GET INVOLVED
Advocacy in Québec
PHA Canada is dedicated to ensuring all pulmonary hypertension (PH) patients receive the best care from diagnosis onward. We empower patients, caregivers, families, and the pulmonary hypertension medical community to advocate for key issues with governments. Your support amplifies our voice.
In August 2024, Health Canada approved sotatercept (Winrevair™), the first activin signalling inhibitor for long-term pulmonary arterial hypertension (PAH) treatment. Canada’s Drug Agency (CDA) has now issued a recommendation that sotatercept be publicly funded, alongside standard pulmonary arterial hypertension therapies, for adult patients in WHO Functional Class II or III—provided it's prescribed by a PAH specialist and patients are not at low risk.
The drug funding approval process is different in Quebec. INESSS, the health technology assessment agency, recommends whether or not new drugs should be publicly funded. In December 2024, INESSS recognized the therapeutic value of sotatercept but recommended that Quebec not fund it for cost reasons. The only way to improve the drug's cost-effectiveness ratio is to negotiate prices. Despite the INESSS decision, the Minister of Health can join with the Pan-Canadian Pharmaceutical Alliance to negotiate the price of sotatercept. This is where your voice can make a difference.
Time is of the essence! Please write to the Minister of Health using the template below. Please also encourage your family members, friends and members of your extended networks to also send this letter by sharing this link with them: https://www.phacanada.ca/advocate-qc
Thank you for your support!
Need help or have questions? Contact us at 1-877-774-2226 or info@phacanada.ca.
Time Matters PAH:
Advocate for Sotatercept in Quebec
1. Write to the Minister of Health
Your voice matters! Use our letter template to send a message to your provincial or territorial health minister to emphasize the importance of making sotatercept accessible without delay. Simply fill in your details, and the letter will automatically be emailed on your behalf. Consider sharing it with friends and family.
2. Join the movement
Participating in the Time Matters PAH advocacy campaign will give you everything you need to make a difference. Use the advocacy tools below to become an influential advocate for change.
Tell your sotatercept story
Here are a couple of resources to help you put your story together.
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A short tip sheet on storytelling for advocacy from The Health Center Advocacy Network
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A longer how-to guide on telling your personal story from Advocacy Solutions
If you’d like to see some examples, you can watch these Patient & Family Storytelling videos from Alberta Health Services.
Meet your Member of the National Assembly
It can be very effective to meet with elected officials to share your personal story, discuss the need for public funding of sotatercept, and ask if they can get involved.
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Use this email template to send a meeting request. Tip: elected representatives are often in their home ridings on Fridays, so Friday can be a good day to request a meeting with them.
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This meeting outline and PAH fact sheet can help you prepare for the meeting.
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Ask your representative to send a letter to the Minister of Health. Encourage your local representative to support the interests of PAH patients by sending the Minister a letter of support stressing the need for Quebec to participate in price negotiations for sotatercept. You'll find a draft letter here.
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Don’t forget to update us on the outcomes of any meetings you attend. You can reach us at 1-877-774-2226 or info@phacanada.ca
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Follow up: Send an email thanking your elected representative for meeting with you. A draft thank-you letter is here. Also, attach a copy of the draft letter from the elected representative to the health minister.
3. Amplify the message
Use social media to amplify the message. Share your advocacy efforts on platforms like Twitter/X, Facebook, LinkedIn, and Instagram. Tag your provincial health minister, elected officials, and @PHACanada. Use the hashtag #TimeMattersPAH to spread the word and encourage others to join the cause.
Examples of social media posts:
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I’m affected by Pulmonary Arterial Hypertension and I’m urging Minister Dubé to negotiate the price of sotatercept (Winrevair™). Patients deserve access to the best treatments. Let’s make this happen! 💜 #SupportPH #PHAwareness #TimeMattersPAH
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800+ Québécois have Pulmonary Arterial Hypertension. #Sotatercept (Winrevair™) offers hope. Join me in asking Minister Dubé to negotiate the price of this life-saving treatment! #PHAwareness #TimeMattersPAH
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Time matters for Pulmonary Arterial Hypertension patients! I’m urging Minister Dubé to negotiate the price of #sotatercept (Winrevair™). This treatment is a game-changer and we need it now. 🫁💜 #PHAwareness #TimeMattersPAH
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🫁 I’m calling on Minister Dubé to negotiate the price of #sotatercept (Winrevair™), a life-saving treatment for Pulmonary Arterial Hypertension. Every day without this treatment could cost lives.💜 #PHAwareness #TimeMattersPAH
Together, we will make a difference!
If you have any questions, please get in touch with us directly:
Ways to get involved
PHA Canada is proud to partner with Fondation HTAPQ in our advocacy efforts in Quebec. Together, we are amplifying the voices of PH patients and advocating for equitable access to life-changing treatments like sotatercept. We are grateful for their partnership and shared commitment to improving the lives of those living with PH.
Learn more about Fondation HTAPQ at www.htapquebec.ca.
Recognizing Our Partner:
Fondation HTAPQ
