Darlene Hurdsman is at the top of Utah's liver transplant waiting list. But she and doctors in Utah's liver transplant program believe a proposed federal regulation that would send donor organs to the sickest patients, regardless of geographic area, has greatly reduced her chance of getting a liver while she's still relatively healthy.
Were she lying in the hospital 500 yards from a compatible liver match, Hurdsman admits she'd say "go ahead" to sending it to someone sicker. But - and here she breaks down - "I want to live, too."During a news conference Wednesday, representatives from the liver transplant community, including doctors, transplant patients and their families, spoke of the danger they believe the proposed regulation poses.
Health and Human Services Secretary Donna Shalala recently announced the change, which is now in a 60-day comment period. The rule is designed to end what Sha-lala called the "accident of geography" that determines where donor organs, including livers, are used.
Currently, donor livers are "sent more often to regional centers," said Dr. John Sorensen, medical director of the liver transplant team at LDS Hospital.
The agency charged with controlling organ donation distribution, the United Network for Organ Sharing, spent millions of dollars to study the system, he said, including computer models of different allocation schemes. They found "none better for patients with liver disease."
"Changing the system won't change the number who die," Sorensen said. "It will only change their address."
The proposed change is opposed by 95 percent of the transplant centers in the country, he said. "It's being driven by the small minority who stand to gain."
Under the new system, the majority of organs would be used in transplants for the sickest patients. The most successful transplants are those to people who are not yet in dire straits. The end result, according to the physicians, will be wasted organs and much greater ex-pense for transplants.
Currently, harvesting a liver locally costs about $7,800. When a liver is imported from another area, costs rapidly mount to an average of $28,000, according to Tracy Schmidt of the Intermountain Organ Recovery Service, the agency designated by the federal government to oversee transplant distributions in Utah, southeastern Idaho and southwest Wyoming.
Children who need livers will suffer, too. The best candidates for a successful liver transplant are children, said Dr. Linda Book of Primary Children's Medical Center. Although they make up less than 15 percent of those on the transplant list, they have an 80 percent chance of leading a normal life after a transplant.
No one disputes that the real solution to the organ shortage would be to increase the number of organ donations. Nationwide, 11,000 people are on waiting lists for livers, and about 4,500 donor livers become available every year. Nearly one-fourth of those on the list die while waiting.
"The bitter irony to the entire dispute," said Sorensen, "is that it takes energy, dollars and time from the real problem, which is the shortage of organs."
No matter how organs are distributed, people are going to die because of the shortage, he said.
Schmidt believes families take comfort from the fact that most organs donated help people who live in their area.
Kenneth Goble, who is also waiting for a liver, is still fairly active. But he knows his health will deteriorate - will have to, in fact, if he's to receive a liver under the new system.
He's No. 2 on Utah's transplant list, and "If I got a transplant now, I'd have a good chance of 10, 12, 20 more years. The worse I get, the worse my body parts deteriorate, the sicker I'll be."
A lot of people in very serious condition need two transplants before one succeeds. "In effect, one liver would be wasted on me," Goble said.
Both doctors and patients questioned whether political considerations are driving the move to change how organs are distributed. And they said that, contrary to Shalala's belief, more people would be forced to move to different areas to be near a transplant center where their chances of getting a liver could improve.