The Chaotic, Political, Ethically Murky Case of the 10-Year-Old Girl Who Needed a New Pair of Lungs

Health and medicine explained.
June 19 2013 4:08 PM

How to Fix the Organ Transplant Shortage

The chaotic, ethically murky case of a 10-year-old girl in need of lungs.

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Indeed, with annual donations falling far behind demand, we need to give people an incentive to donate. Sarah's ordeal should force a re-examination of the 1984 National Organ Transplant Act, which makes giving something of material worth in exchange for an organ a felony punishable by up to five years in jail and/or a fine of up to $50,000.  

A revision of NOTA would allow experimentation with incentives for donations. For organs such as lungs and hearts, the donor must be deceased. Perhaps an individual could agree to donate his organs at death in exchange for a burial benefit or a contribution to his or her estate when the time came. A third party, such as the government or a charity, could underwrite the cost of the benefit; the organ recipient would not pay for the lifesaving donation.  

Kidneys can be donated by the living. Indeed, roughly half of all donors are friends or loved ones of recipients. To induce more strangers to save a life, compensation could again be provided by a third party and overseen by the government. Because bidding and private buying would not be permitted, available organs would be distributed to the next in line—not just to the wealthy. By providing in-kind rewards—such as a down payment on a house, a contribution to a retirement fund, or lifetime health insurance—the program would not be attractive to desperate people who might otherwise rush to donate on the promise of a large sum of instant cash.

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Would prospective donors lie about their health to be eligible for compensation? This is not a major worry in the context of regulated exchanges, since they would have to undergo rigorous medical testing over several months, which is the current standard of care for altruistic donors. And donors or health care professionals could be made legally liable for any harm suffered by a patient as the result of receiving a diseased or substandard organ.

The state of Pennsylvania grasped the importance of rewarding donations years ago. In 1994 the late Gov. Robert P. Casey, who had received a heart and liver transplant a year earlier, signed a 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.

But then Pennsylvania health officials got cold feet. They feared that the law flouted NOTA. In the end they did not implement the funeral benefit.

Experts continue to debate the legality of a state or federal government rewarding donors or their families, but it's hard to imagine that Congress truly intended that a widow in Harrisburg be punished for accepting a state-sponsored burial benefit.

Would such incentives work? There is good reason to be optimistic, but we need research to be sure. One thing that is inarguable is that our transplant system is a qualified failure. The organ shortage drove Sarah's parents to plead for her life and to sue the federal government. A judge was pressed into overriding an expert panel of physicians. In the heat of it all, politicians tried to pressure a Cabinet secretary to decide who lives and who dies.

Compensating donors could spare us the heartbreak of rationing. Saving one person should not mean death for another.

Sally Satel is a psychiatrist and resident scholar at the American Enterprise Institute.