Magazine | June 27, 2016, Issue

The Dearth of Donors

In-kind compensation for organs would save lives

From now until tomorrow at this time, twelve people will die because they cannot survive the wait for a kidney transplant. Shocking? Sadly, this is old news. Since 1987, the year the federal government started keeping tabs on the numbers of patients in need of a kidney, liver, heart, or lung, there have never been enough organs.

Almost 30 years later, an unprecedented 120,000 people are on the wait list for one of those four organs. About 102,000 wait for kidneys. If you live in a major city and no friend or family member is able or willing to donate to you, chances are good that you will wait five to ten years for your name to crawl to the top of the list. Three days a week, four hours at a time, you will go to dialysis to have your blood cleansed. Spending so much time tethered to the machine and feeling chronically frail, you probably won’t be able to hold a steady job.

If you are older than 50, you have a 50 percent chance of surviving the wait. Last year, about 17,800 fortunate people received a kidney and came off the list, while roughly 35,000 new people were added to it. An additional 4,000 or so were removed either because they died while waiting or became too sick to receive a transplant. Meanwhile, donations for all organs have been basically flat for the last five years.

Another dark side to the shortage: a black market. The World Health Organization estimates that 10 percent of all organs transplanted globally are obtained illicitly. At worst, patients receive unhealthy organs. Also troubling is that their impoverished donors often barely understand what they are getting into, get cheated out of promised payment, and receive little to no follow-up medical care.

Our nation’s current organ-donor system, formally known as the Organ Procurement and Transplantation Network, is a qualified failure. It works for some, it is true, but fails so many others. I say this as someone with lousy kidneys who was lucky enough not to depend on the List. In 2006, the glorious Virginia Postrel gave me her right kidney. (Living people, usually family members and friends, supply a little over 30 percent of all kidneys annually.)

So, yes, I am the eternally grateful recipient of the “gift of life,” the sentimental metaphor that undergirds our transplant system. According to the system’s founding ethos, donation must spring from the donor’s altruistic impulse. It’s a beautiful sentiment. It worked for me. But a stubborn, blinkered belief that it is the only way to help is almost surely killing people.

What to do? The answer is to revise the 1984 National Organ Transplant Act (NOTA), which stipulates that any transfer of “valuable consideration” between a donor and recipient is a felony punishable by up to five years in prison and up to $50,000 in fines. Let’s study the effect of rewarding people who are willing to save the life of a stranger through donation — not via a free market with a direct lump of cash, but via other, regulated, and limited means.

Some critics accuse proponents of such a policy of “commodifying the body.” What this signals is concern that donors will not be treated with dignity. But dignity is affirmed when we respect the capacity of individuals to make decisions in their own best interest and when we protect their health, reward them amply, and express gratitude for their sacrifice. Material gain per se is not inconsistent with this.

One congressman has made a move to examine the effects of enriching donors. Last month, Representative Matt Cartwright (D., Pa.) introduced the Organ Donor Clarification Act. The bill allows government-overseen pilot programs to test the effect of providing non-cash incentives to promote organ donation. These pilot programs would have to pass ethical scrutiny by an independent board under the auspices of the Department of Health and Human Services and receive final approval through the department. The pilot programs would last no longer than five years and make use of the existing allocation algorithms to assign organs to patients.

Dr. Keith Melancon, head of transplant surgery at George Washington University Hospital, welcomes the legislation. “We physicians want the latitude to be able to test novel means of recruiting donors. We have tried a lot of strategies, but nothing has made a major impact yet,” he said at a Capitol Hill briefing in advance of the bill’s introduction.

In practical terms, the bill is actually very modest; it simply allows medical centers to design and implement trials. Funding would need to be obtained separately. At the same time, it is a very bold challenge to the longstanding ethos of the transplant community: a reflexive adherence to the notion that donors shall not be enriched.

A model reimbursement plan could look like this: Donors would not receive a lump sum of cash; instead, a governmental entity or a designated charity would offer them in-kind rewards, such as an income-tax credit, a tuition voucher, loan forgiveness, lifetime health insurance, a contribution to the donor’s retirement fund, or a contribution to a charity of the donor’s choice. In case of post-operative complications, term health and life insurance might also be on offer.

The pilot program could impose a waiting period of at least six months before people donated, ensuring that they wouldn’t act impulsively and that they gave fully informed consent. Prospective compensated donors would be carefully screened for physical and emotional health, as are all donors now. These arrangements would filter out financially desperate individuals who might rush to donate an organ in exchange for a large sum of instant cash, only to regret it later.

The donors’ kidneys would be distributed to people on the waiting list according to the rules now in place. (People who wanted to donate a kidney to a specific person — say, a father to a son — would still be able to do so, alongside this system.) Finally, all rewarded donors would be guaranteed follow-up medical care for any delayed-onset complications, which is not ensured now.

In addition to receiving donations from living people, medical centers could experiment with providing funeral benefits to deceased donors. They could also offer a forward contract, in which would-be donors agreed to relinquish usable organs after their death in return for a financial contribution to their estate.

Over the years, we’ve seen legislative efforts to expand donation, but none have been successful. As early as 1981, for example, Representative Philip Crane (R., Ill.) proposed that the family of a deceased donor receive a $25,000 deduction on that donor’s last taxable year plus a $25,000 exclusion from estate taxes. In 1999, Representative James Greenwood (R., Pa.) attempted to authorize demonstration projects, including one that would have provided payments to living kidney donors for the purchase of life-insurance policies or annuities. In 2000 and 2001, Representative James Hansen (R., Utah) hoped to allow a (refundable) $10,000 credit to individuals who donated their organs at death. Simultaneously, Representative Christopher Smith (R., N.J.) introduced a bill for a $2,500 tax credit to individuals who donated their organs while living, or to the designated beneficiaries or estates of posthumous donors.

One state went so far as to pass its own legislation. In 1994, Pennsylvania approved a law that permitted family members of a posthumous donor to receive a burial benefit up to $3,000, paid directly to the funeral home, to supplement the cost of the donor’s burial. The law was never implemented, however, for fear that it would run afoul of NOTA.

Several co-sponsors have signed on to Cartwright’s Organ Donor Clarification Act, and it has won an endorsement from the American Medical Association and a number of patient groups. The Americans for Tax Reform advocacy group is on board as well — it supports the freedom to test incentives, and it approves the potential fiscal savings.

On the financial side, consider that Medicare spends fully 7 percent of its budget, $34 billion in 2013 (or $84,000 per hemodialysis patient), on dialysis care, while only 1.1 percent of Medicare beneficiaries receive such care. The savings realized by avoiding dialysis could be significant. A 2015 paper in the American Journal of Transplantation found that increasing the number of transplants would yield “substantial savings to society because kidney recipients would no longer need expensive dialysis treatments — $1.45 million per kidney recipient.” The paper also estimated “the monetary value of the longer and healthier lives that kidney recipients enjoy — about $1.3 million per recipient.”

Despite its professed commitment to the virtues of altruism and fairness, the failure of the current organ-donation system to innovate, despite obvious flaws, has undermined public trust and shown a profound failure of empathy. In the name of “ethics,” thousands of lives are needlessly lost. Matt Cartwright deserves great credit for taking a step to reverse this deadly trend.

– Sally Satel, a resident scholar at the American Enterprise Institute and a psychiatrist, is the editor of When Altruism Is Not Enough: The Case for Compensating Kidney Donors.

Editor’s note: On June 13, after this story went to print, the White House held an Organ Summit to “answer the president’s call to action to reduce the waiting list for organ transplants,” in the organizer’s words. Millions of dollars were pledged to develop artificial organs, persuade more people to sign up as donors, and resolve obstacles to biological matching, among other strategies. All are undeniably worthy, but the biological breakthroughs will come slowly, and signing up more people to donate at death has been tried for decades. Summit participants did not even broach the topic of increasing incentives to donation.

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