New rules requiring donated livers to be offered for transplant hundreds of miles away have benefited patients in New York, California, and more than a dozen other states at the expense of patients in mostly poorer states with higher death rates from liver disease, a data analysis by The Markup and The Washington Post has found.

The shift was implemented in 2020 to prioritize the sickest patients on waitlists no matter where they live. While it has succeeded in that goal, it also has borne out the fears of critics who warned the change would reduce the number of surgeries and increase deaths in areas that already lagged behind the nation overall in health care access.

The analysis of data from federal health authorities found sharp declines in life-saving surgeries in Puerto Rico and seven states, all but one Southern or Midwestern: Alabama, Louisiana, Kansas, North Carolina, South Dakota, Iowa, and Pennsylvania. Meanwhile, New York and California, whose transplant industry officials lobbied for the new policy, logged their highest numbers of liver transplants in more than a decade in 2021—603 and 959, respectively.

The new system, called the “acuity circles” policy, has nearly doubled the median distance livers are transported, increased transport costs, and coincided with the highest number of wasted livers in nearly a decade, 949 in 2021. That’s one in 10 donated livers. The analysis further shows a significant increase in the number of states sending donated livers beyond their own borders. In 2019, before the new policy took effect, 21 states and territories exported a majority of livers they collected. Two years later, 42 did.

“You’re reforming an organ allocation policy so that it rewards the wealthy areas and wealthy states by providing resources from poor areas of the country,” said Seth Karp, director of the Vanderbilt Transplant Center in Nashville. “I just find that really troubling.”

Karp’s criticism comes amid increased congressional scrutiny of the contractor that has overseen the nation’s organ donation system for the federal government for nearly four decades, the United Network for Organ Sharing (UNOS). The House and Senate are probing whether it and several of the 56 “organ procurement organizations” that it oversees are effectively carrying out their duties, including collecting enough organs for transplant, among other issues.

In an August hearing, Sen. Elizabeth Warren (D-MA) called the system under UNOS a “dangerous mess.”

In written statements to The Markup and the Post, UNOS acknowledged that donated livers are now being transported twice as far on average but defended the changes as better allocating scarce resources to serve the sickest people on the transplant list, in compliance with federal regulations.

“I’m proud that UNOS distribution policies are today saving the lives of the sickest Americans no matter where they live, and we are now leading more improvement to further increase efficiency, accuracy and transparency across the system,” UNOS interim CEO Maureen McBride said in a written statement. No one at the organization would agree to speak to reporters about the policy despite repeated requests.

The data shows that the gains UNOS referenced came at a high cost for patients in a handful of states. In Alabama, for example, where twice as many people die of liver disease per capita than in New York, adult liver transplants fell 44 percent under the new rules, to 72.

These reductions occurred even as the number of transplants and donations nationwide continued to trend upward, largely because increased opioid overdose deaths have made more organs available. In Louisiana, adult liver transplants dropped 27 percent in 2021 despite a high donation rate of four livers per 100,000 people—more than double that of New York.

Some states that did not appear to be part of the lobbying process also increased transplant volume under the policy, notably Oklahoma and Utah.

The change made very little difference for about a third of states when comparing their overall transplant numbers from 2019 to 2021. But a secondary analysis looking at transplants as a percentage of the organs donated in each state resulted in more polarized findings, with a total of 19 states and Puerto Rico showing a reduction in transplants and 12 states and Washington, D.C., an increase, leaving just six states essentially unchanged.

In its own reports on the effects of the change, UNOS found that patients’ survival rate within a year of their transplant dropped from 94 percent to 92.8 percent in the first 18 months, leveling out by early 2022 to about 93 percent. In written statements, spokesperson James Alcorn said an increase in deaths among the newly transplanted is to be expected when those patients are sicker. He pointed out that fewer people are dying on the waitlist overall nationally.

Liver distribution decisions are contentious because every year, more than 1,700 adults on average die or get so sick they are no longer a viable candidate for a transplant.

“It’s all extremely upsetting to think that you are not good enough,” said Mae Ruddock, 58, of Aurora, Mo. The policy makes her feel like “the people on the coasts are the good people. And they’re the ones that deserve the best, and they deserve to live.” Her husband, Billy Ruddock Jr., 59, has waited more than a year for a liver transplant. Without one, his illness—nonalcoholic fatty liver disease—will kill him.

His nearest transplant center is 188 miles away in Kansas, where transplants have dropped by a third since the policy change, according to the analysis. UNOS said the number of waitlisted patients who have died in that state has increased by more than 10 percent since the policy change.

Alcorn said the policy is meant to be neutral. “The OPTN’s only interest in developing the liver policy was to save the most lives through liver transplantation while complying with” federal regulations, he said, referring to the system that UNOS operates: the Organ Procurement and Transplantation Network. “To that end, the policy deliberately does not ‘reward’ any area of the country or ‘punish’ any area.”

Giving Up

Another Kansas patient, Gary Gray, waited for a donated liver for so many years that he and his wife finally gave up on the system.

Gray, 64, of Olathe, Kan., has an autoimmune disorder that began shutting down his liver in 2019, leaving him with a host of health problems including fatigue, tremors, and shortness of breath. His dying liver gave him such severe brain fog that he had to retire two years ago from his job in IT infrastructure. Under the old policy, his surgeon said, he would have gotten a donated liver long ago.

The University of Kansas Health System is the only hospital in the state that performs liver transplants. In 2021, the first full year after the policy change took effect, it performed 30 fewer surgeries than in 2019—down more than a third. Timothy Schmitt, head of the transplant unit there, said his patients are waiting much longer and need to become much sicker now to receive a transplant.

He called the new policy “the most backward plan that was ever created.”

After more than three years on the transplant list, Gray had gotten so weak he had to take a break while walking the eight feet from his recliner to the kitchen. So he and his wife found a living donor through Facebook, bypassing the traditional transplant system altogether.

Living donor transplants are rare in the United States, which relies overwhelmingly on organs collected after death. The procedure removes only a portion of the donor liver and transfers it to the sick patient. Both pieces regenerate to full size.

Alcorn said Gray’s situation is not a result of the policy change because his donor was living. He did not address Gray’s complaint that he felt he had to seek a living donor because the system was failing him.

A Legal Challenge

The UNOS policy change came after aggressive promotion and intervention by hospital and transplant officials in New York, California, and Massachusetts, who complained for years that very sick patients in their states were forced to languish on long waiting lists while less sick patients elsewhere got transplants more quickly. According to interviews, hospital officials recruited patients in those states and funded a 2018 lawsuit filed on their behalf demanding that livers be shared more broadly.

At the time, UNOS and the U.S. Department of Health and Human Services (HHS), which oversees the nation’s organ donation system, said the lawsuit prompted them to approve the new rules in a matter of months, overruling a committee of liver experts who recommended a plan that would not result in livers traveling as far. They also rejected another reform plan that had been approved by the UNOS board—but not yet implemented—that came after five years of study and consideration. While in many cases federal agencies establish rules, in this case, UNOS makes rules with input from the greater transplant community, and HHS approves them.

To examine the impact of the new policy, The Markup and the Post analyzed five years of data obtained from federal health regulators through public records requests on donated livers, liver recipients, and organ discards, as well as data from the Centers for Disease Control and Prevention. The analyses tracked where each organ originated, how far it was transported, and where it was ultimately transplanted. Thirteen states do not have a liver transplant program but have residents who donate organs; they were included only in the distance analyses.

Organs are transported nearly twice as far under the new policy—a median of 163 miles in 2021, up from 85 miles in 2019—the analysis shows.

Reporter Annie Gilbertson contributed to this story.

This article was originally published on The Markup and was republished under the Creative Commons Attribution-Noncommercial-No Derivatives license.