How to Take Action

You’re ready to take action! Thank you for joining the fight for access to life-saving cystic fibrosis treatments in Canada.

Take action toolkit 

CF Canada’s Take Action Toolkit will help you do just that. It contains materials to support the latest advocacy initiatives:

• Key messages
• Four ways you can stand up and make your voice heard
• Tips for pitching to traditional media
• Social media tips
• Creative tools you can download and use
  
  • A4 poster
  • Facebook cover image
  • Twitter header image
• Meeting request letter template
• Do’s and Don’ts for meetings guidelines
• Briefing package for meetings - About Cystic Fibrosis, PMPRB briefing note and 2018 Highlights from the Canadian CF Registry

Last updated March 2020

Here are four ways for you to stand up and make your voice heard:

Contact your elected officials

• Write a letter, send an email or make a phone call to your federal and provincial elected officials. Introduce yourself as a constituent. Provide them with a copy of the government briefing package included above. Ask your federal representative to tell the Prime Minister and the federal Minister of Health to stop the Patented Medicines Prices Review Board (PMPRB) regulatory changes that are impacting access to Trikafta. Ask your Premier and provincial representatives to tell the federal government to stop these changes. Tell both levels of government to fast-track access to Trikafta now.

• Write to the Prime Minister and the federal Minister of Health to tell them to be the leaders we need them to be. Tell them about how the PMPRB changes are affecting access to Trikafta and that they need to stop implementation. Tell them to work with the provinces, the manufacturer and all drug review and reimbursement bodies to fast-track access to Trikafta.

• Meet with your federal and provincial elected officials. Reach out to their constituency offices to arrange a meeting. Use the template letter in this package for your meeting request. The best time to visit a constituency office is on Friday, when both federal and provincial members are in their ridings. Like above, be sure to communicate your asks. Always put a timeline on any commitments made and tell their office when you plan to follow up. Follow up as promised. Be persistent and polite: staff are the gate-keepers.

• Attend debates, town hall meetings, festivals, community celebrations or other local events your federal and provincial members are attending. Invite them to your CF Walk and other cystic fibrosis related events and activities.

• Check all elected representatives’ websites and social media accounts for events they are hosting. Go to these events and talk to the politicians and their staff about our key issues. Be specific and succinct: the politician will likely give you two minutes or less. They need to work the room. If they do not respond to your question be prepared to ask a follow-up question or to tell them that you will follow up with a meeting request.

Engage on Social Media

• Use social media to raise awareness of the issues and to engage your elected officials. Tag them and use Twitter, Facebook, Instagram, LinkedIn and YouTube to teach them about the impact the PMPRB is having on access to #trikafta and why #cfcantwait. Ask them to commit to doing #whateverittakes to stop the #pmprbchanges and to grant access to Trikafta now. Share updates or spread awareness by voicing your concerns on social media.

• Follow your elected representatives, on social media. Tweet, and share information on CF with them. Use our Twitter lists to find your Member of Parliament. 

Engage the media

• Write a letter to the editor of your local news outlet and share your point of view. It must be no longer than 250-300 words. Make sure your letter is focused, concise and calls for action.

• Call your local radio or television stations or community newspapers and ask for information about any reporters covering the election. Contact them to inform them of one of our major objectives.

• For assistance with writing a letter to the editor, media relations or if you require media training; please contact the Corporate Communications team at Cystic Fibrosis Canada. Email: mediarelations@cysticfibrosis.ca.

Activate your network

• Keep doing what you are doing. Organize grassroots events like rallies, online challenges, video campaigns, and other actions that grab the attention of politicians and public servants.

• Where possible, coordinate efforts with CF Canada. We can help you amplify your voices through our reach into the CF community, and so we can build on each other’s momentum.

• Keep getting loud. Keep going. Don’t stop until you get what you want.

We cannot sit idly by while our community suffers. Canadians expect better. We are running out of time. We will continue to elevate our voice and the voices of others to get the access to these treatments that the CF community deserves.

National Advocacy Network

Cystic Fibrosis Canada’s National Advocacy Network has more than 200 trained volunteers across Canada, enabling us to actively influence public policy related to cystic fibrosis nationwide.

Our trained advocates can have a significant impact on the way CF issues are addressed in Canada by all levels of government. Working with CF Canada’s guidance, training and support, advocates build relationships with elected and non-elected officials in order to increase support for programs, services and policies that can improve the quality of life for people with cystic fibrosis.

We welcome new advocates; contact us at advocacy@cysticfibrosis.ca. Or check out our Take Action page for the latest on how the CF community can support our advocacy work.

As always, we are here to help. Contact us at advocacy@cysticfibrosis.ca or 1-800-378-2233.