'This drug saved my life;' cystic fibrosis patient accuses drug company, Canada of stalling on approval
A West Island woman living with cystic fibrosis says the prohibitive price of a drug is costing Canadian lives.
Chelsea Gagnon said she believes the drug Symdeko, which stabilizes patients’ lung degeneration by fixing protein deficiencies, saved her life.
“I’m certain that if I had not started this medication I would have deteriorated so much that I would have needed a double lung transplant or I would be dead,” she said.
The drug costs $250,000 per year and isn’t covered by Medicare. Gagnon said she is able to afford the drug thanks to her mother’s private insurance but knows that most Canadians aren’t so lucky.
“This drug saved my life, it changed my life and there’s an even better version out right now and Canadians can’t access any of them,” she said.
A second drug, Trikafta, not only stabilizes cystic fibrosis but can improve lung capacity.
John Wallenburg, Chief Scientific Officer for Cystic Fribrosis Canada, called Trikafta “a medical breakthrough.”
“If you look at what happened in the United States, for example, the (Federal Drug Administration) chose to use four separate mechanisms to speed the approval of this drug and they succeeded in approving it in 90 days,” he said.
The drug’s manufacturer, Vertex, has not yet submitted it for approval in Canada. The typical timeframe for approval can be between two and five years.
“Every day that we delay, it’s a degenerative disease, so our lungs get worse and people pass away,” said Gagnon. “They wait for lung transplants, the transplants don’t come. Life gets harder every day. Breathing isn’t easy.”
She accused Vertex and the Canadian government of unnecessary stalling.
“I’m going to be one of the last generations, when these modulators are available, who will die of cystic fibrosis,” she said. “I think the children who get the medication today are going to live pretty normal lives.”
In a statement a Vertex spokesperson said the company is unable to comment on drugs that haven’t received market authorization in Canada.
“Vertex has concerns that new Canadian medicine pricing rules, as they are currently written, have the potential to limit access to treatments for Canadians living with a rare disease,” they said. “We are working closely with relevant stakeholders to re-envision an environment where access to rare disease medicines for all eligible patients is achievable.”
Health Canada and the Quebec Health Ministry did not respond to requests for comment.