New Study Released for World Pulmonary Hypertension Day Shows Huge Impact of Rare and Complex Lung Disease on Canadians
Pulmonary Hypertension Association of Canada holding awareness days on Parliament Hill to raise profile of this serious illness
Ottawa, Ontario (May 6, 2024) – Canadians with pulmonary arterial hypertension (PAH) and their families face a large burden in coping with the disease, both due to symptoms and the impact it has on their ability to work and overall quality of life.
These are the key findings of a new report on the impact of PAH released by the Pulmonary Hypertension Association of Canada (PHA Canada) to coincide with World Pulmonary Hypertension Day.
This week, representatives of PHA Canada are on Parliament Hill in Ottawa to raise awareness with officials and parliamentarians of the challenges faced by Canadians affected by this disease and to urge them to move ahead quickly with the provinces to allocate the new funding promised for rare disease medicines through the National Strategy for Rare Disease Drugs.
“Our new report shows that the disease profoundly impacts Canadians with PAH in their ability to work. This is particularly true for those struck by the illness, as many are, during their prime earning years of middle age,” said Dr. Lisa Mielniczuk, Chair of PHA Canada’s Board of Directors and co-founder and Director of the Pulmonary Hypertension Program at the Ottawa Heart Institute and Professor of Medicine at the University of Ottawa. “A further indication of the toll of PAH is that almost all respondents in our new study said that PAH has significantly affected their emotional or mental well-being.”
The report is based on a survey of more than 200 people with PAH across Canada. Almost 90 per cent said having PAH limited their career options and two-thirds said it affected their ability to keep a job. More than 88 per cent said the disease had affected their emotional or mental well-being, with almost 40 per cent saying it had had a significant effect.
“I was shattered when I was first diagnosed with PAH at age 26,” said Jane Sernoskie, an Ottawa resident and kindergarten teacher who received the news in 2016. “I was
young, playing sports and looking forward to starting a family, and was just having episodes of shortness of breath. Then suddenly, I was told I had this rare and incurable disease that threatened not only to take my life at an early age but would prevent me from realizing my lifelong dream of being a mother.”
Thanks to the care of Ottawa medical experts and access to new treatments from Ontario’s exceptional access program, the progression of her disease has slowed. In 2022, with the help of a surrogate, she achieved her dream of motherhood.
Hers is a good news story among Canadians with a disease that is rare, little known or understood, and which takes a large toll. PAH, a specific form of pulmonary hypertension, is characterized by high blood pressure in the pulmonary arteries, the blood vessels that carry blood from the heart to the lungs. The increased pressure is caused by narrowing or blockages, leading the heart to work harder and potentially resulting in heart failure, making it very serious and potentially life-threatening. It is estimated that over 2,000 Canadians have been diagnosed with PAH, but as many as 4,000 may be living with the condition. Notably, without treatment, people with PAH live only an average of 2-3 years after diagnosis.
The PHA Canada study report outlines several other significant findings:
- During their illness, 61% of respondents lowered their work hours, 45% changed from full-time to part-time, and 46% took early retirement.
- Nearly half (45%) require help of a caregiver. Of those, more than three-quarters (77%) reported that their partner or spouse currently assists them with daily activities, while almost three out of 10 (29%) report their children do.
- Caregivers for those with more advanced disease reported they provide an average of 43 hours of care a week to assist the patient with daily activities – essentially a full-time job.
PHA Canada is concerned that more than five years after the federal government first announced new funding for rare disease medicines, there has been no progress in providing new treatments for patients. The federal government initially announced the funding in Budget 2019 and confirmed it in March 2023 when $1.5 billion over three years was promised to implement the National Strategy for Rare Disease Drugs.
“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 the one in 12 Canadians with a rare disease, including PAH,” said Dr. Mielniczuk.
About the Socioeconomic Burden of PAH in Canada study
The Socioeconomic Burden of Pulmonary Arterial Hypertension in Canada study was conducted from August 15 to September 10, 2023. The research aimed to understand how PAH affects patients’ work and daily activities. Adult patients (18 or older) with self-reported PAH (WHO Group 1 pulmonary hypertension) were invited to complete the survey online. The survey was available in French and English and was promoted widely by email and multiple media channels. A total of 217 patients met the inclusion criteria for participation in the study. A copy of the survey report is available here: www.phacanada.ca/burden
The study was conducted by PHA Canada and the Canadian VIGOUR Centre, a research group at the University of Alberta, and made possible through the financial support of Merck Canada Inc. The principal investigator was Dr. Jason Weatherald, and the study was approved by the University of Alberta's ethics board.
About the Pulmonary Hypertension Association of Canada (PHA Canada)
PHA Canada is a federally registered charity whose mission is to empower the Canadian pulmonary hypertension community through support, education, advocacy, awareness, and research. PHA Canada was established in 2008 by patients, caregivers, and healthcare professionals to work together to better the lives of Canadians affected by pulmonary hypertension and represent a united national pulmonary hypertension community.
For more information about the Pulmonary Hypertension Association of Canada, please visit www.phacanada.ca.
— END —
For interviews and media enquiries:
Don Sancton, on behalf of PHA Canada
Mobile: (514) 206-1191
Email: dsancton@3sixtypublicafffairs.com