Alberta minister asks for fair price for U.S. cystic fibrosis drug

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.

Fred Horne met with Toronto-based Vertex Pharmaceuticals president to discuss huge cost of Kalydeco in Canada

Alberta Health Minister Fred Horne met with American drug company Vertex Pharmaceuticals to talk about the cost of a drug that treats a rare form of cystic fibrosis. (CBC)

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.

Fred Horne, who was representing provincial and territorial health ministers, met Jeffrey Leiden, president of Vertex Pharmaceuticals, in Toronto on Tuesday.

Horne said there was no breakthrough, but negotiations with the company are to continue.

Vertex makes Kalydeco, which helps people who have the fatal genetic disease.

Kalydeco 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. But the company hasn't offered coverage on compassionate grounds that other manufacturers typically offer.

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."

A message left with the Boston-based company was not immediately returned.

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.

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