Woman who was denied a liver transplant, after review highlighted alcohol use, has died

CTV National News: Amanda's transplant plight Avis Favaro reports on a woman with an alcohol liver disease who died in hospital after being rejected for an urgent transplant.

Questions are being raised about the case of a 36-year-old Ontario woman who died of liver failure after she was rejected for a life-saving transplant following a medical review that highlighted her prior alcohol use.

Amanda Huska died Aug. 15 after spending six months in an Oakville, Ont. hospital. She had been referred for an urgent liver transplant to the University Health Network Transplant unit in March. However, documents show the Alcohol Liver Disease (ALD) team at UHN rejected her in part because of "minimal abstinence outside of hospital."

Her partner Nathan Allan says he and her physicians petitioned four times for permission to get her a transplant, the only treatment that would possibly save her life. Huska, he said, stopped drinking as soon as she was diagnosed with Alcohol Liver Disease on March 3 and had also registered for an alcohol cessation program to begin once she was discharged.

"She wanted to live," he said. "This was a wake-up call for her, and she wanted to turn her life around."

Livers from deceased donors are a scarce resource and there are strict criteria based on physical and mental criteria for deciding who is a candidate according to transplant guidelines across the country.

One of her doctors, who asked not to be identified, told CTV News that the repeated rejections were distressing.

"No amount of determination from the (partner) could bend the decision,” said the physician. “There was no process for a second review or appeal. Just a harsh finality ... goodbye."

‘I was a match,’ says partner

Even pleas for a living liver transplant, with Allan offering to be her donor, were not entertained.

"I got my blood tested, I had MRI scans, I had a CT scan, I had ultrasound and blood compatibility test with her. I was a match," said Allan.

Transplant guidelines in Ontario and much of Canada require patients with ALD to first qualify for a deceased donor liver. If they don't meet that criteria, they aren't considered for a living liver transplant, even if one is available.

"It is outrageous to allow someone to die if someone is willing to help them live," said Debra Selkirk. She is a patient advocate who has been campaigning against what she calls “discrimination” against those who have an alcohol addiction. Her husband Mark was denied a transplant because of his drinking. He died of liver failure in 2010.

Access to "a life-saving procedure is being based on perceived poor behaviour," said Selkirk, adding that research shows alcohol use disorder is a medically recognized addiction that requires treatment and prevention.

Watching her die, slowly, was terrible for Allan.

"And from all the research that I did, it's 100 per cent preventable and huge success (rate) if the transplant is done early," he said.

The cost of allowing her to die

As Amanda’s liver disease progressed. Huska rallied and then worsened, spending 167 days in the hospital, the bulk of it (106 days) in ICU.

Allen says she required a ventilator, was treated for three bouts of sepsis - a potentially fatal blood infection – lost her hair, became confused, and had other complications. It was a costly, and medically burdensome journey.

Using the most recent data from the Canadian Institute for Health Information on hospital bed costs (2016), Huska’s time at the Oakville hospital likely cost over $450,000 - ($3,592 per day for ICU care) with an additional 61 days in a ward bed which likely cost about $1,200 a day

A liver transplant in Ontario is pegged at about $71,000 to $100,000 in Ontario based on data from 2019.

"It's a shame that so much money was spent keeping her alive under such horrendous circumstances and putting her family and her partner under such stress when the remedy was a lot cheaper and could have happened much, much sooner," said Selkirk.

The survival rate of patients with alcohol-related liver disease who receive a deceased donor liver transplant has steadily improved to reach 80–85 per cent at one year after a transplant.

Studies show that living liver transplants for alcohol liver disease have similar survival rates to other forms of liver disease.

But a study from the University Health Network showed that 86 per cent of those with alcohol-induced liver damage who were referred for transplants were rejected. Only 14 per cent of those who applied were accepted, and just six per cent received a liver transplant. There is a concern that patients with alcohol use disorder will relapse, damaging the new organ, though studies show the risk is around 15 per cent.

After initially profiling Huska's story, CTV News heard from several families who also watched family members die in hospital in Ontario and other provinces, after being refused liver transplants, because of the alcohol use guidelines.

In at least two cases, the families said they also had a potential living liver donor at the ready, but that option was rejected by transplant doctors – something Selkirk questions.

"They shouldn't have to pass a process to protect a scarce resource when a living donor is available," said Selkirk, referring to donated organs.

But doctors say that people with severe liver disease from alcohol use may need more than just a partial living liver donation to thrive.

"The sicker someone is, the more they benefit from getting an entire liver from a deceased donor, as opposed to part of the liver from a living donor," said Dr. Saumya Jayakumar, a liver specialist in Edmonton and an Associate Professor in the Faculty of Medicine & Dentistry at the University of Alberta.

"On the off chance their (living) liver doesn't work, they urgently get listed for a deceased donor," said Jayakumar. "We need to make sure that everyone who is a candidate for a living donor is also a candidate for a donor graft as well, " she added.

Toronto's University Health Network, which houses the liver transplant program where Huska was assessed, responded to CTV's request for a comment.

"We extend condolences to Amanda Huska’s loved ones at this difficult time. We are unable to comment on the specifics of this case due to patient privacy, but can say there are multiple criteria for transplant eligibility."

"Transplant waitlist criteria in Ontario is established by Ontario Health (Trillium Gift of Life Network), based on input from working groups that are comprised of transplant clinicians and administrators from each of the province’s transplant centres.”

Selkirk said she and Allan are both discussing a legal challenge to the liver transplant guidelines for those with alcohol use disorder “with people who have their own living donor.”

“It's not fair and it's not right, and hopefully we'll change that policy,” Selkirk said.

Rise in liver failure cases

Amanda's story is also part of a growing and troubling trend, liver specialists say, with studies showing a rise in alcohol use disorder.

In 2021, 15.6 per cent of Canadians over 12 engaged in heavy drinking – a term defined as five or more drinks for males, or over four for females, on one occasion at least once per month in the past year.

ALD-related liver transplants accounted for 15 per cent of all liver transplants in the country, according to a 2021 study.

"Given the scarcity of organs and the growing need ... with all the restrictions placed on eligibility in the setting of alcohol use disorder, we really need primary prevention and public health efforts to combat this," said Dr. Jennifer Flemming, who is an association professor of medicine and public health at Queens University in Kingston.

The Ontario government is expanding access to alcohol which experts have worried will add to the burden

"I don't know of any governmental efforts to identify problem alcohol use, alcohol use disorder, or alcohol-associated liver disease early and provide individuals with the support to access treatment," she added.