It was about a year ago that doctors at St. Michael’s Hospital told 29-year-old Patrick Terry he’d better stop drinking. He didn’t, and told his mom he doesn’t even remember that happened.

But, as he now lies in Toronto General Hospital with days or months to live, that moment might be what’s keeping Terry from receiving a new liver that could save his life, despite Ontario’s pilot program for people with alcohol associated liver disease that lifts a six-month sobriety requirement for those who qualify.

Terry’s case sheds light on the plight of patients with alcohol-associated liver disease who are still hitting roadblocks to get a spot on the liver transplant list.

The sobriety requirement was eliminated for certain patients in Ontario in 2018 for a three-year testing period, meaning anyone with alcohol associated liver disease who meets the pilot program’s requirements can be assessed for a new liver regardless of when they had their last drink. But guidelines from the Trillium Gift of Life Network, the province’s organ and tissue donation agency, say patients can be ruled out if there’s evidence they won’t follow the advice of health professionals, along with a host of other criteria they must meet.

Terry’s mother, Margaret Terry, said she was told by doctors that the fact he had been warned to stop drinking and at one point had been referred to a rehab program means he doesn’t qualify.

She said she wants the transplant guidelines to make room for an exception, saying because he’s so young he deserves a chance to change his life.

“Patrick’s not getting a second chance,” his mother said. “The Ministry (of Health’s) rules are prejudicial against alcoholics and all mental health. The kind of people who are drinking are drinking for a reason, because they’re depressed or it’s in their genes.”

Terry was admitted to hospital in July with alcoholic hepatitis, and though he hasn’t had alcohol since then, his failing liver isn’t regenerating as doctors had hoped. None of the liver medications are working, his mother said, and he has reached end-stage liver disease. She said doctors told her Terry has a 10 per cent chance of surviving three months let alone staying sober for six. A transplant is the only hope, doctors told them.

“The liver transplant team makes a team decision to list a patient for liver transplant. It is important to emphasize that it is a team decision and not a single individual who decides,” Dr. Nazia Selzner, a transplant hepatologist in the multi-organ transplant program and medical director of Toronto General Hospital’s live liver program, said in a statement to the Star.

“The decision is made based on review of each patient’s medical and psychosocial situation and following the provincial guidelines as well as the ALD (alcohol-associated liver disease) pilot protocol criteria from Trillium Gift of Life.”

She added, “Patients with alcohol-related liver disease who have been advised previously to stop drinking due to negative consequences of alcohol on their liver disease and continue drinking are excluded. Particularly when there is documentation regarding advice to stop.”

The Trillium Gift of Life Network maintains that the six-month waiting period is the global best practice for liver transplants, though several jurisdictions are evolving their policies. The pilot program is Ontario’s way of gathering data on whether a permanent change would be beneficial, and it was the first jurisdiction in North America to eliminate the waiting period. It came about after an Ontario woman named Debra Selkirk, whose husband Mark Selkirk died of liver failure in 2010 while waiting out the six-month abstinence period, filed a constitutional challenge against the abstinence policy in 2015.

In August in B.C., officials apologized to a man with end-stage liver disease after he filed a complaint with the B.C. Human Rights Tribunal over that province’s six-month sobriety requirement. David Dennis said he was told he didn’t qualify for a transplant as he had only been sober since June. BC Transplant officials said there had been a “misunderstanding” as the six-month abstinence policy was removed in B.C. in May.

Because of confidentiality rules, Terry’s doctors were unable to speak directly about his case.

“It was a difficult decision to hear about,” said Dr. Murray Krahn, a general internist at Toronto General Hospital who was one of several doctors treating Terry. “He’s a pretty young guy with a lot of potential.”

Krahn is not a transplant doctor and said he isn’t deeply involved in thinking about transplant priorities. He said he can understand why some people might feel that giving a liver to someone with a history of alcohol addiction might not seem prudent, given that they may not be able to take care of it afterwards.

But Krahn said, “My feeling is that there has to be some flexibility in these rules to take into account individual circumstances, particularly age.

“If we’re allocating organs, the principle should mainly be who can benefit the most,” he said. “If alcohol prevents people from benefiting, that’s one thing. But if alcohol is used as a reason to prevent people from accessing (a liver) even though they could benefit, that’s a different story.”

Terry is a vibrant six-foot-tall Sheridan College graduate working in the film industry, his mother said. He did well in school, graduating as an Ontario Scholar, and several awards at Sheridan College. Since he’s been hospitalized, he’s lost 40 pounds and lost some of his cognitive abilities, she said.

“He’s dark yellow. He looks like he’s been dipped in iodine,” she said. “I’m his mom and I’m watching him fade away … It’s devastating.”

Terry’s battles with alcohol started a few years ago, his mom said, and he ended up in hospital before. In 2015, he was able to stop drinking for six months, but then fell back into it. She said she tried to help but “I just didn’t have a handle on it.”

“The family has had a history of addiction on both sides,” Margaret Terry said. “But those who were addicted have surpassed expectations after rehab and now lead successful lives with wonderful careers.”

Her sister and two of Terry’s friends are a blood match and willing to donate their liver if needed, she said, but unless he’s on the transplant list, none of those options can be considered.

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Now she’s just praying for a miracle.

“My son is not a hopeless alcoholic,” she said. “He’s worth saving.”

Clarification – September 9, 2019: This article was edited from a previous version to make clear the sobriety requirement was eliminated for certain patient who qualify only. It has not been eliminated for all patients.