North Shore family fights for child access to life-changing cystic fibrosis drug

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Jul 05, 2022 – Nick Laba/North Shore News

Oliver Narciso, a 10-year-old boy from North Vancouver, is living with cystic fibrosis. A newly approved drug could drastically improve his daily quality of life and stave off permanent damage to his lungs.

But he’s currently too young to qualify for coverage. Out-of-pocket, the medication would cost his family around $306,000 per year.

Experts say it could take another six months before young kids in British Columbia can access Trikafta. Meanwhile, Oliver’s lung function continues to decline below normal levels.

Miriana Narciso has written to officials including provincial Health Minister Adrian Dix, West Vancouver-Capilano MLA Karen Kirkpatrick and North Vancouver-Lonsdale MLA Bowinn Ma.

Ma said Trikafta can indeed improve the quality of life for CF patients, which is why coverage was provided to hundreds of British Columbians age 12 and up under the B.C. Expensive Drugs for Rare Diseases process.

Ma said she’s spoken directly with Dix about Trikafta for young children to communicate how important she believes this is. Provided a positive recommendation, the Health Ministry expects to complete its review by the end of August.

“Minister Dix has further confirmed that we are preparing for these reviews by working closely with CF clinicians through Cystic Fibrosis Care BC and the Provincial Health Services Authority to plan for an efficient enrolment of new patients eligible for coverage as soon as the review process is completed,” she said.

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