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Cystic Fibrosis sufferer Erick Bauer, 28 holds a morning dose of the medications he must take at his home in Toronto on May 09, 2013. (Deborah Baic/The Globe and Mail)
Cystic Fibrosis sufferer Erick Bauer, 28 holds a morning dose of the medications he must take at his home in Toronto on May 09, 2013. (Deborah Baic/The Globe and Mail)

Ontario to cover cost of drug used to treat rare form of cystic fibrosis Add to ...

Ontario Premier Kathleen Wynne says the province’s health insurance plan will cover the cost of an expensive drug used to treat a rare form of cystic fibrosis after reaching a deal with the drug’s U.S. manufacturer.

Twelve-year-old Madi Vanstone of Beeton, Ont., has become the poster child for people who suffer from the rare disease and need the drug, Kalydeco.

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The list price is $422.40 per tablet, meaning the drug would cost $308,352 per year.

Madi had met with Ms. Wynne to ask that the province cover the cost of the drug, which she said made a huge improvement in the quality of her life.

Alberta led the negotiations with the drug manufacturer – Vertex Pharmaceuticals – a process that took months after the provinces complained they were being charged more than other countries for Kalydeco.

Ms. Wynne said during a campaign stop in Ottawa that the timing of the announcement was not related to the Ontario election, and says she’s just glad Madi and others who need the drug will now have it covered.

It’s estimated there are about 118 people across Canada that are treated with Kalydeco.

A small group of children had received the drug through clinical trials where Vertex Pharmaceuticals did cover the cost for several months “on compassionate grounds,” but the company wouldn’t say how many children were helped under that program.

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