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CF Patients and Parents Push Provinces for Public Access to Life-Changing Medicines

April 12, 2021

Today, Cystic Fibrosis Canada is officially launching the #CFcantwait Provincial Meeting Challenge, through which we are calling on our community members to  meet with as many provincial elected officials as possible across Canada, from April to June 2021 as part of our fight for access to life-changing medications, including Trikafta, for the Canadian cystic fibrosis (CF) population.  

Calling on our community to meet with their provincial elected representatives is an important activity to help ensure life-changing cystic fibrosis drugs, like the breakthrough drug Trikafta, get into the hands of Canadians who need them. Trikafta could change the lives of 90% of the Canadian cystic fibrosis population, but red tape means Canadians with CF continue to wait for access while their health declines without the drug. Some people lost their fight along the way. 

While Cystic Fibrosis Canada has been fighting for access to Trikafta since the FDA approved the drug in the US in October 2019, the timing of the #CFcantwait Provincial Meeting Challenge is an important and needed step. Critical decisions are expected from government bodies in June 2021 that will impact access to Trikafta in Canada. Pending positive outcomes of those decisions, the next hurdle is getting provincial governments to immediately add Trikafta to their public drug plans for as many people as possible.   

The Meeting Challenge, run by Cystic Fibrosis Canada, gives the an opportunity to have the CF community’s voices heard on the need for urgent access to Trikafta and other CF drugs. More than 250 volunteers of the Cystic Fibrosis Canada National Advocacy Network, as well as participating CF community members, are being equipped by CF Canada to engage with their local provincial elected officials and to get their help in spreading our collective message that #CFcantwait. 

Trikafta is the closest thing that 90% of Canadians living with CF have to a cure. While we wait for approvals, some Canadians lives could be changed by access to the drugs Orkambi and Kalydeco, which have already been in price negotiations with public payers for almost a year” said Kelly Grover, President and CEO of Cystic Fibrosis Canada. “Cystic fibrosis is a fatal disease and this community doesn’t have time to wait for drugs that can save lives. In every meeting, we are telling government that CF can’t wait and we are asking for urgent action.” 

The #CFcantwait Provincial Meeting Challenge gets CF voices heard and every voice matters. That’s why at every step, from reaching out to their elected official, to prepping and learning messaging for their meeting, each participant will be fully supported by Cystic Fibrosis Canada and its National Advocacy Network, through tools, resources collaborative briefings and more Members of the public who want to get involved can find information on the CF Canada website in the advocate’ section. 

Last year in 2020, the #CFcantwait Federal Meeting Challenge was a success. The priority at that time was to pressure federal elected officials to stop the changes to the Patented Medicine Prices Review Board (PMPRB) which were delaying access to Trikafta. The goal of the challenge was to hold as many meetings across Canada as possible. Participants went above and beyond, achieving meetings with 40% of members of Parliament. Ultimately the meeting challenge and other strategic initiatives led by Cystic Fibrosis Canada were successful and the PMPRB delayed the implementation of their proposed guidelines which helped pave the way to a Health Canada application for Trikafta. 

The #CFcantwait Provincial Meeting Challenge is designed and executed by Cystic Fibrosis Canada, with the support of the Lead Provincial Advocates of the National Advocacy Network and thanks to the generosity of Cystic Fibrosis Canada’s donors and supporters. 

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