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Advocacy Update & Latest News from Cystic Fibrosis Canada: September 25

Please see below for the latest news and advocacy updates from Cystic Fibrosis Canada this week:

#CFCantWait: ADVOCACY UPDATES

Cystic fibrosis Clinicians Take a Stand

On September 17, more than 50 Canadian cystic fibrosis clinicians shared an open letter addressed to all levels of government, imploring them to fix the policies and regulations that are standing in the way of access to life-changing medicines, like Trikafta. This was in follow up to a Canadian study published in August, demonstrating that early access  to Trikafta would result in dramatic health benefits for up to 90% of Canadians living with cystic fibrosis, and that continued delays to access would result in preventable deaths. The support from the medical community, facilitated by Cystic Fibrosis Canada, will be shared with government officials. 

Help us spread the word! Trikafta is a drug that belongs in the hands of all Canadians living with cystic fibrosis who are eligible to to take it. Using our easy digital template, send a letter to the editor of your local newspaper, and tell your community why people living with cystic fibrosis need access to Trikafta now. Over 161 letters have been sent to date. 

Our Position on the Barriers Affecting Access to Trikafta

Thanks to the community, more than 5,400 letters have been sent to 98% of the Members of Parliament (MP’s). While some MP’s have expressed their support publicly, the Federal Government is diverting attention away from the issues we are raising and oversimplifying them.

On September 22, 2020, we released a statement regarding recent attempts by some government officials to avoid their responsibility in ensuring that innovative medicines, like Trikafta, can be made available in Canada. We want to make it clear that we will not stand for diversion tactics while Canadians are losing their lives to this disease. 

We have clinical data proving that Trikafta is the greatest innovation in the history of CF treatment. There is research that demonstrates dramatic health outcomes for people living with lung disease if Trikafta is brought to Canada quickly. With all of this evidence in hand, join us as we ask, Canada, what are you waiting for? 

Help us keep up the momentum! Using our easy to use digital template, write a letter to your local MP and let them know that there is no time to wait. Let them know that the current drug reimbursement system is broken and people living with cystic fibrosis are losing their lives because of it. 

MORE NEWS

CF Clinical Trials Network Now Covers More Than 60% of Canadian CF Population

We are proud to announce the expansion of the Cystic Fibrosis Canada Accelerating Clinical Trials Network (CF CanACT) from six sites across Canada, to ten. The four sites that have joined the clinical trials network are, the Quebec City adult and paediatric CF clinics (including three satellite sites in Rimouski, Chicoutimi and Sherbrooke), the Montreal adult CF clinic located at the Centre Hospitalier Universitaire de Montréal, the Halifax adult CF clinic, and the Saskatoon adult and paediatric CF clinics. 

With these additions to the Canadian clinical trials network, CF CanACT will collectively cover more than 60% of the cystic fibrosis population in Canada. Having more sites across Canada will mean better access to clinical trials for everyone with cystic fibrosis, through referrals to one of the CF CanACT sites.

Clinical trials test potential new drugs, treatments and devices to assess how well they work, and whether they offer benefits over currently used drugs, treatments or therapies. World-class clinical trials are an integral part of the process that brings new therapeutics and better care to Canadians living with cystic fibrosis.

For more information on clinical trials, please visit our CF CanACT webpage. 

COVID-19 Resources 

COVID-19 has been challenging for all of us. As we continue to navigate new rules regarding going back to school and reentering the workplace, we are here to support you. We continue to update our COVID-19 Information for the CF Community resource page with the latest in provincial reintegration plans, mental health and wellness resources, and much more. 

If you have any questions about COVID-19, please send an email to advocacy@cysticfibrosis.ca.

IN THE MEDIA

DID YOU MISS IT?

  • See our last Advocacy Update and Latest News blog post 
  • Read our press release on the CF CanACT clinical trials network expansion