Mon. Apr 15th, 2024

Centers weigh factors differently for organ transplant wait-lists

When Beth Lehman, 49, of Sandy Springs, Ga., was 47, her doctors told her she would die if she didn’t have a liver transplant. At the time, she was drinking two to three bottles of wine a day.

Lehman’s transplant center wanted her to complete six months of sobriety counseling before she could get on the transplant waiting list, but her doctors thought she might not have that long to live. “I was rapidly going downhill, so they had my therapist sign a letter saying that I was currently in [counseling], and I signed a letter of intent to complete it,” she said.

On April 18, 2021, after planning her own funeral, Lehman got the call that a new liver was waiting for her. She had her transplant the next day. Nearly three years later, she remains sober and is the healthiest she has been in years.

Lehman was lucky. Another center might have rejected her.

More than 100,000 people in the United States are on wait lists for an organ transplant. With a shortage of needed organs, transplant centers must choose among hopeful patients, accepting those candidates deemed to have the greatest need and highest chances of success.

What many people don’t realize is that medically qualifying for a transplant is just part of that process. Other factors, including the perceived strength of a person’s support network, play a role, too, adding a variability to the process that works against some patients, critics say.

“This aspect of transplant isn’t regulated. There are really no established best practices,” said Lisa McElroy, an endowed assistant professor in surgery at Duke University School of Medicine who has started a consortium to improve equity in transplants. “When people think about eligibility for transplant, they may just think about ‘Do they qualify medically?’ But the transplant evaluation is actually a multidisciplinary evaluation.”

Why social factors matter

The evaluation process is designed to gauge, among other things, whether a patient is up to the rigors of post-transplant recovery.

That means transplant panels assess what are known as psychosocial factors, including whether a patient appears likely to get to multiple post-surgery doctor’s appointments and to follow a strict medication regimen that includes expensive immunosuppressant drugs designed to keep the body’s immune system from attacking a new organ. The panel also wants assurance that the patient will avoid using drugs and alcohol, and that they understand general medical processes.

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One challenge of psychosocial predictors is the high degree of variability from center to center on how they are weighed.

An official with the American Society of Transplant Surgeons (ASTS) said such variability is necessary. “There is not a ‘one size fits all’ approach, as each center has their own criteria based on program size, outcomes, and experience,” Samantha Halpern, associate councilor for ASTS, wrote in an email.

“All patients should have equitable access” to the national organ transplant waiting list, the United Network for Organ Sharing (UNOS) said in a statement.

‘Disproportionately impacted’

Liver transplantation offers a lens into the complex evaluation process common to solid organ transplantation. In 2023, a study led by researchers at the University of North Carolina and the University of Pennsylvania said 44 percent of patients evaluated for liver transplants were not placed on organ wait lists. Of this group, nearly 17 percent were rejected because of psychosocial or financial reasons.

Another study led by Keren Ladin, an associate professor in the Department of Community Health at Tufts University and the former chair of the UNOS Ethics Committee, found that 10 percent to 20 percent of patients are rejected from transplant listing because of inadequate social support.

Using survey responses from 604 clinicians at 202 transplant centers, Ladin’s team reported that “inadequate social support excludes up to 20% of transplant candidates needing an organ transplant.” Further, a “majority of transplant providers believed that social support criteria disproportionately impacted patients of low socioeconomic status, and nearly half of providers lacked confidence in current social support criteria,” the researchers concluded.

There’s a “large bucket of kind of subjective … nondescript factors, including motivation and readiness,” Ladin said. “All of those factors are concerning and likely to exacerbate structural disparities in access to transplant even among those who are already referred, which we know is a very small subset of the patients who would benefit.”

Some centers are also better able to manage complex factors beyond medical need, one expert said.

“If you have more resources, you can probably take more risks,” said Robert S. Brown, professor of medicine and chief of the Division of Gastroenterology and Hepatology at Weill Cornell Medicine. “If a center is able to invest in more post-transplant addiction treatment or willing to invest, they can probably take more risk than a center that doesn’t or where the patients come from so far away that they can’t access those resources.”

Once referred to a transplant center, patients undergo an intensive evaluation process. In addition to the medical and surgical evaluation, a social worker, financial counselor, dietitian, and, sometimes, even a psychologist or psychiatrist will see most patients.

At the University of Pennsylvania, patients are also asked to bring a caregiver to their initial appointment, said Marina Serper, an associate professor of medicine at Penn’s Perelman School of Medicine.

Bringing a caregiver is part of the waiting list evaluation — post-transplant, patients require intensive full-time caregiving for several weeks or even months, according to Serper. So transplant panels want confirmation that there’s someone who can drive a potential patient to and from frequent appointments, including during the normal workday. If a patient can’t find someone to accompany them to their initial transplant evaluation appointment, transplant panels may view that as a lack of sufficient social support.

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But McElroy noted that some centers require that a patient have only one caregiver, while other centers require two. And some centers, Serper said, will work with patients to find a paid caregiver.

Once the patient has undergone this extensive multidisciplinary evaluation, their case is discussed by the transplant committee. “We bring them back in front of our committee, and we kind of talk about them and make a decision as to, yes, we want to list them, or no, we don’t think they’re a good candidate,” said Tamara Cozzi, a nurse and liver transplant coordinator at Penn.

One patient’s good fortune

When Kori Anderson, 36, of Belleville, N.J., was 20, she was told she would eventually need a liver transplant because of a condition called primary sclerosing cholangitis.

At 30, she became sicker and — while working as a psychiatric physician assistant — moved back home to Oregon at the advice of her doctors. With parents who could retire to provide 24/7 care, a boss who extended her health insurance coverage, no history of drug or alcohol use, and a high degree of medical literacy, she quickly passed the transplant evaluation and got on the wait list. After two months of waiting, she received a liver transplant on July 13, 2017. Anderson’s and her family’s lives were upended, but she was more fortunate than many to even be listed.

“I was really lucky, my parents were teachers so could take time off to care for me, and I didn’t get my transplant until they were at the age they were able to retire,” she wrote in an email. “I don’t know what happens to people who don’t have someone.”

Through the Consortium for the Holistic Assessment of Risk in Transplant, which she launched in April 2022, McElroy hopes to create a more data-driven approach to transplant listing.

“I think by not having the data organized and not being able to review it, not having that information to learn from, we have left the transplant selection process unstructured and as such vulnerable to institutional and individual bias,” McElroy said.

“Transplant clinicians want to transplant patients,” McElroy said. But, she added, the best way for centers to help disadvantaged patients “is to do a better job collecting this data.”

Netana H. Markovitz is a resident physician at Beth Israel Deaconess Medical Center/Harvard Medical School in Boston.

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