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 equitable 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) no matter where they live in Canada. Uptravi was approved by Health Canada in January 2016 and is the first oral selective IP prostacyclin receptor agonist to delay disease progression in adult PAH patients with Functional Class II or III.

In December 2017, the pan-Canadian Pharmaceutical Alliance successfully concluded a pricing agreement for Uptravi. While the PAH and scleroderma communities are excited by this major milestone, advocacy is still needed to ensure that public funding for Uptravi be made swiftly available throughout Canada. Any further delay will impact the prognosis of patients who may require immediate access to this important treatment option.

As of March 1, 2018, Quebec became the first province to make Uptravi accessible through public funding, through the Régie de l’assurance maladie du Québec (RAMQ).

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 currently accessible to PAH patients in Canada through public funding, with the exception of Opsumit and Uptravi, which are only funded in Quebec. 

Having access to all Health-Canada approved treatments is essential in order for PAH specialists to be able to exercise their individual clinical judgement and provide optimal treatment to improve and extend the lives of PAH patients. The PAH and scleroderma communities hope that all other provinces and territories across Canada will promptly follow Quebec’s lead and immediately fund Uptravi through their public drug programs.

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

How Can You Help?

We need your support to continue and build momentum, to ensure that those living with PAH (including SSc-PAH) have publicly funded access to all approved PAH treatments.

We want to thank all the advocates and community members who submitted letters, shared their stories, and/or met with their provincial representatives to support our cause. Our work is not done yet! We need your continued support and advocacy helping us to ensure provincial and territorial governments across Canada move swiftly to make Uptravi available to PAH (including SSc-PAH) patients through public drug programs. 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)