SAHAR FATIMA AND KELLY GRANT
The Globe and Mail
Published Friday, May. 30 2014, 8:27 PM EDT
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.
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.