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The Advocacy Brief – Issue #5 – July 23 2021

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Cystic Fibrosis Canada
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Advocacy

JULY 23, 2021

ICYMI: Trikafta is moving quickly through the Drug Review system

In case you missed it, on June 18th, Health Canada made the life changing announcement that they had approved Trikafta for sale in Canada for people living with cystic fibrosis aged 12 and over, with at least one F508del mutation. This was a long awaited and hard fought for day.

But Health Canada’s approval is only the start of the road to accessing Trikafta, now we need it funded. The body which negotiates prices on behalf of provincial drugs plans, the pan Canadian Pharmaceutical Alliance (pCPA), also announced on June 18th that they had successfully concluded negotiations with Vertex for Kalydeco and Orkambi, for all Health Canada approved mutations. They also mentioned that upon approval from Health Canada and a finalized recommendation from CADTH, they may choose to add Trikafta to their agreement.

The Many Health Technology Assessments of Canada

The next stage is for Trikafta to be reviewed by various Health Technology Assessment bodies which aim to advise provincial payers on the cost effectiveness of new drugs.

The first to review Trikafta was CADTH (Canadian Agency for Drugs and Technology in Health), whose non-binding recommendation helps inform drug funding decisions for the bulk of provincial and territorial governments as well as federal. CADTH shared their draft recommendation on Trikafta, but it was not what we hoped for. We have provided feedback to CADTH and hope that the final recommendations from CADTH will be more inclusive and reflective of the impact of this drug.

INESSS (Institut national d’excellence en santé et services sociaux) is also expected to share its recommendations for Trikafta this summer. INESSS conducted its review using a new process, through which patients, caregivers and physicians provided written submissions and also participated in focus groups. CF Canada is hopeful INESSS’ guidance will better reflect the potential of this drug to transform lives.

BC Pharmacare also conducts their own health technology assessment and we expect their recommendation to come some time after the final CADTH recommendation, as BC uses the CADTH recommendation to inform its review process.

We won’t let CADTH off the hook

Cystic Fibrosis Canada has worked with CF clinicians and researchers on multiple submissions to provide feedback to CADTH on its draft recommendations. As part of our submission, Cystic Fibrosis Canada provided a new Canadian clinical consensus guideline on the use of modulators. ., In addition to feedback from CF clinicians and researchers, the Cystic Fibrosis Canada submission was informed by the survey filled out by nearly 1,500 Canadians earlier this year talking about the impact Trikafta has had or hopefully will have on the lives of Canadians living with CF. Please see our website to read the full submissions to CADTH from Cystic Fibrosis Canada, the CF CanAct Clinical trials network clinicians and the Canadian Cystic Fibrosis Clinic Directors

We will also keep the pressure on the provinces to list the drug for all indications approved by Health Canada, regardless of the final recommendation from CADTH. We also continue to raise the voices of our CF clinicians in news media and via meetings with government decision makers.

Vertex asks CADTH for reconsideration

We’ve also been informed that Vertex has asked for a reconsideration from CADTH. This will be considered if it can be demonstrated that CADTH and/or the expert review committee failed to act fairly and in accordance with its procedures. If granted, this process could take up to 30 days or longer, depending on the nature of the request.

Access to Trikafta through private insurers

Since Health Canada has approved Trikafta for sale in Canada some private insurance companies have begun to list the drug. This means that some members of the CF community have begun to gain access to Trikafta through private insurers. Our goal is to get Trikafta to all the people who can benefit from it, and we intend to meet with the national association for private healthcare insurers regarding coverage. If you would like help with navigating access through your private insurance plan, please email advocacy@cysticfibrosis.ca and we can refer you to someone at Vertex who can help you. .

What can we do now?

In the meantime, let’s keep up the pressure. As mentioned above, provinces can choose to list Trikafta on their formularies immediately and do so for all Health Canada approved indications. CF Canada and our team of advocacy volunteers are working with provincial elected officials across the country to discuss the next steps they can take towards funding #TrikaftaToday. We are also pursuing media coverage to further pressure Premiers and Health Ministers.

Stories are a powerful way to influence key decision makers. We encourage everyone to raise your voice for access to Trikafta and share your story either through traditional media or social media.

Ways you can take action right now to help get access to #TrikaftaToday:

  • Raise your voice and share a video on Social Media. Make a short video to share your story and tell decision makers what access to Trikafta would mean to you and why no one should be left behind. Share it on social media using the hashtag #TrikaftaToday and tag your Premier and Minister of Health.
  • Help pressure politicians by contacting your Local News Media. Reach out to your local news media. Use our media toolkit for all the tips and tricks for a successful pitch.
  • Amplify CF Content. Like! Comment! Share! When you see a news article or social post about CF or access to Trikafta, make sure you engage with it. Tag your provincial elected officials and use #TrikaftaToday.
  • Send a letter to your provincial elected official. Use our template letter to put pressure on your province to fund Trikafta, and ask them to take action today
  • Join our National Advocacy Network. Become a trained advocate and build relationships with your elected officials to work towards improving access, not just to Trikafta, but all current and future CF medicines

Bi-Weekly #TrikaftaToday Briefings

If you haven’t joined a bi-weekly #TrikaftaToday briefing, then you don’t know what you are missing out on. These briefings have all the info you need to stay up to date, learn tips and tricks for other advocates (including some with over 30 years of experience) and share ideas for ways to make your voice heard with provincial decision makers. They are held every second Wednesday at 1pm EST, and recordings are available after. We hope to see you there.

Further Advocacy News

Burden of Disease Study launched

Cystic Fibrosis Canada has engaged The Conference Board of Canada to conduct an analysis of the social and economic impact of life with cystic fibrosis on individuals, caregivers and society. The Social and Economic Impact of Cystic Fibrosis in Canada: A Burden of Disease Study, will examine the time and money spent managing life with this complex and expensive disease.

The findings will shape Cystic Fibrosis Canada’s programming, inform our advocacy work and help us educate decision-makers about what CF families need most. The patient questionnaire should take approximately 45–60 minutes, while the caregiver questionnaire should take 20–30 minutes to complete. Both surveys do not need to be completed in one sitting.

People living with CF and their caregivers in Canada are encouraged to register for the study by July 25th, 2021. Please share the study with those in your network.

CF Clinicians show CADTH how it is done

Cystic Fibrosis Canada is pleased to share new standards of care guidelines which cover CFTR modulator use in Canada. These guidelines, developed and reviewed by Canadians CF clinicians, will be used to inform the best practice for prescribing and using CFTR modulators, including Trikafta, for patients with CF in Canada. Cystic Fibrosis Canada also intends to use these guidelines when speaking to provincial decision makers to ensure they are aware of best use for CFTR modulators according to those who know the disease best. The guidelines will be available on our website early next week, however. they can already be found as part of our feedback submission to CADTH.

If you are planning to meet with your elected officials, please reach out to our advocacy team via advocacy@cysticfibrosis.ca to discuss the best way to incorporate the guidelines into your discussions.

Advocate Spotlight

Name: Danielle Weil
Province: Ontario
Connection to CF: Mother to 3 year old daughter with CF
Years advocating: 3 years of advocating (and counting)
Danielle’s Story:
“I would like our provincial government to know that we are not going to back away from this fight. We have been fighting for access to medications for many years and though there have been small victories along the way, the biggest fight is yet to come. They have a responsibility to their constituents to provide, and we have a responsibility to our friends, family, and fellow CF community members to put everything we have into the fight. To us, this is a simple answer- these medications work, and they are desperately needed. To continue to delay and make it a matter of money is irresponsible, deadly, and unforgivable. “

Read more of Danielle’s story.

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