The Pulmonary Hypertension Association of Canada (PHA Canada) and Scleroderma Canada (SC), along with Fondation hypertension artérielle pulmonaire Québec (Fondation HTAPQ) and Sclérodermie Québec (SQ), have joined forces to help improve the lives of all Canadians affected by pulmonary arterial hypertension (PAH), including those with systemic scleroderma-associated PAH (SSc-PAH).

We believe that all PAH patients, including those with SSc-PAH, 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.

We need your help to ensure that Canadians affected by PAH, including those with SSc-PAH, have access to any and all treatments available in Canada.

Urgent Issue

Currently, the most urgent advocacy issue is the need to ensure PAH patients, including those with SSc-PAH, have access to Uptravi (selexipag). Uptravi was approved by Health Canada in January 2016 and is the first oral prostacyclin receptor agonist to delay disease progression in adult PAH patients with Functional Class II or III. Uptravi has been declined for public funding in Quebec. It is also not currently accessible to those who rely on public funding in the rest of Canada.

For patients who are unable to be treated with an intravenous prostacyclin—such as some people with SSc-PAH—Uptravi may be their last hope. Together, we must ensure that public funding for Uptravi be reconsidered in Quebec and swiftly made available in the rest of Canada. Any delay will impact the prognosis of patients who may require immediate access to this important treatment option.

Why is Advocacy Needed?

Since 2013, Health Canada has approved three new oral therapies for the treatment of PAH, including SSc-PAH: Opsumit (macitentan), Adempas (riociguat), and Uptravi (selexipag). However, none of these treatments are accessible to PAH patients in Canada through public funding, with the exception of Opsumit, which is only funded in Quebec. The PAH and systemic scleroderma (SSc) communities are strongly advocating for publicly funded access to these new Health Canada-approved treatments so that PAH specialists are able to exercise their individual clinical judgement, which is essential to the proper treatment of PAH, including SSc-PAH.

For more information on the status of public funding for these treatments, click here.

How Can You Help?

We need your support—now more than ever—as we continue our fight for publicly funded access to all approved PAH treatments. We welcome anyone affected by PAH, including those with SSc-PAH, such as patients, caregivers, and supporters of our cause, to join our efforts. It only takes a few minutes—utilize our easy-to-use email tool and click on the Twitter and Facebook sharing tools at the bottom of this page. You can also visit the Meet Your Provincial Representative tab to learn more about educating your local provincial representative about the importance of access to PAH treatments.

Tweet to funding decision makers

Click on one of the Tweets below to contact your Premier or Health Minister (you must be logged in/log in to Twitter)