Madi's mother unconvinced cystic fibrosis drug funding will materialize
Daniel Bitonti, CTVNews.ca Staff
Published Tuesday, March 4, 2014 9:14AM EST
Last Updated Tuesday, March 4, 2014 9:50AM EST
The mother of a 12-year-old Ontario girl with cystic fibrosis says she isn’t satisfied by Ontario Premier Kathleen Wynne’s promise to work towards getting the costly drug that significantly improves her daughter’s quality of life covered under provincial health benefits.
Beth Vanstone and her daughter Madi met with Wynne and Health Minister Deb Matthews on Monday, after marching to Queen’s Park with a group of supporters.
“I had a message and I wanted answers and I didn’t feel like I got the answers. I felt that I got a little more spin than anything,” Vanstone told CTV’s Canada AM on Tuesday morning.
Vanstone specifically wanted to know why the province is not covering a drug called Kalydeco, which her daughter recently began taking. Vanstone says the drug is working so well that Madi has actually tested negative for cystic fibrosis. This doesn’t mean, however, that she’s free of the condition.
Cystic fibrosis has several effects on the body, but mostly attacks the digestive system and lungs, according to Cystic Fibrosis Canada. Typical complications include difficulty digesting fats and proteins, vitamin deficiencies and loss of lung function. One in every 3,600 children is born with the disease.
In order to avoid symptoms, Madi needs to continue taking the drug.
The problem is the drug costs approximately $300,000 per year. While Vanstone says insurance covers a portion of the cost, she and her husband are still paying more than $5,700 per month out their own pockets.
Health Minister Matthews has said she's willing to add coverage of the drug to OHIP, provided it's not prohibitively expensive. She has also said there's no agreement yet, however, as the matter is still subject to price negotiations between the manufacturer Vertex and the drug-buying consortium that handles the negotiations on behalf of the provinces.
Alberta has taken the lead in those negotiations, but the manufacturer has so far rejected all three of its offers.
While Vanstone walked out of the meeting with a promise from Wynne that the province will fight to get her daughter the life-saving medication with a lower price tag, Vanstone says she remains skeptical, saying that she thinks this is all just “delay tactics, and they (Ontario) just don’t want to fund a drug.”
“I don’t understand why we’re investing in research and developing drugs if it’s not getting to the people that need them,” Vanstone said.
Wynne said it would be irresponsible for Ontario to undermine Alberta’s efforts, but there’s "no question" the government wants to fund Kalydeco.
"Ultimately, my feeling is it all comes down to price. I explained that I didn’t think we can put a price on a kid’s life," she told CTV Toronto on Monday.