Battle Over Nation's Organ Transplant System Heats Up

Increased Demand Puts Pressure On Congress To Reform Allocation

Pat Sullivan

Associated Press

Critics objected when Baseball Hall of Famer Mickey Mantle got a liver transplant in July 1995. There were sicker people elsewhere, and he had a past of alcoholism, they noted. Mantle died a month later.

Byline By Elizabeth Neus

Gannett News

One year after Neva Bibko's infant granddaughter received a heart transplant, Bibko found out she was a candidate for a new liver.

Bibko has been waiting five years. Her granddaughter lived three years after the transplant and died at age 5. The experience has given the family more contact with the nation's transplant system than they ever expected or wanted.

"The system was fair to her," Bibko, 71, of Phoenix, N.Y., said of her granddaughter. "And I think from my own experience, that I've been dealt with fairly, too."

It is a rare testimonial to the transplant system.

For the past several years, the system has been rocked by bitter charges of unfairness, seen nasty internal fighting explode into embarrassing public view, warred over government attempts to step in and solve the controversy and suffered under the historic shortage of donor organs.

Most of the problems have come in the area of liver transplants.

"I think this whole thing has given the transplant community a big black eye," said Dr. Todd Howard, chairman of the liver committee for the United Network for Organ Sharing, which runs the nation's transplant system.

"If we continue dragging it through all three branches of government, we're going to look like ... well, what we look like."

For the public, one illustration of the trouble came five years ago when baseball great Mickey Mantle got a liver transplant.

Mantle was the sickest person in Dallas, where he received his transplant, but there were sicker people elsewhere, and his past alcoholism made the surgery a troubling issue for some.

Yet many who work in the nation's transplant system say there already were difficult issues bubbling under the surface that would have sprung into public view without the controversies of Mantle's transplant June 8, 1995.

Mantle died Aug. 13, 1995, of cancer discovered during the transplant surgery.

"It's been a building problem, with the growing gap between the number of patients and available organs," said Dr. William Payne, president of the organ network.

"Transplantation, particularly liver transplantation, is a victim of its own success. You can't meet the need."

Nationwide, nearly 70,000 people await transplants, more than 15,000 of them for livers -- an organ with no mechanical backup to prolong the lives of those waiting.

The number of patients waiting for livers increased by 25 percent just between 1997 and 1998 while donation have remained relatively flat.

The number of centers doing liver transplants has grown, from 59 in 1987 to 115, and the types of patients eligible for transplant have expanded as surgeons become more confident in their abilities and as recovery becomes less grueling.

"Demand has so markedly increased," said Bill Frist, R-Tenn., a heart transplant surgeon before he was elected to the Senate in 1994.

"We're transplanting people who are younger and older (than we used to). The (reasons for a transplant) are expanding. We will never have a sufficient number of organs to meet the demand."

The controversy over the Mantle transplant could be seen as the first public stage of the debate, one that faded somewhat as other celebrities received organs after longer waits.

The second public stage began, more than a year later, when it became clear the government was going to step in to help resolve the allocation controversy.

Chronically ill patients were already angered by a change in United Network for Organ Sharing policy that moved some of them further down the waiting list.

And three days of emotional hearings on allocation sponsored by the Department of Health and Human Services in December 1996 stirred the pot further.

The debate soared to new levels with word that a supporter of the University of Pittsburgh Medical Center, a pioneering transplant center and one of the nation's busiest, had directly lobbied his old college classmate Bill Clinton for help in changing allocation policy to benefit big centers like Pittsburgh.

In 1998, Health and Human Services said it wanted broader sharing of organs, with livers offered to the sickest patients outside the community where a liver was collected before less sick patients in the donor's hometown.

A report by the influential Institute of Medicine in 1999 backed up HHS' wishes.

United Network for Organ Sharing and many transplant centers insisted that government intervention was not needed, that the network could handle the allocation policy on its own.

Health and Human Services officials are frustrated by the acrimony.

"These decisions are public policy decisions," said Jon Nelson, who oversees the government's Division of Transplantation, a unit of HHS.

"Allocation decisions (made by UNOS) are not made by physicians, it's made by their board that's only half physicians. To say that the secretary, the chief health officer of the United States, doesn't deserve a place at the table is ludicrous."

The House has already passed a bill giving United Network for Organ Sharing final authority over the system.

Frist said the stalled Senate bill would give Health and Human Services oversight and authority, but leave the decisions to doctors.

And that may be the final battle, which many wish would come to an end so that they can get back to their life-saving work.

"Everyone is acting like a politician now, and it scares the wits out of the public," said Payne of the organ network.

Copyright © 2000 The Detroit News.