Articles

"Unfair" Kidney Donations

Forbes , June 03, 2006

We don't expect a respected hospital to refuse a patient legal, nonexperimental, life-saving surgery for ideological reasons. But that's what Beth Israel Deaconess Medical Center, affiliated with Harvard Medical School, did to Lisa Cunningham. It's what New York University Hospital did to Herbert Greenfield.

Cunningham and Greenfield are just 2 of the 66,000 Americans on the waiting list for kidney donations. More than 40,000 of those people have been waiting for more than a year. Greenfield has been on the list four and a half years. One of the most common ways to get off is to die.

Maintained by the United Network for Organ Sharing, a non-profit with a government-granted monopoly, the list rations cadaver organs. These come mostly from young, healthy people who died in accidents or as a result of crimes.

Nowadays, instead of waiting around for someone else to die before they do, people who need kidneys are turning to living donors, who now account for slightly fewer than half of all kidney transplants. (I donated a kidney to a friend in March.)

Finding a living donor saves years of debilitating dialysis and provides a better prognosis than a cadaver kidney. Thanks to antirejection drugs, the donor and recipient simply need compatible blood types.

For the donor the operation isn't especially risky or difficult to recover from. People go through equally tough operations for purely cosmetic reasons. Most living donors are relatives or friends (or participants in the paired exchanges described in the Mar. 27 FORBES). But not everyone has a big family or social network. And not everyone's friends and relatives are healthy enough--Greenfield's wife was ruled out because of hypertension, for instance--or willing to take the risks.

For people without friends or relatives available, the only hope for a living donor is a sympathetic stranger. To find one, Cunningham, 40, told her story to a newspaper reporter. Greenfield, a retired public school administrator, registered with the nonprofit Matchingdonors.com, paying a lifetime fee of $595 (waived for people who can't afford it). Other patients try Internet forums like Livingdonorsonline.org or start their own Web sites (Kidneydonor4diane.com, for example).

Since these stories attract new donors and alleviate the organ shortage, you might expect transplant centers to applaud them. But all this self-starting initiative offends the technocratic egalitarianism of the organ-allocating establishment. Some hospitals refuse to do transplant surgery if a stranger wants to designate a particular recipient. "We won't do them," says Dr. Douglas Hanto, the transplant chief at Beth Israel Deaconess and former ethics committee chair of the American Society of Transplant Surgeons. (Cunningham has switched hospitals. So has Greenfield.)

To avoid problems, some posters on Livingdonorsonline.org tell donors and recipients not to mention that they've met online, or to lie about their relationship if asked. It's the latest ruse fostered by a system more interested in limiting voluntary transactions than in saving lives.

Financial incentives, from tax breaks to cash payments, are taboo or illegal, with predictable consequences for supply. Now some authorities find even sympathy suspect. Hanto, among others, wants UNOS to regulate live donations like it regulates cadaver kidneys, which would make "directed donations" from strangers impossible. Public appeals are unfair, he says, since not everyone's story is equally compelling. Someone with an attractive photo, three kids and a productive job, he suggests, might get a donor before "someone who maybe isn't quite so attractive and has had some drug problems and is a member of a motorcycle gang." To Hanto "an emotional relationship" justifies directed donation. Empathy at a distance does not. If someone identifies with the parent of a 9-year-old or, for that matter, with another motorcycle enthusiast, that's illegitimate. If someone identifies with a cousin, that's okay.

There's nothing philosophically consistent about this position. It simply rewards people for having close (and healthy) friends and family members. It lets people who don't have the right connections suffer and die. And it helps maintain a shortage that puts Soviet queues to shame. Hanto says he doesn't know how to expand the supply of organs. He seems content to manage the ever-growing shortfall. "Rationing really needs to be done in a fair way," he says. And who decides what's fair, whose life counts most? People like him.