How long does a patient with alcoholic liver disease have to wait for a transplant?
The night before Brian Gorzney plans to go to rehab for alcohol consumption, he started vomiting blood. First at 2 a.m., then at 5 a.m. and again at 11 a.m.
When he arrived at the rehabilitation center in North Kansas City, Missouri, they sent him straight to the nearby hospital. There, Gorzney, then 50, and his family learned that he had severe alcoholic hepatitis, an inflammation of the liver usually associated with excessive alcohol consumption.
“So let’s do it,” her daughter Cameron Gorzney, now 22, told them. She was ready for anything that could save her father, the man who coached his softball team through high school and later cheered him on in the stands every game.
But Gorzney was not eligible for a transplant, doctors said. He hadn’t been sober for six months.
In the United States, it is a common practice that patients with alcoholic liver disease to complete a period of abstinence before being able to put on the waiting list for a liver.
This informal policy, often referred to as the â6 month ruleâ, can be trace to the 1980s. The thought then – and among proponents of the practice today – was that six months of abstinence gave a patient’s liver time to heal and thus avoid a transplant. If this did not work, the patient would have proven that he could stay sober and would not start drinking again after a transplant.
However, a landmark European study published in 2011 and several US studies in the decade that followed revealed flaws in this premise. Six months of abstinence is not a good predictor of long-term sobriety, and for people with conditions like Gorzney’s, more than half die within this timeframe. Today, as understanding of drug addiction evolves – viewing it as an illness rather than a personal failure – many surgeons and families say the six-month suspension unfairly penalizes people with drug use disorders. substances. And with alcoholic liver disease on the rise among young adults and alcohol consumption linked to the pandemic exacerbate these numbers, it has become an urgent concern.
âWe have to go beyond denying people life-saving therapy because we think they don’t deserve it,â said Andrew Cameron, liver transplant program manager at Johns Hopkins Medicine in Baltimore. Doctors do not deny treatment to people with diabetes who are obese or to people with sexually transmitted infections who have had unprotected sex, he said.
Cameron and his colleagues published a study last August, which found that among patients with alcoholic liver disease who had to wait six months and those who weren’t, about 20% in each group started drinking again a year after their transplant. This means that about 80% remained sober, no matter how long they abstained from alcohol before the surgery.
âThere was nothing at all useful or predictive over a six-month waiting period,â Cameron said.
There are no national regulations determining how long a patient must abstain before being added to the waiting list; each transplant center establishes its own policies. In 2019, only about a third of liver transplant hospitals in the United States had performed a transplant without. Patients who don’t live near these hospitals – or don’t have the knowledge and resources to get there – can die without ever being on the wait list, Cameron said.
In contrast, some doctors fear dropping the six-month rule could overwhelm the limited supply donor organs. With nearly 12,000 people on the liver waiting list, making sure patients who receive transplants are ready to take care of themselves and ‘donated organ’ is critical. said Kenneth Andreoni, transplant surgeon and former president of the United Network. for organ sharing, which manages the country’s transplant system. (UNOS determines who ultimately receives a donor organ, but it does not determine who may or may not be placed on the waiting list.)
Since 2016, alcoholic liver disease has most often identified rationale for a liver transplant, and since these patients often have a poor prognosis with little time to live, they can quickly rise to the top of the waiting list, overtaking those with liver cancer or other diseases. When a patient gets a liver, “someone else isn’t getting that organ,” Andreoni said. “It’s just math.”
He said longer-term research is needed. “If all these people [who receive transplants without the waiting period] are doing very well and living 15 years, then this is the correct answer. Only time and statistics will tell.
Josh Levitsky, treasurer of the American Society of Transplantation, said some hospitals may fear that organ transplants in patients at higher risk of relapse could lead to poor outcomes and threaten their accreditation or insurance contracts. .
In fact, some insurance companies require patients to provide documentation of a period of abstinence before agreeing to cover the cost of surgery. A study examining Medicaid policies in 2017 found that 24 states had such policies, while 14 did not. (Twelve states did not perform any liver transplants that year.)
In Brian Gorzney’s case, insurance was not the issue. Finding a hospital to say yes was.
When the team at North Kansas City Hospital, which is not a transplant center, suggested that Gorzney consider palliative care options, his family refused. They took him across state lines to the University of Kansas Health System for a second opinion.
There, Gorzney’s daughter Cameron, his ex-wife (Cameron’s mother), his then-girlfriend and his sister teamed up to explain why they knew Gorzney would stay sober and take care of a new liver. responsibly. He has held steady jobs throughout his life, they said. He had never had a DUI. He coached his daughters’ softball teams and was like a father figure to his sister, who is 10 years younger. He was heading to rehab before the onset of this crisis and had a supportive family to help him stay sober after the operation.
But, in the end, the hospital transplant committee said no.
In a statement on the general transplant process, Ryan Taylor, medical director of liver transplantation at the hospital, said each candidate is reviewed by a committee of more than 30 members. âHigh-risk transplant patients may be required to complete 6 months of counseling to demonstrate an ongoing commitment to sobriety,â he wrote, but there is a âfast trackâ for people with alcoholic hepatitis who also have a “low risk of recurrence”.
Gorzney was considered for this route, but the committee did not approve it, his daughter Cameron said.
She was devastated by the no. But she’s stubborn, she says, just like her father. So, she and the rest of the family frantically scanned newspaper articles and academic studies and called out transplant hospitals across the country for another option.
âMy dad was really deteriorating every day,â she said.
They eventually settled at the University of Iowa, where Cameron Gorzney had attended his freshman year of college and heard about his renowned medical system. The family has again argued on behalf of Gorzney. This time they got a yes. The family group text exploded, Cameron recalls.
Alan Gunderson, medical director of liver transplantation at the University of Iowa Hospitals and Clinics, said most hospitals that allow transplants without a six-month wait look at similar factors: the patient’s medical needs, financial stability, social support, understanding your addiction and wanting to recover. But the subjectivity of these measurements means that different transplant committees can make different decisions.
In a letter to Gorzney, the Iowa transplant team explained that they usually recommend a six-month wait period, but immediately approve it for the wait list because he would not survive. not otherwise. In return, Gorzney agreed to attend post-transplant counseling and treatment programs.
Within 24 hours of being placed on the waiting list, Gorzney received a new liver.
Now, over a year and a half later, Gorzney, 52, is still sober and seizing “the opportunity to be someone I haven’t been in a while,” he said. he declares.
He and his girlfriend are engaged and he is grateful to see his daughters, Cameron and Carson, grow into young adults. Longtime Illinois Fighting Illini football fan, he’s even considering supporting the Iowa Hawkeyes now.
But it worries him that the six-month rule, which has led his family to visit three hospitals in three states, is preventing more.
âPeople are dying, unfortunatelyâ¦ not knowing that there may be other options for them because they didn’t have a support group that I had that was aggressive enough and strong enough to reach out and not. not accept the first response they got. “
Kaiser Health News, part of the nonprofit Kaiser Family Foundation, reports in-depth journalism on national health issues.