Victory for medical research, patients with alcohol-associated liver disease
A deadly policy applied at liver transplant centers around the world — the notorious 6-month wait imposed on patients suffering from liver failure caused by alcohol use disorder — has fallen to a court challenge in Ontario, Canada.
That 6-month wait ended the life of my husband, Mark Selkirk, in 2010. Five years later, I filed a constitutional challenge against the policy without the assistance of a lawyer. Soon thereafter, in a bid to avoid court, the government agency responsible for waitlist criteria asked me to stay my application and allow them to do the work the court would have ordered. During preliminary meetings, Ontario’s Trillium Gift of Life Network finally acknowledged that the 6-month wait is not supported by medical research or science.
On September 18, 2017, I announced that in 2018, Ontario will become the first jurisdiction in North America to assess all patients with alcohol-associated liver disease (ALD) without proving they are alcohol-free.
The history of the policy left me wondering how it has withstood scrutiny for so long. Liver transplantation was declared a clinical service at a consensus conference organized by the U.S. Surgeon General in 1983. By 1988, liver transplant pioneer surgeon Dr. Thomas Starzl, writing about patients transplanted for alcoholic liver disease, cited a “remarkable record of rehabilitation;” he also confirmed their survival and long-term prognosis was as good as, or better than, patients transplanted for other etiologies.
As research papers continued to echo Dr. Starzl’s position, liver transplant centers remained adamant they would not accept ALD patients who were not alcohol-free for 6 months. United Network for Organ Sharing (UNOS), America’s organ transplant network, leaves the decision to individual hospitals. In some cases, such as Ohio, state policy dictates transplantation criteria. In other cases, the policy is set by insurance companies, with a wait as long as two years. The wait often results in death.
The policy, based primarily on moral judgement of patients with alcohol use disorder, is also supported by an acute fear that poor public perception of alcohol use disorder will negatively impact donation rates. Concerns were heightened by public outcry over early liver transplants for celebrities such as Larry Hagman, David Crosby and George Best.
But neither return to drinking or public reticence to donate have ever been supported by medical research or data. Patients rarely return to heavy drinking and waste the organ.
Over time, advocates within the liver transplant community have slowly swayed medical opinion, influencing new practice guidelines.
I connected with a very special advocate as I prepared my court documents. I had to include an affidavit from at least one expert who supported my position. I asked myself who my “dream” witness would be. There was only one answer - world-renowned surgeon Dr. John Fung, Director of the University of Chicago’s Transplantation Institute. I thought, I have nothing to lose, so I contacted him. I cried when he agreed to help.
Dr. Fung’s published research supported my case. He held the inaugural professorship at the Thomas E. Starzl Transplantation Institute at the University of Pittsburgh as international liver transplant surgeons came to the University of Pittsburgh for training. He assumed the role of Chief of the Division of Transplant Surgery when Dr. Starzl retired two years later.
His affidavit concludes, “Liver transplant policy in the U.S. continues to be driven in most centers by social norms of poor public perception of alcohol addiction.”
Dr. Fung’s conclusion is reflected in new practices at individual centers such as Johns Hopkins and Weill Cornell Medicine. Other prominent U.S. transplant centers are also altering their approach, often integrating addiction treatment into their programs. The American Association of the Study of Liver Disease practice guidelines for alcoholic liver disease recommends: “Appropriate patients with end-stage liver disease secondary to alcoholic cirrhosis should be considered for liver transplantation, just as other patients with decompensated liver disease, after careful evaluation of medical and psychosocial candidacy.”
I am confident that positive outcomes during the three-year pilot program will ensure the 6-month wait ends permanently in Ontario. I also hope the size of Ontario’s program will promote change outside Canada. One of our centers, Toronto General Hospital, performed 64 living donor transplants in 2014, making it the largest living donor center in North America. That same year, Ontario’s two centers combined performed 234 liver transplants. By comparison, only 25 U.S. centers performed more than 100 transplants in 2016. Of those 25 centers, 13 perform living donor transplants, with the highest number at University of California – San Francisco at 29. Keck Medical Center reported 96 deceased donor and 15 living donor transplants in 2016.
I also feel great satisfaction when I remember that a lawyer who was once a constitutional adviser to a Canadian prime minister did not want to try to defend the policy in court. It tells me that even a rookie can compile a very strong body of evidence, if they dedicate enough time to it.
That pride will remain with me for the rest of my life.
[PIERRE-PHILIPPE MARCOU / Getty Images]