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Volunteer Advocate
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#CFcantwait Advocacy Update March 19

What’s making headlines

CF and COVID-19

During this strange and unsettling time, Cystic Fibrosis Canada remains committed to providing updates to you as new information on COVID-19 becomes available. Together with CF experts, we’ve created a COVID-19 Q&A page for the CF community. If there are specific questions you would like answered, please email us at advocacy@cysticfibrosis.ca. 

CF Canada has taken steps to minimize unnecessary risk to staff, community and volunteers. All staff are working at home, and we have suspended work-related travel, as well as in-person meetings. We have also postponed or cancelled many community events.

Advocacy

Last week’s press conference in Ottawa was important and resulted in interest from elected representatives, even with the focus on COVID-19. We remain committed to pushing forward to ensure we improve access to CF medications in Canada.

As much of our upcoming advocacy plans involved in-person meetings, we are working to move our work to a virtual format to keep the momentum going. We’re also adjusting our advocacy strategies to accommodate the need for social distancing. We will provide guidance and tools to support you in these efforts shortly. This means that our upcoming lobby days scheduled for May in Ottawa are postponed.

In addition, we will be adjusting our messaging. You have told us that living with CF is like living with COVID-19 every day, and that people with CF must take precautions every day to protect themselves from infection, and of course, that access to life-changing drugs, like Trikafta, would give people with CF a better chance of beating COVID-19 and other illnesses. As many of you already are doing, we will also be leveraging this messaging in our advocacy tools and strategy.

We have also updated the advocacy section of our website to include more information so that you can remain informed, learn more about our advocacy work, and how you can get involved.  

PMPRB stakeholder meeting

Following our February meeting with the PMPRB (mentioned in our February 27th advocacy update), Cystic Fibrosis Canada was invited to a stakeholder meeting with their Board in Ottawa on March 18. As a result of COVID-19, the meeting was cancelled. However, we will be asking them for a virtual meeting and will update you on what we hear.

Take Action

Have you seen our Take Action Toolkit yet? The toolkit will help you set up meetings, talk to the media and activate your network to join the fight for access to life-saving cystic fibrosis treatments in Canada. Given the current COVID-19 situation and because the safety of our community comes first, we are currently revising the toolkit with consideration for social distancing. We will keep you updated on these changes. 

Help us let the world know that #CFcantwait! Share your stories on social media and be sure to tag us so that we can amplify your voices. Need some inspiration? Take a look at our hashtag wall.

Community in Action

On March 17th, 11 year old CF warrior, Cassidy Evans, delivered a message to Saskatchewan Premier, Scott Moe, asking him to deliver on his promise to make life-saving CF medicines available in the province as part of the Canadian Cystic Fibrosis Treatment Society’s 100 day challenge. Please find the video footage here. 

Interested in more community-based news? Check out CF Get Loud Canada, a CF community-run group with a focus on advocacy and getting loud for cystic fibrosis.

This week’s media coverage

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