the evaluation of potential donor and organ suitability, or prolongation of the donor's time in an ICU to enable postmortem donation. Since covering expenses leaves living donors and the families of deceased donors in neither a better nor a worse financial situation than they would have been had they not taken part in the process of donating organs, there would be no need to modify NOTA's prohibition on paying for organs. When combined with the removal of other systemic barriers to donation and adoption of best practices in living donation, as recently recommended by the LDCOP [20], eliminating financial disincentives should produce a substantial and sustainable increase in the rate of kidney donation as experienced in Israel, but is also being implemented in Australia, Canada, and the Netherlands [12]."

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