Transplant Tribulation

By Dick Thompson

Photographer Bryan Lee, 28, of Ottumwa, Iowa, entered a living nightmare last spring. His daughter Makenzie, 4, had developed liver cancer, and the only thing that could save her was a new liver. Since the demand for transplantable organs is always greater than the supply, Makenzie had gone on a waiting list--but high up, due to the severity of her condition.

Then doctors told Lee that the list would soon have to be rejiggered and that Makenzie would be dropping toward the bottom. Reason: the Federal Government was planning to institute a new system for organ allocation. Makenzie would have to compete for an organ with not only patients in her local area but liver patients all across the country as well. She might have been one of the sickest in Iowa, but in that larger population, she would have been considered relatively well off. Fortunately, Makenzie got her transplant last May.

But this week doctors must begin figuring out precisely how the new system will operate. Will there be a national database, for example, and what criteria other than location will be used to decide who gets an organ?

The idea of the new rule--that the most gravely ill should be first in line for scarce medical resources--sounds like the essence of fairness. Yet the new organ-allocation system has ignited one of the most bitter and divisive controversies to hit U.S. medicine in decades. Hospital officials are charging one another with dishonesty and greed. Old friends have become enemies. Says Mayo Clinic health-policy analyst Roger Evans: "It's shocking. There is so much personal animosity, it's almost hatred, and it will only deteriorate over time."

The battle began last April when the federal Department of Health and Human Services proposed a regulation stating in part that decisions about the allocation of organs should "give priority to those whose needs are most urgent." Currently, an organ is offered first to the neediest person in one of 63 organ-procurement areas. If no one in the area qualifies, then it is offered to one of the 11 multistate regions and finally to the rest of the nation.

Under this system, though, accidents of geography can create dramatic inequities. A patient who could afford to wait in, say, Dallas might get an organ that could have gone to someone on the brink of death in nearby Fort Worth, Texas. Varying patterns of supply and demand can create tenfold differences in waiting times. According to computer models cited by the government, these inefficiencies cost as many as 300 lives each year. Says John Fung, transplant director at the University of Pittsburgh: "There's no justification to keep the current system the way it is."

Sounds virtuous, but opponents of the rule say the equity argument is a smoke screen for a baser motive. They point out that transplants are down dramatically in big centers as smaller regional centers have proliferated. The University of Pittsburgh, for example, did 540 liver transplants in 1991, but only 200 last year. The cost per patient can be as high as $300,000. "You're talking millions and millions of dollars lost to those big transplant centers," says Iowa surgeon Maureen Martin.

Moreover, opponents say, the new system could actually drive up costs. Sicker patients require more expensive follow-up care than average patients do, and they have a lower overall chance of survival. Officials at major transplant centers also point out that they are not the only ones open to charges of greed: small transplant centers would probably lose patients and income under the new regulations.

Opponents of the rule, though, are not simply pointing fingers. Two weeks ago, the Louisiana attorney general filed suit in federal court seeking to prevent the program from going into effect in his state. A hearing on the motion is being held this week. And Louisiana Representative Bob Livingston, the chairman of the House Appropriations Committee, has attached a rider to the HHS funding bill that would block the rule for one year.

All this political wrangling leaves potential transplant patients in limbo, adding uncertainty to the anguish they already suffer. Like Bryan Lee, Rita May Bolen has had enough. From her home in a New Orleans suburb, she calmly says her husband Leon, 71, is "sitting in a chair dying." They have been waiting 10 months for a liver. In August Leon was second in line for an organ that was about to become available, but it went to a sicker patient, a young father. "It's the fairest way," says Rita May. But watching the debate over regulatory changes--which could have the effect of prolonging their wait--makes it tough. "The constant talk about this just tears you in two," she says. "They should settle this."