Quebec to expand use and cover cost of life-changing cystic fibrosis drug

Marie-Pier Emery knows how important the drug Trikafta is for people like her.

Emery lives with cystic fibrosis, a genetic disease that causes mucus to build up in certain parts of the body, including the lungs. It is the most common fatal genetic disease in children and young adults in Canada.

Her lung capacity was just eight percent when she started taking Trikafta last October. Since then, she said she has seen her lung capacity improve steadily, up to 10% so far.

“It was life changing,” she said.

Now the Quebec government has announced that more people like Emery will be able to access the drug.

Previously, Trikafta was only available in Quebec to children 12 years and older or adults with a lung capacity of 90% or less.

If you don’t meet these conditions, you would then have to rely on private insurance or pay out of pocket for the drug, which could cost up to $300,000 a year.

Under the new Quebec rules, anyone over the age of six, regardless of lung capacity, will have the drug covered by the public healthcare system.

Health Canada approved the use of Trikafta for people aged 6 to 11 in April. Quebec follows the other provinces, including New Scotland, alberta and Manitobaextending its coverage to the age group.

Dr. John Wallenburg, Scientific Director of Cystic Fibrosis Canada, said this was a huge win, especially for young families struggling with the disease.

“Imagine: you’re a parent and you know there’s a medicine that can really extend your child’s life, and you know it’s there, and you can’t get to it,” he said. -he declares. “It’s terribly stressful.”

Trikafta can be used to treat around 90% of patients with cystic fibrosis, but Wallenburg warns it’s not the magic bullet needed to fight the disease.

“These drugs, as wonderful as they are, are not a cure,” he said. “What we’re going to have to do is come up with a completely different approach for people… who don’t benefit from these drugs.”

He said provinces and the federal government should continue to invest in research into the disease.

In the meantime, Wallenburg said the next step should be to expand the use of Trikafta to children under six, so they can get treatment before symptoms appear.

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