Please see below for the latest news and advocacy updates from Cystic Fibrosis Canada this week:
#CFCantWait: ADVOCACY UPDATES
House of Commons Standing Committee
On Monday, October 26, 2020, the House of Commons Standing Committee on Health (HESA), voted to support a motion for further consultations on the PMPRB guidelines conducted by the HESA committee. HESA is a committee responsible for the oversight of Canadian health issues.
Cystic Fibrosis Canada provided a written submission to the first part of the study’s consultation process. In preparing our submission, we worked closely with CF Get Loud, CF Treatment Society the Canadian Organization for Rare Disorders (CORD), Best Medicines Coalition (BMC), and the Health Charities Coalition of Canada (HCCC). We have also requested to be present at the committee hearings which are due to take place before committee members by the end of the year.
PMPRB Guidelines and Upcoming PMPRB Webinar
On October 23, 2020, the Patented Medicines Price Review Board (PMPRB) released the final version of the revised guidelines which will come into force on January 1, 2021. We are disappointed that the new guidelines do not appear to have factored in any of Cystic Fibrosis Canada’s recommendations that were submitted during the guidelines consultation process, nor do they keep patient voices at the centre. For more information on our position on the guidelines, please visit our website.
On November 20, 2020 from 1:30PM to 2:30PM (EST), the PMPRB will be hosting a public webinar to communicate key elements of the guidelines and address questions. The registration link will be available a few hours before the webinar and can be accessed on canada.ca.
All Party Caucus Meeting
We are working on scheduling the next meeting for the all party emergency access to Trikafta caucus. We will provide more details when available. The caucus has been formed to find all party solutions to getting Trikafta into the country and into the hands of those who need it.
Canadian Clinics Meeting
The Canadian Clinics Meeting took place on November 4, 2020, and was attended by clinicians and researchers from across Canada. Every year, scheduled alongside the annual North American Cystic Fibrosis Conference, Cystic Fibrosis Canada hosts separate meetings specifically for the Canadian medical community to share best practices and learnings about cystic fibrosis in Canada.
This year, we provided an update about the important work Cystic Fibrosis Canada has been doing over the last several months, our new strategic priorities, important changes to the healthcare and research programs, our ongoing advocacy efforts, as well as CF CanACT.
Together, we will continue to deepen our collective understanding of the disease and drive forward innovation in treatments and care.
North American Cystic Fibrosis Conference
The North American Cystic Fibrosis Conference (NACFC) took place virtually this year between October 21 to October 23. The annual conference brings together scientists, clinicians and care teams globally to discuss the latest advancements in CF research, care, treatments and drug developments.
Didn’t get a chance to watch any of the plenaries? Check them out below:
- Plenary 1: Laying the Foundation for the Path to a Cure: The Fundamentals of Genetic-Based Therapies
- Plenary 2: Defining the New CF in the Era of Highly Effective Modulators
- Plenary 3: Advancing the GI Frontier for People with CF
For more information on the North American Cystic Fibrosis Conference (NACFC), please visit their website.
IN THE MEDIA
- John Ivison: The math of saving lives — Canada’s drug battle leaves patients caught in the middle (This article was shared in over 90 news outlets across Canada).
- We’re at Risk of losing world class medical treatments in Canada op-ed via Toronto Star
- Patients, health organizations band together to bring breakthrough treatments to Canada sooner
- Health Matters: medication price controls
- ‘I want to think my life matters’: Man with cystic fibrosis trying to get drug approved in Canada
- Family of a 13-year-old girl with cystic fibrosis appeals to Ottawa to approve a life-saving drug via CHCH
DID YOU MISS IT?
- See our last Advocacy Update and Latest News blog post.