For nearly three months, Amanda Huska has been in an Ontario hospital, part of it in ICU on life support, because of severe liver failure. Her history of alcohol use is getting in the way of her only potential treatment: a liver transplant.
"We were told last week that she has a couple of weeks left to live maybe a month if she's very lucky, " said her partner, Nathan Allen.
Huska, 36, was referred for a liver transplant to the University Health Network (UHN), the country's largest liver transplant center. However, she was rejected.
In documents shared with Â鶹ӰÊÓ, notes show Huska was declined after the Alcohol Liver Disease team at UHN reviewed her medical information and conducted a psychological review, noting their decision was based on "minimal abstinence outside of hospital."
Medical notes suggest she started drinking in her late teens and had tried -- unsuccessfully -- to quit. After periods of sobriety, she returned to alcohol, which could increase the risk of continued use after the transplant.
Allen says Huska registered for an addiction program early on in her hospital stay to stop drinking after she's discharged. Hospital records also say she suffers from anxiety.
"She expressed to me that this was a wake-up call for her, and wanted to turn her life around," said Allen.
Amanda Huska, 36, desperately needs a liver transplant. (Image courtesy of Nathan Allen)
The UHN rejection also disqualifies her from receiving a liver from a living donor, who would need to have a matching blood type and meet other medical criteria.
Nathan says he has a matching blood type and would be her donor if he could.
Access to "a life-saving procedure is being based on perceived poor behaviour," said Debra Selkirk, who has been campaigning for more compassion toward those with liver failure from alcohol abuse.
Selkirk's husband Mark, who was denied a transplant because of his drinking, died of liver failure in 2010.
Selkirk notes that many other chronic diseases lead to organ failure.
"People aren't turned away because they didn't exercise or because they work too much or they don't get enough sleep or they didn't follow doctor's orders. So, in Nathan and Amanda's case, you're seeing someone being told, 'You didn't follow doctor's orders, so we're not going to help you. We're going to let you die,'" she said.
Debra Selkirk is seen with her husband, Mark, who died of liver failure in 2010. (Image courtesy of Debra Selkirk)
Amanda's story is part of a growing and troubling trend, liver specialists say. Historically, liver cirrhosis or liver failure was a disease seen in older men with decades of alcohol use. But it's now showing up in younger adults and more women.
"We're seeing individuals under the age of 40 coming in much more commonly, with severe liver injury from alcohol, which is a change from say, when I trained over a decade ago," said Dr. Jennifer Flemming, an Associate Professor of Medicine and Public Health Sciences at Queens University.
Data collected by Flemming based on ER visits in Ontario showed that 36 per cent of the young adults turning up in emergency with liver disease were women. Closer analysis showed that those women had a 50 per cent higher risk than men of progressing to liver failure.
Those diagnosed with liver failure often need a liver transplant to survive, "and there is a very finite number of organs that are available for transplantation," added Flemming.
But the odds they'll get a liver, either from a deceased or living donor, are low.
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 6 per cent actually received a .
Nathan Allen says he would have been Huska's donor if he was allowed.
The criteria are strict, involving physical and medical tests and psychological assessments to determine who will benefit the most and for the longest.
"Unfortunately, while we're trying to figure this out, we're seeing many, many more young people who are suffering from the consequences and the inability to access transplantation," said Flemming.
Studies show transplants for alcohol-related liver failure are generally successful. There is an over 94 per cent survival rate at one year. However, about one in 10 people do return to drinking.
With some 600 Canadians waiting for a liver transplant from a variety of diseases, including hepatitis and cancer, deciding who gets a liver isn't easy.
"It's a precious gift. It's a limited resource," said Edmonton liver transplant surgeon, Dr. Saumya Jayakumar.
She wasn't involved in Amanda's case but notes the criteria for selecting recipients is fairly uniform across the seven transplant centers across Canada. Criteria generally include the patient's awareness of their addiction, their willingness to stop drinking, their mental status, and family support post-transplant.
"As you can imagine, making these decisions can result in a significant amount of moral distress with members of the team. So it's a decision made by the entire team and that involves any number of hepatologists, ... transplant surgeons or social workers," she told Â鶹ӰÊÓ.
Her research shows that the length of wasn't a factor in the outcome. In other words, both patients who abstained from alcohol for a benchmark of six months did similarly to those who were given "expedited" transplants, without the wait.
Jayakumar says that, in her opinion, mental health issues are most critical in deciding suitability.
"We can give you a brand new liver, but if we're not able to change all of the circumstances that led to the liver failing, then have we really done you a service?" she said.
'"I would say every single Transplant Center in Canada is having difficulty with both access to mental health funding for patients, as well as having access to mental health practitioners for transplant programs." she said.
About 86 per cent of patients in need of a transplant due to alcohol liver failure are rejected. (Source: University Health Network)
Meanwhile, when asked to comment on Amanda Huksa's case, officials from UHN provided a statement to Â鶹ӰÊÓ.
"We are unable to comment on specific cases due to patient privacy, but can say there are multiple criteria for living donor eligibility, only two of which are blood type and willingness. Recipient criteria is governed jointly by transplant centres and Trillium Gift of Life Network," they wrote.
Nathan, meanwhile, says he has found a hospital in Europe willing to perform a living liver transplant if Amanda defies the odds and survives long enough. He’s hoping to crowdfund the costs, which could rise above $300,000.
"I will do whatever I can to save her life, just like the medical profession should be doing here," he said.
Doctors say there are several different reasons why women appear to be at higher risk for alcohol-associated liver disease than men.
Women produce 30 per cent less of an enzyme in the stomach that breaks down alcohol. It means the effects of the alcohol can be more pronounced.
Women also have lower lean body mass and lower body water content. That means alcohol shows up in higher concentrations among women.
Studies also show that women are consuming more alcohol than they did historically, with products like fruity coolers targeting young women.
With excessive alcohol use over time, the liver stops processing it and produces highly toxic chemicals that trigger inflammation. That can kill healthy liver cells, and permanently damage the liver. The International Agency for Research on Cancer has labelled alcohol as a toxic, dependence-producing, and cancer-causing substance that is linked to cancer, and liver disease.
Canada issued in 2023, suggesting people consume no more than one drink per week.
If caught early enough the condition can be reversed. People can change their behavior and lifestyles by drinking less, which will allow the liver and other vital organs to regenerate and prevent the need for hospitalization, and even transplant when the patient is older.
Some health groups are pressing for more stringent alcohol strategies, concerned that expanded sales planned in Ontario this fall will boost alcohol consumption and the risk of liver diseases and cancer.
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