Woman in critical condition from liver failure can't get transplant due to protocols

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., remainedin critical condition after being admittedto an Ottawa hospital Friday afternoon. She was diagnosed with acute liver failure.

Friends saidSaunders had been takingacetaminophenfor jaw pain, and that may have led to liver failure.

"The doctor said she needs a liver transplant," saidher 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 haveany 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, theinability 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 werebased on "jurisdictional reviews and advice from expert working groups" with whom they are currently finalizinga three-year pilot program "to determine if there is an evidence-based basis to change the criteria."

TGLNwasn't able to clarifyhow people with histories of alcohol use disorder would become eligible under the program, but it's expected to launch in August.Inthe interim, TGLNsaid,"the listing criteria for liver transplants remain unchanged."

The policy is consistent with most transplant programs in North America, but Saunders's family and friendssay they're worried she may not be able to wait that long.

More than 5,100 people have signed an online petition calling for Saunders to be accepted into the transplant program.

'We were stunned'

Moore, who calls the six-month sobriety policy "discriminatory," saidthedoctor whoinitiallytreatedSaunders referred to the listing criteria and confirmed Tuesday that Saunders was ineligible.

Aspokespersonfrom the hospital where Saunders is being treated clarified that it does not perform liver transplants, but that doctors refer patients to otherhealth-care providers underTGLN'scriteria.

"We were stunned," saidMoore. "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 wasunable to speculate how long Saunders has been sober, but saidshe hadreached "huge"personal milestones over the past year. Othersclose to Saundersconfirmed she had been seeingtherapistsandscheduled appointments for addiction prevention treatmentsthis month.

"She'son her way," saidMoore. She said the details of Saunders'ssobriety shouldn't matter in such unfortunatecircumstances.

'Doing everything we can'

Moore saidshe wants TGLN to waive the policy immediately andsave her best friend's life.

She saidthe family is seeking a "human rights-related" court injunction that couldforce 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," saidMoore.

"So we told the hospital we're going to do everything we can. She is avery-much-cared-for member of our community."

Saunders hadrecently 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 shewasmurdered in 2014. Delilah Saunders wrote a bookand 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 hasgained a reputation in Atlantic Canada for being a "strong and smartInukwoman," say friends.

Policy already challenged

In 2010, Debra Selkirk's husband Markdied from alcohol-related liver disease two weeks after he wasdenied a transplant. Shefiled 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,whonow serves as an advocate for patients with liver disease, saidwhile the program is a positive step, Delilah Saunders's case is another clear indication thatthe policyisleaving people at serious risk.

"[Delilah's] is the third case I've heard about this month," saidSelkirk.

Since the program was announced in September, Selkirk saidshe hasbeen made aware of four people dealing with no access to transplants under the sobriety policy.

Selkirk saidthe Saunders family'sconsideration of legal action against TGLNmight be the only option.

"They should all be assessed for transplants. They have a right under the law to equal access tohealth care."

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