Katelyn Verstraten
Special to The Globe and Mail
Published Friday, June 20, 2014
Last updated Saturday, June 21, 2014

Like many 21-year-olds, Kelsa Hague is trying to figure out her career, hang out with friends and care for her assorted pets. But unlike other people her age, she is also waiting for a drug that could save her life.

It’s called Kalydeco (trade name for ivacaftor), and it’s being heralded as a “miracle drug” by cystic fibrosis patients who have experienced its life-changing effects. But this miracle comes at a cost of more than $300,000 a year, and while Kalydeco was approved for use in Canada in 2012, it has not been covered by the health-care system.

That is changing, at least for some Canadians. After more than a year of negotiations with a group representing the provinces and territories, Vertex Pharmaceuticals, which makes Kalydeco, announced this week that it had reached agreement to enable public plans to cover the cost of the drug. And on Friday, Cystic Fibrosis Canada announced that CF patients in Ontario now have access to Kalydeco through the provincial drug program, effective immediately.

But each province and territory must decide whether it will cover the cost of the drug at the negotiated price – raising the possibility that coverage for Canadian patients may depend on where they live.

Kelsa’s mother, Kathy Craik, says she is not surprised at this caveat. “It figures,” Ms. Craik says, adding that even if the price has been lowered, unless the province of British Columbia decides to cover the drug, it will remain out of reach for her daughter. “I guess we’ll just have to wait and see.”

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