BC student, cut off from $250,000-a-year medication, seeks health minister’s help

The student’s private insurer has stopped covering it, and it’s not under the provincial plan

BC student, cut off from $250,000-a-year medication, seeks health minister’s help
A University of Victoria student who relies on an expensive drug is in desperate need of coverage after her private insurer stopped covering the medication.

Since last year, Lilia Zaharieva has been dependent on Orkambi, a cystic fibrosis treatment that costs $250,000 a year, according to the Times Colonist. The drug targets the cause of a certain type of cystic fibrosis called Double delta F508; manufactured by Vertex, it earned the company $1 billion in revenue last year, and is projected to bring in between $1.1 billion and $1.3 billion in 2017.

Before she took the drug, Zaharieva experienced sickness so severe that she started looking into options for medical assistance in dying. A few months after Orkambi was approved for sale in Canada, it was offered by her cystic-fibrosis clinic, and she started taking it.

People living with cystic fibrosis can experience difficulty breathing because of severe mucous blockages in their respiratory airways. According to Zaharieva, stopping the medication means she’ll have reduced lung capacity and will be at higher risk of infection. In two years, her lungs could stop functioning completely.

The medicine was originally covered by health insurance provided through the University of Victoria Students’ Society. Recently, however, it switched its insurance coverage to a provincially managed formulary that doesn’t include the drug.

The students’ society has voted to give her an additional month of coverage so she’ll have time to find another provider. Public coverage is not available in Zaharieva’s case, since BC’s pharmacare plan does not cover Orkambi.

According to BC Health Minister Adrian Dix, Orkambi has been reviewed by Canada’s Common Drug Review board and the Drug Benefit Council; both were against having the drug covered by pharmacare programs across Canada because they were not given adequate proof of its therapeutic benefits.

“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 BC,” Dix told the Times Colonist.

Zaharieva has called on Dix to reopen discussions and get the drug covered under the province’s plan. Dix agreed that her situation is serious, especially given Orkambi’s cost. “In this case the manufacturer is charging $250,000 per person which is a staggering amount for anybody,” he said.

Zaharieva said she’s also filed an appeal to have the drug’s cost covered by Vertex, but that was rejected.

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BC refuses coverage for regulator-approved, life-saving cystic fibrosis drug