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Alberta health minister asks U.S. company why it charges Canadians more for drug

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TORONTO - Alberta's health minister says he had some hard questions for a U.S. company about why Canadians have to pay more for a lifesaving drug that treats a rare form of cystic fibrosis.

But the company that makes the drug says it has offered a price that is as good as or better than what the 15 countries where the drug is now reimbursed are paying.

Fred Horne, representing provincial and territorial health ministers along with a representative from the Yukon, met in Toronto on Tuesday with Stuart Arbuckle, chief commercial officer of Vertex Pharmaceuticals.

Horne said there was no breakthrough, but negotiations with the company will continue this week.

“We are extremely disappointed that today’s meeting did not result in an agreement to allow the eligible children and adults with CF in Canada to receive this medicine through public reimbursement," Arbuckle said in a statement.

"People with CF are still waiting for access to Kalydeco, and this process is taking much longer than they expect and deserve.”

Kalydeco, which helps people who have the fatal genetic disease, costs about $300,000 a year per patient in Canada.

Alberta has been leading negotiations with Vertex for nearly a year to lower the drug's price so it can be covered by medicare.

"We wanted to know why should Canadian patients be expected to pay a higher price for this drug than U.S. patients," Horne said.

"Why is Vertex funding co-payments for patients that have this drug covered by their private drug plan, but yet they won't extend the same coverage to Canadians who don't have any private health coverage?"

A small group of children have received the drug through clinical trials that Vertex has covered. Spokesman Zachry Barber says the company has offered coverage on compassionate grounds for several months, but wouldn't say how many children.

About 118 Canadians would be eligible for Kalydeco if it were covered by provincial health insurance plans.

One of them, 12-year-old Madi Vanstone of Beeton, Ont., has met with Ontario Premier Kathleen Wynne and scolded her government for the prolonged talks with Vertex. Her mother, Beth Vanstone, has said 11 other countries have managed to strike price deals with the company.

Horne declined to characterize how Vertex responded to his questions. He said company officials were respectful and heard him out.

"I don't want to prejudice the negotiations. This is about patients getting access to the drug," Horne said.

"Bottom line is that we expect Canadians to get a fair deal."

Barber said the company is giving Canada more than a fair deal.

"Our hope is that we will reach an agreement. We believe we''ve offered a price that's as good or better than the 15 countries where the drug is currently being reimbursed," Barber said Tuesday night from Toronto.

In a letter to Horne last month Vertex said it is strongly committed to finding a solution with provincial and territorial governments to ensure public funding of Kalydeco for all eligible cystic fibrosis patients in Canada.

The website of Cystic Fibrosis Canada said the disease mainly affects the digestive system and lungs.

The non-profit group estimates that one in every 3,600 children born in Canada has cystic fibrosis.

Note to readers: This is a corrected story. A previous version identified Jeffrey Leiden as company spokesman

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