Dozens of people living with cystic fibrosis (CF) and their supporters staged a rally at the B.C. legislature on Wednesday to plead with the province to fund what they say is a life changing-drug.
The drug, called Orkambi, costs about $250,000 per year. It’s approved by Health Canada, but not covered as a benefit by any province in Canada.
Cystic Fibrosis Canada calls the drug a “major advancement” in therapy for the disease, and says about one in four people respond to it.
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Todd Homenuk, one of the people attending Wednesday’s rally, is taking the drug. He said in the three years since he started using it, Orkambi has made a major difference.
That experience, he said, has made him look back at the time he spent in hospital as a young person, and how it could have helped the other patients he knew there.
“There was this great camaraderie among these people. Now that may be really heartwarming, but the fact is, before I was 20, all those kids were dead. Every one,” he said.
“We have a chance right now to make it so my generation is the last one to deal with that.”
For now, he’s covered by private insurance — but Homenuk said he worries constantly that he’ll lose access to the drug.
Melissa Verleg, who also lives with CF, has helped spearhead the drive for funding.
She said Health Minister Adrian Dix has so far refused to meet with her — or the drug manufacturer, Vertex Pharmaceuticals.
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“They made an unsolicited offer to Adrian Dix on Oct. 31, which he declined and did not sit down and negotiate with. It is absolutely possible there will be a lower price if Adrian Dix does his job and negotiates the price,” she said.
Health Minister Adrian Dix said he understands the desperation and frustration of people calling for Orkambi.
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But it is up to Vertex to make its case to the federal Common Drug Review (CDR) to qualify for PharmaCare funding Dix said.
“On Nov. 13 the new guidelines, which would allow them to submit all the evidence they would need to submit, were put in place,” Dix said.
“So really, at this point, it’s up to the company to follow the rules in Canada.”
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Orkambi has previously been reviewed by the CDR, which recommended it not be covered because of lack of evidence that it’s effective.
In September, Vertex told Global News it had ample evidence of the drug’s efficacy, but that the CDR won’t accept it because it is not from placebo-controlled trials.
-With files from Rumina Daya, Megan Turcato and Jon Azpiri