The family of an Indigenous rights advocate is considering legal action against an Ontario organ transplant agency after she was denied access to a liver transplant wait list based on a history of alcohol use disorder.
Delilah Saunders, 26, an Inuk woman from Happy Valley Goose Bay, N.L., remained in critical condition after being admitted to an Ottawa hospital Friday afternoon. She was diagnosed with acute liver failure.
Friends said Saunders had been taking acetaminophen for jaw pain, and that may have led to liver failure.
“The doctor said she needs a liver transplant,” said her best friend, Rebecca Moore, who travelled from Nova Scotia to be with her.
“Then they said she can’t have one.”
The policy in question
The agency that co-ordinates organ and tissue donations in Ontario, Trillium Gift of Life Network (TGLN), says in a document outlining its “listing criteria” for transplant patients that if they have any of the following, they aren’t candidates for liver transplantation:
- Unstable psychiatric disorder, especially one likely to interfere with compliance.
- Any alcohol and/or illicit drug misuse within six months. For patients with alcohol-associated liver disease, the inability to abstain from alcohol and/or illicit drug use for six months.
- Previous documentation or current unwillingness or inability to follow the advice of health professionals.
- Social support/compliance issues “prohibiting adherence” to medications and/or followup care after surgery.
In an emailed statement to CBC News, TGLN said the criteria were based on “jurisdictional reviews and advice from expert working groups” with whom they are currently finalizing a three-year pilot program “to determine if there is an evidence-based basis to change the criteria.”
TGLN wasn’t able to clarify how people with histories of alcohol use disorder would become eligible under the program, but it’s expected to launch in August. In the interim, TGLN said, “the listing criteria for liver transplants remain unchanged.”
The policy is consistent with most transplant programs in North America, but Saunders’s family and friends say they’re worried she may not be able to wait that long.
‘We were stunned’
Moore, who calls the six-month sobriety policy “discriminatory,” said the doctor who initially treated Saunders referred to the listing criteria and confirmed Tuesday that Saunders was ineligible.
A spokesperson from the hospital where Saunders is being treated clarified that it does not perform liver transplants, but that doctors refer patients to other health-care providers under TGLN’s criteria.
“We were stunned,” said Moore. “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 said she had reached “huge” personal milestones over the past year. Others close to Saunders confirmed she had been seeing therapists and scheduled appointments for addiction prevention treatments this month.
“She’s on her way,” said Moore. She said the details of Saunders’s sobriety shouldn’t matter in such unfortunate circumstances.
‘Doing everything we can’
Moore said she wants TGLN to waive the policy immediately and save her best friend’s life.
She said the family is seeking a “human rights-related” court injunction that could force the organization to provide her access to treatment. 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,” said 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 had recently finished a tour of Ontario schools, speaking to students about her experiences as an Indigenous woman and 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. This year, she was given an Ambassador of Conscience Award from Amnesty International.
She has gained a reputation in Atlantic Canada for being a “strong and smart Inuk woman,” say friends.
Policy already challenged
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, said 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,” said Selkirk.
Since the program was announced in September, Selkirk said she has been made aware of four people dealing with no access to transplants under the sobriety policy.
Selkirk said the Saunders family’s consideration of legal action against TGLN might be the only option.
“They should all be assessed for transplants. They have a right under the law to equal access to health care.”