ABOVE: 12-year-old Madi Vanstone talks about what she said to Kathleen Wynne during their meeting – and what the Premier told her in return. Cindy Pom reports.
TORONTO – A 12-year-old girl with a rare form of cystic fibrosis pleaded for the Ontario government to pay for an expensive drug to treat her disease.
Premier Kathleen Wynne met with 12-year-old Madi Vanstone Monday, as the girl fights for payments to help cover the very expensive annual treatment for her condition.
Vanstone and 60 classmates took a bus to Queen’s Park to ask the government to help pay for the coverage.
The drug, Kalydeco, costs $350,000 a year and her father’s health insurance only covers half. Vanstone said the doses she’s had so far has improved her life “significantly.”
“I didn’t have any energy, I had headaches all the time, bellyaches,” she said. “And now, that’s just gone.”
WATCH: Madi, her mother Beth, and MPP Jim Wilson held a press conference ahead of their meeting Monday with Kathleen Wynne
Meanwhile, the drug company pays 20 per cent, leaving Madi’s family with a monthly bill of $6,000.
Thus far, donations from the community are helping to pay for her treatments.
Her mother Beth says she’s appealed to the government to pay for the drug, but was told that it’s not available because they’re negotiating the price. She urged Wynne to speed things up.
“There are people who are getting sicker and sicker,” she said. “The wheels have been spinning and we’re not going anywhere.”
Watch: Why does Queen’s Park fund some drugs and not others? Alan Carter reports.
Beth says the price of the drug has been negotiated in 15 other countries, but Ontario has been negotiating the price for more than a year. Wynne said Monday that there is “no question” her government wants to fund the drug but is being hampered by ongoing negotiations.
“Of course we don’t put a price on a human being’s life,” Wynne said in the legislature.
The price of Kalydeco has been negotiated in the following countries: United States, England, Scotland, Northern Ireland, Wales, Ireland, France, Germany, Italy, The Netherlands, Austria, Denmark, Sweden, Norway, Greece.
-with a file from The Canadian Press
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