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Province to provide coverage for new Cystic Fibrosis medication, Weyburn patient unable to benefit

Weyburn CF patient won't be able to access the new drug
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A new medication will help many cystic fibrosis patients - but not all

Saskatchewan will provide coverage for Trikafta, a new cystic fibrosis (CF) medication that has been shown to improve quality of life for patients. The Drug Plan is targeting to add the medication to the Formulary effective October 1.

"We know those with cystic fibrosis and their families have waited a long time for this medication," Health Minister Paul Merriman said. "I'm extremely pleased to announce our government will make it available to eligible patients throughout the province."

For the Weger family of Weyburn, the news has a mixed blessing, as they welcome word of having this drug available for CF patients in the province. Unfortunately, their daughter Teresa, who has cystic fibrosis, will not be able to benefit from this drug.

“Trikafta is effective for approximately 90 per cent of the population who carry at least one copy of the most common gene that causes CF. Both genes that Teresa carries are quite rare, so she is part of the approximately 10 per cent that will be unable to benefit from this medication,” said Cara Weger, Teresa’s mother.

Of the drug announcement, she said it was “something we’ve worked for for many years. Our hopes when hosting our annual Night Out for Cystic Fibrosis and our Big Butter Tart Bake for CF was to see something like this happen. From the testimonials I have read and conversations I have had with those who have been lucky enough to access this medication, it is life-changing.”

Saskatchewan is part of the pan-Canadian Pharmaceutical Alliance (pCPA), which has been engaged in negotiations with Vertex Pharmaceuticals regarding Trikafta. The pCPA announced on Sept. 17 that a mutual agreement has been reached on terms (pricing and conditions of coverage) for Trikafta.

"Trikafta is the single greatest innovation in cystic fibrosis history and it has the power to transform the lives of thousands of Canadians," Cystic Fibrosis Canada Director of Government and Community Relations Kim Steele said. "The CF community in Saskatchewan has fought long and hard to get this drug into their hands. Access to Trikafta will mean longer and healthier lives for so many people, and the ability to plan for a future that many feared they might not live to see."

The medication is approved by Health Canada for cystic fibrosis patients 12 years of age and older, with a specific cystic fibrosis genetic mutation.

More information regarding the listing and coverage criteria will be available in the coming days. CF patients and families are encouraged to speak with their physician about coverage, once Trikafta is listed on the Formulary.

Coverage is already available in Saskatchewan for both CF medications Orkambi and Kalydeco. Effective July 1, 2021, coverage of Orkambi was expanded for patients two years of age and older who meet certain medical criteria.

Some patients who have met the current medical criteria have been approved for funding of Orkambi. Kalydeco has been listed on the Saskatchewan Formulary since 2014. In 2020, the medical criteria was expanded to include additional genetic mutations.

Cara noted these drugs had only targeted specific mutations of CF, and her understanding is those who were taking these drugs will be able to switch over to Trikafta, which will help those who are able to take it.

“We are optimistic that with the support of the CF volunteer community, we will be able to continue to fund research that one day will help people like Teresa,” said Cara.