New liver transplant rules yield winners, losers as wasted organs reach record high

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 Washington Post and the Markup 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 lifesaving surgeries in Puerto Rico and seven states, all but one Southern and Midwestern: Alabama, Louisiana, and 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 1 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.

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"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 written statements to The Post and the Markup, 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 show 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.

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.

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 — non-alcoholic 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 analysis done by The Post and the Markup. UNOS said the number of wait-listed 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 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."

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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.

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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.

To examine the impact of the new policy, The Post and the Markup, a nonprofit newsroom that covers technology's impact on society, 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.

UNOS acknowledged that organs are traveling twice as far. But it said its own internal analysis shows that livers have spent, on average, only 10 minutes more outside the body as a result of the policy change.

HHS declined to respond to written questions. Its subdivision, the Health Resources and Services Administration, which contracts directly with UNOS, also declined to answer questions but issued a brief statement.

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Arguments over livers are heated because there aren't enough to go around. Last year, although more than 9,500 liver transplants were performed, about 10,000 sick people remained on the waiting list across the country at the end of the year. Livers are the second most transplanted organ after kidneys.

End-stage liver patients have a uniquely urgent need: a transplant is the only option for survival. There is no stopgap treatment, such as dialysis for kidney disease.

When a liver becomes available, UNOS's liver algorithm considers dozens of factors to find a recipient who is physically compatible (blood type, patient height) and has the greatest need (severity of illness, time on waiting list).

Under the old rules, one of the most important factors was location. The algorithm's search started in the "donation service area" immediately around the hospital where the donor died. The donation service areas ranged in size from 3,600 square miles, to 808,000 square miles. If no match could be found in the service area, only then would the system offer the organ to patients in the broader region.

The new policy instead searches for the sickest compatible wait-listed patient within a 575-mile radius around the donor's hospital. In New York, for example, this would give patients access to livers as far away as Ohio. If there are no takers among those in the larger circle, UNOS offers the liver to patients who are less sick, eventually opening it up nationally.

Landing a spot on the transplant waiting list has been difficult for some time. To get on the list, patients need insurance or other means to pay for their treatment. They must show up for regular appointments, which often require access to a car and sometimes a friend or family member to drive. And they have to be able to pay for care before and after transplant surgery.

Residents of the states harmed by the new rules are at a disadvantage for each of these. Not only do they generally have lower incomes, they also have lower rates of insured people than those that benefited. Three of these seven states chose not to expand Medicaid, the federal health program for the poor, under the 2010 Affordable Care Act.

Lack of insurance leaves many people with no way to pay for a liver transplant, which can cost just shy of a million dollars.

"Everyone has to have insurance," said J. Steve Bynon Jr., chief of abdominal transplantation at Memorial Hermann in Houston, when asked about its policy. "There are no freebies."

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The increased distances also have created other problems because livers must often be flown.

If the algorithm awards a liver to a faraway patient, finding a plane to get it there in time can be difficult, especially in areas without major airports. Kelly Ranum, CEO of the Louisiana Organ Procurement Agency, said her staff often have to drive to pick up livers, increasing the risk of deterioration.

Extra travel also drives up the cost of a transplant. Fuel, crew and ground time for charter flights can be up to $50,000 for a single organ, according to several surgeons, organ procurement executives and other experts.

Federal cost reports filed by 41 organ procurement organizations, accounting for 94 percent of all liver transplants in 2020 and 79 percent in 2019, show that travel costs increased for about half of the organizations since the rule change.

The extra travel also has contributed to the increase in discarded livers, some transplant professionals said. While surgeons sometimes discard livers because the organs are in worse condition than expected, they can also be lost because they have been outside the body for too long.

While there was not enough detailed data for The Post and the Markup to analyze the policy change's impact on discarded livers, records show that 23 livers were rejected for being "too old on ice" in 2021, an increase of 53 percent from 2019. "Failing to locate a recipient" was cited as the reason for rejecting 84 livers in 2021, an increase of 115 percent since 2019.

Alcorn, of UNOS, said a "hand count" of discard data show "very few cases" where travel is listed as a cause. He did not address whether more were discarded because they were outside the body too long.

The South and Midwest have had higher organ donation rates per capita than other areas of the country for years. The reasons for this are complex, but experts say it's because these states have a higher percentage of types of deaths — like strokes and drug overdoses — that leave organs in good condition for transplants.

"If you have a lot of those types of organs in your region, it's typically because your region is disadvantaged in some ways that would make people die these 'donation eligible' deaths," said Keren Ladin, associate professor at Tufts University's department of community health.

Karp, the Nashville transplant surgeon, said too few donations is the root of the issue in the transplant system. But increasing the supply of livers, he said, was never the focus of authorities.

"They completely missed the major problem," he said.

Annie Gilbertson contributed to this report.