TORONTO – Madi Vanstone wanted a one-word answer but not the one she received.
“I just really want a yes today,” said the 12-year-old.
But the Beeton, Ont. girl with a rare form of cystic fibrosis came away disappointed after a meeting in Toronto failed to clinch a deal for an expensive life-saving drug.
Alberta and Yukon sent their health ministers to Toronto on Tuesday to negotiate a price with Vertex Pharmaceuticals, the U.S. producer of a drug that treats the underlying issue of CF.
READ MORE: Health ministers to meet drug manufacturer over cystic fibrosis treatment costs
Despite being approved by Health Canada two years ago, there is no public funding for Kalydeco, a drug that would benefit about 100 Canadians like Madi.
Treatment is expensive.
One year’s worth of Kalydeco costs over $300,000. After partial coverage from her father’s insurance and a discount by the drug company, Madi’s family pays $68,000 a year.
“I’m just stunned,” said Madi’s mother Beth after learning the outcome of the 45-minute meeting at the Hilton Hotel.
“I really thought we were going to have some positive news out of this,” she continued.
Absent from the meeting was Ontario’s health minister Deb Matthews.
“The government takes on a “caretaker” role during an election campaign so it would not be appropriate for the Minister to attend,” explained a Liberal Party campaign spokesperson.
Leading the discussions was Alberta’s health minister Fred Horne, who argued that the drug manufacturer’s asking price is too high.
“We don’t understand why Canadians should have to pay more than the best price in the U.S. for this drug,” he pointed out.
Neither Horne nor Vertex would reveal the price difference between the two countries but the drug manufacturer defended its offer.
READ MORE: Young girl ‘frustrated’ by inaction in fight for life-saving drug coverage
“Our proposal is as good as or better than the agreements in place in 15 countries around the world where people with CF are receiving the medicine through public reimbursement,” said Stuart Arbuckle, the Executive Vice President and Chief Commercial Officer for Vertex.
For Madi, it doesn’t matter which side gets its way. She just doesn’t want to lose.
Her father’s workplace recently switched insurance companies. The new company is re-assessing whether it should pay for the drug and will make a decision in June. According to Madi’s mother, if the insurance company fails to partially cover Kalydeco, the drug company will not offer the discount.
“It’s not over until it’s over,” said Beth Vanstone, vowing to continue the funding fight.
“This is my daughter, she means everything to me.”
Taking after her mother, the 12-year-old promises to keep pressuring Queen’s Park into securing a deal.
“It’s not discouraging me,” said Madi about Tuesday’s outcome.
“It’s actually making me stronger. It’s making me angry and I want to fight more now.”
Without Kalydeco, Madi will need a lung transplant. Because a transplant would not address the issue of CF, the new lungs would only give her another five years before she would need another transplant.
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