Girl, 12, pleads for province to fund expensive drug for cystic fibrosis
Kendra Mangione, CTV Toronto
Published Monday, March 3, 2014 10:37AM EST
Last Updated Monday, March 3, 2014 6:10PM EST
A 12-year-old girl marched into Queen’s Park on Monday, and went straight to the premier, urging the Ontario government to pay for a costly drug to fight her cystic fibrosis.
Madi Vanstone, of Beeton, Ont., says the drug Kalydeco has improved her life significantly.
The problem is that Kalydeco costs $300,000 a year, and isn’t covered by OHIP. Her family simply can’t afford it. They want to add the drug to the list of products covered by provincial health care.
Vanstone asked the premier "why they’re not covering it, and why it’s taking so long."
Before taking the drug, Vanstone told The Canadian Press she "didn’t have any energy. I had headaches all the time, bellyaches. And now that’s just gone."
Cystic fibrosis has several effects on the body, but mostly attacks the digestive system and lungs, according to Cystic Fibrosis Canada. Typical complications are difficulty digesting fats and proteins, vitamin deficiencies and loss of lung function. One in every 3,600 children is born with the disease.
The drug helps Vanstone breathe easier, letting her play with her friends and ride horses.
Though research has been positive, Ontario Health Minister Deb Matthews says funding has been an ongoing negotiation with the drug’s manufacturer. She’s willing to add coverage of the drug to OHIP, provided it’s not prohibitively expensive.
Alberta has taken the lead in the negotiations, on behalf of the rest of the provinces, but the manufacturer has so far rejected all three offers Alberta has made.
Vanstone walked out with a promise from the premier: the province will fight to get her the life-saving medication with a lower price tag.
Ontario Premier Kathleen 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.