Cystic Fibrosis Canada
2323 Yonge St, Suite 800 M4P 2C9 Toronto, ON, Canada

On October 18th communities across Canada participated in Quest4CF, a brand new socially distanced scavenger hunt to raise funds for cystic fibrosis. Questers assembled their teams, picked out costumes to wear, and ventured out in their vehicles to solve clues and riddles on their Quest for treasure. Thank you to everyone who participated, volunteered or sponsored this event. We are thrilled to announce that Quest4CF raised a grand total of $83,000!

"As the leaders of health charities and groups that represent 2.9 million patients across the country, we feel compelled to speak out and implore the government to reconsider [the PMPRB] changes. The lives of millions of Canadians depend on it" via The Toronto Star https://www.thestar.com//were-at-risk-of-losing-world-clas

Read about our advocacy work and position on the recent developments in Parliament and the PMPRB regulations. Research has proven that every day spent negotiating, debating or delaying access to Trikafta drug comes at a grave cost to Canadians living with cystic fibrosis. Longer term, our community and all Canadians need to have a regulatory system in place that allows for future breakthrough drugs to quickly get into the hands of those who need them. https://www.cysticfibrosis.ca//canadian-cystic-fibrosis-c/

Donors make Cystic Fibrosis Canada's work possible. Cystic Fibrosis Canada’s Chief Scientific Officer, John Wallenburg shares recent accomplishments in our advocacy work, thanks to our donors. Your support can help us keep pushing further for people living with cystic fibrosis. Please consider making a donation, if you are able, or sharing this message today. https://bit.ly/37NO0fp

Our initial assessment of the PMPRB guidelines is that they’ve not yet balanced lowering drug prices while still bringing innovative medicines to Canada. We are disappointed they do not appear to have factored in any of the recommendations that we submitted during the guidelines consultation process. While the new guidelines do recognize that an evaluation process is needed for the future, the details are vague and don’t outline the inclusion of patients. We continue to dige...st and consider the new guidelines and will share more as we can. In further PMPRB related news, today 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. We are pleased that this provides some time to get the guidelines right, however CF can’t wait and we urge a swift process to ensure we have balanced guidelines within the existing timeline of January 1 2021. For more information on our previous recommendations to the PMPRB see the website: https://bit.ly/39JVuz9

Shinerama, Canada’s largest post-secondary fundraiser in support of Cystic Fibrosis Canada, went virtual this year! Post-secondary student volunteers across Canada completed a 10-day social media challenge between Sept 8-30, where they were given a series of challenges to help raise money and awareness for CF. We asked a few students what their favourite Shinetember Challenge was, and to share what the best part of supporting CF Canada is to them. Here’s what some students had to say: https://bit.ly/3joXMqz

The latest Advocacy Update and Latest News from Cystic Fibrosis Canada blog post is now available! Highlights from this week’s blog include, the release of the new PMPRB guidelines, our historic emergency all party meeting on access to Trikafta, we joined a new inter-charity coalition to Protect Our Access and an update on the Federal Standing Committee on Health. Read more here: https://bit.ly/34r444Z

Approximately 30 Members of Parliament and Senators from all parties joined Cystic Fibrosis Canada's historic emergency meeting on access to Trikafta today. We asked attendees to commit to an all party approach for access to Trikafta, and received strong support among those present. Read more about the meeting here: https://bit.ly/3mfe4nQ We would like to thank MP Elizabeth May for helping us make this historic meeting possible and Senator Francis Fox for chairing. Featured image: Janelle, 31, lives with CF

The Patented Medicine Prices Review Board (PMPRB) have officially released their new regulatory guidelines. They can be found here: https://bit.ly/35qsue6 Our team is convening to review and assess the guidelines. We’ll provide an update as soon as we can. Many who follow Cystic Fibrosis Canada will be aware that the proposed guidelines have negatively impacted access to the breakthrough cystic fibrosis drug Trikafta. They have been through a review and consultation process that we have participated in actively, advocating for amendments that will remove barriers to access to innovative cystic fibrosis medicines, like Trikafta. Our recommendations to previous revisions of the guidelines can be found here: https://bit.ly/39JVuz9

On the eve of our historic emergency all party meeting for access to Trikafta, we can confirm that, as of now, the guidelines will be released tomorrow. We have spoken to the Patented Medicines Prices Review Board (PMPRB) this evening and they advised that they plan to issue the new guidelines tomorrow, followed by a media briefing and webinar in the coming days, for anyone who wants to join. Cystic Fibrosis Canada will share details as soon as they are made available. We are moving forward with our planned emergency all-party meeting for access to Trikafta tomorrow.

"Government red tape is keeping [Trikafta] out of Canada and patients don't have the luxury of time." - Su-Ling Goh, Global News Edmonton https://bit.ly/2HorRK1 Cystic Fibrosis Canada is part of a new coalition of 13 health charities and patient groups who have together launched a campaign to ensure Canadians are not denied access to breakthrough drugs, like cystic fibrosis (CF) drug Trikafta, in Canada. The "Protect Our Access" campaign aims to bring the issues with the proposed changes to the PMPRB guidelines to the attention of more Canadians. While people with cystic fibrosis are the first to feel the negative impacts of these guidelines, many other Canadians will be next. Read more about the coalition and our part in it here: https://bit.ly/2Hd7G1J

October 21st marks one year since our neighbors in the US approved Trikafta, but here in Canada it remains devastatingly out of reach. Kelly Grover, President and CEO of Cystic Fibrosis Canada shares a message. #CFcantwait

CF can’t wait, and we’re not waiting either. On Friday, Cystic Fibrosis Canada will host an historic all party emergency meeting on access to Trikafta. CF Get Loud and CF Treatment Society will also join. This important meeting will bring together Members of Parliament who have supported us in our calls on government to fix the Patented Medicines Prices Review Board (PMPRB) so we can get CF drug Trikafta into the country and fast-tracked to the people who need it now. We app...reciate those MPs who support us, including MP Luc Theriault, who intends to propose a motion for further patient consultations on the PMPRB guidelines. The motion was unfortunately not mentioned in today’s Standing Committee on Health (HESA) meeting. We hope it will be brought forward as soon as possible. We look forward to this meeting as we continue in our relentless fight to get Trikafta into the hands of those who need it. #cfcantwait CF Canada’s advocacy work is made possible through the generosity of our donors. Please give today if you can:https://bit.ly/34VL8KE

Great coverage of Quest4CF in the Globe and Mail this weekend. Good luck today Questers! Thank you for your support. https://tgam.ca/2T0AfSh