'This is having such a human toll': B.C. student with CF fighting for drug coverage
Published Friday, November 24, 2017 9:00AM EST
A student at the University of Victoria with cystic fibrosis says her supply of an expensive drug treatment is dwindling, and she’s growing tired of fighting the province for access to more.
For the last year, Lilia Zaharieva has been taking the drug Orkambi, made by Vertex Pharmaceuticals, to treat her illness.
The drug targets the specific gene mutation that can cause CF -- not just the symptoms – and is designed to improve lung function. Cystic Fibrosis Canada supports the use of the drug, which it says can slow disease progression.
But Orkambi is expensive. A year’s worth of the medications costs about $250,000 per patient.
The University of Victoria Students' Society's health plan used to pay for the drug, but on Sept. 1, the student drug plan began to adopt the province’s drug formulary, or list of approved medications, and Orkambi isn’t on that list.
Now, with her supply of the medication is running out, Zaharieva is scared that her illness will worsen once she’s used up the last pill and is already growing tired of fighting for access to the drug.
"This is having such a human toll. I'm weary," she told CTV Vancouver Island.
Zaharieva, along with several fellow students, has been petitioning B.C. Health Minister Adrian Dix to work to get the drug approved for provincial coverage.
But B.C., like every other province, does not cover Orkambi because the national agency that evaluates new medicines in Canada – the Canadian Agency for Drugs and Technologies in Health (CADTH) -- has twice rejected it.
Even though Health Canada has approved the drug, CADTH says "there is insufficient evidence to conclude that (Orkambi) will improve CF outcomes." They’ve told Vertex they need to see results from a randomized clinical trial – research that could take years.
B.C.’s Drug Benefit Council has endorsed CADTH’s position.
Dix said Thursday the province has made adjustments to regulations so Vertex can resubmit its application. But Vertex says it will only resubmit if the provinces also enter into price negotiations. The provinces say they won’t discuss pricing until the drug is approved.
Zaharieva is angry that access to the drug she needs is being blocked by a back-and-forth that she doesn’t have time for.
"I'm devastated by this decision. Bureaucracy doesn't wait for lives," she said.
With a report from CTV Vancouver Island’s Scott Cunningham