Advocacy Update & Latest News from CF Canada: April 16
APRIL 16, 2020
WHAT’S MAKING HEADLINES
Ask the Experts webinar series
We’re running a series of Ask the Expert webinars to provide you with the latest information about COVID-19. Our experts answer commonly asked questions from the cystic fibrosis community. To find out more about the series, or to view past recordings, please visit our website.
View the latest webinar now to see social workers, Annie Thomas-Diceman, from St Michael’s Hospital, Toronto, and Pat MacDiarmid, from St Paul’s Hospital, Vancouver, discuss mental health, employment/financial supports and transition from pediatric to adult CF clinical care.
Safer shopping amid COVID-19
It’s a concerning time for people living with cystic fibrosis. Basic activities, like doing groceries, have become risky and stressful because of the unavoidable interaction with people and public spaces, and therefore increased risk of infection.
To encourage a safer environment for people living with cystic fibrosis, we’ve written a letter to all major grocers noting that people with cystic fibrosis and their caregivers may require additional protections to be put in place when shopping. We’ve also asked that delivery fees be made affordable for people with CF.
We’ve also created a template letter that you can use to let your local store know about why you need additional protections while shopping for food.
#CFCantWait: ADVOCACY UPDATES
Stopping the PMPRB changes
Cystic Fibrosis Canada continues to pressure the Patented Prices Review Board (PMPRB) to stop regulatory changes that are impacting access to life-changing medications, like Trikafta.
Our Chief Executive Officer, Kelly Grover, and Chief Scientific Officer, Dr. John Wallenburg, met with the Executive Director of the PMPRB on April 7. The meeting was quite positive, but there is still work to be done to stop these changes from being implemented before the July 1st deadline.
Cystic Fibrosis Canada will continue to apply pressure until these regulations are stopped. After the meeting with the PMPRB, we again wrote to federal Health Minister, Patty Hajdu, calling on her to stop the implementation of the PMPRB changes, and to fast-track access to Trikafta. For more information on the PMPRB changes, please visit our website.
Constituency Challenge in May
We are working with members of our National Advocacy Network to prepare for Cystic Fibrosis Canada’s virtual Constituency Member of Parliament (MP) Meeting Challenge, through which advocates are meeting with MPs to call for a stop to the PMPRB changes and to fast-track access to Trikafta. Our goal is to meet with as many MPs as possible before the end of May (CF Awareness Month).
Would you like to get involved? Join our National Advocacy Network by contacting firstname.lastname@example.org.
New resources: Mental Health & COVID-19
The COVID-19 pandemic has caused an unprecedented global situation that we are all still adapting to. With this in mind, we’ve added a section to our website to provide you with COVID-19-related mental health and wellness resources.
Advocating for ventilator access
We’ve heard and shared your concern about ventilator access for people with cystic fibrosis who have contracted COVID-19. Together with the cystic fibrosis clinical community and our Health Advisory Council, Cystic Fibrosis Canada has endorsed a letter to Ontario Health, and through them, to public health leads across Canada. The letters contained recommendations on how to prioritize access to ventilators for people with cystic fibrosis who have contracted COVID-19 and who require a ventilator. Stay tuned for updates.
National Volunteer Week – April 19-25
As a charitable organization, Cystic Fibrosis Canada was founded by volunteers, and to this day, relies on the support of thousands of volunteers across Canada. We are indebted to many who give selflessly through volunteerism in fundraising, advocacy, awareness and other initiatives through the: Cystic Fibrosis Canada Chapter network, our partnership with Kin Canada, Lawn Summer Nights, Shinerama, The Robbie International Soccer Tournament, and many other individuals, families and groups.
While we appreciate our volunteers year round, we offer special thanks to everyone during Volunteer Week. It’s because of your efforts that we are able to advance our mission and strive together toward our vision of a world without CF. Thank you!
THIS WEEK’S MEDIA COVERAGE
- Winkler Family Fighting for Miracle Drug for Infant Daughter
- Living Through COVID-19 with a Weakened Immune System
DID YOU MISS IT?
- See last week’s advocacy and latest news blog post.
- View our recent advocacy webinar about access to medicines, via drop-box.
- View last week’s Ask the Experts COVID-19 webinar.
- Access information and resources for COVID-19 and CF.
- Register for the 2020 Walk to Make Cystic Fibrosis: Virtual Challenge!