LaPresse.ca | Au coeur du souffle de l’espoir, January 17th, 2017.
Coup d’œil | Hypertension artérielle pulmonaire : une jeune femme atteinte d’une maladie rare, November 22nd, 2016.
Ottawasun.com | Working to keep livin’: Drug costs mean DND adviser can’t retire, November 13th, 2016.
Ottawacitizen.com | DND contractor needs to keep working to pay for life-saving drugs, November 12th, 2016.
Pulmonaryhypertensionnews.com | Ontario PAH Patients Rally to Demand Public Funding of Drug Opsumit, December 4th, 2015.
EpochTimes.com | December 4th, 2015.
BradfordTimes.ca | Calling for Access to Effective Treatment, December 16th, 2015.
CBC News Saskatchewan | Scleroderma Group Seeks More Help from Sask. Government, June 6th, 2016.
The Natasha Hall Show, CJAD-800AM, January 5th, 2017. To listen to the interview, click here.
Television du Haut Richelieu, ÉricLatour.com, November 21st, 2016.
The Current, CBC Radio Saskatchewan, June 6th, 2016. To listen to the interview, click here.
Treat Rare Disease Press Conference 2017
On February 28, 2017, otherwise known as International Rare Disease Day, MPP Michael Harris and MPP Jeff Yurek stood alongside patients – including Take Action PAH advocates Jeannie Tom and Joan Paulin – who are falling through the cracks of Ontario’s healthcare system. Jeannie Tom spoke during the press conference and reminded government that to date, three new treatments for pulmonary arterial hypertension (PAH), including systemic scleroderma-associated PAH (SSc-PAH), remain unfunded and inaccessible to patients who need them in Ontario. As such, PAH specialists are unable to exercise their individual clinical judgement, which is essential to the proper treatment of PAH, including SSc-PAH. To view a video of the press conference, please click here.
Louise Goulet, President of The Scleroderma Association of Saskatchewan, and Richard Douglas (both scleroderma patients) had the privilege of meeting with the Hon. Dustin Duncan, Minister of Health, to discuss the struggles pulmonary arterial hypertension (PAH) patients, including those with systemic scleroderma-associated PAH (SSc-PAH) are facing in Saskatchewan. Louise and Richard took to the opportunity to deliver more than 100 postcards on behalf of SSc-PAH patients to urge him to put words into action and provide immediate, publicly funded access to all Health Canada approved PAH medications.
On behalf of those living with PAH, including those with SSc-PAH, Ontario MPP Michael Harris delivered 833 postcards to the Hon. Eric Hoskins, Minister of Health and Long-Term Care, on June 6, 2016, requesting he puts words into action and ensure all PAH patients, including those with SSc-PAH, have immediate, publicly funded access to all Health Canada approved PAH medications.