March was National Kidney Month. But for most of the roughly 121,000 people waiting for a transplant (of any kind) there was little to celebrate. Last year, under one-quarter of them received a transplant. This means that many people are languishing on dialysis, a physically and, often, emotionally draining process that cleanses the blood of toxins. In large cities, it can take over five years for a candidate's name to crawl up the list.*
It's a familiar story by now: organ transplantation, the victim of its own medical and surgical success. Advances in immune-suppression ensured far greater success for the recipient. And, for the donor: surgical removal of kidney via laparoscope, which meant shorter recovery time. As a result, there are more people who can benefit from transplantation than there are organs.
And it was ever thus. When the United Network for Organ Sharing began keeping records in 1987, there was a gap between supply of organs and demand. With time, that gap has become a chasm.
The current system is a qualified failure. For the past decade, transplant operations for all organs have hovered between 27,000 and 29,000 annually, and, in 2014, was the lowest it's been in 11 years.The European model of "presumed consent," wherein a person's organs are taken posthumously unless an individual has specifically forbidden their retrieval, is not a potent solution as less than one percent of deceased individuals are medically eligible to donate.
Hence, there is a desperate organ shortage in the United States. The situation in other countries, especially poorer countries without good access to dialysis — a death sentence without immediate transplant — is even worse. As a result, the overseas black market is burgeoning. The World Health Organization estimates that 10 percent of all transplants are performed under shadowy, illicit conditions where the risks are high: Corrupt brokers deceive impoverished and illiterate donors about the nature of surgery, cheat them out of payment, and ignore their post-surgical needs. For the recipient, organ quality can be poor and post-operative management dicey. (The exception appears to be Iran, where organ sales are monitored by the government. There, potential donors exceed the number of needy patients.)
In light of the dearth of organs in this country, it's surprising there aren't more people like Levy Itzhak Rosenbaum. In the fall of 2011, the 63-year-old Israeli national, who made his home in Brooklyn, was the first person convicted in federal court of profiting from the illegal sale of human organs and served more than two years on three counts of organ trafficking.
Between 2006 and 2009, Rosenbaum arranged transplants for three New Jersey patients with renal failure. The donors, poor Israelis, paid as little as $10,000, were flown to the U.S. for the operations. The surgeries took place at American hospitals where doctors were unaware that each patient had paid Rosenbaum $160,000. Rosenbaum was released just before Christmas from the federal correctional facility at New Jersey's Fort Dix.
Rosenbaum's crime was a violation of the National Organ Transplant Act, which forbids the exchange of "valuable consideration" — anything of material value — between a donor and a recipient. Rosenbaum faced 20 years or deportation but received only 36 months, perhaps reflecting prosecutorial ambivalence about the harmfulness of his crime. "Both participants were willing," his lawyer, Ed Shulman, said. "One could contend that letting somebody die is also immoral."
It is easy to condemn the black market and the patients who patronize it. But you can't fault people for trying to save their own lives. You can, however, fault the system for failing to change its guiding philosophy, namely, its attachment to the well-meaning but ultimately destructive notion that altruism is the only legitimate motive for giving an organ.
As a kidney recipient myself, I am a walking billboard for the glory of selfless giving. My donor, Virginia, did not even know I was sick until a mutual friend casually informed her. Virginia was a professional acquaintance, not a close friend (though that has certainly changed) and she did not have to do a thing with this information about me. Yet she emailed within days: Did I really need a kidney? In the subject line, she had written "serious offer" and she meant it. Five months later, on a still-dark early morning in March 2006, we drove with Virginia's husband, Steve, to Washington Hospital Center and had our surgeries.
God bless Virginia. But there are not enough people like her. Altruism isn't a sufficiently motivating force. We need to test incentives, to reward people who are willing to save the life of a stranger through donation.
Benefits will almost certainly increase the donor pool, as they have in other domains. We have no shortages of ova, sperm, and cadavers for medical school dissection. Notably, the U.S. pays donors for their blood plasma and is, in fact, the supplier to the rest of the world.
Compensating organ donors is not a new idea. In 1983, Al Gore, who championed NOTA, explicitly suggested rewarding donors if altruistic volunteering did not keep up with demand. Moreover, NOTA's legislative history implies that the law's felony provision against "valuable consideration" in exchange for an organ was intended to prohibit brokered or direct cash sales between buyer and seller. It is silent regarding a system of in-kind, third-party compensation.
Here is a plan for donor benefits: A governmental entity, or a designated charity, would offer in-kind rewards, like a contribution to the donor's retirement fund, an income tax credit, or a tuition voucher worth roughly $50,000 in value. (This is the amount typically proposed by advocates of incentives.) To enhance deceased donation, a funeral benefit could be offered.
With a third party providing the reward, all recipients, not just the financially secure, will benefit. An imposed waiting period of at least six months would help limit impulsive live donation and, most important, any subsequent remorse. Prospective donors would be carefully screened for physical and emotional health, as is done for all donors currently. Their kidneys could be distributed, according to exiting allocation policies now in place for cadaver organs.
Donors would be guaranteed follow-up medical care for any complications, which is not ensured now. And the cost of the benefits could be underwritten by the enormous savings from dialysis.
Will rewarded donation attract only low-income prospective donors? Perhaps. One option is to require a minimum income for donors, but that strategy prevents all interested parties from participating. Better to start with the assumption that low-income people are capable of making decisions in their own interest. In the end, regardless of who ends up donating, a sound plan ensuring that donors are thoroughly informed, their health protected, and their sacrifice amply rewarded is an ethical one.
How to achieve this? We should start with pilot projects. The Department of Health and Human Services probably could initiate pilot trials, if motivated. The Center for Medicare and Medicaid Innovation has impressively broad authority. In theory, the Center could issue NOTA waivers to academic medical centers interested in administering a pilot program wherein living donors would be rewarded with five years of Medicare coverage.
States should also get involved. The late Pennsylvania Governor Robert P. Casey, who had received a heart and liver transplant a year earlier, signed a 1994 law that would enable a bereaved family of an organ donor to get a burial benefit of up to $3,000 paid by the state directly to the funeral home. State health officials ended up with cold feet, fearing that the law flouted NOTA, but some bold state should proceed with a funeral benefit and force the Department of Justice to action, spurring a vital national debate in the process.
Congressional action is another approach. Lawmakers could amend NOTA to permit pilot trials of incentives by clarifying the intent of the law as a restraint on cash exchange between buyer and seller with or without a broker. The need for a new approach to expanding the supply of donors should resonate with lawmakers on several levels. The first is public health (needless deaths), the second is fiscal (the enormous cost to Medicare — roughly seven percent of its budget is spent on dialysis and its complications), the third is human rights (the global black market); and the fourth is race (minorities are disproportionately disadvantaged by the organ shortage as they are less likely to be referred for transplant).
National Kidney Month was little more than a feel-good public relations stunt. But it could be a real boon to people suffering from renal failure if the transplant "community" finally came to terms with the fact that altruism, while a lovely sentiment — and one that saved me — is also in relatively short supply. We must explore new and ethically sound ways to motivate people to donate. That message put forth in the designated month of the kidney, would be something to celebrate.
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