Death’s Waiting List (Unabridged Version)

The New York Times, May 15, 2006

By Sally Satel

March was National Kidney Month. I did my part. With the help of my friend, Virginia Postrel, I got a new kidney — hers. My good fortune, alas, does not befall nearly enough people.

Today there are 66,000 individuals waiting for kidneys, according to the United Network for Organ Sharing, which maintains the national waiting list. Last year, roughly 16,000 received a kidney (about forty percent are from living donors like Virginia). Others are waiting for livers, hearts, and lungs — which mostly come from deceased donors — bringing the total to about 92,000. In big cities, the wait is between five and eight years and is expected to double by 2010.

Demand so outstrips supply that today someone on the list dies every 90 minutes. Tick. Tick. Tick.

Until Virginia came forward, I was desperate. I only had only been on the list for one year and dialysis was around the corner. I wished for a Sears organ catalog so I could find a well-matched kidney and send in my check. I wondered about going overseas to become a “transplant tourist,” but getting a black market organ seemed too risky. I joined a website, and found a potential donor but he fell through.

Paradoxically, our nation’s organ policy is governed by a tenet that closes off a large supply of potential organs — the notion that organs from any donor, deceased or living, must be given freely, in exchange for nothing. The 1984 National Organ Transplantation Act makes it illegal for anyone to sell or acquire an organ for “valuable consideration,” that is, money or anything of monetary value. This restriction amounts to a death sentence for many on the list.

Only 30 to 40 percent of Americans say they have designated themselves donors on their driver’s licenses or on state-run donor registries. As for the remainder, the decision to donate will fall to their families who are as likely as not to deny the hospital’s request. In any event, only a small number of recently deceased individuals, perhaps 13,000 annually, possess organs healthy enough for transplantation.

The verdict is in: relying solely on altruism is not enough. Charities rely on volunteers to help carry out their works but they also need paid staff. If we really want to enlarge the supply of organs, we need to try incentives — financial and otherwise.

Many transplant experts recognize this. A flood of editorials and essays appeared in medical journals bemoaning our broken system and proposing bold initiatives that would enable individuals to give their organs in exchange for rewards, such as a tax break, guaranteed health insurance, college scholarships for their children, deposits in their retirement accounts, and so on.

Ethics committees of UNOS, the American Society of Transplant Surgeons, the President’s Council on Bioethics, and the World Transplant Congress, among others, have begun discussing the virtues of such incentives.

Against this backdrop of mounting frustration comes a new report from the Institute of Medicine “Organ Donation: Opportunities for Action.” Commissioned by the federal Health Services Research Agency to suggest ways to increase the pool of deceased donors only, the report more properly should be subtitled “Recommendations for Inaction”.

The recommendations boil down to a single one — to expand donor eligibility to those who died of cardiac arrest. Currently, organs can only be retrieved from those who suffer brain death. This makes sense as more people die because their heart stops than because of brain damage.

But even so, there the numbers will almost surely fall far short of the rosy scenario painted by the IOM. At the very least, the IOM should have endorsed the seeds of a Plan B. One possibility is the popular and effective European practice of “presumed consent” in which citizens are considered donors at death unless they specifically sign an anti-donor (or opt out) card.

Another is pilot studies using incentives in the context of a regulated market. One model resembles a “futures” market in cadaver organs. Compensation such as outright payment, a sizeable contribution to charity of the donor’s choice or lifetime health insurance could go to him in installments before death or to his estate afterwards in exchange for his permission to recover his organs at death. Regrettably, the report expressly recommends against incentive trails.

Why so timid? The IOM cautions against treating the body as if it were “for sale.” But we’ve accepted markets for human eggs, sperm and surrogate mothers. Three recent studies found that at least two-thirds of potential donors said incentives would have no effect on their decision to donate at death. Among those who said that incentives would make a difference, the net effect was to encourage it. Two older surveys found that over half were in favor of incentives as policy. Thus, it is unlikely that incentives would have a chilling effect on overall donation.

Some worry that compensation for living kidney donation will be most attractive to the poor and hence exploit them. In a regulated market, however, living kidney donors will receive education, undergo careful medical and psychological screening and receive quality follow-up care. A donor can easily manage for a lifetime with one healthy kidney. And how is it unfair to poor people if compensation enhances their quality of life?

A group of physicians and scholars who have formed the International Forum for Transplant Ethics, which argues vigorously for the consideration of kidney sales by living donors, acknowledges that many are put-off by the idea of payment for organs. Yet it rightly puts the obstructionists on the defensive: “The well-known shortage of kidneys for transplantation causes much suffering and death [6000 a year in the U.S. alone]. If we are to deny treatment to the suffering and dying, we need better reasons than our own feelings of disgust.”

Why be so concerned about the IOM report if the drumbeat for change has already begun? This is still a fragile debate and protectors of the status quo dominate policymaking. The conclusion of the prestigious IOM, which has influence in Congress, is a setback to vigorous debate, let alone serious reform.