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You’re ready to take action! Thank you for joining the fight for access to life-saving cystic fibrosis treatments in Canada.
Cystic Fibrosis Canada manages the National Advocacy Network which has more than 250 trained volunteers across Canada, enabling us to actively influence public policy related to cystic fibrosis nationwide. Find out more about the National Advocacy Network and how you can get involved.
Take action toolkit
The purpose of this Take Action Toolkit is to provide members of the CF community with strategies, resources and informative messaging to help them execute various advocacy initiatives. The Take Action Toolkit provides necessary material needed to be active in both government and media relations. Here you’ll find resources for arranging meetings with elected officials, briefing notes for attending meetings and guidelines to prepare. Community members may also use creative material for social media posts and tips for traditional media pitching. If you have any questions about the Take Action Toolkit please contact advocacy@cysticfibrosis.ca.
Four ways for you to take a stand 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.
My name is Mia Gaudenzi and I’m 12 years old. I was born a seemingly healthy baby until around 3 years old when I became ill with pneumonia regularly. Doctors just thought I was unlucky until I had my sweat chloride tests to rule out CF.
