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Cystic Fibrosis sufferer Erick Bauer, 28 holds some of the medications he must take at his home in Toronto on May 09, 2013. A new drug that has recently been approved to treat the disease. The drug is called Kalydeco and it’s the first drug to ever treat the cause of cystic fibrosis, rather than the symptoms. It’s not a cure, and although Bauer will not be able to take this drug, it represents a huge step forward in helping patients manage the disease. The problem is the drug costs about $300,000 a year in Canada. (Deborah Baic/The Globe and Mail)
Cystic Fibrosis sufferer Erick Bauer, 28 holds some of the medications he must take at his home in Toronto on May 09, 2013. A new drug that has recently been approved to treat the disease. The drug is called Kalydeco and it’s the first drug to ever treat the cause of cystic fibrosis, rather than the symptoms. It’s not a cure, and although Bauer will not be able to take this drug, it represents a huge step forward in helping patients manage the disease. The problem is the drug costs about $300,000 a year in Canada. (Deborah Baic/The Globe and Mail)

Provinces to cover costs of cystic fibrosis drug Add to ...

Alberta’s health minister has reached a tentative deal that will allow provinces to cover the costs of an expensive cystic fibrosis drug a year after a 12-year-old Ontario girl lobbied for the funding.

Alberta-led negotiations on behalf of all provinces to get Boston-based Vertex Pharmaceuticals Inc. to sell them Kalydeco at a price that they could afford to pay on their drug plans. The drug treats symptoms of a rare kind of cystic fibrosis, an incurable and fatal disease that fills the lungs with thick, sticky mucus.

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Madi Vanstone of Beeton, Ont., has been taking Kalydeco for nearly a year at a cost of $5,700 a month after 80 per cent insurance coverage. Her family camped outside Queen’s Park for months urging the province to help pay for the pills after they helped her gain 25 pounds, improved her lung function and eliminated her constant stomach aches, her mother Beth Vanstone said.

“I’m thrilled,” said Ms. Vanstone, who received a call from Ontario Health Minister Deb Matthews’ office informing her of the deal. “You get so excited that you want to not go overboard because you don’t know what the next glitch is.”

Alberta Health Minister Fred Horne said between 20 and 25 people in his province need Kalydeco, and this deal makes it possible to provide the drug to them at no out-of-pocket cost within a few weeks.

He called the talks with Vertex a long, hard slog. The turning point, he said, came after he met with executives from the company in Toronto earlier this month.

“The meeting we had a few weeks ago, I think made a difference,” Mr. Horne said in an interview on Friday. “We made it clear in no uncertain terms that Canadians expect to be treated fairly. So I do think that had something to do with spurring this.”

The talks between Vertex and Alberta hit continuous snags after the company refused to budge on a price of $309,000 a year.

Now that a final agreement is looming, Ontario is waiting to hear about the cost and other details from Alberta before it signs its own agreement with Vertex and makes the drug available to the public, said Suzanne McGurn, assistant deputy minister and the province’s Public Drug Program’s executive officer.

“It would be premature to make that commitment,” she said. “We’re pleased that a tentative agreement has been reached and we would anticipate a formal agreement to be very soon.”

Kalydeco will help about 100 Canadians with cystic fibrosis who have the G551D mutation out of a total of 4,000 who have the disease, said Ken Chan, vice-president of advocacy and research at Cystic Fibrosis Canada.

“Until we see the ink dry on any written agreement, we remain cautiously optimistic,” he said, adding the non-profit organization has been advocating for the government to pay for the drug since 2012.

Mr. Horne said health ministers across the country worked together on the negotiations as part of the Pan-Canadian Pricing Alliance, a relatively new pact under which the provinces deal en masse with drug makers in a bid to force down prices.

He said the Kalydeco experience makes it clear Canada needs a national drug-coverage program for rare diseases. High-cost drugs that benefit only a small number of Canadians are a fast-rising part of provincial drug bills.

Follow on Twitter: @kellygrant1

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