New funding urged for PAH treatment in Canada

Canadians with pulmonary arterial hypertension (PAH) and their families are grappling with substantial challenges due to the disease's impact on their ability to work and their overall quality of life.  

These findings emerge from a new report released by the Pulmonary Hypertension Association of Canada (PHA Canada) to mark World Pulmonary Hypertension Day.   

This week, PHA Canada representatives are visiting Parliament Hill in Ottawa to inform officials and parliamentarians about the difficulties Canadians with PAH face.  

They aim to accelerate the allocation of newly promised funding for rare disease medicines through the National Strategy for Rare Disease Drugs.   

“Our new report reveals that PAH significantly hinders Canadians from working, particularly those in their prime earning years,” stated Lisa Mielniczuk, chair of PHA Canada's Board of Directors and a leading figure at the Ottawa Heart Institute.  

“Nearly all participants in our study reported that PAH considerably affects their emotional or mental well-being.”   

The survey, which included over 200 PAH patients across Canada, highlights that almost 90 percent of respondents find their career options limited by PAH, and two-thirds struggle to maintain employment.  

Furthermore, 88 percent of respondents feel the disease impacts their emotional or mental well-being, with 40 percent describing the effect as significant.   

Jane Sernoskie, a kindergarten teacher from Ottawa diagnosed with PAH at 26, shared her experience: “I was devastated when diagnosed. I was active and planning a family when symptoms like shortness of breath began. Suddenly, I faced a rare, incurable disease threatening my life and my dreams of motherhood.” 

With advanced medical care and Ontario’s exceptional access program, her disease progression slowed, and she fulfilled her dream of motherhood through surrogacy in 2022.   

PAH is a severe condition characterized by high blood pressure in the pulmonary arteries, leading to increased heart workload and potential heart failure.  

Over 2,000 Canadians are diagnosed with PAH, though as many as 4,000 might live with it. Without treatment, the average lifespan post-diagnosis is only 2-3 years.   

Additional findings from the PHA Canada report include:   

• 61 percent of respondents reduced their work hours during their illness. 

• 45 percent switched from full-time to part-time work. 

• 46 percent took early retirement. 

• Nearly half require caregiver assistance, with 77 percent supported by a spouse or partner and 29 percent by their children. 

• Caregivers of those with advanced disease provide an average of 43 hours of care weekly. 

PHA Canada is pressing the federal government to expedite the promised funding allocation for rare disease medicines.  

Initially announced in the 2019 budget and reaffirmed in March 2023 with a pledge of $1.5bn over three years, this funding aims to support the one in 12 Canadians with a rare disease, including those with PAH.   

Mielniczuk urged, “We urge the federal government to work quickly to allocate this important new funding to the provinces so that new treatments can be made available to those with a rare disease, including PAH.”