Nunavut Confirms Trikafta Funding, All Provinces and Territories Will Now Cover Life-Changing CF Drug
TORONTO, November 22nd , 2021– The Nunavut Government has today confirmed that the life-changing cystic fibrosis drug, Trikafta, is covered by their Extended Health Benefits (EHB) drug plan. With this news, every province and territory in Canada has now committed to fund Trikafta for eligible people on their public drug plans – a significant milestone in Canadian cystic fibrosis (CF) history.
“This is an important moment for the Canadian cystic fibrosis community. Together, we're changing the trajectory of this fatal disease for so many Canadian families” says Kelly Grover, President & CEO of Cystic Fibrosis Canada. “We're humbled to think of the people who can now be helped by this life-changing drug and we’re pushing relentlessly forward in our advocacy work to ensure it will help even more people in the future.”
Patient eligibility for public coverage of Trikafta in Canada varies by jurisdiction. Some jurisdictions – Newfoundland & Labrador and Yukon – are yet to confirm a start date for their coverage of the drug. All other provinces and territories have either started funding the drug already or have set a date to start funding.
Cystic Fibrosis Canada is relieved to reach this important milestone for access to Trikafta in Canada, however we remain focused on ensuring that everyone who can benefit from the drug has access to it. A funding announcement does not necessarily mean access for all those who need it. Many Canadians are encountering challenges in accessing Trikafta through both public and private drug plans.
“Amongst the happy stories of people getting access to Trikafta, we're seeing many in our community experiencing barriers to access through both public and private drug programs. Tragic stories of hopes dashed, last minute denials of coverage and confusing, complex application processes” says Kim Steele, Director of Government and Community Relations for Cystic Fibrosis Canada. “Our governments, private insurers and the manufacturer must do better. Canadian families shouldn’t have to suffer this way.”
Cystic Fibrosis Canada will continue to push further until all who can benefit from Trikafta have access. We continue to urge every province and territory to follow our clinician-developed guidelines for access to Trikafta and make the drug available to all who can benefit from it. We’re also callling on Canada’s private insurance to get going and fund this drug now, for all who could benefit from it.
Canadians with cystic fibrosis have been fighting for access to Trikafta since it was first fast-tracked and approved for access by the US FDA in October 2019. The Canadian cystic fibrosis community tenaciously fought to bring the drug to Canada as more than 32 other countries around the world approved the drug for use. That hard work paid off. Once submitted for approval, Trikafta moved more quickly through the Canadian system than any CF drug in history, receiving Health Canada approval on June 18, 2021, for people aged 12 and up with cystic fibrosis and at least one F508del mutation (the most common genetic mutation causing cystic fibrosis).
Clinical trial data has proven that Trikafta is the greatest innovation in the history of cystic fibrosis history, with a transformational impact on recipients that includes longer and healthier lives. Canadian research released in August 2020 demonstrates that if Trikafta was brought to Canada in 2021, it could result in extraordinary health benefits by 2030, including 15% fewer deaths, 60% fewer people living with severe lung disease and an increased estimated median age of survival for a child born with cystic fibrosis of 9.2 years.
Whilst Trikafta has the potential to treat up to 90% of Canadians with cystic fibrosis, improving their health outcomes and quality of life, it is not a cure. And for those for whom Trikafta does not work, the search for a transformational treatment for this devastating genetic disease continues. Cystic Fibrosis Canada is committed to our continued work in research, healthcare, community support, and advocacy to ensure that every person in Canada impacted by cystic fibrosis will one day experience – and enjoy- everything life has to offer.
Trikafta was recently submitted to Health Canada and accepted for Priority Review by Health Canada for the treatment of cystic fibrosis (CF) in people ages 6-11 years. A priority status for a Health Canada review means that it should be completed within 180 days, or before the end of April 2022.
Members and supporters of the Canadian cystic fibrosis community are invited to join Cystic Fibrosis Canada’s bi-weekly #TrikaftaToday Briefing on Wednesday, November 24th at 2pm AST/ 1pm EST / 12pm CST / 10am PT, to discuss this latest news and next steps for access.
For CF advocacy news, subscribe to Cystic Fibrosis Canada’s advocacy e-newsletter "The Advocacy Brief".
About cystic fibrosis
Cystic fibrosis is the most common fatal genetic disease affecting 4,344 Canadian children and young adults. There is no cure. Of the Canadians with cystic fibrosis who died in the past three years, half were under the age of 34. Cystic fibrosis is a progressive, degenerative multi-system disease that affects mainly the lungs and digestive system. In the lungs, where the effects are most devastating, a build-up of thick mucus causes severe respiratory problems. Mucus and protein also build up in the digestive tract, making it difficult to digest and absorb nutrients from food. In addition to the physical effects of the disease, mental health concerns are emerging; anxiety and depression are common among this population. Double lung transplants are the final option for patients with end-stage disease; most fatalities of people with CF are due to lung disease.
About Cystic Fibrosis Canada
Cystic Fibrosis Canada has dramatically changed the cystic fibrosis story. We have advanced research and care that has more than doubled life expectancy. Since being founded by parents in 1960, Cystic Fibrosis Canada has grown into a leading organization with a central role engaging people living with cystic fibrosis, parents and caregivers, volunteers, researchers and healthcare professionals, government and donors. We work together to change lives for the 4,344 Canadian children and adults living with cystic fibrosis through treatments, research, information and support. Despite our remarkable progress together, we are not yet done. Not when half of the Canadians with cystic fibrosis who died in the past three years were under the age of 34. We will keep pushing, keep going further until all people with cystic fibrosis can and do experience everything life has to offer —and enjoy everything life has to offer.
For more information, please contact:
Cateryne Rhéaume, National Bilingual Communications and Marketing Associate
Tel: 438 868-4451
Email: crheaume@fibrosekystique.ca
Jenny Wood, Associate
Tel: 437-983-3733
Email: jwood@cysticfibrosis.ca