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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 its Therapeutic 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?

Advocacy Package
ATTENTION: Ontario Advocacy Package documents have been revised. Please see below for up-to-date versions (as of November 30, 2015).

Introduction: PHA Canada takes action in Ontario
Step 1: Request a meeting with your MPP
Draft of constituent letter to MPP

Step 2: Guidelines and Resources - meeting with your MPP
Meeting Resource 1: Outline for MPP meeting
Meeting Resource 2: PAH Fact sheet (for you to review and hand out to your MPP)
Meeting Resource 3: Report back form (fill out this form and send it to PHA Canada after your meeting)

Step 3: Request that your MPP send a letter to the Minister of Health and Long-Term Care
Draft of letter from MPP to Minister of Health and Long-Term Care 
(fill this out, bring it to your meeting with your MPP and leave it with them)

Step 4: Contact your Minister of Health and Long-Term Care
Draft of letter from resident to Minister of Health and Long-Term Care

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. 

There are many ways you can get involved in advocating to government: 
In person:

By email:

With media:

On your social networks:

Contact SSC at info@sclerodermacanada.cafor more information on joining our advocacy efforts! 



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