The Advocacy Brief – Issue #6 – August 19 2021
AUGUST 19, 2021
Tick-tock! When will Trikafta be available publicly?
The short answer is:… We would love to be able to name a date when all eligible Canadians would be able to access Trikafta. However, there are a few factors in play and many things which aren’t allowed to be shared beyond the manufacturer and the government, which makes it complicated to give an exact answer.
What we know
Trikafta has already been approved for sale in Canada and the Canadian Agency for Drugs and Technologies in Health (CADTH) has released their draft recommendation for public coverage of Trikafta.
Where to next?
CADTH revisions requested: Vertex, the manufacturer of Trikafta, has asked CADTH for a major revision of their draft recommendation and the public drug plans have asked for a minor reconsideration. In response to a question from CTV Winnipeg, CADTH representatives stated they expect to share the final recommendation in mid September. We do not yet know if this ‘final’ recommendation will take into account the major reconsideration requests from Vertex, though both the minor and major reconsiderations were flagged for discussion at CADTH’s expert committee meeting, held yesterday, August 18, 2021
What about the pCPA? Generally, the pan Canadian Pharmaceutical Alliance (pCPA) would not enter into negotiations until after the final CADTH recommendation. However, when the pCPA announced in June that they had completed negotiations with Vertex for Kalydeco and Orkambi, they also said that the Letter of Intent (LOI) could be extended to include Trikafta once it was approved by Health Canada and the Health Technology Assessments have been completed. So they could announce as soon as the final CADTH recommendation comes back – but that’s purely speculation. Ultimately, it is up to each province to negotiate a fair price with the manufacturer and to list the drugs on their provincial formulary.
Provinces need to fund it: The potential of adding Trikafta to the LOI may speed up this process in some provinces, but ultimately it is up to each province to determine how and when they cover the drug. Some will work with other provinces on pricing agreements to fund Trikafta, some will move in their own time to fund Trikafta, and we may need to apply more pressure to others to get them going. We also don’t know what restrictions and criteria for access provinces will apply when they add Trikafta to their formularies. Below is an infographic with more information on current provincial commitments to list Trikafta.
Stay informed! Please keep an eye on Cystic Fibrosis Canada’s social media channels and The Advocacy Brief. We will keep you informed when we know more about each step in the process of accessing Trikafta. And we will not stop going further until all eligible Canadians can access Trikafta.
Clinicians take a stand
On behalf of CF clinicians across the country, Dr Martha McKinney and Dr Bradley Quon directed an open letter to all provincial health ministers and premiers today, in response to the draft recommendation for Trikafta from CADTH.
We worked with Dr McKinney and Dr Quon to express the concern that, if implemented, CADTH’s recommendation for the public funding of Trikafta would see access limited to only some of those who could benefit. This could potentially lead to people becoming sicker before being approved for the treatment.
You can make sure this letter reaches provincial decision makers. Send it to your premier and health minister and ask them to fund Trikafta now, using the Cystic Fibrosis Canada guidelines for modulator use in Canada as the criteria for access.
Media, media, media
At Cystic Fibrosis Canada, we are pitching to media across the country to gain coverage, which helps us to keep the pressure on provincial decision makers. Our main focus has been to share our disappointment with the draft recommendation for Trikafta from CADTH. We are incredibly grateful to the many CF clinicians and CF community members who are working closely with us on these media opportunities.
We’ve seen a lot of success with articles across the country, as we strategically target certain provinces who are more likely to lead the way, and others who will need some convincing. The recent CTV story in Winnipeg prompted an MLA to reach out and arrange a meeting with a CF advocate.
Here are a few of our recent hits:
- Op ed in the Globe and Mail (subscription required)
- Winnipeg Free Press
- Winnipeg CTV news
You can help amplify the message by sharing these articles on social media and tagging your premier and health minister.
Also, let us know if you are also reaching out to the media, as we would love to collaborate and help to spread the word further. Email us at mediarelations@cysticfibrosis.ca
Private Insurance heart-break
We are aware that some people with CF have had issues accessing Trikafta through their private insurance, with promised coverage denied at the last minute. Cystic Fibrosis Canada is here to support all Canadians with cystic fibrosis and is investigating these situations. We’ve reached out to the individuals involved and we have met with Vertex. We’ve also met with the national industry association for health and life insurers in Canada and shared the CF clinician’s open letter, modulator standards of care guidelines and our response to the CADTH recommendation.
Bi-Weekly #TrikaftaToday Briefings
Don’t forget to join our next bi-weekly #TrikaftaToday briefing, to be held on Wednesday September 1st at 1pm EST. We’ll share the election toolkit and have a round table discussion on the different ways you can engage politicians and work towards improving access to medications for Canadians living with CF. The sessions are recorded if you are unable to attend. Register today and we hope to see you there.
Further Advocacy Updates
PMPRB asks for further feedback
The Patented Medicine Prices Review Board is again requesting stakeholder feedback for their revised guidelines. Submissions are due by August 31st. Cystic Fibrosis Canada will be making a submission, reiterating our stance that the guidelines go too far and only the changes to the comparator countries should be implemented in the revisions, now due to take effect on January 1, 2022. If the PMPRB would implement the only the changes to the new comparator countries, it would result in approximately 20% savings in Canada’s drug spend.
Election time
Prime Minister Justin Trudeau has now officially called a federal election for September 20th, 2021. Next week we will provide an election toolkit you can use to make sure all candidates are informed and working to support their potential constituents with CF.
As you are probably aware, the Liberals made a commitment in the previous election for a National Strategy for Drugs for Rare Diseases. Our toolkit will focus on ensuring this commitment is upheld by any party to assume government and continue to push the government to ensure the changes to the PMPRB guidelines are amended before implementation. If you have any questions about CF advocacy during the election please email advocacy@cysticfibrosis.ca
Given it is a very important time for Trikafta in the drug review and reimbursement process, Cystic Fibrosis Canada will continue to largely focus our advocacy efforts on the fight to ensure all provinces fund Trikafta for all who can benefit.
Provincial updates
INESSS to announce soon
The body responsible for conducting the Health Technology Assessment of Trikafta in Quebec, INESSS, is expected to release their recommendation for Trikafta any day now. Once their review is published we will schedule a Facebook Live on the Fibrose Kystique Quebec page to take questions and provide insights into what their recommendations will mean for access to Trikafta in Quebec.
Alberta Expands Orkambi Criteria
Following the announcement in June that the pCPA had completed negotiations for all Health Canada approved mutations for Kalydeco and Orkambi, Alberta has expanded its existing criteria for Orkambi on their public drug program.
Alberta was previously one of only four provinces to list Orkambi at all, but the criteria were so restrictive few managed to gain access. The new listing does still have restrictions on the criteria for access, but hopefully will allow more people to access the drug through public funding. At Cystic Fibrosis Canada, will we lever Alberta’s decision and encourage other provinces to cover this drug quickly and comprehensively.
Nova Scotia election
A general election for Nova Scotia was held on August 17, 2021. CF Canada advocates joined a chronic disease partnership with other health charities and patients groups to collectively call upon the winning party to do better for patients in Nova Scotia.
Saskatchewan NDP Caucus Meeting
Cystic Fibrosis Canada and several CF advocates met with the NDP caucus in Saskatchewan yesterday. This meeting with the opposition party, provided a great opportunity to gain wider support within the party and helped to educate an opposition party on the ways they can support the CF community in the Saskatchewan legislature.
Advocate Spotlight
Name: Maryse Haché
Province: New Brunswick
Connection to CF: I am the mother of Jasmine Roussel, a 12-year-old girl with cystic fibrosis. She was diagnosed when she was a year and a half years old.
Years Advocating: I have been provincial advocate since January 2021, and regional advocate since the CF advocacy program began.
Maryse’s Story:
“Before becoming an official CF Canada advocate, I spoke out for patients waiting for lung transplants who had to leave the province to be treated. Transport services are not offered in New Brunswick. Patients receiving care in Quebec did not receive the same financial assistance as those who decided to go to Ontario. There was systemic discrimination between French- and English-speaking patients in New Brunswick. With a lot of help from the New Brunswick Lung Association, after several years of efforts, we finally won our battle. There is still work to do, but at least now, French-speaking patients get the same financial aid as the English ones.
Since I officially became an advocate for Cystic Fibrosis Canada, I have been working to get the New Brunswick government to offer Trikafta and the modulators to everyone who needs them within a reasonable amount of time. It is my greatest hope to make a difference. Another important objective for me is to have an effective and fair process for access to medications for rare diseases be instituted and for people living with rare diseases to no longer have to fight for access to medications or therapies. That situation has to change.”
Did you miss it?
- The Burden of Disease study is still open. If you have not yet completed your survey, the deadline has been extended. If you have not yet registered, there is still time.
For questions, please contact burdenofdisease@cysticfibrosis.ca
Register here: https://info.conferenceboard.ca/cf-study - Read last month’s Advocacy Brief Issue