Alberta Lagging in Access to Rare Disease Innovation
- PHA Canada
- May 3
- 3 min read
Calgary/Edmonton, AB (May 4, 2026)
The Pulmonary Hypertension Association of Canada (PHA Canada), along with expert physicians, are calling on Alberta to fund sotatercept (Winrevair), a new treatment for pulmonary arterial hypertension (PAH).
“Pulmonary arterial hypertension is a rare, universally fatal disease involving high blood pressure in the blood vessels of the lungs, putting stress on the right side of the heart. This causes heart failure, shortness of breath with minimal activity, and robs patients of their quality of life,” explains Dr. Rhea Varghese, PH physician at the University of Alberta Hospital. “Clinical trial data and real-world evidence demonstrate that sotatercept improves symptoms and can even normalize heart function. The medical community believes this to be the most revolutionary therapy for pulmonary arterial hypertension in a generation.”
Sotatercept moved quickly through Health Canada’s drug approval process, receiving expedited approval in August 2024. By November 2024, Canada’s Drug Agency recommended that sotatercept be reimbursed by public drug plans. In November 2025, the pan-Canadian Pharmaceutical Alliance—the body that negotiates drug prices on behalf of all the provinces and territories—successfully reached an agreement on a price for sotatercept.
There’s only one final hurdle to overcome: each province must now add sotatercept to its drug plan. Seven provinces have already acted. Alberta is the largest of the three lagging provinces, and the only province in Western Canada denying patients publicly funded access to this effective new treatment and a new chance at life.
“Being diagnosed with PAH at 27 years old altered my life as I knew it,” says Calgarian Jodi Berry, who receives sotatercept as part of a clinical trial. “Being on a multitude of drugs has been gruelling. I’ve spent years just getting by, trying to conserve my energy for the most important things. Sotatercept has changed my life. I’m once again a contributing member of society. I no longer feel like I’m a strain on my family, friends and the health care system.”
“On May 5, World Pulmonary Hypertension Day, we call on the Alberta government to immediately add sotatercept to its drug plan, giving Albertans with PAH the same hope that patients in the rest of Canada are experiencing,” says Dr. Mitesh Thakrar, PH physician at the Peter Lougheed Center in Calgary and PHA Canada Board Director. “PAH patients in Alberta shouldn’t get left behind—or worse yet, die—while waiting to access a drug that is revolutionizing PAH care elsewhere in Canada and the world.”
About the Pulmonary Hypertension Association of Canada (PHA Canada)
PHA Canada is a federally registered charity whose mission is to empower the Canadian pulmonary hypertension community through support, education, advocacy, awareness, and research. PHA Canada was established in 2008 by patients, caregivers, and healthcare professionals to work together to better the lives of Canadians affected by pulmonary hypertension and represent a united national pulmonary hypertension community.
For more information about the Pulmonary Hypertension Association of Canada, visit www.phacanada.ca.
About pulmonary arterial hypertension (PAH)
PAH is a rare type of PH that is specifically due to the narrowing of the pulmonary arteries (blood vessels) that carry blood to the lungs. The exact cause of PAH is not well understood. Narrowing of the pulmonary arteries in PAH is due to the multiplication and growth of cells in the walls of the pulmonary arteries, as well as the formation of scar tissue within the pulmonary arteries. Ongoing research has identified numerous biologic abnormalities in PAH, including genetic, protein, and small molecular abnormalities within the body.
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Media Contact:
Jamie Myrah
Executive Director
Pulmonary Hypertension Association of Canada
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