Alberta reaches tentative deal on cystic fibrosis drug on behalf of provinces
Published Saturday, May 31, 2014 11:39AM EDT
Last Updated Saturday, May 31, 2014 6:55PM EDT
A 12-year-old Ontario girl who relies on an expensive cystic fibrosis drug may soon be able to get the drug at no cost, after Alberta's health minister successfully negotiated a tentative deal that will allow the provinces to cover the cost of the medication on their provincial drug plans.
Madi Vanstone and her family had lobbied the Ontario government to help cover the cost of Kalydeco, a life-saving drug that costs about $350,000 a year.
Alberta had been leading the talks with the drug's maker, Vertex Pharmaceuticals Inc., on behalf of all of the provinces. Alberta Health Minister Fred Horne said he was seeking to negotiate a price so that the provinces could afford to cover the drug on their health plans.
Madi’s family said Saturday they received a phone call from Ontario Health Minister Deb Matthews office to inform them of the deal.
“I got a call from Deb Matthew’s office with really good news stating that they had finally reached a price for Kalydeco,” Madi’s mother Beth Vanstone told CTV Toronto.
Madi, who has a rare form of cystic fibrosis, said that the drug gives her more energy and has helped to clear up her headaches and stomach-aches, which were being caused by a buildup of mucus in her lungs.
Last year, Madi and her family participated in a charity run in Toronto to raise money to help cover costs for the critical drug.
Exactly one year later, Madi was back at the run, dubbed “Color Me Rad,” on Saturday, and was able to keep up with her friends. Her family says it’s thanks to the life-saving drug.
“Last year I maybe ran half a kilometre, a kilometre out of five, and this year I ran almost half of it,” Madi told CTV Toronto.
“It’s such a big difference because of Kalydeco,” she added.
Madi and her family had visited Queen’s Park several times in past few years, hoping to get the drug funded by OHIP, but they were unsuccessful.
The issue seemed to lie in the negotiations with the manufacturer, who didn’t want to budge on the price despite several attempts.
After a roller coaster year of meetings, a tentative deal is a step in the right direction for patients like Madi, her family says.
“I’m excited but nervous because you never know what’s going to happen,” she said.
About 118 Canadians would be eligible for Kalydeco if it was covered by provincial health insurance plans.
Cystic fibrosis is a genetic disorder that affects the lungs, pancreas, liver and intestine. One of the symptoms of cystic fibrosis involves a persistent infection of the lungs and a loss of lung function. Patients with cystic fibrosis develop a thick mucus in their lungs.
It is the most common fatal genetic disease among Canadian children and young adults, according to Cystic Fibrosis Canada. The group estimates that about one in every 3,600 children born in Canada has cystic fibrosis.
If all goes well, the Ministry of Health says patients like Madi could begin seeing funding by the end of June
With files from The Canadian Press