OLATHE, Kansas — Last year, Gary Gray’s liver disease got so bad that it began poisoning his mind, sucking him into imaginary conversations with people who weren’t there.
At one point, he became convinced that his family had turned their home into a commercial haunted house.
“I kept telling my wife to get all these people out of here,” he said. “There weren’t people here.”
Gray, who’s 64, had a rare autoimmune disease called primary sclerosing cholangitis. It attacks the body’s bile ducts, leading to liver failure. He wouldn’t live long without a liver transplant.
But despite debilitating symptoms that forced him to retire early and quit his bluegrass band, and turned him into someone his family hardly recognized, he still wasn’t nearly sick enough to get a donated liver from the national waiting list.
Gray’s doctors say that’s partly because of a recent policy change that made it much harder for Kansans to get a lifesaving liver transplant.
New analysis by The Markup and The Washington Post detailing the extent of the consequences has forced renewed attention on the country’s ailing transplant coordinator and kindled debate over how to fairly distribute a limited number of organs. But some doctors say the conversation ignores deeper problems with a transplant system that has always steered transplants to the wealthiest, most advantaged patients.
A living donor
One feature of Gray’s illness was that he wasn’t scoring very high on the scale used to prioritize patients for transplant, which more accurately predicts the risk of death for those with other kinds of end-stage liver disease linked to things like addiction or obesity.
It likely would’ve been years before he would get a liver from the waiting list. And by then, it might have been too late.
“We all knew that time was running out,” Gray said.
He wanted to be around to see his teenage daughter off to college. And so Gray realized he’d need to go outside of the system to get a transplant from a living donor.
While living kidney donation is now somewhat common, being a living liver donor is a bigger deal. Doctors cut you open, remove as much as 60% of your liver and transplant it into someone else. Usually, in time, both pieces regenerate to the size of a full liver. It’s an all-day surgery; the scar is big.
And so the vast majority of donors do it to save a close family member or friend’s life. But most of Gray’s family was ineligible to be a donor for various reasons. So as a hail Mary, his wife took to social media.
After months of searching, they found a match — a friend of a friend who they’d never met before, living on the other side of Kansas. Late last year, both Gray and the donor traveled to Pennsylvania for surgery.
“Every day now,” he said, “is just a miracle.”
A pivotal policy change
Still, Gray’s doctors say his journey to transplant likely would’ve been much easier had the federal contractor that matches donated organs to patients across the country not changed its process for allocating livers.
In 2020, the United Network for Organ Sharing, or UNOS, implemented a new policy that sent livers farther from where they were donated — nearly twice the distance, on average.
The goal was to reach the sickest patients no matter where they lived. That meant bridging geographic differences in organ donation rates that had resulted in patients needing to be sicker to qualify for a transplant in some parts of the country.
The consequences have been mixed. Slightly fewer people are now dying on the waiting list, although experts caution the figure doesn’t accurately represent the true number of those who die waiting for a transplant — many are taken off the waitlist before they die, once they become too sick to survive surgery.
Meanwhile, the survival rate among new transplant recipients declined slightly, something UNOS attributes to livers now going to sicker patients. Experts say shipping livers longer distances, increasing “cold time” before transplant, can also make transplants more apt to fail.
And as livers travel longer distances, more are going to waste.
But perhaps the most significant ramifications have been geographic. Wealthier coastal states that lobbied for the change now get many more livers than before. New York, where people are less likely to die from liver disease than anywhere else in the country, saw a 31.7% rise in transplants.
That’s mostly been at the expense of poorer, more rural states in the South and Midwest, where people are more likely to die from liver disease.
In Kansas, transplants dropped 37.5% between 2019 and 2021, despite the state’s consistently high donation rate. Since 2020, 83% of livers donated at the University of Kansas Health System have gone to recipients in other states.
“What it’s meant, in a nutshell, is that our patients are waiting longer to receive a transplant than ever before,” said Dr. Ryan Taylor, the medical director of liver transplant at KU Health System and one of Gray’s doctors. “As a result, we do see patients dropping off the list or becoming too sick for transplant more than we have before.”
The hospital — the sole transplant center in Kansas — joined more than a dozen others on a lawsuit before the policy took effect, alleging it would unfairly harm rural communities. UNOS implemented the policy anyway.
Kansas doctors’ fears were largely borne out. More of Taylor’s patients now die waiting for a transplant.
“It’s the toughest part of the job,” he said.
Last month, federal officials announced a plan to overhaul the organ transplant system and break up UNOS’ nearly 40-year monopoly control over it.
But that won’t, on its own, mean more livers going to Kansas patients.
Kansas doctors say the current allocation system is a misguided attempt to address a fundamental scarcity of organs and deep geographic differences in who donates them. In the Midwest and South, more people sign up to be organ donors. More also die from causes that make them better candidates, like overdoses and strokes — reflecting regional health disparities.
The only way to make it so that more people get lifesaving transplants, Taylor said, is to put more focus on increasing organ donation rates.
“That’s a missing piece in these discussions,” he said. “What are we doing to optimize people becoming organ donors?”
Deeper disparities
But the issues with liver allocation only scratch the surface of the inequities baked into the transplant system. Much of it occurs long before patients get onto the organ waiting list — from disparities in who develops liver disease in the first place to hurdles to diagnosis and treatment.
For instance, people who experience food insecurity are more likely to develop nonalcoholic fatty liver disease, one of the leading causes of liver disease, even after adjusting for things like race and income. And if they do, they’re more likely to die from it.
Dr. Ani Kardashian, a hepatologist with Keck Medicine of USC who studies the link, says that’s due to coping strategies food-insecure households use to avoid hunger.
“That includes shifting their dietary intake to consuming low-cost, energy-dense foods that are generally nutritionally poor,” she said, “or binging during times of food availability, because people might be concerned that they’ll come to a time where they don’t have food available.”
Once someone has liver disease, Kardashian said, it can contribute to a cycle of poverty and prolonged food insecurity.
“Their health care expenditures go up. Their ability to maintain a job goes down,” she said. “That puts further strain on the food budget.”
Those who have liver disease face a long road of testing and evaluation before they can get onto the transplant waiting list. Poor people, those living in rural communities and people of color are all less likely to make it.
“The people we see listed for transplant are often the most robust — economically, socially, from the right areas of the country,” said Dr. Lauren D. Nephew, an assistant professor at Indiana University School of Medicine. “There are lots of people who will never make it who probably should.”
Nephew says some of the largest disparities happen early in what she calls the “care cascade” — the process beginning with disease identification and management, continuing through to transplant referral and evaluation, and ultimately transplantation.
More people die from liver disease in states that haven’t expanded Medicaid, including Kansas. Uninsured people, in particular, experience hurdles at the initial diagnosis stage.
That often means a curable disease like Hepatitis C isn’t caught until someone is experiencing liver failure. Health officials estimate that more than half of Americans with Hepatitis C are undiagnosed.
“People don’t get medical attention until they’re in the emergency room vomiting blood. At that point, you’ve got end-stage liver disease,” Nephew said. “If someone had identified that you have Hepatitis C 15 years ago, we could’ve cured it. Now, you may be too sick for transplant.”
Among people who receive a timely diagnosis and are referred to a liver transplant center, disparities persist. People from rural areas might have to travel several hours to the nearest center, where they’ll need repeated evaluations before being listed for transplant. It’s harder still for those with multiple jobs and caregiving responsibilities or people who don’t have reliable transportation.
Those lucky enough to make it to a transplant center face questions that usually filter out people of lower socioeconomic status: Can they afford the surgery — and the lifelong medications to ensure their body won’t reject the new organ? Do doctors think they’ll reliably make it to follow-up appointments? Do they have family support to help them navigate a complicated medical system?
KU Health System, like most transplant centers, takes those factors into consideration when determining which patients to register on the waiting list. Taylor said that’s because doctors have a duty to ensure transplants succeed.
“We need to make sure that the gift of life has the best outcome possible,” he said. “That means patients have to have transportation. They need to have insurance to access the expensive medications that are required to maintain a transplant.”
But Dr. Julius Wilder, an assistant professor at Duke University School of Medicine, said many of the factors transplant centers use to evaluate patients have a level of subjectivity — and can introduce bias.
“It ultimately comes down to individuals on the transplant team sitting at a table, reviewing data,” he said. “All these people need a new liver. The question is, do we believe they’re a good candidate?”
For all of those reasons, he said, many people face an uphill battle.
The consequences for those unable to make the cut are dire. Upwards of 1,500 Americans are removed from the liver transplant waiting list each year because they die or become too sick for surgery — but they represent only a small fraction of the more than 50,000 who ultimately die from liver disease each year, most who never come close to getting a transplant.
“It is painful. Maddening, at times,” Wilder said. “Until we are willing to prioritize giving our patients what they need over finances, we’re going to create policies that, honestly, are never really going to address the fundamental issue.”
Rose Conlon reports on health for KMUW and the Kansas News Service.
The Kansas News Service is a collaboration of KCUR, KMUW, Kansas Public Radio and High Plains Public Radio focused on health, the social determinants of health and their connection to public policy.
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