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Volunteer Advocate


Position on barriers to access to break-through CF drug Trikafta in Canada
September 22, 2020

Introduction: Cystic Fibrosis Canada and the cystic fibrosis community, including more than 50 cystic fibrosis clinicians, have been reaching out to Members of Parliament calling for change as part of our relentless efforts to get immediate access to the break-through cystic fibrosis drug Trikafta and avoid preventable deaths among the Canadian cystic fibrosis community. In fact this weekend another young Canadian lost his life to this disease while another is pleading publicly for access to Trikafta to save hers. 

We would like to thank those MPs who have expressed their support.

Unfortunately, we have become aware of recent attempts by some government officials to divert attention away from the issues we are raising. We would like to make clear, for all parties involved, our position on access to Trikafta at this time. 

Cystic Fibrosis Canada’s Position: For a new medication to reach the hands of those who desperately need it, it requires both the commitment of the federal government to provide a fair and fast process for approval and to establish a fair price, and the manufacturer to apply for regulatory approval. Both parties play a role. Both parties must take action in good faith, ideally with the lives of those who live with the disease at the forefront of their decision making.

Today thousands of Canadians with cystic fibrosis have unprecedented hope because a drug exists that can transform their lives, and the majority of those living with the disease. This should be a time to celebrate. It should be a time when we embrace this scientific miracle and leapfrog forward to new destinies for Canadians with cystic fibrosis. It should be a time we see policy-makers champion the path to access. Instead, we face excuses, finger-pointing, delays, diversions and lost lives.

Cystic Fibrosis Canada expects both the government and the manufacturer, Vertex Pharmaceuticals, to do whatever is necessary to ensure Trikafta is available to Canadians. At Cystic Fibrosis Canada, we feel it is our responsibility to be explicit with the federal government and Vertex Pharmaceuticals on the actions each must take and to hold both accountable to make this happen.

Here are the facts. We have clinical trial data proving that Trikafta is the greatest innovation in the history of CF treatment with a transformational impact on recipients. We have research that demonstrates that if Trikafta was brought to Canada quickly, as it has been in the United States, the United Kingdom and parts of Europe already, it could result in extraordinary health benefits including longer healthier lives and less burden on the system. There is evidence that the government’s proposed changes to the Patented Medicines Price Review Board (PMPRB) have put a chill on pharmaceutical companies, including Vertex, to bring new, innovative medicines, like Trikafta, to the Canadian market. Vertex has stated that the uncertainty caused by the draft PMPRB guidelines has been a reason for their delay in submitting Trikafta to Health Canada for review.

The federal government’s attempt to oversimplify the issue and suggest that their hands are tied until the manufacturer applies is a diversion tactic and a complete abdication of their responsibility in the process. The government asked for these PMPRB guideline changes, and after two years of consultation, knows they are causing pharmaceutical companies to question the viability of introducing new treatments to Canada. The federal government alone has the power to change this.  

For more than two years, health charities across this country, including Cystic Fibrosis Canada, have asked the PMPRB and the federal government to moderate some of the changes proposed. We called for balance to the proposed regulatory system so that new and innovative medicines will come to Canada.  But after two years of appealing to the government, no significant changes have been made, and Canadians living with cystic fibrosis can’t access Trikafta. This is particularly disappointing given the government’s repeated promises that Canadians’ access to drugs would not be affected by the changes.

Cystic Fibrosis Canada is a small but mighty organization that has helped effect change, but in this case, it is the federal government that must stand up, and lay the groundwork for what is primed to be an exceptional moment in time for the country and those living with cystic fibrosis. We will continue to ask the government to address the facts of the situation head on, avoid diversion tactics, stop asking others to do their work, and to pave a way for innovative drugs for cystic fibrosis to continue to enter Canada. 

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