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Advocacy Update & Latest News from CF Canada: May 29

It’s the last week of CF Awareness Month! We hope you are staying safe and well. Here’s a round-up of the latest advocacy updates and news from Cystic Fibrosis Canada:

#CFCantWait: ADVOCACY UPDATES

CF Canada Statement on Trikafta & Special Access Programme (SAP)

Thanks to your engagement in our #CFcantwait Constituency Challenge and other collective advocacy efforts, we are being heard. We have received a lot of support from Members of Parliament (MP’s) nation-wide in our call to stop the Patented Medicines Prices Review Board(PMPRB) regulatory changes that are negatively impacting access to Trikafta. In addition, we are receiving even more support from MP’s on getting Trikafta to patients quickly if the drug is successfully submitted for and receives Health Canada approval. 

These commitments, while positive, also bring challenges. One of these challenges is that federal Minister of Health Patty Hajdu continues to cite the Special Access Programme (SAP) when asked about broader access in Canada. The SAP is not designed to provide broad access. It is designed to help  patients with serious or life-threatening conditions access medicines not available in Canada when conventional treatments are unsuitable or have failed. The SAP is not a replacement or stop-gap for having these medicines publicly available in Canada. It is a lifeline for those who most desperately need it.

Cystic Fibrosis Canada has written to the minister, and have met with Health Canada regarding our concerns. Some opposition members have taken interest in the issue, and we will keep the community informed as we learn more.

MORE NEWS

Ask the Experts: Reintegration – Wednesday, June 3, 12-1pm

On Wednesday, June 3, Cystic Fibrosis Canada will be hosting another Ask the Experts webinar with a new focus on reintegration. As the provinces begin their plans to lift the public health restrictions related to COVID-19, what does this mean for people living with CF? 

Our guest experts for the session will be Dr. Mark Chilvers, a Clinic Director at the B.C. Children’s Hospital, and Annie Thomas-Diceman, a social worker at the Toronto Adult Cystic Fibrosis Centre at St. Michael’s Hospital. 

If you have a question regarding cystic fibrosis, COVID-19 and reintegration, please send it to hello@cysticfibrosis.ca before June 3, so we can answer them during the webinar. 

COVID-19: New Benefits Finder Tool

The Government of Canada has introduced a new benefits finder tool, “Find financial help during COVID-19,” to help people determine which government programs best meet their needs. This tool provides information on federal, provincial and territorial benefits programs as well as measures such as mortgage and student loan referrals. After answering a few questions, the tool presents individuals with a personalized list of benefits based on their circumstances.   

Walk to Make Cystic Fibrosis History: Virtual Challenge 

Cystic Fibrosis Awareness month (May) may almost be over, but you still have time to make a lasting impact on the CF community in Canada. This year, for the Walk to Make Cystic Fibrosis History: Virtual Challenge, Cystic Fibrosis Canada is asking you to #WalkYourWay4CF. Whether you choose to run on the spot for 15 minutes, or go for a walk, your fundraising dollars will help us continue our mission work which includes, advocating for access to life-changing CF medications (like Trikafta) and CF research and care. 

Need some more convincing? Thanks to a generous donor, your donation will be matched until Sunday, May 31 up to a total of $50,000! Visit our website today to register and start fundraising!

COMMUNITY IN ACTION

CF Get Loud Virtual Town Hall – Wednesday, June 3, 1-2:30pm

CF Get Loud is hosting a Town Hall to discuss the current landscape of the fight for the right to breathe.  This event will identify key players of access, barriers to access, the drug approval process, and the need to act now.  This event is open to anyone interested in these issues, including Members of Parliament and provincial elected officials. The Town Hall discussion panel includes:

  • Dr. Elizabeth Tullis (CF Clinic – St. Michael’s Hospital)
  • Dr. John Wallenburg (Cystic Fibrosis Canada)
  • Durhane Wong-Rieger (Canadian Organization for Rare Disorders CORD)
  • Chris Macleod (CF Treatment Society)
  • Beth Vanstone (CF GET LOUD)

CF Get Loud is a movement of 4,000 advocates who are making waves. The organization works alongside and supports all organizations that are fighting to bring innovative medicines to the hands of Canadians with CF and other rare diseases, including Cystic Fibrosis Canada. By working together we will make Canada a country where people have access to life-saving transformative medicine. 

For more details visit CFGetLoud.ca or on FB @CFGetLoudCanada

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