GET INVOLVED
Advocate
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.
Sotatercept must be publicly accessible as an additional therapy for pulmonary arterial hypertension patients.
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. PHA Canada has been actively engaged with the CDA throughout their review process.
Until April 2, sotatercept was in limbo, waiting for provinces to begin price negotiations through the pan-Canadian Pharmaceutical Alliance (pCPA), but it is now in active negotiations.
Time Matters! Please write to your provincial or territorial health minister using the template below. Your voice can encourage provincial or territorial leaders to prioritize and expedite negotiations so that sotatercept becomes available to Canadians without further delay.
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
Together, we can ensure that Canadian pulmonary arterial hypertension patients have timely access to this new therapy.
Thank you for your support!
Time Matters PAH:
Advocate for Sotatercept in Canada
1. Join the Movement, Access the Tools!
Becoming part of the Time Matters PAH advocacy campaign means getting equipped with everything you need to make a difference. By signing up, you unlock our exclusive Advocacy Toolkit—a comprehensive resource filled with all the tools, guides, and strategies you'll need to become a powerful advocate for change.
Need support or have questions? Contact us at 1-877-774-2226 or info@phacanada.ca.
2. Write to your provincial or territorial health minister
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.
3. Amplify the message
Use social media to amplify the message. Share your advocacy efforts online. 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 [last name] to fund sotatercept (Winrevair™). Patients with this life-threatening disease deserve access to the best treatments. Let’s make this happen! 💜 #SupportPH #PHAwareness #TimeMattersPAH
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2000+ Canadians have pulmonary arterial hypertension. #Sotatercept (Winrevair™) offers hope, but many won’t have access without public funding. Join me in asking Minister [insert last name] to prioritize funding for this life-saving treatment! #PHAwareness #TimeMattersPAH
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Time matters for pulmonary arterial hypertension patients! I’m urging Minister [insert last name] to ensure that public funding makes #sotatercept (Winrevair™) available. This treatment is a game-changer and we need it now. 🫁💜 #PHAwareness #TimeMattersPAH
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🫁 I’m calling on Minister [insert last name] to fund #sotatercept (Winrevair™), a life-saving treatment for pulmonary arterial hypertension. Every day without this treatment could cost lives. Let's make sure Canadians have the care they need. 💜 #PHAwareness #TimeMattersPAH
Together, we will make a difference!
If you have any questions, please get in touch with us directly:
4. Join our monthly Advocate Call
Got questions about advocacy or the Time Matters PAH campaign? Want to share what you’ve been up to in your community or hear what others are doing? Join our informal 30-minute check-in calls! These casual, drop-in chats are open to anyone—whether you’re already involved or just curious about the campaign. No agenda, no pressure—just come as you are and connect with others who care about making a difference.
Ways to get involved
On November 20 and 21, PHA Canada advocates took action at Queen’s Park, meeting with political officials to raise awareness about pulmonary arterial hypertension (PAH) and advocate for timely access to sotatercept (Winrevair™) for Canadians living with this life-threatening condition. These meetings were a vital step in ensuring that PAH patients across Ontario receive the treatments they need without unnecessary delays.
Our advocates shared their powerful stories and emphasized the urgency of making sotatercept publicly accessible, highlighting how this groundbreaking therapy has the potential to transform lives.
We were also deeply honored to have PHA Canada and our advocates acknowledged in the legislature by Nina Tangri, John Fraser, France Gélinas, and Monique Taylor. Their recognition reinforces the importance of our work and shines a spotlight on the challenges faced by the pulmonary arterial hypertension community.
Together, we’re making sure that PAH patients’ voices are heard and that timely access to innovative treatments remains a priority. Thank you to our incredible advocates and the officials who took the time to listen and support this critical cause.
2024 advocacy efforts
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Since 2015, our #TakeActionPAH campaign has been advocating for publicly funded access to all Health Canada-approved treatments for pulmonary arterial hypertension. We continue to be concerned about disparities that exist in the quality of care PAH patients may receive depending on what province or territory they live in or whether they have private insurance.
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PHA Canada is the link between your voice and decision makers. By continuing to advocate for patients, we are trying to ensure that any changes to complicated regulatory processes will not negatively impact patients’ ability to access new therapies in the future.
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Read PHA Canada’s submissions to Canada’s Drug Agency
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Read PHA Canada’s latest submissions to the Patented Medicines Pricing Review Board (PMPRB):
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