Madi Vanstone, from Beeton, Ont., has been taking the drug Kalydeco to treat a rare form of cystic fibrosis, a genetic disease that creates a sticky, thick mucus which builds up in the lungs and affects other organs.
But the cost of the pills — $349,000 a year — isn't covered in Ontario, leaving her family and friends to raise the money to pay for the drug.
Since she started taking the drug, she can play with her friends outside and climb the stairs without struggling for breath, Madi said.
"I didn't have any energy, I had headaches all the time, bellyaches," she said. "And now, that's just gone."
Her 15-year-old sister Jessica said Madi missed months of school last year. But since she's been taking Kalydeco, she hasn't missed a day. She's even taken up sports like running.
"If I go off it, I don't know what I'll do because this improves my life significantly," Madi said.
Ontario Premier Kathleen Wynne, who met with Madi and her mother, said the drug isn't covered yet because the price is still under negotiation.
Some provinces have banded together to use their collective buying power to cut drug costs.
Alberta, which is leading the talks on Kalydeco, has made three proposals to the drug maker Vertex, but it has rejected each one, Wynne said.
It's not responsible for Ontario to undermine other provinces, she added.
"Of course we don't put a price on a human being's life," she told the legislature.
But a former health minister called her response "complete garbage."
The governing Liberals could fund the drug tomorrow if they wanted to, said Progressive Conservative Jim Wilson. But they have little money left after spending scandals over cancelled gas plants, electronic health records and the province's air ambulance service.
"Obviously the premier believes the price is more important than the quality of life for a 12-year-old girl and others who need the drug," he said.
Alberta's Conservative government says it will keep putting pressure on the manufacturer to reach an agreement.
There are about 118 Canadians who would be eligible for the drug, including 21 in Alberta, said the province's Health Minister Fred Horne.
But Vertex hasn't offered coverage of their drug under their compassionate care program that drug companies usually offer, he said.
"This is a very frustrating situation," Horne said.
"Vertex needs to come to the table and offer Canadians a fair price for this drug so we can make it available."
But Madi's mother, Beth Vanstone, said she can't understand why it's taking so long — 14 months and counting.
"There are people who are getting sicker and sicker," she said. "The wheels have been spinning and we're not going anywhere."
The price of Kalydeco has been set in 11 other countries, including Germany, where it costs $450,000 a year, she said.
Both Madi and her mother left the meeting with Wynne and Ontario Health Minister Deb Matthews without the answers they were looking for.
"It was a little bit of spin," Vanstone said.
They weren't able to give her a timeline for when the province might cover the drug, she said.
"I said, I hope we don't have another 14 months of this, and she said, well no, we're going to be working towards it and we can't pay that price," Vanstone said.
"I said, basically you're putting a price on lives."Suggest a correction