New Transplant Rules

By Michael Stoll, Philadelphia Inquirer
Printed in the Chicago Tribune, March 2, 2000

R.J. Verna saw dozens of older patients get new hearts, and a few die waiting.

That occurred during the 24-year-old's extended stay in Philadelphia's Heart Failure Hotel -- the patients' nickname for the seventh-floor transplant ward at Temple University Hospital.

During his 11-month wait at Temple, the second-longest ever at the hospital, Verna was told by his doctors that under new organ-sharing rules, he stood little chance of getting a transplant unless his condition seriously deteriorated.

So the beefy former college cheerleader, once strong enough to toss women up and balance them in a handstand, lost 90 percent of his heart's capacity through a slow viral infection. He became so frail that he was told he could die at any moment.

Only then, in mid-November, was he upgraded to status 1-A. On Jan. 26, a heart with his name on it was flown in from North Carolina and Verna got his transplant.

Such long waits are becoming increasingly common, as the sickest patients leapfrog over the healthiest, said Dr. Howard Eisen, head of Temple's heart transplant program.

In the last year, up to 32 people were waiting for hearts at Temple, more than ever. Though it's too soon to tell, Eisen fears the new system is hurting long-term survival rates. At Temple, 88 percent of transplant patients survive one year. Nationwide, it's 75 percent.

"What you're doing is giving hearts to people who will do less well with them," Eisen said. "People are waiting longer, so they get sicker, and end up getting two operations when they would otherwise need one."

The nationwide shortage of organ donors has lengthened waiting times for all transplant organs. The waiting list of 67,000 people is three times longer than a decade ago, while the pool of donors, now 5,800 a year, is almost unchanged.

The United Network for Organ Sharing of Richmond, Va., contracts with the federal government to determine who gets the next transplant. Increased competition for organs has led UNOS to revise its rationing rules, giving preference to the very sickest.

Under the old system, everyone who was infirm enough to be hospitalized was listed as Status 1 and waited his turn. Now, patients are eligible for top priority, Status 1-A, only if they are living with an implanted ventricular assist device, a ventilator, or high doses of intravenous medication, or are deemed likely to die within seven days.

That means fewer chances for less-ill patients to get transplants. In the Philadelphia area last year, for example, 102 Status 1-A's got transplants, compared with 40 Status 1-B's and eight Status 2's, said Kevin Sparkman, spokesman for Philadelphia's Gift of Life Donor Program.

UNOS officials say the decision to favor sicker patients was arrived at by consensus.

"The vast majority of the heart transplant community supported this policy and thought it was the right way to go," said Bob Spieldenner, a UNOS spokesman. He said UNOS is investigating whether the approach erodes survival times. "Anytime we change policy, we take steps and then go back and see what the results are."

Some think hearts are wasted in seriously ill patients. Most hospitals exclude patients who are very old, obese, or afflicted with other terminal diseases such as cancer or AIDS. Still, few have said publicly that the most vigorous should get a chance at life first.

Arthur Caplan, director of the University of Pennsylvania's Center for Bioethics and author of The Ethics of Organ Transplants, said the ranking of patients raises questions of fairness and accountability.

"The argument about who's sickest is part of the larger debate about whether we are using the organs wisely," Caplan said. "The real issue is: Who should be deciding?"

Caplan suggests UNOS be opened up to input not just from doctors and hospitals, but also patients and the families of organ donors.

"This was a stupid change to the rule," said Dr. Patrick McCarthy, another opponent of UNOS's decision, and director of heart transplantation at the Cleveland Clinic. He said waiting times increased by 26 percent there last year because doctors were not given the flexibility to decide the right time for surgery. "If you're transplanting very end-state patients, they're more prone to complications than transplanting someone much earlier."

Eisen said the UNOS bureaucracy should be stripped of its authority. "It's kind of like a small clique of unelected people who have control of the medical destiny of patients they never meet," he said. "It's troubling, very troubling."

PHOTO; Caption: PHOTO: R.J. Verna, 24, waited 11 months for a heart at Temple University Hospital in Philadelphia. Knight Ridder/Tribune photo by Rebecca Barger-Tuvim.