An Internet Lifeline, in Search of a Kidney (Unabridged Version)

The New York Times, November 22, 2005

By Sally Satel

On December 23, 1954 Richard Herrick got the most remarkable Christmas present from his identical twin brother: a kidney. Doctors at Peter Bent Brigham hospital in Boston performed the first successful kidney transplant on the 24-year-old Coast Guard veteran. Today, Joel Babb’s painting commemorating the historic operating room scene hangs in the Countway Library at Harvard Medical School.

I hope to receive the same gift. Mysteriously, my own kidneys retired early, as revealed by routine lab tests taken in August 2004.

I suppose because I am a physician, I did not panic at the initial news. The idea of surgery didn’t bother me really, or the idea of possessing a “foreign” kidney, but I had taken care of renal patients as an intern and the thought of being on dialysis—if I could not find a donor—was devastating.

Nowadays, renal failure is rarely a death-sentence, at least early in its course, because of dialysis. Instead, it is a jail sentence—in my dark view, anyway. Depending upon the technique used, one spends several afternoons a week in a clinic or undergoes a procedure at home that lasts all night, every night. Dialysis makes all those things you take for granted—freedom to plan your day, a late night out, a weekend away, –forbidding, if not impossible.

A transplant means a good chance of a normal life. My goal was to find a “live donor”—someone who will give me one of his kidneys—ideally before dialysis becomes necessary. A donor can easily manage for a lifetime with one healthy kidney, and live donor organs function somewhat better, and last longer, than those from recently deceased people (so-called cadaver organs).

But since live donors aren’t easy to find, I also put my name on the United Network for Organ Sharing (UNOS) list for a cadaver kidney. They are in enormous demand as well. About 88,000 Americans are on The List; mostly waiting for kidneys. Only about a quarter of them will receive a transplant within the next year. The wait is four to five years long and about eighteen people on the list die every day. Out of desperation, surgeons have begun using less healthy organs. Faced with a patient on the verge of death, they might transplant, for example, a virus-infected liver from a deceased intravenous drug abuser, as the New York Times Magazine reported this summer in a story titled “Will Any Organ Do?”

My search for a healthy, living donor has been frustrating. I have no siblings, let alone an identical twin. (Donors don’t need to be related, but at minimum they need to share the same blood type.) Several friends said they would look into donating but turned out to have disqualifying medical problems, or spouses who objected, or they got scared.

So I turned to the Internet, where a website called was created in 2004 to facilitate contact between potential donors and recipients. From there on, the process follows the standard path wherein physicians at a transplant center determine whether to proceed with the surgery. The site currently lists about 2,400 potential donors and about 100 possible recipients, and says it has brokered twelve transplantations, with about twenty more recipient–donor pairs matched and awaiting surgery. The site charges organ-seekers several hundred dollars for a listing (no charge for donors) but waives the fee if necessary.

I posted my request. I could have written a lengthy personal essay with photos but I wrote only a handful of sentences with my barebones demographics, blood type and state of residence. Within one week I found someone and, barring complications—he has thus far passed most of the medical hurdles to qualify—the operation should take place this winter.

The site is vital for people like me. But, like any bit of progress in the world of health care, it must be subject to the institutionalized handwringing and negativity of the bioethics community. Brokered transplants “will undermine trust in the whole system,” claims surgeon Doug Hanto, who heads the ethics committee for the American Society of Transplant Surgeons. Last year, his group asked members to boycott transplants that are privately arranged . This, of course, is utter nonsense. The “system” to which Hanto refers is the UNOS list; it is for dead donors. The Web site is for living donation. Not only are these different pools of donors, a live donation takes the recipient out of the cadaver waiting pool and thus actually benefits people on the list because they can move up.

Yet paternalism proceeds apace. In May of this year, a 39-year-old death row inmate in Indiana asked for a delay of execution so he could donate part of his liver to his ailing sister. Not allowed, says Dr. Mark Fox, chairman for the ethics committee for the United Network for Organ Sharing. “The [prisoner’s] lives are constrained in ways that yours and mine are not,” he explained. “Neither [sibling] may feel they have the complete freedom to make the decision that is appropriate for them.”

I got a lead from prison too. An inmate in a Kentucky penitentiary wanted $900,000. In meticulous penmanship he wrote “what is life worth to you? If you do not have this kind of money, I am sorry. I cannot help you.” It was like he was holding his kidney hostage.

Actually, I would have happily taken a healthy kidney from a killer. I have never been sentimental about the body—well, the inside of it, anyway. Kidneys are precious to their owner, but we all have a spare and its value becomes far more momentous when it is made available to someone whose life depends on it. I would have also happily paid for one—but that would be a felony under the 1984 National Organ Transplantation Act.

Some tentative efforts to introduce controlled remuneration into the organ transplant system have been unsuccessful. In 2003, Representative Jim Greenwood (R-PA) proposed to sponsor a handful of demonstration projects in which the government would pay for the purchase of life insurance policies payable to a living donor’s designee. This modest proposal would have simply created a few pilot programs, but it was opposed by the National Kidney Foundation and the American College of Surgeons. (The American Medical Association, American Society of Transplant Surgeons and UNOS, however, did approve.)

Also in 2003, a group of bold physicians formed the Ad Hoc Committee for Solving the Intractable Organ Shortage. Its express purpose was to lobby Congress for pilot programs to test the effects of paying the relatives of post-mortem donors a modest sum—perhaps $5,000 or $10,000—which the family could put toward the deceased’s estate or give to charity. Tax credits were another option. Predictably, the idea was rejected by the National Kidney Foundation and, this time, by the American Society of Transplant Surgeons. “Any attempt to assign monetary value to the human body . . . devaluates the very human life we seek to save,” claimed Dr. Frank Delmonico of the National Kidney Foundation.

In his new book, Kidney for Sale by Owner: Human Organs, Transplantation and the Market, bioethicist (yes, a bioethicist) Mark J. Cherry argues incisively against the transplant establishment’s consensus that altruism is the only morally acceptable motive for donation. “The question is not whether selling organs has harmful elements, but whether on balance, the costs outweigh the benefits,” he writes. “Concerns support caution; they [should] not sustain prohibition.”

For virtually every procedural objection, he suggests a solution. For example, worries that impoverished people will be financially coerced into selling their organs could be averted by only allowing people above a certain income level to participate in the organ market. (Though who is to say that the poor should not be allowed to make a rational decision to part with an organ—and liberate themselves from poverty in the process?)

Might the exchange of money would be so off-putting to some potential donors, their families, or recipients that they would refuse to consider donation at all? Those people could still donate under the terms of our current inefficient system, but how many would forego the opportunity to give the money to a charity? Wouldn’t that complement, rather than undermine, the altruistic impulse that motivated them in the first place? With pilot programs, we could study so many of these questions. If, in the unlikely case, the incentives were no better in recruiting donors than the current system, we could return to business as usual.

What’s more, a regulated market would likely suppress the international black market, which has indeed produced horror stories of exploited donors and recipients alike. In my view, individuals should be able to use their own wealth to purchase organs, and public agencies and charitable organizations should be allowed to use their funds to supply organs to the needy with an organized structure that prevents corruption.

Doubtless, this is a complex and emotional issue. And my stake in it, and perspective on these questions, is not just academic. But I suspect that the public is far more receptive to innovation than the experts. Bioethicists are understandably worried about the slippery slide to amorality, but balances and constraints are possible. Is it really more ethical to let people die while waiting for an organ?