Greater Access to Donated Livers Promised to Transplant Patients
Originally published in the New York Times
By Ted Alcorn
With Manhattan skyscrapers as a backdrop, Roscoe and Sharon Fawcett celebrated their 29th anniversary with a meal of steak, corn and baked potatoes. “She finally got a New York skyline wedding anniversary dinner,” said Mr. Fawcett, a firefighter in Stamford, Conn. “But I’d rather not have had to give it to her that way.” That’s because Ms. Fawcett, 53, has end-stage liver disease, and the celebration took place in a ninth-floor family lounge at Mount Sinai Hospital, though she was too sick to eat very much. Ms. Fawcett, a retired caterer, is one of 14,100 people in the United States waiting for a liver transplant. One in ten will die before getting an organ.
Wait times can vary dramatically across the country. There are 350 people on the list at Mount Sinai, and fewer than a quarter are likely to receive a liver transplant this year, according to the Scientific Registry of Transplant Recipients.
At Duke University in North Carolina, there are 49 names on the transplant list, 70 percent of whom are likely to receive a donated liver.
“Some people can live quite a while on the transplant list,” said Mr. Fawcett, his voice cracking with emotion. “Unfortunately, my wife can’t.”
In an effort to fix a system that some health care experts say is deeply flawed, the nonprofit organization that manages the nation’s organ transplant system recently voted to revise how donated livers are distributed.
The organization, the United Network for Organ Sharing, or U.N.O.S., decided to slightly loosen the geographic boundaries that determine how organs are matched to patients. The move will improve the chances for the sickest patients awaiting new livers in regions where they were previously most scarce.
But the new rules, five years in the making, are a disappointment to some critics, who had hoped the organization would approve more significant changes and redraw the geographic regions to ensure equivalent wait times throughout the country.
“They don’t actually want to solve the problem,” said Sommer Gentry, a mathematician at the United States Naval Academy who proposed a more substantial overhaul that was rejected by a U.N.O.S committee in May. “They’ve decided to do as little as possible.”
Her proposal would have reduced the number of regions and redrawn their boundaries to balance the ratio of expected donors to those who need organs. She called the new revisions “not even a half-measure.”
Dr. Julie Heimbach, the chair of the committee that advanced the final proposal, said it deeply divided the transplant community. The revised system is a compromise, she said, but one that will significantly shorten wait times for the most desperately ill patients.
“It’s been a very long and arduous path,” said Dr. Heimbach, who is the surgical director of liver transplantation at the Mayo Clinic in Rochester, Minn.
Not acting, some U.N.O.S. members said, could have prompted intervention by the federal government, potentially jeopardizing the organization’s autonomy.
Those concerns were underscored three days before the vote, when a lawyer representing a 25-year-old woman awaiting a liver transplant in New York sent a letter to Eric Hargan, then the acting secretary of Health and Human Services, calling on him to eliminate the “arbitrary geographical boundaries” established by the transplant network.
Under the new procedures, the sickest patients are still prioritized for receipt of livers donated in their local area and region, but they will also gain access to donated livers across the regional border, within a range of 170 miles.
Any modification to the system has life or death implications. Because the number of people in the United States who need livers vastly outnumbers the availability of donated organs, increasing accessibility to livers in one region inevitably means reducing it somewhere else.
Computer simulations conducted by U.N.O.S. suggest that New York City stands to gain the most from the changes, with an annual increase of 50 livers and a 21 percent decline in deaths for those on the waiting list. Places with a higher ratio of donor livers to recipients, among them the regions that include Ann Arbor, Mich., and Philadelphia, are likely to lose.
There are 58 so-called donor service areas in the United States, and their odd shapes and sizes reflect their origins, emerging organically from the nation’s first transplant centers in the 1960s and 1970s. For distribution purposes, the donor areas are configured into 11 larger regions.
In the early days of transplantation, there was little need for a complex distribution system because livers did not remain viable long enough to be transported very far. But medical advances have made it logistically possible to consider candidate organs from much longer distances.
When a person dies and donates a liver, potential recipients in the region are prioritized and the sickest gets first dibs. In the case of a tie, the system favors those in the local donor service area, and if none of the sickest patients can be matched with the liver, the organ is shared with other regions of the country.
The end result is that patients across the country effectively jockey for different sets of livers, leading to stark inequities.
To many medical experts and patient advocates, the focus on the organ distribution system is misplaced; more attention, they said, should be directed to increasing the number of donated livers.
Dr. David Goldberg, the medical director for living donor liver transplantation at the Hospital of the University of Pennsylvania, said the changes keep in place “a zero-sum game” and do little to increase the number of transplants. “It shuffles around where and when people get transplanted, and may decrease mortality in one area and increase it in another,” he said.
Some regions, experts say, could be doing a better job of fostering organ donation. Adjusted for population, the New York City area reported fewer organ donors in 2016 than any other in the country.
This is partly because of the city’s lower than average rates of death from medical conditions that hold the greatest potential for organ donation. But New York’s donor service area is also among the worst at convincing patients to become donors.
While the number of organ donors nationwide increased by 20 percent between 2004 and 2014, the New York City area reported a 10 percent decline during the same period.
Wealthier patients are better able to navigate the inequities of the current system by registering for a transplant in more than one region, as they can bear the costs of staying near a transplant hospital far from home while waiting to reach the top of the list.
Such inequities came under heightened scrutiny in 2009, when Steve Jobs, then the chief executive of Apple and desperately ill with pancreatic cancer, flew by private jet to Tennessee from California to receive a liver transplant. Some questioned whether his wealth or prominence allowed him to jump to the head of the list, though his doctors said that was not the case. Mr. Jobs died two years later.
Ms. Fawcett, the liver patient at Mount Sinai, has considered moving to increase the odds of getting a liver, but she worries about being far away from the support network — doctors, family and friends — that has sustained her during her illness.
With her health declining, however, Mr. Fawcett said they are pondering a move to North Carolina. Their daughter is in her final semester of college, and Ms. Fawcett is determined to see her graduate.