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Advocacy Update & Latest News from Cystic Fibrosis Canada: August 31

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

#CFCantWait: ADVOCACY UPDATES

4,163 People Join Cystic Fibrosis Canada And Ask: “Canada, What Are You Waiting For”?

Published on Monday, August 24, by a Canadian research team from Dalhousie University, the Hospital for Sick Children (SickKids) and St Michael’s Hospital, a new study shows that if received by 2021, Trikafta a cystic fibrosis (CF) modulator drug, would result in profound health improvements for people living with CF. By 2030, Trikafta could reduce the number of people living with severe lung disease by 60% and reduce the number of deaths by 15%. 

With this new evidence, we are asking loudly and publicly, Canada, what are you waiting for?  We implore all levels of the government to expedite Trikafta’s immediate entry into Canada and public access nationwide. If you’d like to get involved, please use our digital letter template to send a letter to your local MP.

So far, we’ve sent 4,163 letters to 98% of Canadian MP’s. We’ve reached out to key news outlets across Canada to help spread the message, which resulted in 13 articles and broadcast segments. We have also held briefing meetings with  key decision-makers at Health Canada and throughout Canada’s drug access decision making system and have provided tools and support for our community members to meet with their Members of Parliament. 

The study analyzed three scenarios, which included the impact on the health of people with cystic fibrosis in the year 2030 if they received Trikafta in 2021; if Trikafta is delayed until 2025; and, if it doesn’t become available in Canada at all.

The results were profound, and showed that an early introduction of Trikafta, in comparison to no drug available would result in the following health outcomes by 2030:

  • The estimated median age of survival for a child born with CF would increase by 9.2 years
  • 60% fewer people living with severe lung disease
  • 18% increase in people with mild lung disease
  • 19% fewer hospitalizations or home intravenous courses for chest infections
  • 15% fewer deaths, and 
  • A reduction in the number of transplants that are required for severe lung disease

To ensure the impact of these research findings are understood, we held research briefings for key decision-makers, including but not limited to:

  • Health Canada
  • Patented Medicines Prices Review Board (PMPRB)
  • Canadian Agency for Drugs and Technologies in Health (CADTH)
  • Institut national d’excellence en santé et en services sociaux (INESSS)
  • Provincial drug program managers

Our call to action is for leaders in these agencies to work with all relevant regulatory, review and reimbursement bodies to fast-track access to Trikafta upon Health Canada approval. We will be briefing federal and provincial health critics and key committee members on August 31, 2020. 

In addition to the digital letter template for MP’s, we have developed some new federal advocacy tools that you can use to meet with your Member of Parliament, including a downloadable MP meeting request letter and a briefing note on Trikafta that you can use as a meeting preparation tool and as a leave behind document for your MP. 

MORE NEWS

Ask The Experts: Going Back to School/ Work During COVID-19

On Wednesday, August 19, we hosted our fifth Ask the Experts webinar session where we discussed re-integration and returning to school and work, and the safety measures that are being put in place in schools. Our guest experts, Annie Thomas-Diceman, a CF social worker at St. Michael’s Hospital in Toronto, and Dr. Melinda Solomon, a cystic fibrosis clinic director at The Hospital for Sick Children in Toronto covered topics such as social distancing within schools, and offered some guidance on how to make decisions this fall that best suit your family’s situation. 


For more information on COVID-19 and cystic fibrosis, please visit the COVID-19 Information for CF Community section on our website where we have compiled resources to help keep you up to date with the latest information. Did you miss the webinar? Please check out a recording of the session below.

Evolve Fitness Partners with Cystic Fibrosis Canada

In July 2020, Cystic Fibrosis entered a year-long virtual partnership with Evolve Fitness, a Nova Scotia-based fitness centre. Members of the CF community who sign up for a $30 (CAD) monthly membership for online fitness classes will see $10 (CAD) of their membership fees donated to Cystic Fibrosis Canada every month, for a year!

Interested in a free 30-day trial of Evolve Fitness’ virtual workout classes? Visit the Evolve Fitness website by September 1, 2020 and sign up! Be sure to mention “Cystic Fibrosis Canada” when filling out the sign up form. 

The funds donated to Cystic Fibrosis Canada will help fund our critical mission work to improve access to life-changing cystic fibrosis medications, like Trikafta,  improve quality of cystic fibrosis care, and advance cystic fibrosis research in Canada.

Cystic Fibrosis Canada Awards thyssenkrupp Elevator Canada with National Champion Award

We would like to extend a huge congratulations to thyssenkrupp Elevator Canada, who received our 2019 National Championship Award in July 2020! The National Championship Award recognizes service groups, corporations, companies and businesses that have provided exceptional leadership and/or financial support to the organization at the national level. Since 2017, thyssenkrupp Elevator Canada has raised more than $360,000 for Cystic Fibrosis Canada.

Thyssenkrup Elevator Canada, we thank you for your continued support, and for your dedication to helping Canadians living with CF live longer and healthier lives. 

IN THE MEDIA

DID YOU MISS IT?

  • See our news release about the new research surrounding Trikafta 
  • See our last blog post on the PMPRB and the impact it has on access to cystic fibrosis medicines