The Advocacy Brief – Issue #9

FEBRUARY 2, 2022

Welcome to your February 1, 2022, edition of The Advocacy Brief.

Updates on Access to Trikafta

Looking ahead to 2022

2022 is shaping up to be a pivotal year for access to medicines for Canadians living with cystic fibrosis (CF). A brief look at what we have coming this year:

• We anticipate that Health Canada’s approval of Trikafta for ages 6-11 will add even more fuel to our fight for access to Trikafta for all who can benefit, as we double down our efforts to ensure kids with CF get access to Trikafta too. Key dates to watch for:
  • Health Canada will complete their review of Trikafta for children ages 6-11, with at least one F508del gene on or before April 27th, 2022.
  • CADTH is expected to share their draft recommendation for Trikafta for ages 6+ on or before May 19th, 2022. This review considers anyone who is 6 years of age or older and includes new, published data showing that people with FEV1 measures of 91% or greater still received significant benefit from Trikafta.
  • INESSS will follow shortly after CADTH, with their recommendation for Trikafta for those who are 6+ (like CADTH) for the Quebec market.
  • Feedback to CADTH on their draft recommendation for Trikafta 6+ will be due by June 3rd, 2022.
  • Final reviews from CADTH and INESSS will likely be released in the summer of 2022. We are already pushing to get provinces and territories to list Trikafta for everyone aged 6+ who could benefit from the drug immediately after all of the relevant reviews are complete.

• This May, CF awareness month will see a suite of actions available for you to take to support people living with CF. This includes our annual meeting challenge which will focus on reimbursement of Trikafta for all who could benefit from it. Stay tuned for more information.
• The Burden of Disease study results will become available later this year. These results will show the impact that CF has on individuals, families and society.
• Ontario and Quebec have set elections in 2022. We will provide election toolkits to help advocates in applicable provinces ensure candidates are informed about the issues faced by people living with CF in their province.

Trikafta added to some large private insurance companies’ policies

In late 2021, we heard the happy news that some of the major private insurance companies have added Trikafta to their standard formularies. To our knowledge, these included Manulife and Sunlife. However, this doesn’t mean it will be accessible for everyone insured by these companies. Individual plans don’t automatically include additional drugs from the standard formulary, they will need to be added by the plan managers. If you have questions about your private insurance coverage, contact your benefits provider.

Cystic Fibrosis Canada has resources available on our website if you wish to self-advocate to private insurance companies about your own situation.

Register for the #TrikaftaToday Briefing

The next #TrikaftaToday Briefing will be held on Wednesday February 2nd at 1pm EST. Please register in advance in order to be sent a link to join.

We’ll be discussing the advocacy work that people across the country are doing to advance access to Trikafta for 6+. Plus, we will share ideas and tactics between CF advocates and work together to improve access to CF medicines in Canada.

If you can’t make it, register for the event and you will also be added to the distribution list for the recording.

If you missed the last #TrikaftaToday Community Briefing, you can watch a recording online.

Further Advocacy News

PMPRB guidelines delayed

The Patented Medicine Prices Review Board (PMPRB) has again delayed the implementation of the new guidelines, this time to July 1, 2022. The organization stated the reason behind the delay was to allow more time for consultations with stakeholders.

Cystic Fibrosis Canada has long opposed some of the changes to the guidelines, as they could potentially impact access to medicines in Canada, especially therapies for rare diseases. The PMPRB has proposed a set of changes to their guidelines which would alter how they calculate the maximum price a drug can be sold for in Canada. You can find out more about the PMPRB and our work to ensure future CF medicines are introduced to Canada in a timely manner on our website.

Cystic Fibrosis Canada will participate in the PMPRB’s consultations. We will let you know when we hear more.

National Strategy for Drugs for Rare Diseases

2022 is set to be the year a Rare Disease Strategy is introduced to Canada, and it will be a key focus of our advocacy work.

Canada is one of the few developed countries without a rare disease strategy that guides decisions about access to drugs for rare diseases. A National Strategy for Drugs for Rare Diseases was promised in the budget of 2019 and has been subsequently reiterated in several government documents. However, there does not appear to be a strategy in place and, while we expect that funding will be available to support provinces and territories ability to reimburse these medicines, we don’t know the amount that will be available nor how or when the money will flow.

Cystic Fibrosis Canada plans to re-ignite the all-party caucus of supportive federal MPs we formed in 2020, to help us get Trikafta into the country for Health Canada to review, to push forward the National Strategy for Drugs for Rare Diseases. This strategy is critical to ensuring that future CF therapies – and other drugs for rare diseases – avoid the barriers to access that Trikafta and other modulators have faced.

Quebec Rare Disease Strategy Community Consultation

The Ministry of Health and Social Services (MSSS) in Quebec recently held a consultation with stakeholders from the rare disease community in Quebec. Dr John Wallenburg, Cystic Fibrosis Canada’s Chief Scientific Officer, and Marie-Pier Emery, CF advocate, attended to represent the interests of the CF community.

The MSSS sought to learn more about diagnosis and care, access to medicines and social services for people living with a rare disease. The aim of the consultations was to work towards offering better care to rare disease patients throughout their patient journey.

CF Canada will continue to advance this important work in Quebec.

Joining the CADTH common drug formulary consultation

CADTH is currently working on a report outlining the framework for creating a common drug formulary for all of Canada. While CFTR modulators are unlikely to be included on a national formulary, many symptom management treatments (e.g. enzymes, diabetes medications, etc.) may be eventually added to this formulary.

CADTH recently held consultations and Cystic Fibrosis Canada was invited to participate. CADTH’s non-binding recommendations from the report will be released to the public by the end of spring, 2022, and shared with provincial and territorial governments.

Join the Even Further in 2022 Facebook Live

Cystic Fibrosis Canada’s President and CEO, Kelly Grover, will host a Facebook Live on February 7th, 2022 at 7pm EST to discuss the organization’s plans for 2022. Kelly will be joined by our Chair of Board, Leona Pinsky and Chief Scientific Officer, Dr John Wallenburg.

We invite you to save the date and join the event.

Advocate Spotlight – Lorna McEwan

Name: Lorna McEwan
Province: Saskatchewan
Connection to CF: 61-year-old CF warrior
Years advocating: 61
Lorna’s story:
“The journey since I started on Trikafta has been surreal. I’m loving it. I cannot believe the changes that have happened and how I feel. I can actually breathe without going into a major coughing fit. I can run and not go into a coughing fit.
I have more energy than I thought humanly possible, I didn’t realize how much energy I was using to get stuff done. I’m not focusing everything on breathing, which I didn’t realize I did. Breathing is so underrated. I had to give myself permission to breathe normally and to take a deep breath and not be afraid of going into a coughing fit! It is huge.”

Read more of Lorna’s Journey with Trikafta on our blog.

In the News

• Solving the puzzle of cystic fibrosis and its treatments is a Nobel Prize-worthy breakthrough – The Conversation

Did you miss it?

• Watch the journey to Trikafta wrap up video
• Watch the recording from the latest #TrikaftaToday Briefing
• Read the December 20, 2021 edition of the Advocacy Brief

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