B.C. expands children’s access to ‘transformational’ cystic fibrosis drug

Click to play video: 'Family pleads for access to cystic fibrosis medication'
Family pleads for access to cystic fibrosis medication
The family of a North Vancouver child living with Cystic Fibrosis is pleading for access to what's considered a life changing drug. It's called "Trikafta", and as Aaron McArthur reports, young cystic fibrosis patients are using the medication everywhere in Canada, except in B.C. – Aug 31, 2022

A week after a B.C. family went public with its plea for a life-changing drug for their son with cystic fibrosis (CF), the province has announced it is making Trikafta more widely available.

Ten-year-old Oliver Narciso’s lung functions have been deteriorating since last year, and his family told Global News they were considering moving to Ontario in order to access the drug, which has been called “transformational” for CF patients.

Until now, the drug has only been covered for patients aged 12 and over. Without coverage the drug costs $25,000 per month.

On Wednesday, the Ministry of Health announced it was expanding coverage for the medication, effective Sept. 13, “based on a recommendation from the Canadian Drug Expert Committee.”

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Trikafta was first listed in September, 2021 and the province said original guidelines required patients to be 12 or older and have a forced expiratory volume (FEV) of less than 90 per cent.

Click to play video: 'Province expands Trikafta medication eligibility to young Manitobans'
Province expands Trikafta medication eligibility to young Manitobans

It said that guidance has since changed to include a younger cohort, with no requirement.

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The changes will expand eligibility to children aged six to 11, and brings B.C. in line with other provinces.

“Today’s news will change the trajectory of the disease and the future for many children and adults in British Columbia who live with cystic fibrosis,” said Kelly Grover, president and CEO, Cystic Fibrosis Canada in a media release.

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“We are pleased to see that the restrictive start criterion around lung function has also been removed, enabling more people to access the drug.”

Trikafta is covered through B.C.’s Expensive Drugs for Rare Diseases process, which grants patients access to high-cost drugs on a case-by-case basis.

The ministry of health said there are currently about 150 people eligible for the drug, with another 185 expected to become eligible when the criteria expands next week.

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