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Provinces want U.S. pharma company to finalize price for cystic fibrosis drug

Madi Vanstone, 12, appealed to Premier Kathleen Wynne to fund Kalydeco. CITYNEWS.

Provincial governments are banding together to pressure a pharmaceutical manufacturer to finalize a price for a drug that treats a rare form of cystic fibrosis.

The provinces are asking U.S.-based Vertex Pharmaceuticals, which makes Kalydeco, to come to Canada and explain why Canadians have to pay a premium for the lifesaving drug, which costs patients hundreds of thousands a year.

Alberta Health Minister Ed Horne says it’s unfair that Canadians have to pay more for the drug compared to Americans.

He says there is a small group of children who have been able to get the drug through clinical trials and Vertex has covered that.

But he says families haven’t been able to access the drug on compassionate grounds as is often the case with other drugs.

There are about 118 Canadians who would be eligible for the drug, including 21 in Alberta.