New Liver Transplant Rule Worries Patients, Surgeons
Within the next day or two, Dr. Ronald Busuttil will sit down and compose a letter to the 250-plus patients on UCLA Medical Center’s liver transplant waiting list to explain why some of them will no longer be considered favored candidates for the life-saving operation.
He is not looking forward to the task.
Busuttil’s department--one of the largest liver transplantation units in the country--has been swamped with calls from anxious patients since Thursday’s announcement of changes in the rules defining who gets priority for a liver transplant.
In that announcement, the United Network for Organ Sharing said that thousands of people with chronic liver failure--which can be caused by alcoholism, hepatitis, inherited diseases and other factors--can no longer be among the first in line for a transplant. Previously, the criteria for deciding who got a transplant were based purely on how close a person was to death.
The rule change by UNOS--which establishes national policies for organ transplants and is overseen by the federal government--was sparked by a serious shortage of livers and other organs in the United States.
The new guidelines will give priority, called Status One, to those who have the best chance of living a relatively long life. Those would include patients with sudden illness--for instance, liver failure caused by poisoning or a virus--who are critically ill, as well as children.
“This is going to be a difficult time for our patients,” Busuttil said of the new policy, which will take effect Jan. 20. “I have been deluged with calls from people who want to know how it affects them.”
Busuttil is one of several high-profile liver transplant surgeons who have misgivings about the rule change.
“I have some reservations,” he said. “I’m not convinced that we’re not going to see a lot of people die because of this policy. The thing that I am concerned about is there are very legitimate candidates who have been Status One, and because of these new rules, they will not be considered Status One anymore.”
Busuttil operated on one such candidate Sunday. Shelly Silva, a 31-year-old single mother from Sacramento, was near death when she was flown to UCLA Medical Center last week. Silva suffers from a rare condition called secondary biliary cirrhosis, a condition in which the biliary tract in the liver is constricted, preventing bile from flowing through.
Three years ago, Silva underwent treatment for pancreatic cancer. The cancer was successfully treated, but the radiation and chemotherapy triggered her unusual liver condition.
“My illness was a one-in-a-million thing,” said Silva, whose recovery is progressing at UCLA Medical Center.
“I’m so glad I got my liver Sunday. If they had already passed this rule, I would only have had a month and a half to live. Now my life has completely turned around.
“I want to watch my little girl grow up. But with this new rule change, they’ll be cutting people like me off from getting a transplant. I don’t see how you can make everything so cut and dried,” said Silva, whose daughter, Valerie Rose, is 5.
Others, however, applaud UNOS for facing the delicate issue of how to best allocate a scarce resource. About 7,200 people are awaiting a liver transplant. Last year, 3,922 such transplants were performed, and according to UNOS, eight to 10 people die each day awaiting a liver.
“This is a real test case for what is fair and efficacious,” said Dr. Arthur L. Caplan, director of the Center for Bioethics at the University of Pennsylvania. “For many years, we’ve allocated livers in this country according to urgency: Who is, literally, at death’s door?
“When liver transplant surgery first began, it was so risky, so dangerous, that to [select] someone who wasn’t at death’s door was almost immoral. But as liver transplant has evolved to better efficacy, that policy doesn’t make as much sense.”
Because most people now survive transplant surgery, the priority will go to those with the best chance for a long life.
“We’re trying to select out the smallest group of patients who could benefit the most,” said James Wolf, UNOS director of medical affairs.
Although many cases of chronic liver failure are caused by hepatitis (which can be contracted from intravenous drug use) or alcoholism, the rule is not meant to punish those with lifestyle factors that may have caused the disease, said several experts.
The issue of how organs are distributed flared up in 1995 when baseball Hall of Famer Mickey Mantle, a recovering alcoholic who also had hepatitis, received a liver transplant. He died shortly afterward from cancer, which had not been discovered before the transplant.
“This policy has nothing to do with sin. It has to do with outcome,” Caplan said. “It is true, however, that if you have many other diseases, you are not as likely to do as well with a transplant.”
Busuttil agreed that the policy is not meant to exclude people based on the cause of their illness but, rather, is focused on how well they might do with a transplant.
“The rule is based on the basic tenet that patients with chronic liver disease do not have as good a chance for survival,” he said. “The general belief--and it’s legitimate--is that these patients are sicker going into surgery. But my feeling is that we should still have some selective criteria for allowing some of these patients to be designated as Status One.”
Lower-status patients will still have the opportunity to get liver transplants under the new rule, experts said. Children, even if they have chronic liver failure or are not facing imminent death, will receive priority for transplants because children tend to have good outcomes, according to the policy.
Although controversial, the UNOS policy change might reignite a much-needed public discussion on organ donation, experts said.
“I think it will do more good than bad,” said Dr. James Williams, director of transplantation at Rush-Presbyterian-St. Luke Medical Center in Chicago. “Maybe the people who make a big deal out of allocation can turn their energies to how to get more organ donors. Less than half of [people who die with organs that could be harvested] in this country end up being donors.”
