CYSTIC FIBROSIS CANADA CALLS ON PROVINCES AND TERRITORIES TO IMMEDIATELY FUND TRIKAFTA FOR ALL ELIGIBLE CANADIANS
TORONTO, July 6, 2022 – Today, the Canadian Agency for Drugs and Technologies in Health (CADTH) recommended that provinces and territories fund the transformational cystic fibrosis drug Trikafta for Canadians aged six and older with at least one F508del gene mutation, without undue restrictions. This final recommendation brings Canadian children and adults previously without access, one step closer to accessing this life-changing drug.
Today’s milestone recommendation aligns more closely to the clinical guidelines developed by Canada's cystic fibrosis clinical specialists and supersedes the review body's earlier, misguided recommendation for access. Cystic Fibrosis Canada now calls on all drug programs to fund the drug for all eligible Canadians and for those provinces and territories that have restrictions on access for people whose lung function measures 90% FEV1 or less to remove that criterion immediately.
“CADTH has done the right thing by recognizing Trikafta’s extraordinary, transformative value. We are asking our provinces and territories to immediately fund the drug broadly, so that those who need it can access it. Nothing should stand in their way,” said Kelly Grover, President and CEO of Cystic Fibrosis Canada. “Too many Canadians have waited too long for a drug that can transform their lives. Many of these people rely on private insurance but private insurers have continued to deny access to this life-changing therapy based on a CADTH recommendation, a recommendation that was prepared for public not private funders. This must be rectified immediately. There is not a moment to lose.”
Trikafta is considered the single greatest innovation in the history of cystic fibrosis. It can treat up to 90% of Canadians with cystic fibrosis and addresses the underlying causes of the disease instead of just managing the symptoms, potentially preventing irreversible damage caused by this progressive disease. Health Canada approved it for children aged six to 11 with at least one F508del gene mutation in April 2022 and for those over 12 in June 2021.
While Quebec’s cost-effectiveness body, Institut national d'excellence en santé et en services sociaux (INESSS) has pandemic-related delays, Trikafta is under review. INESSS noted that, if all goes well, the Minister of Health will receive the recommendation by fall, after which he has 30 days to ratify this recommendation.
In addition to calling on public drug programs to cover Trikafta, Cystic Fibrosis Canada continues to engage private insurers, calling on them to fund the drug for their plan members who need it.
"My daughter, Ava, fights so hard already. She deserves a chance to give this life all she's got," said Jillian Walton, mother to Ava, 7, who lives with cystic fibrosis. "Giving everyone who is eligible access to Trikafta should be a no brainer. It will alleviate so much stress on our healthcare system, all while letting people living with CF truly achieve their full potential and lead wonderful full lives."
JOIN OUR FACEBOOK LIVE EVENT
Members of the community and supporters are invited to join a Facebook Live for #FurtherTogether on Wednesday, July 6 at 7 p.m. ET on the Cystic Fibrosis Canada Facebook page. Hosted in English, the event will bring the community together to discuss the recommendation from CADTH and the next steps to gaining access to life-changing cystic fibrosis medications.
About cystic fibrosis
Cystic fibrosis is the most common fatal genetic disease affecting 4,332 Canadian children and young adults. There is no cure. Of the Canadians with cystic fibrosis who died in the past five years, half were under the age of 37. 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 4,332 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 five years were under the age of 37. 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. Learn more at cysticfibrosis.ca.
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For more information:
Magdelena Oskam, Coordinator, Marketing and Communications
Tel: (226) 899-1363
Email: moskam@cysticfibrosis.ca
