April 29, 2014 6:35 pm

Young girl ‘frustrated’ by inaction in fight for life-saving drug coverage

ABOVE: Global’s Cindy Pom reports on 12-year-old Madi Vanstone’s fight to have the government cover the cost of a life-saving drug – and what the provincial government’s response is.

TORONTO – A 12-year-old Beeton, Ont. girl with a rare form of cystic fibrosis is “frustrated” by the slow pace of efforts by politicians at Queen’s Park to find out if the province is able to help cover the cost of a life-saving drug.

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“I am very frustrated,” she said. “I don’t know what to say to make them listen.”

Madi Vanstone met with Ontario Premier Kathleen Wynne last month in an effort to persuade the government to cover Kalydeco.

Wynne had promised to expedite a joint effort by the provinces to secure a lower price for the drug from the American manufacturer. The company, Vertex, has so far rejected each proposal to lower the cost.

Her visit to Queen’s Park comes two days after the death of a Milton, Ont. mother who had been fighting for cancer treatment coverage.

Kimm Fletcher, 41, died Sunday, April 27 of brain cancer following a lengthy battle to have the drug Avastin covered by OHIP, which she felt would prolong her life.

Vanstone hopes the government will finally offer some sort of financial assistance but she remains realistic.

“They’re not moving forward, and we can’t wait,” Vanstone said. “There’s no time, and they’re not doing anything.”

Wynne told the legislature Tuesday that Ontario must work with other provinces to try to save money on new drugs.

“When I met with my colleagues from across the country a few weeks ago, we made it clear that this is not an issue just for Madi, that there are other children and other people in other parts of the country who need this drug to be covered,” she said. “We need that deal. We are pushing very hard.”

Vanstone has been taking the drug Kalydeco through clinical trials to treat her disease, which creates a sticky, thick mucus that builds up in the lungs and affects other organs.

Canadians currently have to pay a premium for Kalydeco, which costs patients hundreds of thousands of dollars a year.

Alberta Health Minister Fred Horne said last month it’s unfair that Canadians have to pay more for the drug than Americans.

“What we’re shooting for here is a fair price for this drug to make sure Canadians have access,” Horn said.

Provinces including Ontario, Alberta and Yukon have requested a meeting with Vertex’s chief executive to see if something can be worked out.

“As far as I know this has never been done before in Canada where people at the political level have actually engaged with a drug manufacturer, face to face across a table, but we think it’s important,” he added.

There are about 118 Canadians who would be eligible for the drug Kalydeco. Horne said the provinces and territories have been negotiating with Vertex since last July.

Vanstone’s mother, Beth, complained that it’s taken too long to negotiate a price with Vertex when 15 other countries have managed to do it.

Vertex told Global News today that the letter from the Alberta Health Minister arrived April 24.

With files from The Canadian Press

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