Organs, Ethics, and HHS
By James V. DeLong

Everyone agrees that something needs to be done to increase the supply of human organs available for transplant. But the U.S. Department of Health and Human Services has just finalized a regulation that will have the opposite effect. It also misses the chance to move the ethical debate into more sensible terms.

In 1997, 20,000 major organs were transplanted, including more than 11,000 kidneys, 4,100 livers, and 2,200 hearts. Demand outstrips supply, and 60,000 people are on the waiting list. About 4,000 of them will die during the next year before their turn comes. This understates the gap, because a patient does not even make the list unless s/he can pass "the green screen." This means showing an ability to pay for the procedure. A kidney transplant plus five years of follow-up costs $172,000, and prices for other organs are higher, so only the well-insured or the Medicare-eligible need apply.

The organ gap has set up a battle within the medical profession. Hospitals that collect organs tend to use them at home, offering them to other centers only if no good local match exists. Since the number of transplant programs has grown from a standing start to 275, the competition is getting fierce.

This local preference has aroused ire in two places. One is the big national centers. These pioneered transplant techniques, trained the surgeons who have started the new programs, attract patients from all over, and now have a hard time meeting their needs from local donations. The second is HHS, which believes that fairness requires a national system of allocation to guarantee that a patient's chance of getting an organ does not vary with geography.

HHS, the 800-pound gorilla of medicine, gets what it wants. A rule effective October 1 mandates a nationwide system. It also requires preference for "sickest first" -- patients closest to death -- to replace the multiple and largely unarticulated criteria that govern the local centers.

Opponents are fighting back in various ways. They extracted some concessions during the rulemaking; four states have passed laws to keep local organs at home; a judge in Louisiana recently issued a restraining order against the rule. They cannot prevail against the federal government in the end, and the rule will be in place soon.

The locals argue that successful programs to encourage donations are very much a result of local initiative. Neither potential donors nor medical staff will be motivated if their efforts benefit unknown, far-off patients rather than their own communities. HHS, they say, will shrink the total supply.

This argument is powerful, but it does not go far enough. If donations are to increase, then basic assumptions need rethinking. For example, the doctors and bureaucrats running the system assume that a donor should have no say about who receives his organ (except for transplants of kidneys among relatives). They regard this as so obvious that they never bother to justify it. In fact, it is far from obvious. Why should not a donor establish his own preferences -- children, for example, or someone with the longest potential life span, or no cirrhotic politicians?

HHS's "sickest first" is not an ethical imperative. It is a copout, based on a fear that someone, somewhere might be willing to take on moral responsibility. An individual donor might have different priorities, and a willingness to accept responsibility. The chance to express these would surely raise the donation rate.

A second unthinkable idea should be thought: Start paying for organs. For a donor to sell a human organ is illegal under federal law, but every other part of the system is awash in economic calculation. Much of the current contest is about money -- which medical centers will prosper and which will not? It is hypocritical to insist that donors, alone among all the players, act selflessly. Yes, there are lots of problems with payments, but if we really care about the 4,000 plus people who are doomed by the present system, some thinking outside the box is morally obligatory.

HHS, by enacting a national system that is based on the one dubious criterion of "sickest," that excludes preferences of individual donors, and that continues the ostrich policy that economic motivations are not involved in this area is moving in the wrong direction.