The Pulmonary Hypertension Association of Canada (PHA Canada) and the Scleroderma Society of Canada (SSC) have joined forces to help improve the lives of all Canadians affected by pulmonary arterial hypertension (PAH).
PHA Canada and SSC believe that all PAH patients in Canada—no matter their financial situation, province of residence, or private insurance coverage—should have access to optimal treatment. Because PAH is a highly individualized disease, specialized PAH physicians require the flexibility to prescribe any Health Canada-approved treatment they believe will result in the best possible short and long-term outcomes for their patients. PHA Canada and SSC are concerned about disparities occurring in the quality of care PAH patients have access to in Canada depending on their access to private insurance and/or based on their province of residence. One of the most significant current examples of this disparity is the issue of access to Opsumit.
ISSUE: Access to Opsumit
Since June 2015, both organizations have been advocating for and providing support to the PAH community on the issue of publicly funded access to Opsumit (macitentan). Opsumit is currently the only oral treatment proven in a randomized controlled trial to reduce long-term morbidity in patients, including reductions in PAH worsening and hospitalizations.
However, at the end of 2015, pricing negotiations for Opsumit through the pan-Canadian Pharmaceutical Alliance (pCPA) were closed. As a result, PAH patients across the country (except in Québec) who could benefit from Opsumit, including those also affected by scleroderma, have been unable to access it through public funding. Without public funding for Opsumit, PAH medical specialists are restricted from exercising their individual clinical judgement, which is essential to the proper treatment of PAH.
We need your support—now, more than ever—as we continue our fight for publicly funded access to all Health Canada-approved treatments. We welcome support from anyone affected by PAH, including patients, caregivers, and supporters of our cause. It only takes a few minutes—click on the easy-to-use sharing tools at the bottom of this page and visit the Meet Your Provincial Representative tab to learn more about educating your local provincial representative about the importance of access to PAH treatments.