As more provinces are beginning to reopen as a part of the COVID-19 provincial reintegration plans, we hope that you are staying safe and well. Here’s a recap of the latest advocacy updates and news from Cystic Fibrosis Canada over the last few weeks.
#CFCantWait: ADVOCACY UPDATES
Reviewing the PMPRB Revised Draft Guidelines
On June 19, we reached a key milestone with the Patented Medicine Prices Review Board (PMPRB) releasing their new draft guidelines. The PMPRB is an independent quasi-judicial body that regulates the prices of patented medicines in Canada. Cystic Fibrosis Canada and the cystic fibrosis (CF) community strongly opposed the previous guidelines for their potential negative impact on access to critical CF medications, like Trikafta.
The revised guidelines are technical, complex and include some significant revisions which now require thoughtful analysis and this will take some time. On first glance, some of these changes do seem promising, while others may still pose challenges to access. This week we’ve been carefully reviewing the guidelines and consulting with other patient groups including CF Get Loud, the Cystic Fibrosis Treatment Society and the Canadian Organization for Rare Disorders (CORD). We are also working with our Government Relations Advisory Panel to better understand the impact and best path forward for Trikafta and future CF medications.
Cystic Fibrosis Canada will share our initial thoughts on the updated guidelines in the coming weeks. We will also provide a template letter that you can use to provide feedback to the PMPRB’s consultation process.
Pushing forward together
It’s clear that the voices of the CF community are having an impact. In their last round of stakeholder consultations, the PMPRB noted that they had “received almost 900 letters from individual citizens, the majority of which were from Cystic Fibrosis patients and their caregivers as part of an advocacy initiative spearheaded by Cystic Fibrosis Canada.” Thank you to the over 700 people who downloaded the template letter we provided and sent it to the PMPRB. Your voices were heard! And we’ve since seen the PMPRB release revised draft guidelines and delay their implementation. Let’s keep up the momentum – stay tuned, we’ll be sharing details on next steps shortly.
Europe gains access to Trikafta
Today, the European Medicines Agency (EMA) announced that they are granting marketing authorization in the European Union for Trikafta. The drug is approved for people with CF aged 12 years and older who are homozygous for the F508del mutation or heterozygous for F508del in the CFTR gene with a minimal function mutation. CF Canada congratulates Europe on this win for those living with CF who will benefit from access to this drug.
We call on the government and Vertex to work together and break down the barriers to bring Trikafta to Canada as quickly as possible, so that Canadians with CF can enjoy the same benefits as their U.S. and European counterparts. Proportionally, there are more Canadians with CF who can benefit from Trikafta (90%) than Europeans (81%).
Walk to Make Cystic Fibrosis History: Virtual Challenge
— The Results Are In!
Over 3,300 participants across Canada were up for the challenge as this year’s Walk to Make Cystic Fibrosis History took on a virtual format due to COVID-19. Thanks to the unwavering support of our community and everyone who made a donation, the 2020 Walk to Make Cystic Fibrosis History: Virtual Challenge raised more than $1.8 million to help fund CF research, care and advocacy initiatives for improved access to CF drugs.
We could not have achieved this incredible goal without the support of our community! Thank you for participating, donating, and fundraising to help us improve the lives of people living with CF.
If you were unable to participate in the Virtual Challenge this year and would like to make a donation, please visit www.cysticfibrosis.ca/walk.
IN THE NEWS
- This drug can treat 90 per cent of cystic fibrosis patients, but it’s not available in Canada
- Local family thrilled with Cystic Fibrosis news
- Breakthrough CF drug saving Ottawa man’s life
- Negotiations for potentially life-saving drug ‘long overdue’
- Cystic fibrosis advocates campaign for approval of ‘life saving’ new drug
DID YOU MISS IT?
- See our news release: The pCPA Agrees to Negotiate with Vertex Pharmaceuticals for Orkambi and Kalydeco
- See the latest advocacy update from Kelly Grover ‘From the desk of the CEO’