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Volunteer Advocate
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Advocacy update 5 March 2020

What’s making headlines

PMPRB update:

We continue to press the PMPRB to halt the implementation of regulatory changes, putting access to life-changing CF drugs, like Trikafta, at risk.

On Monday March 2 2020, CF Canada’s Chief Scientific Officer John Wallenburg, President & CEO, Kelly Grover and Director of Government & Community Relations, Kim Steele met with the leadership team of the Patented Medicines Price Review Board. This meeting was on the invitation of the PMPRB who wanted to follow up on our recent submission and CF community feedback.

In the meeting, while recognizing that they have to get Board approval, the senior leadership expressed a will to make changes to the proposed guidelines so that access to life-changing medicines, such as Trikafta, are not compromised.

This work is integral to our goal of getting Trikafta submitted to and approved by Health Canada, as CF drug manufacturer Vertex has publicly pointed to concerns about the regulatory changes Canada is poised to adopt. We continue other efforts simultaneously towards this end, such as letters to and meetings with the manufacturer.

Our next steps with the PMPRB include a stakeholder meeting on March 18 that will give stakeholders an opportunity to present their concerns, recommend solutions and to engage with the PMRPB Board. CF Canada was invited and will be attending. While we appreciated the good will shared in our recent interactions, we will be holding the PMPRB leadership to account and will be following up in writing and with an event in Ottawa that we will share more about next week – follow us on social for all the details as they come.

Quebec Committee for Rare Diseases Announced:

On Saturday 29 February 2020, Mrs. Marilyne Picard, Member of Parliament for Soulanges and Parliamentary Assistant to the Minister of Health, Quebec, announced the establishment, in April, of a Quebec advisory committee for rare diseases as well as a subcommittee dedicated to access to medicines.

Although Quebec seems to be ahead of other provinces in Canada towards the implementation of a rare disease strategy, we would however have liked a more concrete commitment in order to quickly respond to the glaring needs of the cystic fibrosis community in terms of access to the best treatments available. We do hope to see a rare disease strategy announced in the Quebec Budget on March 12.

Kalydeco Coverage Extended in Alberta:

Also onSaturday 29 February 2020, the Alberta government announced that more patients with cystic fibrosis will finally have coverage for the drug Kalydeco. Coverage for Kalydeco, also known as Ivacaftor, began in 2014 for patients six years of age and older who have cystic fibrosis with one particular genetic mutation. Other mutations have been added since, and only recently have these mutations been covered in British Columbia and Alberta.

Together with the CF community, Cystic Fibrosis Canada has continued to advocate for coverage of all remaining mutations by provincial governments, in line with our advocacy goal of ensuring that all modulator drugs currently approved in Canada are publically funded, regardless of where someone lives.

While it should have happened much sooner, we were pleased to hear that starting March 1 2020, the UCP government of Alberta is expanding coverage of Kalydeco for patients who have one of an additional eight genetic CF mutations (G551D, G1244E, G1349D, G178R, G551S, S1251N, S1255P, S549N, S549R). We continue to fight alongside our community across the country for better access to life-changing medications across Canada and in every circumstance. We won’t stop until it’s done.

Other advocacy news

  • Ottawa next week: we’ll be in Ottawa next week attending a number of events including the CORD rally on 10 March at Parliament Hill. We’ll need your help to raise voices, so follow us on social for more details next week.
  • 100 Days Challenge: We’re pleased to see CF drug manufacturer Vertex has committed to the 100 Days challenge to meet with Ontario Minister of Health, Christine Elliot, to negotiate and conclude a portfolio deal within 100 days. The Cystic Fibrosis Treatment Society and community group Get loud For CF are the force behind this and doing great work. Now it’s on the Ontario government to step up and show us what their plan is to get people living with cystic fibrosis access to the life-saving medications they need – and fast. #CFcantwait

Community in Action

Don’t forget, on March 25, CF GET LOUD Canada will be holding rallies in Ontario and Nova Scotia. Check out their Facebook group for more info and updates on any other rally locations.

Follow us on social media

  • We’ll be sharing updates from Parliament Hill next week. Follow us on Twitter
  • Follow us on Facebook for stories, news and updates

Media coverage

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