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.
Continue reading the main story