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B.C. cystic fibrosis families relieved as coverage for wonder drug extends to young kids

Parents and other advocates continued to fight for access through the summer, as B.C. lagged behind other provinces to cover costs
Oliver Narciso (10), father Nelson, mother Miriana and sister Amelia gather at their home in North Vancouver earlier this year. Oliver was hospitalized for two weeks in July, as coverage quickly rolled out in provinces like Ontario and Alberta, but not B.C. Mike Wakefield / North Shore News

B.C. families living with cystic fibrosis are breathing a sigh of relief, as coverage for life-changing drug Trikafta has finally been approved in the province.

As the relatively new medication goes throughout the body, effectively fixing the defective gene that leads to chronic infections and damage to the lungs, cystic fibrosis patients around the globe have been fighting for access to the drug.

But most can’t afford Trikafta without government assistance, as the annual bill for the wonder drug costs around $306,000.

Last fall, coverage for Canadians 12 and older rolled out across the country. In April this year, Health Canada approved the drug for kids age six to 11. Then, as the Canadian Drug Expert Committee posted its final recommendation for pediatric use in July, provinces like Ontario and Alberta immediately announced coverage would extend to the younger group.

For kids and families in B.C., it’s been a different story.

“It was just such a struggle to get here,” explains North Vancouver resident Miriana Narciso, whose 10-year-old son Oliver was hospitalized for two weeks in July to receive intravenous antibiotics while losing more lung function due to his cystic fibrosis.

“It didn’t really feel like much of the summer,” she said. “We were worried about our son and focused on just getting his health up. We were constantly writing letters to our MLA [Bowinn Ma] and to Adrian Dix, trying to get a meeting.”

Because it was dangerous for Oliver to fly while sick, the Narcisos cancelled a trip to visit family in Ontario, where Trikafta was approved straight away after getting the rubber stamp from federal drug experts.

B.C. was the last province or territory to approve coverage, Narciso said. “It was agonizing, because we had to keep waiting and waiting – like, what’s the holdup?

“Well, we know what the holdup was. B.C. has appointed an extra drug benefit council. So they had to do another review,” she continued, adding that no one was giving them timelines.

But around two weeks ago, they caught wind that the long-awaited approval was incoming. Then on Wednesday (Sept. 7), the province said coverage would be available starting Sept. 13. through the B.C. Expensive Drugs for Rare Diseases process.

“Living with cystic fibrosis is a daily struggle for both patients and their families,” Health Minister Adrian Dix said in a statement. “Expanding access to Trikafta for children aged six to 11 provides an additional treatment option for the hundreds of people living with cystic fibrosis in B.C.”

Currently, around 150 people in the province benefit from Trikafta PharmaCare coverage. An estimated 185 more people are expected to become eligible with the expanded criteria.

MLA Ma told the North Shore News that throughout the summer, she heard from many community members about making the treatment available to younger kids. Otherwise, “I might not have known about the medication or the situation regarding its coverage restrictions.”

“It enabled me to discuss the matter with Health Minister Adrian Dix, who has been very responsive to the issues and concerns I’ve raised,” she said.

Despite the long wait, Narciso said the approval ended up coming earlier than she and other advocates expected, which could have been the result of constant pressure they put on officials.

Narciso spoke with CBC’s Gloria Macarenko in August. The CBC also reported on 10-year-old Maysa Milliagan from Victoria and her ongoing battle with the disease.

Narciso mentioned the efforts of people like Chris Black, a Campbell River dad who has been constantly advocating for better cystic fibrosis treatments for his daughter and other patients.

“It was definitely a team effort,” she said.

But the marathon isn’t over yet. Oliver and kids like him still have to undergo some tests, and its not clear yet when they’ll have the medication in hand. It could take weeks. It could take a month. And although they expect he’ll be able to do without some parts of his daily, complicated treatment routine, it will still be a learning experience to see what works for him.

Regardless, Oliver was “really happy” to hear the news, and how it will make things like playing his favourite sports – baseball and basketball – a lot easier.

“My parents have been fighting for a while, and it’s finally funded,” he said. “It’s gonna change my life.”

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