A widow’s successful odyssey to change a discriminatory liver transplant policy

My husband was admitted to the hospital in November 2010 with acute liver failure caused by alcohol use disorder. Mark’s doctor said he needed a liver transplant, but that they “wouldn’t even look at him” until he was alcohol-free for six months. His doctors also refused to assess me as a living donor. “Alcoholics just drink again and waste the organ,” I was told. At the time, I believed it.

Mark lived for just 16 days more.

Two years after his death, I stumbled across legislation that brought me to a shocking realization — Mark had the same right as any other person with liver failure to be put on the transplant waitlist without a six-month delay.

I was devastated. In that moment, I decided to fight so other families would not face the same pain our family was going through. I started a legal challenge to this policy, believing that I ultimately would have to prove in court that even if most alcoholics drank again after getting a liver transplant, they still have the right to be put on the list for one without a six-month “test.”

My first goal was to find out how many people returned to drinking after a liver transplant. I was shocked to discover that most of them do not drink post-transplant. I was also shocked to learn that the liver transplant community has been aware of this fact from the very beginning.

A consensus conference organized by the U.S surgeon general in 1983 concluded that liver transplantation should transition from an experimental procedure to mainstream therapy for end-stage liver disease. The debate over whether or not to include patients with alcoholic liver disease began shortly thereafter. Dr. Thomas Starzl, the pioneering liver transplant surgeon, believed in equal access for these individuals, concluding in 1988 that “the imposition of an arbitrary period of abstinence before going forward with transplantation would seem medically unsound or even inhumane.”

Mainstream research continuously concurred with Starzl’s position. I reviewed dozens of research papers that explored outcomes after liver transplant among patients with alcohol use disorder. They do as well as, or better than, those with other types of liver disease. Depending on the study, their survival rate at five years is between 78 percent and 89 percent, well above the 50 percent likelihood of survival required by liver transplant centers. The majority of patients who return to drinking consume small amounts now and then with no effect on the transplanted liver. And the six-month wait does not improve survival or predict return to drinking. These results were confirmed by a 2008 University of Pittsburgh meta-analysis of 22 years of research in more than 3,600 patients.

A 2011 French study published in the New England Journal of Medicine reported positive transplant results among patients with alcoholic hepatitis, triggering several international centers to review the six-month wait and begin trials of their own. Dr. Robert Brown at Columbia University is among those doctors now speaking out against the six-month wait.

How could a policy with such deadly consequences, especially one not backed by medical research, be put in place at transplant centers around the world? The six-month wait is a standard policy in all Canadian transplant centers. The United Network for Organ Sharing, America’s organ transplant network, leaves waitlist criteria to individual hospitals, though most employ a six-month sobriety test for people with alcohol use disorder. Some states, such as Ohio, dictate their own waitlist criteria, which includes three to six months of being alcohol-free and participation in a recovery program. While the state policy has some provision for patients who cannot survive the wait, they are still subjected to a complex matrix of assessing their risk of return to drinking, recording times they have not remained alcohol free, and the quality of their social support system. Insurance companies often dictate a pretransplant alcohol-free wait as long as one or two years as a condition for payment.

In too many cases, a delay of any length results in unnecessary and preventable death.

This discriminatory policy is based primarily on a moral judgment of patients with alcohol use disorder, supported by an acute fear that public perception of the disorder will harm donation rates. This fear has been buoyed by occasional public outcries over celebrities such as Larry Hagman or Mickey Mantle receiving liver transplants in spite of their “self-inflicted disease” before patients who had been waiting longer for them. However, even public reticence to donate livers has never been objectively analyzed.

For four years, I was driven by blind determination, realizing that the imposition of a six-month delay for a liver transplant had ended my husband’s life despite a high likelihood that he would have survived for years with a new liver and little chance that he would return to drinking.

On Oct. 27, 2015, without the assistance of a lawyer, I filed a constitutional challenge against the six-month wait in the Ontario Superior Court of Justice. Seven months later, the respondents — the hospital that denied my husband a liver transplant, the provincial government, and Ontario’s organ network — asked me to stay my challenge and let them embark on a six-month review, which they felt they would have to do if I were successful in court. I agreed to let them proceed.

After months of negotiations and delays, we agreed to an out-of-court solution, which I recently announced: a three-year pilot program to launch in 2018 that would assess patients with alcohol-associated liver disease for liver transplants without the six-month wait. Patients accepted onto the recipient list will enter a program of care that includes a transplant surgeon, a liver specialist, an addiction psychiatrist, a nurse practitioner, and a social worker.

A three-year trial is not the perfect solution to my original quest to end the six-month wait. I am confident, however, that the results from the Ontario pilot program will mirror historical transplant success rates among individuals with alcohol use disorder, ensuring that the policy change becomes permanent.

I believe I was successful for many reasons. First, although I did this myself without representation by a lawyer, the law was on my side. The six-month wait is unconstitutional under the Canadian Charter of Rights and Freedoms. Second, I did my homework, revealing that the policy is not supported by medical research or science. Third, and most important to me, was having the right person in my court. My dream expert witness was Dr. John Fung, a world-renowned transplant surgeon from the University of Chicago. I cried when he offered to help. I strongly believe that his affidavit played a major role in getting the respondents to the negotiating table.

I am incredibly proud that Ontario will be the first jurisdiction in North America to introduce such a dramatic policy change. The six-month wait is still imposed on patients with alcohol use disorder at most U.S. liver transplant centers, though since my quest began in 2012, several centers in the U.S. and Europe have implemented a more modern approach that accepts all liver transplant candidates on equal terms.

I can only hope that someday every transplant center in Canada and the rest of the world will follow Ontario’s lead. But it will always be heartbreaking to me that with all the evidence against the six-month wait, it still took a court battle over my husband’s death to end it in Ontario.

Debra Selkirk, a former communications professional, is now working to start the nonprofit, Selkirk Liver Society, dedicated to advocacy and support for individuals with alcohol-associated liver disease.