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  • 1.  Access to Elahere

    Posted 22 hours ago
    @ Alwayslearning and others. Yes, it is great to have CF Canada advocating for us, but sometimes it just needs more push. I was on the medical-science side when patients fought for drug coverage for the cystic fibrosis life-saving drug ivacaftor in 2014. It was patients themselves achieving this. Canadian received drug access 2 years after patients in the US and Europe, and some Canadians died waiting for it.

    Twelve-year-old Madi Vanstone of Beeton, Ontario became the public face of the 2013-2014 fight for ivacaftor (Kalydeco) coverage, lobbying the Ontario government to cover the \(\$300,000\)-per-year drug. Her highly publicized campaign and meetings with Queen's Park officials ultimately pressured the provinces into a funding deal in June 2014. [1, 2, 3, 4, 5]
    Key Moments from the Campaign:
    • The High Cost barrier: When ivacaftor was approved by Health Canada, its \(\$300,000\) annual price tag placed it entirely out of reach for middle-class families without full private insurance.
    • Madi Vanstone's Story: Madi, who was diagnosed with a rare G551D mutation, began a temporary trial but faced the terrifying prospect of her funding running out. Her family, alongside dozens of other patients across Ontario, reached out directly to the media and politicians to demand coverage.
    • The 2014 Resolution: After months of intense pressure from advocacy groups and families, the Alberta-led pan-Canadian Pricing Alliance negotiated a bulk-purchasing deal with manufacturer Vertex Pharmaceuticals in May 2014. Ontario officially agreed to fund the medication through OHIP in June 2014. [1, 2, 3, 4, 5, 6, 7, 8, 9]


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