Advocacy Updates

Media Coverage

Online

TheSpec.com | Rare disease diagnosis isn’t slowing down Ottawa resident, October 3rd, 2017.

OttawaCommunityNews.comRare disease diagnosis isn’t slowing down Ottawa resident, October 3rd, 2017.

L’HebdoJournal.comJessica Léonard, une battante dans l’âme qui entend aider les siens, August 17th, 2017.

TVANouvelles.ca | Elle luttle pour avoir accès à un médicament, August 9th, 2017.

LeDroit.comGrimper le mont Marcy “en l’honneur de ma mère”, June 2nd, 2017.

LaPresse.caAu 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.

Broadcast

Daytime Ottawa, Rogers TV, May 8th, 2017.

The Carol Anne Meehan Show, 1310 News, May 4th, 2017. To listen to the interview, click here.

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.

Government Updates

MPP meeting

PH community members, Joan and Sandy Gibson, met with MPP Yasir Naqvi (Ottawa Centre) on November 8, 2017 to discuss the struggles PAH patients, including their niece, are currently facing in Ontario. Joan and Sandy urged MPP Naqvito help advocate for those living with PAH and ensure that all Health Canada-approved PAH treatments are made publicly accessible.

Ottawa MPP Meeting - Yasir Naqvi - Joan and Sandy Gibson - Nov 8, 2017

Ontario letter drop-off

On October 12, 2017, Anna McCusker (Scleroderma Canada), Jamie Myrah (PHA Canada), Andrea Gardner RN, BSN (St. Joseph’s Pulmonary Nurse Coordinator/Scleroderma Research Coordinator), Martha Barale (SSc-PAH patient advocate) and Joan Paulin (PHA Canada ambassador and PAH patient advocate) presented nearly 1,000 signed letters to the Ontario Health Minister’s office in Toronto, urging the government to ensure all Health Canada-approved PAH treatments are made publicly accessible. During the delivery of the signed letters, Martha Barale and Joan Paulin were able to share their personal experience with PAH/SSc-PAH and the urgent need for access to treatment to ensure optimal care for PAH/SSc-PAH patients. Both Scleroderma Canada and PHA Canada collected nearly 2,000 signed letters across Canada on behalf of all of those living with PAH, including SSc-PAH. To learn more about this initiative, please read the full press release here: http://www.newswire.ca/news-releases/over-2000-letters-being-delivered-to-premiers-and-health-ministers-across-canada-urging-access-to-life-extending-treatment-for-pah-647666033.html.

Ontario Letter Distribution - October 12, 2017 Ontario Letter Distribution - Joan & Martha - October 12, 2017

Manitoba letter drop-off

On September 26, 2017, Anna McCusker from Scleroderma Canada and advocate Russell Lawton delivered 50 signed letters to the Manitoba Health Minister’s office in Winnipeg, on behalf of all scleroderma patients with SSc-PAH.  Delivering these letters in person will hopefully underscore to the Manitoba government the urgent need for all Health Canada-approved treatment options, including Uptravi, to be made accessible through public funding for all PAH patients in need in Manitoba and across Canada. To learn more about this initiative, please read the full press release here: http://www.newswire.ca/news-releases/over-2000-letters-being-delivered-to-premiers-and-health-ministers-across-canada-urging-access-to-life-extending-treatment-for-pah-647666033.html.

Manitoba Letter Distribution - September 25, 2017

Quebec letter drop-off

On August 31, 2017, Diane Collard of Sclérodermie Québec, Judith Moatti and Dolorès Carrier of the Fondation HTAPQ delivered over 400 signed letters to the Quebec Minister of Health, asking for Uptravi to be added to the list of drugs reimbursed by RAMQ. Diane, Judith and Dolorès took the opportunity to share their personal experiences with PAH and ask that all Health Canada-approved PAH treatments be made accessible to patients in need through public funding. In total, both groups have collected and submitted over 725 signed letters to both the Quebec Premier and the Minister of Health. To learn more about this initiative, please read the full press release here: http://www.newswire.ca/news-releases/over-2000-letters-being-delivered-to-premiers-and-health-ministers-across-canada-urging-access-to-life-extending-treatment-for-pah-647666033.html.

Quebec Letter Distribution - August 31, 2017

MPP meeting

PH community members, Jane and Don Shirley, met with MPP Monte McNaughton (Lambton-Kent-Middlesex) on August 31, 2017 to discuss the struggles PAH patients, including their niece, are currently facing in Ontario. Jane and Don urged MPP McNaughton to help advocate for those living with PAH and ensure that all Health Canada-approved PAH treatments are made publicly accessible.

World PH Day 2017

On May 5, 2017 the PH community gathered at the Ottawa Heart Institute, to join PHA Canada in celebrating the sixth annual World PH Day, an event dedicated to raising awareness for PH globally. World PH Day celebrates the strength and resiliency of the PH community, the developments in the areas of PH research and treatment, and brings attention to the need to improve the quality of life of more than 25 million people living worldwide with the disease. The World PH Day celebration was a wonderful success, attended by more than 40 patients, caregivers, advocates, and medical professionals from the Ottawa PH community. It was also attended by four local government representatives who are now being engaged to address the ongoing issue of lack of access to treatment faced by Canadians with PAH.

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.

2017 Treat Rare Disease Press Conference

Saskatchewan

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.

Scleroderma Association of Saskatchewan with SK MOH

Ontario

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.

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)