Spirit award honours late social justice advocate Lilia Zaharieva
Image credit: Victoria News
Intelligent, curious and a passionate advocate for transforming our social care systems, Lilia Zaharieva left a deep impression on the people she met.
A tireless advocate, she took up a legal fight in 2018 to help others like her living with cystic fibrosis access an expensive breakthrough drug through public health plans. Zaharieva presented at conferences internationally about her experience of being taken into, and then aging out of, foster care. And she delved into her own lived experience to offer hard-won wisdom and hope to others through Inside Out, an education and support group that she founded in her twenties.
Zaharieva died on June 17 at the age of 35. Emeritus professor Jim Anglin, who taught Zaharieva before hiring her as a research assistant and co-writing academic papers with her, says Zaharieva left an indelible mark on the School of Child and Youth Care, where she pursued a bachelor’s degree.
“Lilia was an extraordinary woman who took on many challenges on multiple fronts and she was an inspiration for all who knew her,” he said. “In everything that she did, Lilia drew on her powerful intellect, strong sense of justice and her lived experience.”
The University of Victoria is establishing an endowed scholarship in her honour, called the Lilia Zaharieva Spirit Award, for students who have lived experience in foster care.
Zaharieva was open about her own experiences in the child welfare system. Born in Bulgaria, Zaharieva moved to Canada at age five with her family. In an article she co-authored with Anglin published in the International Journal of Child, Youth and Family Studies, Zaharieva spoke about the effect of being removed from her family and placed into care at age 14.
“I have found that all too often young people have been placed in the care of the state while too rarely experiencing the feeling of being cared for, or even being cared about,” she said in the article.
After aging out of care at 19 and meeting others like her, Zaharieva fought to make social systems fairer, caring and just. She drew on her experiences to establish Inside Out, an education and support group for young people who have a parent with mental illness.
As part of her advocacy, Zaharieva presented at conferences in Bulgaria, Washington, DC, and British Columbia, and helped write reports and scholarly articles that gave insight into the lived experiences of young people in care and offered strategies to better support them to succeed.
In 2018, Zaharieva made national headlines as one of the lead plaintiffs in a class-action lawsuit against the BC and federal governments and two drug-approval bodies for failing to provide coverage for an expensive breakthrough drug called Orkambi to treat cystic fibrosis, a rare genetic disorder that damages the lungs, digestive system and other organs in the body.
At a TEDx Youth event in Victoria in 2012, Zaharieva joked that her friends had nicknamed her “Lil Wheezy” because of her chronic cough. Within a few years, however, her condition had deteriorated. By her late twenties, Zaharieva had lost half of her lung function. She struggled with everyday tasks, including walking to class. Her lung specialist gave her two to five years to live. But Zaharieva’s prognosis changed when she started taking Orkambi. Suddenly, she could breathe deeply again.
Zaharieva eventually received Orkambi free on compassionate grounds from the drug manufacturer, but she continued to advocate for others with cystic fibrosis. Another better and less costly drug, Trikafta, became available in recent years and was publicly covered in BC last year, including for Zaharieva.
Anglin says Zaharieva worked tirelessly for justice despite the toll it took on her.
“She advocated strongly not just for herself. She wanted every person who needed that drug to have access to it,” he says.
In her Tedx talk, Zaharieva talked about her struggle to find a place in the world.
“It’s really only from that place of vulnerability that I found my true power,” she said. “I found I’m not afraid anymore to dream big. I always start that by looking deep within myself. It’s only from there I’ve turned insight into action to transform my life from the inside out.”
Anglin says he learned much from Zaharieva, especially about literature, which she loved. For her thirtieth birthday he gave her a $30 gift certificate for a bookstore. He told Zaharieva he looked forward to giving her a $40 gift certificate for her fortieth birthday.
“We are grateful for the way she challenged all of us to be and do better,” Anglin says.
Acting Dean for Human and Social Development Jennifer White says Zaharieva was a beloved friend, student and colleague to many people at UVic.
“This is such an enormous loss for so many,” she says. “She will be deeply missed for her fierce advocacy, brilliant mind and huge heart.”
Contribute to the Lilia Zaharieva Spirit Award.