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Advocacy

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?

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. 

Download Letter to Minister of Health here
Download Resident Letter to Minister of Health here

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

  • Meet with your local provincial/territorial government representative: Click here

By email:

  • Send a pre-populated letter by email to your Premier and Health Minister: Click here

With media:

  • If you are interested in getting more involved by sharing your story with the media, please contact Anna McCusker, Executive Director of SSC, at anna@sclerodermaontario.ca.

On your social networks:

  • Like and share SSC’s Facebook posts with your networks! Favourite and retweet SSC’s tweets!
  • Use the hashtag #PHysicianchoice when you post on scleroderma advocacy issues related to PAH.
    • Pulmonary arterial hypertension (PAH) is a lung disease that we know all too well, as virtually all persons with scleroderma has some loss of lung function.

      As a Canadian living with scleroderma and PAH, I understand the need to have expert physicians making treatment decisions so I am concerned that the recently released CADTH/CDR recommendations for PAH seek to severely restrict physicians’ abilities at diagnosis to exercise the individual clinical judgement essential to the proper treatment of #PAH.

      Help me advocate to our provincial and territorial governments to ensure that all Health Canada-approved #PAH medications are accessible to patients—at diagnosis and beyond. PAH patients’ lives depend on ensuring that initial access to PAH medications is not limited. #PHysicianchoice

      Please email your Premier and Health Minister using our easy-to-use email tool:http://bit.ly/1HntkYj . It only takes a few minutes - your support is greatly appreciated and will make a difference!
  • Tweet at your own government representatives.
    • [@MPP] Pls RT to show your support for #PHysicianchoice & help all #PAH patients have access to any/all #PAH treatments!
  • Tag SSC in your posts:

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

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