Advocacy Update & Latest News from Cystic Fibrosis Canada: December 11

DECEMBER 13, 2020

#CFCANTWAIT ADVOCACY NEWS

Trikafta submission update

A senior Health Canada official confirmed on a CF Canada webinar that as of December 4, 2020, Health Canada has received  an application to review Trikafta. The application is being screened and the Health Canada website will be updated to reflect the formal application when the screening is complete. Cystic Fibrosis Canada will provide our community with ongoing updates regarding the status of this application and access to Trikafta in general. . 

In the meantime, we continue to do the following:

• Working with a federal, all party caucus on emergency access to Trikafta to help the minister meet her commitment to fast-track Trikafta, to get the broadest indication possible, and to work with caucus member’s provincial counterparts to build support for fast and fair access on public plans. 

• Replicating the federal all party caucus model in provinces where required,  and devising alternate strategies where necessary. We are working with our colleagues from CF Get Loud and the CF Treatment Society on these initiatives.

• Calling on all provincial Health ministers to provide written commitments to fast and fair negotiations and to list Kalydeco, Orkambi and Trikafta immediately after negotiations close. We are using Newfoundland and Labrador’s Minister’s letter as an example to drive commitments.

• Meeting with the pCPA and provincial drug program managers for an update on negotiations and to stress the need to include Trikafta, to reimburse for all indications and to reimburse broadly for Kalydeco and Orkambi too.

• Hosting meetings with provincial elected and unelected officials through our National Advocacy Network, our community members and partners.

• Preparing to launch our community survey to inform our patient group submissions to CADTH and INESSS, the bodies that examine the cost-effectiveness of medicines. These surveys will be launched in early January. 

Access to CF modulators webinar series

We’ve hosted the first two webinars in our series on access to CF modulators. The purpose of this series is to educate and support our community by hosting  discussions with experts and sharing crucial information on various subjects regarding these life-changing therapies. If you missed them recordings can be found on our website. More webinars will be presented in the new year.

Webinar 1
Understanding CF modulators – hosted by Dr John Wallenburg and Dr Martha McKinney, CF clinician 
Recording available here.

Webinar 2
Modulators in Canada’s Health System – Hosted by Dr Supriya Sharma from Health Canada, William (Bill) Dempster from 3Sixty Public Affairs and Kim Steele
Recording available here.

All party caucus meeting

We met again with the all party caucus on emergency access to Trikafta, along with our colleagues from CF Get Loud and the CF Treatment Society. We discussed the need to work with the caucus to ensure the federal Minister of Health keeps her promise to fast-track access to Trikafta, as well as working with caucus members to leverage their relationships with provincial colleagues to build support for fast and fair reimbursement pf Trikafta, Kalyedeco and Orkambi. 

The caucus will meet again in January. 

Special Access Program

A senior Health Canada Official announced during our webinar on Modulators in Canada’s Health System that the special access program for Trikafta will be extended to include children from 6 years old. Speak to your clinician for more details on accessing Trikafta through the special access program. 

FURTHER NEWS

Standards of care

Cystic Fibrosis Canada launched the first in a series of new standards of care and guidelines related to the treatment of CF including Antibiotic Dosing Guideline for Cystic Fibrosis and Canadian Consensus Statement on Aerosolized Antibiotic Use in Cystic Fibrosis. These standards provide relevant information in a Canadian context, and can be referenced as needed by any healthcare provider. Canadians with cystic fibrosis and their loved ones will be able to mention these resources to their clinician, if they are receiving care outside of a specialized CF clinic, as a reference point if and when needed. There are additional standards currently being developed that will be shared in 2021. 

2019 Registry Report

This week Cystic Fibrosis Canada released the Canadian Cystic Fibrosis Registry’s 2019 Annual Data Report which examines key trends as well as health outcomes for people living with cystic fibrosis across Canada. Insights from the 2019 report support that early diagnoses, as well as advancements in available treatments, continue to improve both quality of life and survival for the thousands of Canadians with cystic fibrosis. That said, we know there is still much work to be done.

Holiday Giving Campaign

How will you push further for Canadians with cystic fibrosis this holiday season?

When living with a rare and fatal disease like cystic fibrosis (CF), simple moments of joy are treasured even more. Moments that were once unimaginable, such as going to university, getting married, or watching their children take their first steps, are now possible thanks to the generous donor support over the years. However, we are pushing further so that these special moments and more, are not just hopes, but realities for all Canadians living with CF.

This November, we launched our 2020 holiday giving campaign, called Moments, so that we can continue to help people with CF live longer, healthier, more fulfilling lives. This holiday season, we are asking you to help us push further for Canadians living with CF, so that they may have a full lifetime of special moments. Donate today: formoremoments.ca

Holiday e-cards

Cystic Fibrosis Canada recently launched a new fundraising initiative for the holiday season with digital e-cards. These cards can be sent to a loved one for a small donation to Cystic Fibrosis Canada. We are very excited to try this new tool which will help bring joy this challenging holiday season, while also raising money to support cystic fibrosis research, advocacy and healthcare. 

Walk to Make Cystic Fibrosis History

The Walk to Make Cystic Fibrosis History will take place on Sunday 30th May 2021. We are committing to a virtual event from the start, with possible in-person celebration day events and symbolic walks in select locations where possible due to the pandemic. Stay tuned for registration opening in January and incentives for early sign ups. 

Thank you to Kin Canada

The Kinsmen Club of Winnipeg has raised and is donating an amazing $100,000 to Cystic Fibrosis Canada. This is one of the largest single donations to CF Canada ever and, as far as we know, the largest single contribution from any Kin club during our 56 year partnership.  We are so grateful to The Kinsmen Club of Winnipeg and all Kinsmen and Kinettes across the country for their years of support and we applaud them for always pushing further for people living with cystic fibrosis.