SCLERODERMA ADVOCACY

The Scleroderma Society of Canada (SSC) serves as a support for all scleroderma patients and families affected by the various forms of pulmonary hypertension (PH), including pulmonary arterial hypertension (PAH). PAH is a common complication of scleroderma and can be very severe in patients with this connective tissue disease.

Why now?
In March 2015, CADTH (Canadian Agency for Drugs and Technologies in Health) released itsTherapeutic Review Recommendation Report for Drugs for PAH The potential impact of this report is of the outmost importance to the lives of PAH patients as it seeks to severely restrict physicians’ ability at diagnosis to exercise the individual clinical judgement essential to the proper treatment of PAH.

Since then, PHA Canada has mobilized the PAH community to take part in an advocacy campaign to remind our provincial and territorial governments that lives could be at risk if these recommendations are heeded. It is essential to the well-being of all those affected by PAH that decision-makers understand that a one-size-fits-all approach to managing this rare disease will not work.

Through advocacy, SSC aims to raise public awareness and rally support around this issue which affects those in the scleroderma community who also live with PAH.  We must ensure their voices are heard and treatment needs are met by government decision-makers.

What do we want? 
To ensure all scleroderma patients with PAH have publicly-funded access to any and all new and existing treatments—at diagnosis and beyond.

SSC helps to empower patients, caregivers, family and friends, as well as members of the scleroderma medical community, by supporting advocacy efforts focused on provincial and territorial governments on issues that are important to our community. Your engagement can make a significant difference in this work.

*Please help us by providing your name and address to conference@sclerodermacanada.ca so we can send you a postcard that you can address back to us to ensure that PAH patients in Ontario have access to all approved treatments at diagnosis and beyond.

*All postage costs will be incurred by the Scleroderma Society of Canada and none will be incurred on the recipient.

For more information check us out at: http://www.scleroderma.ca/Support/Scleroderma-Advocacy.php