N.S. father says drug-pricing ‘chess game’ cost his daughter her life

The father of a Nova Scotia woman who died after a battle with cystic fibrosis says the Canadian government’s “chess game” with the pharmaceutical industry cost his daughter her life.

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A memorial service will be held in Truro on Wednesday for 23-year-old Chantelle Lindsay, who was unable to access a new therapy for the genetic disease.

Mark Lindsay says he promised his daughter he would continue the fight to make the “life-saving” drug Trikafta, which experts say could treat 90 per cent of patients with cystic fibrosis, available in Canada.

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Health Canada says the drug’s manufacturer, Vertex, hasn’t submitted Trikafta for approval for use in Canada, and it can’t force the company to do so.

A Vertex spokeswoman says the company can’t comment on products that haven’t been authorized in Canada, but raised concerns that the federal government’s recent drug-pricing reforms could limit access to treatments for rare diseases.

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The Patented Medicine Prices Review Board, an arms-length agency tasked with protecting consumers from excessive drug costs, says it’s considering “significant changes” to the draft guidelines in response to feedback from stakeholders, including patient advocates.