'It's quite terrifying,' says UVic student, fearing loss of drug for cystic fibrosis

Lilia Zaharieva says living with cystic fibrosis meant thinking her life had no future.

Over the space of one year, Zaharieva said her lung functioning declined 10 per cent. The expected rate of decline for a person with the disease is one to two per cent.

"It's quite terrifying," she told All Points West host Jason D'Souza. "I was losing the ability to do so many of the things that make me who I am. To be out in the world, to be productive, to be connecting. That's the most difficult part: to not be able to participate in my life."

Last year, the fourth-year student at the University of Victoria says she was put on the drug Orkambi — which targets the underlying causes of cystic fibrosis caused by a specific gene mutation — not just the symptoms. Her quality of life dramatically improved.

But Orkambi is expensive, costing about $250,000 per year per patient and B.C.'s provincial health plan does not cover it.

And on Sept. 1, her student coverage for the drug ended.

Zaharieva said her doctors have said that without it, she may have as little as two years left to live.

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Student plan can't afford it

She said her access to the drug came through the University of Victoria Students' Society's (UVSS) health plan.

The students' society says until Sept. 1, it maintained a medical and dental plan that provided access to Orkambi but then integrated the plan with B.C. Fair PharmaCare, which does not cover the drug.

"In early 2017, there was a large and unprecedented increase in the utilization of prescription drug benefits and the [UVSS] plan faced unsustainable cost increases," wrote Mackenzie Cumberland, the students' society's director of finance and operations.

"With this information, the 2016/2017 UVSS Board of Directors made the decision to adopt a provincially-managed formulary, B.C. Fair Pharmacare, which is used by most student health plans in B.C.

"This was necessary in order to maintain a health and dental plan at all."

Cumberland said it is impossible for the students' society's medical plan to pay for Orkambi, but supports provincial coverage of the drug.

Provinces won't pay either

Health Minister Adrian Dix blamed Zaharieva's loss of Orkambi on a change by a private insurance company, which he called "very, very difficult."

Dix said no province in Canada pays for Orkambi because the Common Drug Review and the Drug Benefit Council, which make recommendations on whether or not a drug should be covered by the public purse, were "unequivocal" in declining to support it.

"It's up to the manufacturer to make the case; and the manufacturer, nationally, in Canada, and in other jurisdictions, has failed to make the case for the therapeutic benefits," Dix said.

"It's also up to the manufacturer to decide how much is charged for this drug. In this case, the manufacturer is charging $250,000 per person, which is a staggering amount."

But Zaharieva says the data behind decisions to not pay for Orkambi from public funds was interpreted poorly and without due diligence.

She wants the province to negotiate a cheaper price for the drug with the manufacturer, Vertex Pharmaceuticals.

"It might sound like a great cost, but I can tell you, when your breath and your life depends on it, it's priceless," she said.

"I've seen what my life is like without Orkambi. And it's hardly any life at all."

With files from Richard Zussman, Jean Paetkau, CBC Radio One's All Points West and Chek News