The family of a well known Indigenous rights advocate is considering legal action after she was told she can't access a liver transplant based on a history of alcohol use disorder.
Delilah Saunders was admitted to an Ottawa hospital Friday afternoon and was diagnosed with acute liver failure. She is in critical condition.
She had been taking acetaminophen for jaw pain, friends say, which may have led to liver failure.
"The doctor said she needs a liver transplant," says her best friend Rebecca Moore, who travelled from Nova Scotia to be with her.
"Then they said she can't have one."
The agency that co-ordinates organ and tissue donations in Ontario, Trillium Gift of Life Network (TGLN), requires a six-month alcohol abstinence period for chronic alcoholic liver disease patients seeking treatment.
Delilah Saunders is well known for her work as an artist, Indigenous rights advocate and the story of her sister, Loretta Saunders. (Submitted by Rebecca Moore)
'We were stunned'
Moore says the doctor that initially treated Saunders referred to that policy, and says it was confirmed Tuesday that Saunders was ineligible.
"We were stunned," says Moore, who calls the policy discriminatory.
"We asked them if there was any way around it, and they said no. But that's not good enough. We're not taking no for an answer."
Moore was unable to speculate how long Saunders has been sober, but says that she'd reached "huge" personal milestones over the past year. Others close to Saunders confirmed that she'd been seeing therapists and has scheduled appointments for addiction prevention treatments this month.
"She's on her way," says Moore, adding that the details of her sobriety shouldn't matter in such unfortunate circumstances.
Delilah Saunders had been touring Ontario secondary schools, sharing her perspectives as an Inuk woman, and her family's story involving MMIWG. (Submitted by Delilah Saunders)
Policy questioned
The policy is common to most transplant programs in North America.
Moore and the Saunders family found out that the TGLN criteria for treatment has already been challenged in Ontario. As a result a three-year pilot program allowing transplants and aimed at determining whether the criteria should change, is scheduled to begin in just eight months.
In the meantime, Moore says she wants TGLN to waive the policy and save her best friend's life.
The family is seeking a "human rights-related" court injunction that could force the organization to provide her access to treatment, she says. They're also reaching out to the public for assistance in finding a potential donor.
"Her chance of survival without a liver transplant is small," says Moore.
"So we told the hospital we're going to do everything we can. She is a very-much-cared-for member of our community."
Saunders, whose family is from Labrador, had recently finished a tour of Ontario schools, speaking to students about her experiences as an Indigenous woman and about her participation in the national inquiry into missing and murdered Indigenous women and girls.
Her sister, Loretta Saunders, was studying the condition of Indigenous women in Canada when she was murdered in 2014. Delilah Saunders wrote a book, and is working on an opera project related to her family's trauma.
She's gained a reputation in Atlantic Canada for being a "strong and smart Inuk woman," say friends.
Saunders with Andrew Noseworthy, with whom she is collaborating on a chamber opera. She was 'on her way' to a sober lifestyle when diagnosed with acute liver failure Friday, say friends. (Submitted by Andrew Noseworthy )
No changes, yet
In an emailed statement to CBC News, Trillium Gift of Life Network said its "listing criteria" for treatment was based on "jurisdictional reviews and advice from expert working groups," with whom they are developing the pilot program.
It added that, in the interim, "the listing criteria for liver transplants remain unchanged."
In 2010, Debra Selkirk's husband Mark died from alcohol-related liver disease two weeks after he was denied a transplant. She filed an application with the Ontario's Human Rights Tribunal to try to overturn Trillium's sobriety policy, which eventually led to next year's pilot program.
Selkirk, who now serves as an advocate for patients with liver disease, says that while the program is a positive step, Delilah Saunders's case is another clear indication that the policy is leaving people at serious risk.
"[Delilah's] is the third case I've heard about this month," says Selkirk.
Since the program was announced in September, Selkirk says she's been made aware of four people dealing with no access to transplants under the sobriety policy.
Selkirk says the Saunders' consideration of legal action against TGLN might be their only option.
"They should all be assessed for transplants. They have a right under the law to equal access to health care."
