Cystic fibrosis advocate asks P.E.I. to fast-track coverage of new 'mind-blowing' drug

An Islander living with cystic fibrosis asked a committee of MLAs on Wednesday to get the provincial Health Department to fast-track coverage for a new life-saving drug treatment for the disease.

Hunter Guindon,an advocate with Cystic Fibrosis Canada, said the new drug, Trikafta, would make an enormous difference in the lives of the 23 Islanders who currently live with cystic fibrosis (CF) and struggle with lung function on a daily basis.

"This is the wonder drug that we've been waiting [for] decades to come. It's the closest thing we've ever had to a cure," Guindon told the P.E.I. Legislature's health and social development committee.

Trikafta, explained Guindon, is a genetic modulator that treats the underlying cause of CF by fixing the mutated gene found in people with the disease.

"This is much different than the current treatments available for CF that are treating the symptoms, so antibiotics, different inhaled medications," said Guindon.

"It's what we're calling the greatest scientific advancement in CF history. There's been nothing like this before."

Trikafta, which can cost up to $300,000 USfor a year of treatment, was approved for use in the U.S. in 2019.

It has been submitted to Health Canada to be approved for use in this country, and is currently under review.

If we could get this [drug] to younger people, earlier in disease, they would have greater health outcomes and longer life expectancies. Hunter Guindon

Guindon wants the P.E.I. government to begin the process of adding the drug to its provincial formulary now, so the cost of the drug can be covered as soon as possible.

That drug approval process on P.E.I. can take years. Besides Manitoba, which has no CF drug program, Guindon said that P.E.I. has "the worst" CF drug program in Canada, and that it often takes more than double the amount of time as other provinces to list a drug on the provincial formulary after it's been approved by Health Canada.

"I think that we're in a unique position because of our small population size and the number of CF patients that we have, to do something about it. I would like to see P.E.I. be the leader in this," he said.

Guindon told the committee that of the 23 Islanders living with cystic fibrosis on P.E.I., more than half are expected to die before the age of 40.

"If we could get this [drug] to younger people, earlier in disease, they would have greater health outcomes and longer life expectancies," he said.

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