A University of Victoria student is in a life-or-death fight to restore insurance coverage for a drug that treats her cystic fibrosis, and is asking B.C.’s health minister to intervene.
Lilia Zaharieva, 30, said her private insurer has stopped covering Orkambi, which costs $250,000 a year and treats the cause of her cystic fibrosis. Without it, she could face total lung failure within two years. The drug is not covered under B.C.’s PharmaCare plan.
“It’s very painful to think about what it would be like to lose Orkambi,” Zaharieva said, adding she only has 18 days left of her medication.
“The feeling of watching these magical pink pills dwindle away every time I take them is both terrifying and yet a call to action.”
She said if she stops taking the drug, her lung capacity will decline and she’s at higher risk of infection.
Zaharieva’s health insurance is provided through the University of Victoria Students’ Society, which told her it switched its insurance coverage to a “provincially managed formulary” that does not cover the drug.
The student’s society voted to cover Zaharieva for an additional month so she would have time to find another provider.
Zaharieva called on Health Minister Adrian Dix to negotiate to have the drug covered by PharmaCare.
Dix said on Thursday that he’s aware of Zaharieva’s case, which he called “a very serious situation.”
Orkambi was reviewed by Canada’s Common Drug Review board and the Drug Benefit Council, Dix said, both of which recommended that the drug not be funded by PharmaCare programs across the country. This is because the two expert bodies were not given sufficient evidence to support Orkambi’s therapeutic benefits. “So it’s a difficult situation, but we get advice from experts in the field and their expert advice was followed by [former health minister] Terry Lake who, in March, decided against listing this drug in B.C.”
Dix said he and health ministers across Canada are always putting pressure on pharmaceutical companies to lower drug costs.
“It’s also up to the manufacturer to decide how much to charge for this drug. In this case the manufacturer is charging $250,000 per person which is a staggering amount for anybody,” Dix said.
aZaharieva said she filed a compassionate care appeal for Vertex to cover the cost of the drug, but that was denied.
Cystic fibrosis is a genetic disorder that can clog the airways with mucous, making it difficult to breathe. Orkambi treats the cause of a certain type of cystic fibrosis, called Double delta F508.
Orkambi earned the company nearly $1 billion in revenue in 2016 and the drug is on track to bring in revenues of between $1.1 billion to $1.3 billion in 2017.
Zaharieva said in the year before starting the drug, her constant sickness drove her to the point that she began researching her options for medically assisted death.
She started taking Orkambi in 2016, a few months after it was approved in Canada. It was offered to her by her cystic fibrosis clinic.
Zaharieva said it would be a bigger burden on the public health care system if she goes off the drug and is forced to undergo a costly and high-risk double lung transplant.
She said she wants the chance to finish her degree in child and youth care and go to grad school. “I had to find the courage to dream of what life could be like and to plan for the future, and the moment I did, however beautiful and free it was, it was slammed shut.”
