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WASHINGTON – Surgeons have denied Terra Goudge the liver transplant which was his only chance to survive a rare cancer. His tumor was too advanced, they said – even if Goudge had a friend willing to donate, no matter how lucky he was.
"I have a living donor – I do not take anyone. I'm trying to save my own life, "she pleaded. Finally, the woman from Los Angeles found a hospital across the country that let the couple try.
People lucky enough to receive a kidney or part of the liver from a living donor have not only cut years of waiting for a transplant, but these organs also tend to survive longer. However, living donors represent a fraction of transplants and their numbers have plateaued because of the barriers that prevent people who are otherwise willing to donate. Among them: the hospital's different qualification policies and the surprising financial costs that some donors endure.
Researchers are now exploring ways to remove these barriers and alleviate the organ shortage.
"We just want people to have at least an opportunity to consider this possibility," said Dr. Abhinav Humar, head of transplantation at the University of Pittsburgh Medical Center, where Goudge finally received some of the liver's his friend Amy Aleck.
Thousands of people die each year while waiting for an organ transplant. Nearly 14,000 people are waiting for a liver transplant. According to the UN Network for Organ Sharing (UNOS), which oversees the country's transplant system, out of 8,082 transplants last year, only 367 were from living donors. Donated live kidneys are more common but not sufficient to meet the need. About 95,000 people are on the kidney waiting list. Of the 19,849 transplants performed last year, 5,811 were from live donors.
In addition, black and Hispanic patients are less likely than whites to receive a kidney from a living donor, and a study published in the Journal of the American Medical Association earlier this year revealed that disparity increased.
An obstacle is economic. The transplant recipient's insurance pays the donor's medical bills. But donors have been unemployed for weeks. The US Department of Labor said last month that the work of a donor could be protected by the law on medical family leave. But this leave without pay – and donors lose their income if their employer does not allow some form of paid leave. They may also have other expenses such as travel and hotel expenses for visits to a remote transplant center.
One study found that more than a third of live kidney donors reported lost wages in the first year after donation. The median amount was $ 2,712, which was particularly difficult if an organ was requested from friends or economically disadvantaged family members.
"It's a strange thing to tell you that donors have to pay the privilege of donating their kidneys. I think most of us would agree that it's fundamentally wrong, "said Dr. Paige Porrett, a surgeon at the University of Pennsylvania.
Penn is part of a half-dozen transplant centers that check whether reimbursement of a donor's lost income can reduce the wait for a kidney.
"The community is really tied to how we can help them," said Porrett. "It's not a mistake to understand that we are paying people for their organs."
Another challenge: Living donation is too often seen as a last resort rather than a first choice, Pittsburgh's Humar said, especially for liver transplants. His hospital is trying to change that, and last year an important step was to perform more liver transplants in living donors than in deceased ones.
The liver is unique, able to regenerate a few months after the donor. But it's a bigger and riskier operation than giving a kidney.
And this raises an ethical debate: many people with failing liver are not allowed on the national waiting list for organs from deceased donors. This is because the rare supply is rationed, given only to those who have the best chance of survival. But what happens if unskilled patients find a living donor? Should the donor be allowed to undergo risky surgery if the expected survival of the recipient is not as good?
Goudge, the Californian patient, had been battling a rare disease called fibrolamellar hepatocellular carcinoma since 2001. Various treatments allowed her to control her cancer for years, but eventually saturated her liver. Although Goudge's condition is not as aggressive as typical liver cancer, it was more advanced than allowed by the graft waiting list rules – and the first surgeons consulted said that living donation was not an option either.
Then she fell on Pitt's program. Humar says that living donation could allow for transplants for many patients who would otherwise never have been able to – either because too many people are ahead of the waiting list or because they did not appear on the list. After a thorough evaluation of the patient and potential donor, Humar decided that Goudge had a sufficient chance of prolonged survival to justify the risk for her friend. In April, his team replaced Goudge's liver with a healthy piece of Aleck. Both have recovered well.
"She's really a walking miracle for me," said Goudge.
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The Associated Press Department of Health and Science is supported by the Department of Science Education at the Howard Hughes Medical Institute. The AP is solely responsible for all content.
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