Delilah Saunders 'grateful and outraged' by struggle to get liver transplant

From her hospital bed in a Toronto transplant unit, Indigenous rights advocate Delilah Saunders says she's both "grateful and outraged"by her experiences since being denied a liver transplant for having a history of alcohol use.

Saunders, 26,wasadmittedtohospital two weeks agoand diagnosed with acute liver failure. She said shewas told by doctors that she needs a liver transplant, but because she's struggled withalcohol use within the last six months,was denied access to an organ transplant waiting list.

"The uncertainty of whether or not I need a liver or if Iwould get a liver that scaresme," said Saunders, whose condition has beenimproving slightly over the past two days.

"I'm not ready to die," she said.

The agency that co-ordinates organ donations and transplants in Ontario, Trillium Gift of Life Network (TGLN), requires patients withalcohol-associated liver disease to be alcohol-free for six months before being accepted as a patient.

The policy has been the focus of muchdebate since CBCNews first reported onher ineligibility, and has prompted Amnesty International andIndigenous organizationsto call for heracceptance.

Saunders said that, while she'd achieved "huge personal milestones" in her sobriety, she relapsedafter she spoke aboutthemurder of her sister, Loretta Saunders,during hearings of the national inquiry into missing and murdered Indigenous women and girls in October.

'Overwhelming' support

Saunders said she thinks the policy comes fromthe "stigmas"around alcohol-associated liver disease, and she's now fervently advocating to change that.Hearing from families of people who've been denied transplants because ofalcohol use, and died,has had an emotional impact on her, she says.

"I think there needs to be more support for people who face the stigma of addiction issues," she says. "[The policy] is damning someone who already has adisease."

While she is gaining back some strength,Saunders says she's still struggling with the symptoms of acute liver failure and exhaustion. "I've been unconscious for a while," she said. "I didn't even recognize my little brother when she showed up andhe's, like, my whole world."

Why Delilah Saunders believes she should get a liver transplant

7 years ago

Duration 1:45

The Indigenous rights advocate was denied access to a liver transplant wait list based on a history of alcohol use disorder.

Her brother Garrettwas one of dozensof supporters who came from across the country toOttawa, where she was first admitted,and Toronto to help organize vigils, housing and fundraising.Saunders says the support has been "overwhelming,"adding that complete strangers, and even a "bad ex-boyfriend,"have come forward offering tissue donations and other assistance.

The support has given her an opportunityto "get back to Delilah" that is, back to her former, activist self tostart advocating for the people who don't have a large support network orbackground in rights-issues.

"They don't know that they can challenge the policy, and demand better care. They can create change within a system that desperately needs to change."

Focusing on recovery

TGLNturned down an interviewrequest for this story. It instead re-issued an earlier statement saying the sobriety policy was put in place on the advice of physicians and will not change, if at all, until aftera pilot project next summer, which will determine if there is any "evidence-based basis."

Reports suggest that up to 100 people with histories of alcohol use could be accepted as patients.

Saunders says that while the program is an important step, it's leaving people like her at risk in the meantime.

Immediately,Saunders says she and her family are focusing on her recovery, butare keeping in touch with those who are supporting their push to change the six-month-sobriety policy.

"I'm so grateful to have my friends and family around me," she said. "I just hope that everyone is well, and keeps striving for a better [health-care] system for all of us."