04/03/2014 12:03 EDT | Updated 06/03/2014 05:59 EDT

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

TORONTO - Provincial and territorial governments are banding together to pressure a U.S.-based manufacturer to finalize a reasonable price for a lifesaving drug that treats a rare form of cystic fibrosis.

They're asking the chief executive of Vertex Pharmaceuticals to meet with the health ministers of Ontario, Alberta and Yukon and explain why Canadians have to pay a premium for Kalydeco, which costs patients hundreds of thousands of dollars a year.

It's unfair that Canadians have to pay more for the drug than Americans, to the tune of tens of thousands of dollars a year per patient, Alberta Health Minister Fred Horne said following a provincial-territorial health care committee meeting.

"What we're shooting for here is a fair price for this drug to make sure Canadians have access," he said Thursday.

"As far as I know this has never been done before in Canada where people at the political level have actually engaged with a drug manufacturer, face to face across a table, but we think it's important," he added.

There is a small group of children who have been able to get the drug through clinical trials and Vertex has covered that, Horne said.

But Vertex hasn't offered coverage of their drug on compassionate grounds that other companies usually offer, he said.

"Those children and their families are waiting," Horne said. "Canadians, as purchasers of this drug, deserve a fair price."

There are about 118 Canadians who would be eligible for the drug, including 21 in Alberta. Horne said the provinces and territories have been negotiating with Vertex since last July.

One of them, Madi Vanstone, met with Ontario Premier Kathleen Wynne last month in an effort to persuade the government to cover Kalydeco.

The 12-year-old girl from Beeton, Ont., has been taking the drug to treat her disease, which creates a sticky, thick mucus that builds up in the lungs and affects other organs.

But her family and friends have had to raise the $349,000 a year that's needed to pay for the pills, which they say has turned Madi's life around.

Her mother, Beth Vanstone, complained that it's taken too long to negotiate a price with Vertex when 11 other countries have managed to do it.

"We're obviously hoping that that (meeting) will be a catalyst that will spur this to a conclusion very, very quickly," Horne said.

The provincial and territorial ministers who gathered in Toronto for the meeting also discussed putting together a common plan to deal with drug coverage for rare or "orphan" diseases.

Health ministers want to pool their resources to provide a more equitable level of coverage to Canadians that is affordable, Horne said.

Many provinces and territories have been teaming up to negotiate better prices for generic and brand-name drugs, which they say is saving them millions of dollars a year.