ll was well until one day on Thanksgiving weekend two years ago, when she began vomiting blood for no apparent reason. A friend rushed her to the hospital. “If I hadn’t gone, I probably would have died,” she told me. Doctors at Manhattan’s Mount Sinai Hospital told Lisa that her PBC had progressed and she might need a liver transplant soon—if she could get one in time.
There’s a nationwide organ shortage. More than 115,000 Americans are on waiting lists for organs—mostly kidneys and livers—but because of how transplants are regulated, the severity of the shortage varies by geography. The United Network for Organ Sharing (UNOS), the government-sanctioned organization responsible for allocating organs, divides the country into eleven regions; for the most part, organs must be transplanted within the same region in which they’re donated. But not all regions are equally in need. The two regions that encompass the Deep South’s “stroke belt,” for instance, have less severe liver shortages than elsewhere because of a combination of higher supply and lower demand.
Lisa had the bad luck of being treated Region 9, where livers are harder to come by. She faced a long waiting list. Being affluent, though, she had more options than the less fortunate candidates in her region. Since UNOS can’t restrict transplant candidates like it does organs, her doctor suggested she get listed in a region with a higher organ supply, to increase her odds of survival. Doing so isn’t simple or cheap. Some hospitals require patients be local for testing purposes, be immediately accessible in case an organ becomes available, and live in the area for up to three months for recuperation, with a caregiver. Out of pocket, liver transplants can cost more than $565,000; even the best insurance plans rarely cover anything beyond the operation and brief post-operation hospital stay.
Lisa chose Duke University Hospital in the mid-southern Region 11, which has a shorter waitlist for livers than Region 9. Her doctors told her that if an organ freed up, she would need to be at the hospital within hours and remain in the area for several weeks for post-operation testing and monitoring. So she moved into a two-bedroom apartment in Raleigh with her sister, who took a leave of absence from work to be her caregiver. Had Lisa stuck with Mount Sinai in New York, she would have waited one to two years for an organ. But just 10 days after moving to North Carolina, she got a call from Duke. A liver was available.
“Transplant tourism” usually refers to the practice of wealthy people traveling abroad for a new organ. But Americans engage in domestic transplant tourism, too. According to a New Republic analysis of data compiled by UNOS that catalogues organ transplants in the United States, between 2014-2016 there were at least 10,161 out-of-region transplants—nearly 11 percent of all transplants. One study found that from 2008-2013, 2,355 liver transplant candidates—8 percent of the total—travelled greater than 100 miles to other regions to get a transplant. Americans who can’t afford to do this, and who live in an organ-starved region, are left to wait—and often die as a result.
For two decades, transplant surgeons in these regions have pushed UNOS to reduce these geographic and economic disparities. “It’s supposed to be about fairness—equal need should have equal opportunity—but it is often about money and transplant centers protecting their self-interests,” said Sander Florman, a transplant surgeon at Mount Sinai. “It’s disgraceful.”