Lilia Zaharieva made headlines last year after losing coverage for her $250,000-a-year cystic fibrosis medication. She subsequently campaigned for help from the BC government, but the provincial Health Minister Adrian Dix replied that his hands were tied.
Her last hope was to apply for a compassionate coverage program with the drug’s manufacturer, reported CBC News. But Vertex, the company that makes Orkambi, would only consider patients with less than 40% lung function, a healthy liver, and no history of Orkambi coverage.
Because her student health plan in university had previously covered the drug, Zaharieva was disqualified. The company has now decided to scrap the rule requiring patients to not have previous coverage, meaning she is now receiving a long-term supply of Orkambi from Vertex.
Zaharieva says she’s elated the company changed stance, but now feels some survivor’s guilt. There are still others in BC living with rare diseases like cystic fibrosis, but have no access to the drugs that could save their lives.
“Now I feel like I'm the last one standing," Zaharieva said.
During her campaign, she learned that provinces make decisions about public funding for drugs based on cost-effectiveness and clinical results. But in the case of rare diseases, the limited number of patients can make it hard to collect evidence of a drug’s efficacy. That leaves the few who are afflicted in a real bind.
Currently, Vertex is submitting additional clinical data as proof of Orkambi’s effectiveness. Zaharieva, meanwhile, has sworn to not give up her advocacy work, saying that BC needs a new policy framework that accounts for expensive drugs to be used by a small portion of the population.
“The feeling of being hungry for air is horrible,” she said. “I have the energy to fight for more than just my life and I have the breath to march for the things that matter."