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September 2, 2021

MONTREALSeptember 2, 2021– The Institut national d'excellence en santé et services sociaux (INESSS) this week issued a recommendation to list Trikaftaa game changing cystic fibrosis drug on the public drug plan in Quebec, however with restrictive criteria. While it will mean access for some, it is Cystic Fibrosis Canada’s position that the INESSS recommendation is extremely disappointing as it does not follow the guidelines developed by cystic fibrosis clinicians, and if approved by the Minister of Health, could effectively exclude over 25% of eligible Quebecers with cystic fibrosis (CF), many of whom are youth, who could greatly benefit from the drug.  INESSS improves on some shortcomings of the draft recommendation issued by the Canadian Agency for Drugs and Technologies in Health (CADTH) in July 2021but falls well short of the guidelines prepared by cystic fibrosis clinicians across the country, who urged for wider criteria.  

 Similar to the draft CADTH recommendation, INESSS has recommended that the province list Trikafta but limit coverage to include only those with an FEV1, a measure of lung function, of 90% or less. This criteria effectively leaves young Quebecers with cystic fibrosis behind as it will force them to watch their health decline, accumulating unnecessary and irreversible damage before being eligible. The restrictive criteria in the recommendation from INESSS does not recognize the complexity of this disease, ignoring one of the most significant benefits Trikafta could provide to patients: preventing disease progression.  

 INESSS has missed the opportunity to lead the country in recommending to fund this breakthrough drug for ALL residents who can benefit, and instead has repeated the same mistakes as CADTH, ignoring a key element of the guidelines developed by Canadian cystic fibrosis clinicians, said Dr. John Wallenburg, Chief Scientific Officer, Cystic Fibrosis Canada. Cystic fibrosis is a complex multi organ disease. The best use of healthcare dollars in all instances is in preventing disease. In fact, cystic fibrosis survival has dramatically improved over the years precisely because an aggressive regimen of therapy is initiated immediately on diagnosis, to delay the onset of symptoms.  If approved by the Minister of Health, the INESSS recommendation will create a cruel situation in which children and young adults will need to become demonstrably sicker to get this medicine.”

Cystic Fibrosis Canada calls on the Health Minister of Quebec, Christian Dube to trust his CF clinicians’ expertise and experience to prescribe the drug in accordance with their professional opinion. This would allow key health decisions to be informed by the care guidelines for comprehensive CFTR modulators that Canadian cystic fibrosis clinicians developed in partnership with Cystic Fibrosis Canada.  

 “I was diagnosed with cystic fibrosis when I was one month old. I have been receiving regular treatments for this disease ever since - that is because it is incredibly important to prevent the progression of this disease,” said Alexandre Levert, 18-year-old from Montreal who lives with cystic fibrosis. “I am young and have plans to become a productive member of my community. I hope to study to become an engineer. Knowing the greatest innovation in cystic fibrosis history is out there, but is out of reach for someone like me, until I become very sick, is difficult to accept.” 

This recommendation is not aligned with the recommendations of Canada’s CF clinicians, who almost universally disagree with the limitation both CADTH and INESSS have placed on access,said Dr. John Wallenburg. “We are counting on the Minister to do the right thing and save lives by immediately funding Trikafta for all Health Canada approved indications. Canadians with cystic fibrosis have one of the highest rates of survival in the world, a testament to the quality of Canada’s CF clinicians, the real experts in this rare disease. Let’s ensure they are the ones making the important clinical decision of who should access this life-changing drug.”  

Health Canada approved the use of Trikafta in June 2021 to people aged 12 and up with cystic fibrosis and at least one F508del mutation. Trikafta’s cost effectiveness is still being considered by BC Pharmacare, and CADTH has not issued its final recommendations. Cystic Fibrosis Canada encourages these regulatory bodies to follow clinical evidence and the guidelines from cystic fibrosis clinicians, and issue more comprehensive recommendations. Both CADTH and BC Pharmacare will make non-binding recommendations on whether their respective governments should pay for the drug, after which the provinces will decide if they will fund the medication.

 Members of the Quebec community and supporters are invited to join a Facebook Live for #TrikaftaToday on September 2 at 2:00 pm EST on the Fibrose kystique Canada - Division Québec Facebook page. The event, hosted in French, will bring the community together to discuss the recommendation from INESSS, and next steps to gaining access to life-changing cystic fibrosis medications. 

For more 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: 581 998-5240

Nicole Young, Director
Tel: (905) 317-5529

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