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Incentives for organ donation in the United States: feasible alternative or forthcoming apocalypse?

Hippen, Benjamina; Matas, Arthurb,*

Current Opinion in Organ Transplantation: April 2009 - Volume 14 - Issue 2 - p 140–146
doi: 10.1097/MOT.0b013e3283295e0d
Organ preservation and procurement: Edited By Eytan Mor
Free

Purpose of review Several factors have generated interest in proposals to offer incentives in exchange for kidneys from living donors, including the growing shortage of available organs, the apparent asymptote of traditional means of organ procurement, and the intimate link between the inadequacies of organ procurement policies in developed countries with the flourishing of underground organ trafficking in developing countries.

Recent findings Herein, we review the scope and dimensions of the growing shortage of organs in the United States, with attention to how each of the proposed solutions to same has proven insufficient. With special attention to the concerns leveled by Gabriel Danovitch in his ‘Open Letter,’ we conclude that each of his concerns are unfounded, and offer a prospectus on how a trial of such systems might be pursued in the United States.

Summary The failure of current approaches to organ procurement in the United States and other developed countries has led to unnecessary suffering and death, with morally unacceptable consequences for developing countries. For these reasons, a structured trial of incentives for organ procurement in the United States is a moral imperative.

aMetrolina Nephrology Associates, P.A., Charlotte, North Carolina, USA

bRenal Transplant Program, University of Minnesota Medical School, Minneapolis, Minnesota, USA

* Professor of Surgery and Director, Renal Transplant Program, University of Minnesota Medical School.

Correspondence to Benjamin Hippen, Metrolina Nephrology Associates, PA 2711 Randolph Road, Building 400, Charlotte, North Carolina, USA Tel: +1 704 348 2992; e-mail: benjaminhippen@gmail.com

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Introduction

In 2008, there is no shortage of sources to which one might turn for a comprehensive defense of a regulated system of incentives for organ donation [1–7]. Although there are differences of nuance and detail between each author, each recognizes that the existing and growing disparity between the availability of organs for transplantation and the number of recipients who might benefit from transplantation is untenable. It is worth outlining in detail the human, moral and economic costs of our wholly inadequate system of organ donation and procurement, as well as the unintended consequences of this failed policy, here and abroad. Following that sad litany, we offer the outlines of a defense of incentives for organ donation (since detailed proposals are widely available elsewhere); we pay particular attention to the generic criticisms by Danovitch of proposals such as ours. We refrain from comments on the Organ Donor Clarification and Anti-Trafficking Act to be introduced by Senator Specter, as it has not yet been introduced in the United States Senate for consideration. Commenting on the nuances of specific language in the Act, which has not yet been, finalized for legislative consideration strikes us as premature, even if legislative consideration of proposals for incentives is long overdue.

Our criticism of current policy in no way diminishes the wonderful ‘gift of life’ given by tens of thousands of previous donors, living and deceased. Similarly, we do not doubt the sincerity or commitment of the many individuals, communities, or organizations that are trying innovative approaches to help alleviate the organ shortage. But, ultimately, we feel these efforts are insufficient. The ‘altruism/gift’ model for organ donation has been partially successful and has saved thousands of lives. But, reliance on this model alone is leading to a worsening organ shortage, an increasing number of deaths on the waiting list, and in our view, exacerbates rather than attenuates the practice of illegal, underground organ trafficking in developing countries.

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The problem

There are currently 400 000 patients with end-stage renal disease (ESRD) in the USA [8], of which only 20% are listed for transplantation. Only 4% of all patients with ESRD are transplanted annually. Despite a list of just over 77 000 candidates, a recent study suggests that as many as 130 000 additional dialysis dependent who would likely qualify as candidates on demographic grounds have never been referred for evaluation [9]. It is estimated that the prevalence of ESRD will increase to 520 000 by 2010 [10] and to exceed 700 000 by 2015 [11], and by 2010, the waiting list for kidneys is expected to exceed 100 000 [10]. Although the efforts of the Organ Donor Collaborative have increased the number of organs, the increases have been modest compared with the demand. Moreover, much of the recent increase is accounted for by organs from extended-criteria donors, which offer significantly shorter graft survivals [12], whereas organ procurement from living donors has been stagnant since 2005 [13]. Organs from donors after cardiac death (DCD) [14] (645 total donors in 2006, or 8% of all deceased donors), and paired-exchange donation [15] have also modestly contributed to the existing supply, though DCD has been accompanied by nontrivial public controversy [16,17]. Overall, the cost of this shortfall in supply is paid in the human coin of longer waiting times and more death on the waiting list, which reached 8% of all waitlisted patients in 2005 [18].

The economic costs of our collective ‘head in the sand’ policies should not go unmentioned. In 2006, the Federal Government spent $22.7 billion, or 6.4% of the Medicare budget) on the care of 506 256 people with kidney failure (0.6% of all Medicare beneficiaries) in the USA [8]. Of that total, $1.8 billion was spent on 151 502 patients who received or currently have a functioning kidney transplant, including the costs of organ procurement, testing, allocation, transplant surgery and aftercare [8]. This figure is approximately the same amount in federal outlays for erythropoietin stimulating agents (ESAs), a single medication given to dialysis-dependent patients to increase red blood cell production.

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‘Reducing demand’: rhetoric unmatched by realities

To date, efforts to ‘reduce the demand’ for kidneys have proven more platitudinous than practical. For example, Francis Delmonico attributes the epidemic of ESRD to a failure of primary care physicians to control the root causes of kidney disease, arguing that prevention will reduce both kidney failure and thus the demand for transplantation. However, most patients with chronic kidney disease (CKD) die from cardiovascular complications prior to reaching kidney failure, suggesting that the success of primary and secondary interventions has permitted patients with CKD 3 and CKD 4 to live long enough for their kidneys to fail, thus raising demand for dialysis and transplantation [19]. This trend, along with improvements in immunosuppression, has increased the number of patients who might benefit from transplantation compared with dialysis. Such are the wages of success [20].

Another recently discredited approach was to reduce demand by fiat, by redefining downward what ought to count as ‘waiting for a transplant.’ An apocryphal example of the former was recently captured in a Washington Post headline, ‘A Third of Patients On Transplant List Are Not Eligible,’ [21] referring to patients inactive on the waiting list, with the clear imputation that the transplant community was dishonestly inflating demand by ‘listing’ people for transplantation who were not (and presumably never would be) candidates. Inconveniently for those promulgating this opinion, the Scientific Registry of Transplant Recipients (SRTR) reported that 78% of those listed as inactive either became active or received a kidney from a living donor after 1 year [22], p 948. As the current kidney allocation system privileges time on the waiting list, it is often in a patient's interest to be listed inactive in order to accrue waiting time, or so as not to lose waiting time during a period of temporary illness. Far from solutions, these calls for more ‘prevention’ or for reducing demand by fiat are simply distractions from the real challenges at hand.

In summary, here is where the existing policies in the USA have led: increasing time on the waiting list, to the point where waiting time frequently exceeds the median lifespan of candidates, a predictable increase in the number of viable transplant candidates dying on the waiting list, a disproportionate proportion of patients with ESRD consigned to dialysis rather than transplantation, and all at a stratospheric cost to taxpayers. As we consider Danovitch's argument that endeavors to introduce incentives for organ procurement is ‘fraught with hazard,’ the outcomes of the current system compel us to ask: ‘Compared to what?’

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Unintended consequences of the current system: the international scene

Danovitch, like most critics of incentives for organs, and in parallel with the Declaration of Istanbul [23], conflates the manifest abuses of organ trafficking with proposals for regulated incentives in developed countries. By insisting that the harms of illegal, underground organ trafficking are an inevitable consequence of any proposal for incentives, Danovitch and his fellow critics can skip the more difficult work of a nuanced examination how illegal organ trafficking and legal, more traditional versions of organ procurement intersect with highly localized cultural and religious factors. Attention to these features demonstrates that the relationships between organ trafficking and organ donation in countries such as Hong Kong, [24•] Iran, [25] Australia, [26] or Israel, [27,28] are not amenable to generalizations, which can be consolidated into a talking point. To illustrate this heterogeneity, and how much local details matter, we briefly discuss the examples of Iran, Australia and Israel below.

First, we are categorically opposed to the practice of illegal, underground international organ trafficking. We believe the available evidence unambiguously demonstrates that the harms of organ trafficking are routinely inflicted on donors and recipients alike [29–39], and that organ trafficking represents a profound moral blight on reputation and legacy of organ transplantation [40,41]. Indeed, it is our conviction that the intimate link between the failure of organ procurement policies in developed countries and the flourishing of organ trafficking in developing countries obligates us to find morally defensible and practically feasible means of addressing the root cause of the problem.

Second, it is worth noting an area of consensus regarding organ trafficking: the flow of organs in illegal, underground organ trafficking is typically from disproportionally impoverished populations, and toward recipients of means, often from developed countries. However variably such laws are enforced, cross-border organ trafficking is illegal in nearly every country in the world (see Appendix of [1] for a comprehensive list of relevant international statutes). In this sense, it is both disingenuous and factually untrue for Danovitch to argue that ‘There is no country that permits donation for material gain, openly or tacitly, that has parallel robust practices of unpaid living donation, or even deceased donation.’ There is no country in the world except for Iran, which legally permits material gain in exchange for donation, and Iran specifically prohibits noncitizens from purchasing an organ from an Iranian national [25].

Third, of note, Danovitch warns the reader that a regulated system of incentives might result in ‘blowback,’ (i.e., the loss of legislative ground in opposition to organ trafficking in developing countries). It is worth emphasizing that the abuses of organ trafficking have flourished in a global milieu in which trafficking is already illegal. It is the developed world, which is unmistakably morally complicit in organ trafficking by virtue of surreptitiously providing the economic support for organ trafficking and by failing to address inadequate organ procurement policies, which have engendered growing waiting lists and legions of desperate recipients.

In regard to specific countries which have been targeted by opponents of incentives, Iran's system, which has been in place since 1988, records a small if stable rate of organ procurement from uncompensated, biologically related living donors. Deceased donation did not comprise a substantial component of organs procured in Iran until 2000, though this absence had considerably more to do with the absence of any legislative recognition of death by whole-brain criteria. When, in 2000, such legislative approval was provided, rates of organ procurement from uncompensated deceased donors increased 10-fold from 2000–2006, and now comprises 15% of all organ procurement in Iran, [25] despite a parallel, flourishing organ market.

Ironically, the challenges facing deceased donation in Australia may offer better insight into similar problems faced by developing countries [26]. Chris Thomas, Chief Executive Officer of Transplant Australia, has attributed low rates of organ procurement from deceased donors in his country [42] to the fact that successful deceased organ donation programs are quite expensive [43]. Although Mr. Thomas specifically focused on the costs of the intensive care management of deceased donors after the declaration of death, a successful program also involves a employing a plethora of readily available transplant coordinators, surgical assistants, organ procurement and transportation specialists, assiduous clerical management of an up-to-date and accurate waiting list, maintaining round-the-clock availability and rapid turnaround of serologic and histocompatibility laboratory facilities, as well as ongoing education of critical care specialists (in countries where critical care resources are already scarce) in the correct identification, solicitation and subsequent management of potential organ donors. This situation is quite a lot to expect from countries in which the cost of dialysis, and often transplantation, is simply out of reach for most of the population [44]. Many of the countries in which organ trafficking flourishes do not have deceased donor programs simply because it is too expensive.

Danovitch also highlights recent legislative goings-on in Israel. However, until quite recently, it was legal for Israeli citizens to travel abroad to purchase kidneys, and the Israeli government was well aware of the practice [28]. In fact, from 1994 to 2006, the Israeli Ministry of Health explicitly permitted private insurers to reimburse the costs to its citizens of engaging in organ trafficking [27]. Although recent legislation passed by the Knesset to reduce disincentives for organ donation in Israel is laudatory, it is not at all clear that organ procurement rates in Israel have been low because of financial barriers to donating. After all, there are no financial barriers for Israeli citizens to consent to be organ donors after death, yet conversion rates in Israel remain at 40%, among the lowest in developed countries [27]. Absent a deeper understanding of the cultural barriers to donation in Israel, there is little reason to suppose that legal obstacles against organ trafficking will result either a change in behavior of desperate Israeli recipients, or a replication of the pattern in countries such as the USA, namely, longer waiting times for organs and increased death on the waiting list. A recent report from Etyan Mor supports the latter possibility; Mor notes that between 30 and 40% of all Israelis who underwent kidney transplantation did so abroad, a fact he believes explains the current low rate of mortality on the waiting list in Israel (3% per year) [27].

What Danovitch and other critics fail to understand is that it is the shortage of organs, engendering desperate recipients of means, which provides the core economic support for organ trafficking in developing countries. It is wealthy recipients (and in Israel, until 2006, their insurance companies) in the developed world who pay the high opportunity costs organ brokers require to stay in business. Meaningfully undermining this source of economic support for organ trafficking will not obliterate the organ trade, but it will make it considerably more difficult for organ brokers to turn a profit, and to financially justify the considerable risks of flouting the laws of their countries. In sum, those readers who believe they have a moral obligation to undermine and turn back the practice of illegal, underground organ trafficking would do well to address the root cause: the growing disparity between the demand for and supply of organs in their own countries.

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Apocalyptic concerns and pedestrian realities

In 1986, a colloquy on the expansion of living-unrelated donors in renal transplantation took place in the pages of the New England Journal of Medicine. At the time, Danovich expressed suspicion about the true motives of living-unrelated donors. Similar to his current concerns about the introduction of incentives for donation, Danovitch worried that the introduction of living-unrelated donation would have apocalyptic consequences for organ donation in general:

Dr Levey and his colleagues are proposing … that after various safeguards are observed, we permit and even encourage kidney donation from a stranger to an unknown recipient. I find their proposal objectionable and unacceptable. Such donations would not be an act of love, and it is unclear to me what the prospective donor's motivation would be, if not financial. Human ingenuity knows no bounds, and in our fortunately free society it would be exceptionally difficult to be convinced of the purity of the motives of a ‘living stranger donor.’

Danovitch went on to conclude, in an equally familiar tones, that

‘The advocacy of kidney donation by unrelated persons oversteps the mark. It sets a dangerous example for countries other than our own, where ethical and legal safeguards may not be quite so well developed, and it opens a Pandora's Box whose contents could endanger the process that we all value so highly [45].’

As living unrelated donation enters its third decade in the USA, the ‘purity’ of the motives of ‘living stranger donors’ is not generally questioned. However, the parallels between Danovitch's criticisms of living unrelated donation then and his contemporary criticism of proposals for incentives now remain worthy of discussion.

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Exploitation of impoverished donors

As John Curtis has recently lamented, poor persons in the USA are more likely to be accepted as donors than as recipients [46]. Still, most free societies in developed countries do not conceive of low socioeconomic status as disqualifying an individual from enjoying freedoms of self-determination. For example, disenfranchising the poor on the grounds that they may fail to vote for political candidates who pledge to serve their economic self-interests is a morally perverse view in societies which value liberty and democracy. In the USA and around the world, simply being poor has infrequently been considered an absolute disqualification for living donation.

Though screening criteria do vary across different transplant centers in the USA [47], we have yet to see evidence of increased rates of kidney disease in today's donors [48]. It is at least plausible that this is due to the success of existing methods of screening donors. As it is now well appreciated that low socioeconomic status is an independent risk factor for the development of kidney disease over time [49–51], a system of incentives that included lifelong, comprehensive health coverage would finally provide the needed data to inform a long-term donor registry, so that the risks (if any) of kidney donation could be ascertained in a methodologically sound fashion. Such a registry could comprehensively address concerns raised about additional risks to specific cohorts of donors [52], and serve as an evidence-rich basis for assessment and if warranted, intervention. Furthermore, incentives need not be limited to (nor need incentives include) cash payments. There is a plethora of ways to structure incentives to be considerably less fungible than cash payments (such as nontransferable lifelong health insurance, fixed deposits in a retirement, college-savings or health-savings account which can only be accessed for certain purposes or after a given timeframe) [7,53], which can concomitantly avoid targeting especially vulnerable populations, or routinely result in undue inducements.

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Adverse effects of incentives on deceased donation trends

Danovitch's concern that a system of incentives could result in a reduction in deceased donation trends is not supported by the evidence. Elsewhere, we have summarized the trends in public surveys on the subject of incentives for organs going back to the early 1990s, [54•] but two recent surveys illustrate the point. Bryce et al. [55] showed that for the majority of families already prepared to consent to deceased donation on behalf of a loved one, the offer of an incentive made little difference (71–76%, depending on the incentive) or yielded a net increase in commitment to donation (by 9–23%, depending on the incentive) [55]. Even the article that Danovitch cites in favor of his position [56] does not support his point. Both papers reported that the number of people who would be more likely to donate their organs in response to the offer of incentive exceeded the number who reported they would be ‘less likely’ to donate. Furthermore, ‘less likely’ to donate is not identical to ‘would not donate’. It may well be the case that incentives would have little impact on rates of deceased donation, but that is quite another matter.

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Concerns regarding honest disclosures and infection risks

We are skeptical of Danovitch's argument that donor candidates will be more likely to successfully conceal comorbidities, which pose barriers to donation. First, as the reported results of altruistic nondirected (or ‘Good Samaritan’) living donation demonstrate, there is no clear relationship between the ‘purity of motive’ of a potential donor and their willingness to disclose habits or health problems which might cause social embarrassment. Among a cohort of Good Samaritan donor candidates who passed an initial telephone screen at the University of Minnesota, the medical evaluation identified cases of uncontrolled hypertension, metastatic cancer, intractable heart disease and HIV infection [57]. Gilbert et al. [58] reporting on their experience in Washington, D.C. uncovered seven patients with active substance abuse problems. The tragedy of HIV transmission from the ‘altruistic’ blood supply in France in the 1980s attaches a body count to the mistaken assumption that the purity of donor motives directly correlates with the medical safety of the donation. As Douglas Starr [59], the chronicler of this tragedy, put it, ‘Safety is a matter of practice, not ideology.’ In an era where nucleic acid testing (NAT) is available for most transmissible diseases of interest to transplant professionals, the leisure of time for gathering pertinent information and the opportunity for redundant testing afforded by a focus on living donors but less feasible under the pressures of minimizing cold ischemia time in deceased donors, should not be underestimated. Paraphrasing Starr, we would reiterate that safety is a matter of practice, not assuring purity of motive, and this fact remains true whether organs are procured through gift, exchange, incentive or sale.

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Prolegomena to any system of incentives for organs

Danovitch has wondered aloud what it is that proponents of incentives seek to accomplish: should our goal be to make the lives of donors easier, or is to persuade people who have not already done so to become donors? We think this is a false dichotomy. We favor removing disincentives to living donation [7], but do not understand this as morally different from offering incentives for donation, since the removal of a material disincentive is itself an incentive. Just as every person suddenly faced with the prospect of a loved one consigned to dialysis has not yet ‘made the decision’ to become a donor, and thereby requires ‘persuasion,’ we are less troubled than Danovitch by expanding the means of persuasion. We are troubled by Danovitch's confusion of persuasion with coercion, (‘…material gain is designed to be coercive since it persuades those who would not otherwise donate, to donate.’) as for most people with an ounce of empathy, the agony of witnessing a loved one on dialysis is arguably just as ‘persuasive/coercive’ as any material incentive. But, the discussion of incentives for organ procurement is besotted by these sorts of confusions.

The apocalypse Danovitch predicted with the introduction of living-unrelated donation in the 1980s never materialized. In fact, living unrelated donation has become the fastest growing category of living donor, comprising 35.9% of all living donors in the USA in 2006, [13]. We have offered our reasons to believe it is not forthcoming if a system of incentives for organ donation is introduced, subject to properly structured regulation, oversight and prospective study. We remain agnostic on the subject of what specific forms incentives should take, primarily because we are uncertain what kinds of incentives will or will not successfully increase the number of available organs. Accordingly, we support pilot trials on the state level to determine what does and does not work. But, any system of incentives should be bound by well defined moral strictures. One of us has discussed how such trials might be structured [60•], and the other has discussed in detail a set of moral requirements which should govern any such trial, [2] which include: plausible assurances of well tolerated practice in dealing with donors and recipients, transparency as regards the methods, means of disbursement and prospective study of unintended consequences of a system of incentives, assurances that no party (donor, recipient, transplant professional or institution) is required to participate in offering nor accept a given incentive, and that any system be subject to meaningful legal and regulatory oversight. Whether pilot trials of incentives will meaningfully increase the number of organs available for transplantation is not a foregone conclusion, but absent legislative permission to at least make the attempt, these discussions will remain consigned to the hypothetical. Given the trends we have outlined here, we are convinced that we owe our patients rather more than that.

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Conclusion

Current solutions to the growing shortage of organs have proven insufficient to meet the demand, with morally unacceptable consequences for both developed and developing countries. Accordingly, a structured trial of incentives for organs in the United States is a moral imperative.

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References and recommended reading

Papers of particular interest, published within the annual period of review, have been highlighted as:

• of special interest

•• of outstanding interest

Additional references related to this topic can also be found in the Current World Literature section in this issue (p. 212).

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60• Matas AJ. Design of a regulated system of compensation for living kidney donors. Clin Transplant 2008; 22:378–384. This paper describes a proposal for how a trial of regulated compensation for living kidney donors might be structured.
Keywords:

ethics; incentives for organs; organ procurement; organ supply; public policy

© 2009 Lippincott Williams & Wilkins, Inc.