‘I feel for families,’ says Inuk woman who questioned liver transplant policy

TORONTO — An Inuk woman with acute liver failure spoke of her sadness that Canadians are dying due to rules that prevent some from receiving organ transplants, as she gave an emotional news conference Tuesday from her hospital bed.

The visibly exhausted Delilah Saunders, 26, expressed concerns that while she appears to be recovering, others with alcohol-related liver disease often aren’t allowed to go on a waiting list for transplants that will keep them alive.

“I’m really feeling for the families who have lost loved ones due to these policies, due to small technicalities and things that could have saved so many lives,” she said at the University Health Network hospital in Toronto, where she was transferred earlier this week from Ottawa.

Saunders’ struggle has drawn support from Amnesty International and Aboriginal groups, as friends and family of the advocate for Indigenous women learned of a rule in Ontario that requires people with alcohol-related liver disease to have abstained from drinking for six months before being eligible for a transplant.

Saunders’ family has said she was told she wouldn’t be eligible due to the Ontario rule, and they have argued it’s a policy that discriminates against Indigenous citizens, the poor and other marginalized groups, while being based on shaky science.

Transplant doctors have cited evidence that some alcoholics return to drinking after a transplant of the organ, and the transplant may not succeed as a result. They say this poses ethical issues for clinics who have other recipients in need of the donated organ.

As the issue unfolded and vigils were held, offers from Canadians to provide the young woman from Labrador with part of their liver through the living donor program flowed in, and the young woman said it had been “beautiful and encouraging.”

With relatives nearby, Saunders spoke of living through auditory illusions, struggling to sleep and a roller-coaster ride of emotions as she struggled to regain her health.

Now, she is urging all Canadians to get out and register to donate organs, so that the shortage of livers won’t drive policy-making.

Data from 2015, which are the most recent available, show that 127 people in Ontario died on a waiting list for an organ. Meanwhile, so far this year, 377 people whose organs could have been used didn’t register and their families declined to consent.

Her call for more organ donations was echoed by Ronnie Gavsie, the chief executive of the Trillium Gift of Life Network, Ontario’s organ donation agency.

“The way we’re going to win here is if all of us, everyone of us who are 16 years of age or older, register consent at beadonor.ca. It takes less than two minutes,” Gavsie said in an interview with The Canadian Press on Monday.

Gavsie also said the donor agency wants to accelerate a pilot project that waives a six-month sobriety requirement for drinkers seeking liver transplants.

“Our goal is to start it as early as possible, which means accelerate the planning of the pilot and the resources required to support it,” she said.

However, the executive said the pilot program still needs to hire people at the transplant centres and for the program.

A spokesman for the Ontario Ministry of Health said the department expects to receive a business case for the pilot program from Trillium by February. “After receiving the business case, the ministry will be able to assess funding required to proceed,” wrote David Jensen in an email.

Meanwhile, the debate over whether there is enough evidence to simply waive the abstinence requirement is continuing.

Debra Selkirk, whose husband died of liver failure in 2010, led a two-year court battle over the abstinence policy that led to the introduction of the pilot project.

She argues there is enough evidence to end the abstinence rule, citing an analysis completed at the University of Pittsburgh in 2008 of 54 studies over 22 years suggesting the relapse rate of a return to heavy alcohol use was 2.5 per cent.

However, Dr. Nazia Selzner, transplant liver specialist in the multi-organ transplant program at the University Health Network, said in an interview there is a wide variation in the rate of relapsing to alcoholism after a transplant.

She said studies vary between 10 per cent of patients relapsing up to “as high as 90 per cent,” with one of the issues being that many of the studies don’t have a clear enough definition of what constitutes a relapse into drinking.

She also noted a long-term study published in 2010 in the American Journal of Transplantation that found 20 per cent of the 208 patients with alcohol-related liver disease studied over a number of years relapsed into heavy drinking.

Saunders said she plans to remain in hospital for the time being, as she continues to recover.

“I’m not completely out of the woods after this. The staff here have been amazing. Same as Ottawa General (hospital),” she said.

“It’s unfortunate there are policies that could have found me in a different fate. My next step is to see a hepatologist and see what damage has been done for the long term.”

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