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Girl, 12, asks Ontario to cover life-saving cystic fibrosis drug

Madi Vanstone, front centre right, stands with her mother Beth, front centre, at Queen's Park. Sixty of Madi's classmates also joined her at the legislature on Monday. CITYNEWS

A 12-year-old girl with a rare form of cystic fibrosis (CF) met with the Ontario premier and health minister on Monday to ask that the province cover a costly drug that has saved her life.

Kathleen Wynne and Deb Matthews promised to speed up the process after meeting privately with Madi Vanstone, who was at Queen’s Park with her family and 60 classmates from Beeton, Ont.

Madi’s condition is treated by a life-saving drug called Kalydeco that costs nearly $350,000 a year. It’s been approved by Health Canada but isn’t covered by OHIP.

Her mother Beth said she’s asked the government to pay for the drug, but was told that it’s not available because a panel is still negotiating a price between the provinces and the Boston drug maker, Vertex Pharmaceuticals.

The family’s insurance and the drug maker have been covering most of the cost, while $5,770 a month is paid by fundraising efforts. But time is of the essence because this arrangement ends in about three months.

Wynne and Matthews said Monday they want Madi and others with her condition to have access to the drug and promised to expedite the process. Meanwhile, Toronto charity, Aaron’s Apple, has offered to help the Vanstones, co-founder Mandy Maresky told CityNews.

The health minister said talks for Kalydeco are being led by Alberta through the Pan-Canadian Pricing Alliance. Alberta has made three proposals to Vertex and they have rejected each one. ‎

“We need Vertex to step up and be a strong partner in these negotiations so we can help patients like Madi,” Matthews said.

Vertex said in an email the talks were ongoing, but declined to go into details.

“During the course of these discussions, multiple different proposals have been provided by both Vertex and also the government,” spokesman Zachry Barber said. “While we have not yet reached an agreement, we remain hopeful that Kalydeco will be publicly reimbursed across Canada – as it is in many countries around the world – so that eligible people with CF can receive this medicine as soon as possible.”

After the meeting, Madi said she was “somewhat” satisfied with her meeting with the premier and the health minister.

Her mother 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 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.

With files from The Canadian Press