Advocacy Update & Latest News from Cystic Fibrosis Canada: October 9

OCTOBER 9, 2020

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


Meeting with Minister Patty Hajdu

On October 7, 2020, we met with federal Health Minister Patty Hajdu. We spoke about the need for urgent access to Trikafta. The Minister agreed to fast-track access to Trikafta and noted that Health Canada is ready for Vertex to apply. She also confirmed that she is in discussions with the provinces regarding expediting price negotiations.

We discussed Cystic Fibrosis Canada’s recommendations to the Patented Medicines Prices Review Board (PMPRB) guidelines, stressing that the guidelines are not balanced between the government’s interest in lowering drug prices and the need for Canadians to have timely access to innovative medicines. We also noted that our position was shared by many others including the Health Charities Coalition of Canada, researchers, clinicians and most recently by the BC Cancer Agency. Despite some positive indications noted in our meeting with the Health Minister regarding Trikafta, we are disappointed that there was no commitment to reconsider the PMPRB guidelines. We will continue to push.

We also discussed the government’s interest in developing a strategy for drugs for rare diseases, noting that Cystic Fibrosis Canada has infrastructure in place, such as our registry, clinic network, and other programs and initiatives that could support the design of this strategy. We were encouraged to share more information with the Minister’s staff. 

Meeting with Conservative Health Critic, MP Michelle Rempel Garner

Today, we met with the new Conservative Health Critic, MP Michelle Rempel Garner and colleagues MP John Barlow, MP Larry Maguire, and MP Chris d’Entremont, all of whom will become part of the new standing committee on Health. We spoke to them about access to Trikafta and future game-changing therapies. They listened compassionately, told us that addressing our access issues are a top priority, and promised to hold the government’s feet to fire.

Cystic Fibrosis Canada Presents on Behalf of CF Clinicians & Researchers in Court Case

Cystic Fibrosis Canada, alongside the Canadian Cystic Fibrosis Treatment Society, The Intellectual Property Owners Association, BIOTECanada and the Canadian Organization for Rare Disorders (CORD), presented in a court case challenging the power of the Patented Medicine Prices Review Board (PMPRB), to set maximum prices for patented drugs in Canada. The case also raised issues related to the effect the new PMPRB guidelines would have on the healthcare system, the innovative aspect of research (including precision medicine) and most importantly, on patients with rare diseases and their access to life-saving medication. 

Cystic Fibrosis Canada presented on behalf of cystic fibrosis researchers and clinicians on the impact of the regulations. 

The case was brought by seven pharmaceutical companies (Merck Canada Inc.,Janssen Canada Inc., Servier Canada Inc., Boehringer Ingelheim (Canada) Ltd., Bayer Inc.,Theratechnologies Inc. and Avir Pharma Inc.) who are seeking a declaration that the Patented Medicines Regulations and a portion of the Patent Act, and therefore the PMPRB guidelines, are unconstitutional and therefore should be repealed.

Cystic Fibrosis Clinicians Continue to Take a Stand

Cystic fibrosis clinicians  continue to show their support for the need to access cystic fibrosis modulators.   There are now 74 clinicians who have signed the open letter calling for the government to fix Canada’s broken drug review and reimbursement system that is negatively impacting access to life-changing drugs, specifically Trikafta. Thank you to all the cystic fibrosis clinicians who have signed the letter. 

Tell Your Local Community Paper Why Access to Trikafta is Needed Now

Trikafta belongs in the hands of all Canadians living with cystic fibrosis who are eligible to to take it. This  drug is currently available in the U.S.A, the U.K, and in Germany, with other European countries not far behind. Canada, what are you waiting for? Using our digital letter template, send a letter to the editor of your local newspaper and tell your community why it is imperative that the government and drug manufacturer work together to bring Trikafta to Canada. So far, 201 people have submitted a letter to the editor. Check out this published example of a letter written by Erica from Nova Scotia.  Help us spread the word! Send your letter today. 


October 10, 2020 is World Mental Health Day

In honour of World Mental Health Day on October 10, we want to share a  list of mental health and emotional wellness resources for people of all ages, living or caring for someone with a chronic illness (like cystic fibrosis). For more information, please see our  Cystic Fibrosis Resource Guide. For COVID-19-related mental health resources, please see our list of resources for Mental Health and Wellness.

The COVID-19 pandemic has added additional stress on many in the cystic fibrosis community and all over the world, and we want to make sure that you have the resources that you need during this time.

MNP Partners with Cystic Fibrosis Canada

In 2019, MNP LLP, a leading national accounting, tax and consulting firm in Canada, partnered with Cystic Fibrosis Canada in support of the Hutterian Brethren, where there is an above average occurrence of cystic fibrosis within their communities. 

Over the next three years, MNP will provide $90,000 of funding to assist Cystic Fibrosis Canada’s efforts to support new cystic fibrosis therapies, research, advocacy initiatives for improved access to life-changing medications like Trikafta, and genetic technologies. MNP represents the interests of 350 Hutterite colonies across Canada, and have worked collaboratively with the Hutterite Brethren for more than 60 years.

Thank you, MNP,  for your generous support!


Cystic Fibrosis Canada Event Calendar

Want to stay up to date on upcoming cystic fibrosis fundraising events like  Quest4CF, or Raise a Glass to Make Cystic Fibrosis History happening in your community? Be sure to check out our events calendar for a full list of great events happening near you! 

In Vancouver, B.C, the 20th annual 65 Roses Gala will be taking a new virtual approach with the 65 Roses – 6 Feet Away Soiree. Leona Pinsky, Chair of the Board of Directors at Cystic Fibrosis Canada, was interviewed by Peter Legge in a recent video about cystic fibrosis,  the history of the 65 Roses Gala, and what event go-ers can expect from the event this year. 



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