Over 2,000 letters being delivered to Premiers and Health Ministers across Canada urging access to life-extending treatment for PAH

- PAH community hopes drug funding decision makers will take action on pan-Canadian plea -

HAMILTON, ON, Sept. 25, 2017 /CNW/ - Today, Scleroderma Canada and the Pulmonary Hypertension Association of Canada announced that they have collected over 2,000 signed letters and are in the process of delivering them to Premiers and Health Ministers across Canada, including Manitoba, Ontario, Quebec and Nova Scotia. The letters were signed by individuals living with pulmonary arterial hypertension (PAH), their caregivers, family members and friends to urge decision makers to make all treatments for PAH immediately accessible through public funding for patients in need.

PAH is a rare but very complex and serious lung disease, which is progressive and potentially fatal. It is defined by high blood pressure in the lungs, which leads to enlargement and weakness of the right-side of the heart—a serious type of heart failure. It is a common complication of systemic scleroderma, a chronic hardening and thickening of the skin and internal organs, and can be very severe in patients affected by this progressive connective tissue disease.

"Since my diagnosis with scleroderma, and more recently pulmonary arterial hypertension, my life has become quite limited as I am not able to work or live on my own, and the treatments I have been taking are no longer enough," said Bronwyn Lawton, 33, who lives in Winnipeg with her parents, her primary caregivers, and has recently been hospitalized. "I depend on public funding for my medication and I simply cannot afford the new treatment my doctor tells me I need now. I desperately hope that governments across Canada hear our urgent plea."

There is no cure for PAH and while the prognosis for patients has improved somewhat in recent years, it remains poor despite currently available treatments. The average survival in adults following a PAH diagnosis is estimated at only five to seven years, and only three years for those affected by scleroderma-associated PAH. This means that patients do not have time to wait for necessary, life-extending treatment options to be made accessible through public funding.

"Around 15 to 20 years ago, the average pulmonary arterial hypertension patient would live for about two years, which is as bad as many forms of cancer. Now, thanks to the many treatment advancements, patients are living longer and healthier lives," said Dr. George Chandy, Respirologist, Ottawa Heart Institute. "However, there are still patients who are unable to access these treatments through public funding, leaving them unwell. The individualized nature of PAH means that patients must have publicly funded access to all approved and effective treatments options in order to improve and extend their lives."

In January 2016, Uptravi (selexipag) became the third new treatment for PAH to be approved by Health Canada in recent years. In October 2016, the Common Drug Review (CDR) recommended that Uptravi be publicly funded for patients whose disease is not being adequately controlled with a first- and second-line therapy. While Uptravi is currently undergoing negotiations through the pan-Canadian Pharmaceutical Alliance (pCPA), it is still not accessible to patients who depend on public funding. To date, none of the recently approved treatments for PAH are accessible to patients in Canada through public funding, with the exception of Opsumit (macitentan), which is only publicly funded in Quebec.

"PAH patients have high hopes for Uptravi as a new treatment option to slow the progression of this rare but very complex and serious lung disease that we know significantly limits life expectancy," says Anna McCusker, Executive Director, Scleroderma Canada. "As we deliver these letters, there are patients in hospital fighting for their lives who are unable to access the treatment they need. We are hopeful that the voices of so many Canadians will be heard by decision makers, and that patients will immediately have access to a treatment option that is urgently needed by some, and seen as a last resort by others." 

Please visit TakeActionPAH.ca for more information.

SOURCE Scleroderma Canada

Stephanie Ronson, Cohn & Wolfe, 647-259-3278, [email protected]