Lilia Zaharieva.Courtesy of Bryn Milward
Lilia Zaharieva: Activist. Author. McDonald’s gourmand. Friend. Born Feb. 25, 1987, in Sofia, Bulgaria; died June 17, 2022, in Victoria, by suicide; aged 35.
Lilia Zaharieva grew up knowing, after being diagnosed with cystic fibrosis at age two, that her next breath would never be a given – she would have to fight to make it count.
Born in Sofia, Bulgaria, she immigrated to Canada with her mother at age 6. Lilia had fond memories of her grandparents’ farm there, and her love of the rich food, Balkan music and traditional dancing never left her.
Lilia had an uncanny talent for finding four-leaf clovers and an unironic appreciation for McDonald’s cheeseburgers which, growing up in Bulgaria where fast food is considered a luxury, she couldn’t help but feel were extravagant. She knew how to turn ordinary get-togethers into memorable events. She once transformed a barbecue into a backyard Olympics with an opening ceremony set to Chariots of Fire. Lilia was sharp-witted but not boastful, chic but unpretentious. She was the one friends wanted to call with news; Lilia would show up with a bottle of sparkling wine to celebrate or commiserate. Though her life had its own set of struggles, she always met them with humour, intelligence and determination.
Lilia thought often about the mark she would leave on the world, having been told at a young age that her diagnosis made it unlikely she would live to age 32. In her early 20s, she started to advocate for policy changes. She was an outspoken voice for expanding access to drugs treating cystic fibrosis, along with greater mental health support and educational opportunities for youth in foster care.
One of her greatest ambitions was to be a published author, which she accomplished in 2021, when a chapter she co-wrote on promoting success for post-secondary students from foster care was published in Protecting Children: Theoretical and Practical Aspects. It was the culmination of years of research, studies and lived experience, as Lilia was in the foster care system from age 14 until aging out at 19.
She pursued a degree at the University of Victoria school of social work while conducting research and managing her illness. When hospitalized, she continued her work and held meetings in the hospital instead of on campus.
Then, in 2017, she found out that she would lose access to Orkambi, a cystic fibrosis drug that helped her survive. With only an eight-day supply of pills left, she researched drug policy until she was an expert and launched a campaign calling on B.C. to cover the medication for all patients in need.
Community members fundraised to help her keep taking the drug, until the pharmaceutical company granted her free compassionate coverage. But Lilia continued to push, starting an equitable drug access campaign and even suing the B.C. government until the province finally covered life-altering drugs for all cystic fibrosis patients last year.
Lilia learned the impact of her advocacy during a hospital stay this spring. A nurse told her that they hadn’t had a single young patient admitted with cystic fibrosis since drug coverage had been expanded. Lilia’s spirits soared. “It was surreal, beyond imagination really,” she later wrote.
Lilia did not view life as a gift, but rather a right, and looked unflinchingly at the dark moments as well as the light.
“I have fought CF, my beast and my burden, and in return it has made me spiritually stronger,” she wrote at age 13. “I don’t believe in miracles. I believe in rising and falling, perseverance and myself.”
Her friends admired her strength, but wished she hadn’t had to fight so hard, so often. Her illness and many years fighting for drug access took a mental toll, and she experienced burnout from constant advocacy and untreated trauma from the medical system.
Lilia died by suicide at 35, and leaves behind a legacy of activism, tenacity and compassion. The University of Victoria has created the Lilia Zaharieva Spirit Award in her honour.
Emily Fagan and Ashly Dyck were Lilia’s close friends.
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