New Kidney Allocation Policy—God Squad Resurrection…

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In 1962, Life Magazine coined the term “God Squad” to refer to medical center committees that had been set up to determine which patients would receive life-saving therapy for end stage renal disease (ESRD) and which ones wouldn’t (1). Thought, discussion, and criticism of these “God Squads” of the ’60s often pointed out that the doctors on the committees granted treatment to individuals who had lifestyles like the committee members themselves. Is it possible that the committee creating the new Kidney Allocation System (KAS) might also favor individuals who are like the middle-aged, productive, male surgeons and statisticians who developed the policy?

In the 1980s, medical ethicist Arthur Caplan, PhD, referred to “dirty little secrets” of the kidney waiting list and said “…physicians feel that people who are richer, have jobs, and are more assertive will do better as transplant recipients than people who are poor, unemployed, and passive”(2). I believe the proposed KAS is not better than the current system, and, despite the early well-meant attempts of the committee, allocation is in danger of being made both less just and less effective. I was asked to write this article in a fashion that would provoke thought and discussion of the issues concerning allocation of deceased donor kidneys as proposed by KAS.

Imagine you’re 62 years old and have retired after having had 6.2 percent and 1.45 percent of your paychecks withheld for Social Security and Medicare, respectively. Having worked since you were 18, that’s 44 years of withholding, quite a sum of money, you think. Your precocious, 5-year-old granddaughter keeps telling you that 62 really is the new 52. Despite these reassuring thoughts, you’re feeling more tired than you should at age 62 (or even 52).

According to your doctor, you have something called end stage renal disease (ESRD). The good news is that Medicare covers ESRD treatment (thanks to Social Security) despite your age. The bad news is that the best ESRD treatment, deceased donor kidney transplantation—which, on average, would double your life expectancy and improve the quality of your life—is not really available to you. It’s not because of Medicare rules. It’s because of your age—and a committee called KAS. You sure wish you could double your time with that granddaughter. Seems like your 62 may be the new 92.

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You’re 33 years old, you find out that you have kidney failure, and your doctor does not know why. Your kidneys are very small, and it could be hypertension or diabetes or maybe some pain medicines you took in the past. You don’t think you have diabetes, although another doctor once reported that your fasting blood sugar was 110 mg/dL—slightly above what he thought it should be—and he claimed you had diabetes. Although you never took insulin or pills, the diabetic label stuck in your medical records.

Now you need a deceased donor kidney transplant, which could double your life expectancy, even if you actually have diabetes. The doctor says it is much less likely you’ll get a transplant than other “nondiabetic” patients your age, thanks to a committee called KAS that you’ve never heard of before, a committee that your own doctor does not sit on. This committee developed a formula that decides who might have their life expectancy doubled and who should not have that priceless, twofold increase in their years on earth.

Organ transplantation in the United States involves a whole new alphabet of acronyms. The National Organ Transplant Act (NOTA) was enacted in 1984 to codify organ allocation (3). The United Network for Organ Sharing (UNOS), a private organization, applied for and won the government contract for these services; it was the sole applicant. UNOS has held the contract for the U.S. Organ Procurement and Transplantation Network (OPTN) since 1986 and is considered by many to be a quasi-government organization. UNOS had its roots in the Southeastern Organ Procurement Foundation and initially was a completely voluntary not-for-profit organization set up by transplant centers.

UNOS has evolved in association with the Health Resources and Services Administration (HRSA). Now, if transplant centers don’t belong to or abide by the rules of UNOS/OPTN, their entire institution, not just the transplant unit, will be ineligible to be a Medicare provider. Thus, it no longer is considered a voluntary organization. Over the years, like many quasi-governmental organizations with little or no competition, UNOS/OPTN has grown in authority and scope. Recently, for example, it has expanded its concerns about sharing deceased donor organs to work with living donor transplantation. Originally, the directors of UNOS were almost exclusively kidney transplant surgeons, but in more recent years, the network has included nephrologists and nonphysicians (donors and recipients) among its committees and board of directors. Voluntary sharing of donor organs was the original idea behind UNOS—the United Network of Organ Sharing. No one could have guessed at its founding that this sharing organization would develop into a regulatory body that, for example, now prescribes how many liver surgeons a center must have and how many procedures these surgeons must perform before their center is recognized as a liver transplant center. Obtaining the contract from HRSA is seen, even today, as a mixed blessing.

UNOS/OPTN, despite changing from a voluntary to a nonvoluntary organization, despite having no competition for its HRSA grant in the last 20-plus years, despite being dominated by transplant surgeons, and despite expanding its rules and regulations at a speed like a HRSA bureaucrat on methamphetamine, has, I think, done an excellent job. Even the Kidney Committee drafted the KAS proposal only after considerable difficult and altruistic work by its members.

But, in my view, the task of providing a fair allocation system for kidney transplantation is not one that any insider committee can accomplish. This discussion needs to be moved from UNOS and OPTN to a wider arena. The American Association for the Advancement of Retired Persons (AARP), representing individuals over 50, and the American Diabetes Association (ADA), for example, might find the two anecdotal cases above of interest.

The UNOS/OPTN webpage includes a number of documents and a PowerPoint slide show arguing the affirmative case for KAS. The KAS proposal remains controversial and currently has strong advocates and opponents.

With the KAS proposal enacted, UNOS could be seen by some as a kind of national “God Squad” of this decade. With limited deceased donor organs and a burgeoning number of patients on the wait list, deceased donor kidney allocation is a zero sum game. The KAS proposal attempted to adjust this zero sum game with a concept called “net benefit.” It was a purely utilitarian proposal in which the major losers were groups that do not, historically, do as well with allograft survival, on average, as other groups. African Americans (4), older recipients (5), people with diabetes (6), and possibly women (7,8) fall into the groups that might not fare well in a “net benefit” unmitigated utilitarian system.

Pure utilitarian philosophy—“the greatest good for the greatest number”—is seductive. This philosophical position dates to the early Hedonism philosophy of Epicurus (“greatest pleasure for the greatest number,” 200 BCE). It peaked as a school of thought in 18th-century England. Outcome is the most important aspect of this philosophy that also tends to hold that “the end justifies the means.”

The usual and unavoidable clash of utilitarianism systems is with the concept of justice. Concepts of “net benefit” led to conflict, and those who were (at first) attracted to the “greatest good” idea began to reconsider their position. They not only changed the name to life years from transplant (LYFT), but they also added some new provisions to the calculation in an effort to be both utilitarian and just (an impossible task).

Utilitarianism is an all-or-none proposition. Once one compromises pure utility to try to make things just, the outcome becomes more political than utilitarian. This is what has happened to the KAS proposal over the last four or five years, and the losing groups appear to be older patients—ageism is the subtlest of the isms (9)—and patients with diabetes. Neither the AARP nor the ADA were represented at the meetings discussing KAS.

Currently, allocation criteria are straightforward. Those under the age of 18 and those waiting the longest on the kidney wait list get priority. These rules are easily understood by patients. The formulas currently put forward by KAS are complex and not likely to be understood by the people most affected. The unintended consequences of the complex proposal, the ability to “game the system” by physicians for their patients, and the overall effects on the transplantation of solid organs in the United States have neither been tested prospectively, nor are they likely known. Those who will be hurt by the new system have not been clearly identified or notified. As of this writing, the KAS proposal is out for public comment before being put into effect.

Those who advocate the KAS proposal and were instrumental in writing it often come from the arena of statistical database analysis. They work with computer models and large group averages rather than dealing with actual individual patients. Under criticism, their usual response is threefold:

  1. The government made us do it. This reminds me of “the devil made me do it” excuse. UNOS/OPTN and HRSA have become so tied that sometimes it is impossible to tell who is the cart and who is the horse. It seems unlikely that these government agencies that ultimately answer to the public would punish older individuals (voters).
  2. Don’t criticize because the proposal isn’t even finished yet. Waiting for so-called “final rules” and completed regulation before offering criticism can result in a lot of damage before problems can be corrected.
  3. Sure, there are problems, but KAS is better than the current system. If you don’t like KAS, come up with a better system. Well I, for one, doubt that the proposal is better than the current system and may be—probably is—much worse. Unlike the current system, KAS has not been tested. I must admit that coming up with any system, even a “better system,” is difficult. As long as there are far more patients on the wait list for kidney transplants than there are deceased donor kidneys available, all systems of allocation will appear imperfect at least, or even greatly flawed.

Allocation policy should be transparent, currently a popular concept in Washington, DC. If the policy denies deceased donor kidneys to anyone older than 55 years, they should clearly state it. If the policy gives special advantages to certain minority groups or women or people with diabetes, then say so. Don’t use some adjustment factor like “dialysis time” (DT in the current formula) that is a nontransparent parameter with implications unclear to the general public. Indeed, the complexity of the current formula takes us away from the original infatuation with utility toward the animosity of political policy. Matas even suggested that we stop using the term “allocation” and replace it with the more correct and less misleading term “rationing” (10).

I was asked to write this article in a fashion that would provoke thought and discussion of the issues concerning allocation of deceased donor kidneys as proposed by KAS. I hope I have succeeded, and I hope readers of ASN Kidney News will continue the discussion online.

References

1. 

The God Squad. Life Magazine. November 9, 1962.

2. 

Blakeskee S: Studies and unequal access to kidney transplants. New York Times. January 24, 1989.

3. 

Schaeffer MJ, Alexander DC: U.S. system for organ procurement and transplantation. Am J Hosp Pharm 1992; 49(7):1733–40.

4. 

Eckhoff DE, Young CJ, Gasgon RS, Fineman SW, Deierhoi MH, Foushee MT, et al.: Racial disparities in renal allograft survival: a public health issue? J Am Coll Surg 2007; 204(3): 894–902.

5. 

Kasiske BL, Snyder J. Matching older kidneys with older patients does not improve allograft survival. J Am Soc Nephrol 2002; 13(4): 1067–72.

6. 

Cosio FG, Hickson LJ, Griffin MD, Stegall MD, Kudva Y: Patient survival and cardiovascular risk after kidney transplantation: the challenge of diabetes. Am J Transpl 2008; 8(3): 593–9.

7. 

Moosa MR: Impact of age, gender, and race on patient and graft survival following renal transplantation—developing country experience. S Afr Med J 2003; 93(9): 689–95.

8. 

Segev DL, Kucirka LM, Oberai PC, Parekh RS, Boulware LE, Powe NR, et al.: Age and comorbidities are effect modifiers of gender disparities in renal transplantation. J Am Soc Nephrol Jan 7 2009.

9. 

Palmore EB: Ageism in Canada and the United States. J Cross Cult Gerontol 2004; 19: 41–46.

10. 

Matas AJ: Allocation or rationing—word choice is crucial. Am J Transpl 2009; 9(1): 9–10.