“Invisibility” of the disease, delays in diagnosis and physical, social and financial burdens among top challenges to be addressed

TORONTO, ON. (May 5, 2013) – Results released today from the Pulmonary Hypertension Association (PHA) of Canada’s Patient and Caregiver Survey reveal that Canadians with pulmonary hypertension (PH) are struggling to live with the social, physical and financial burdens the disease places on their lives. Respondents list social isolation, lack of disease awareness and both physical and financial burdens as the top challenges that need to be addressed.

Conducted online by Harris Poll on behalf of PHA Canada in late 2013, the survey of 179 respondents (118 patients and 61 caregivers) is the first of its kind conducted in Canada to measure the impact of PH - a rare, debilitating, progressive and potentially fatal lung disease affecting as many as 10,000 Canadians.

“We are grateful to the many Canadians who shared their experiences of living with PH through this important research,” says Angie Knott, National Manager, Pulmonary Hypertension Association of Canada. “Their feedback confirms that too many Canadians are still struggling to live and cope with this rare and fatal disease and they have provided us with valuable insights into what changes are needed most across the country to improve lives.”

Social isolation and relationship issues – for patients and caregivers alike

Every day, more than 70% of patients surveyed and more than 61%* of caregivers surveyed experience social isolation and relationship issues, which they attribute to the “invisibility” of the disease, according to the PHA Canada Patient and Caregiver Survey. The general lack of awareness and understanding amongst their friends, colleagues and the general public is the primary cause of these feelings of social isolation.

In addition, the physical burden of the disease places many social limitations on those affected by it, with seven in 10 patients surveyed reporting they are unable to play with their children/grandchildren or even help them with their homework. Caregivers are also impacted as those surveyed spend more than half* of their time on activities related to caring for their relative with PH.

“Every day has become a challenge since my PH diagnosis,” said Loretta Chu, of Toronto, Ontario, who has lived with PH for 8 years. “When you are dealing with symptoms that others cannot visibly see or relate to, people are quick to misunderstand and even judge.”

Physical limitations and reduced quality of life

The PHA Canada Patient and Caregiver Survey also reveals that 85% of patients surveyed experience mild to severe symptoms or limitations with every-day activities such as walking and climbing stairs.  More than 40% of patients surveyed report frequently suffering from fatigue, low energy and breathlessness, while another 37% suffer from sleep disorders.

These physical symptoms make it extremely difficult for patients to continue living healthy, happy lives and force many, along with their caregivers, to make dramatic changes to their lifestyle, including their professional and personal relationships. Even with current treatments, one-third of patients surveyed feel there are insufficient medication options to optimally manage their PH.

Opportunity costs - impact on employment and income

Due to the physical limitations of the disease, patients also find it very difficult to maintain their employment, with nearly 60% of those surveyed reporting they are either no longer able to work at all or have partially stopped working due to their PH. There is a similar impact on caregivers too, with close to 40%* of caregivers forced to make employment changes to care for someone with PH.

This inability to work carries enormous psychological and social challenges, and also has a tremendous impact on the financial stability of those affected by PH, many of whom are in their prime earning years. Of those surveyed, nearly 90% of patients say that their income has decreased by more than 25% due to their PH-induced change in employment, with nearly half saying their income has reduced by 50% or more.

“The symptoms of PH, like chronic fatigue and shortness of breath, make it extremely difficult to carry out every-day activities that most Canadians take for granted,” said Loretta Chu, who also leads a support group for PH patients in Toronto. “This obviously makes it very hard to maintain one’s employment which brings not only financial income and stability but also a sense of purpose, achievement and social interaction. When all of this is taken from someone, the burden is tremendous.”

The killer waiting game - delays in proper diagnosis

Citing several reasons, including a lack of recognition of symptoms among patients and their primary healthcare providers, the PHA Canada Patient and Caregiver Survey reveals that surveyed patients waited an average of three years for proper diagnosis.  While more than half of patients surveyed state that their family doctor did not initially recognize the symptoms of PH and refer them to the proper specialist, patients themselves suffered an average of 31 and 44 months with breathlessness/dyspnea and tiredness/fatigue respectively before even seeking medical attention.

“This survey has uncovered an alarming lack of awareness of PH and its symptoms. Like many rare and fatal diseases, early diagnosis and access to effective treatment can make an enormous impact on outcomes and quality of life. We now know that we must do a better job of educating both doctors and the general public in PH to help improve, and save lives,” said Dr. Sanjay Mehta, MD, FRCPC, FCCP, Professor of Medicine at Western University, Director of the Southwest Ontario Pulmonary Hypertension Clinic at the London Health Sciences Center in London, Ontario and Chair of the Pulmonary Hypertension Association of Canada.

*Caution – small base (n<100). Results should be interpreted as qualitative, or directional, in nature.

About Pulmonary Hypertension (PH)

Pulmonary hypertension (or PH) is a rare disease affecting the arteries of the lungs. When an individual has PH, the arteries of their lungs become narrowed and scarred. This can result in almost complete closing of the arteries, which can lead to heart failure. Some symptoms of PH are shortness of breath; bluish hands, feet and lips; swelling of hands and feet; light-headedness and dizziness; chest pain; exhaustion and fainting. Because it shares many symptoms with other diseases, PH is often misdiagnosed. PH is a terminal disease for which there is currently no cure.

About the Survey

Harris Poll conducted this online Burden of Illness survey across Canada on behalf of PHA Canada between September 12 and October 25, 2013, among a total of 179 respondents (118 patients and 61 caregivers). Statistical comparisons were conducted at the 95% level of confidence between groups where base sizes allowed. The average age of the patients and caregivers who completed the survey was 51 and 47 respectively. Respondents completed online questionnaires developed by PHA Canada with the guidance of a steering committee including PH doctors, nurses, patients and caregivers. The survey was conducted by Harris Interactive and funded by Actelion Pharmaceuticals Canada Inc. through an unrestricted educational grant to PHA Canada. It is the first survey conducted in Canada to measure the impact of PH on patients and their caregivers, and has allowed a deeper understanding of PH and the physical, psychological and emotional burden the disease has on the lives of those affected by it.

Please visit for more information and to locate your community support organization for pulmonary arterial hypertension.

About the Pulmonary Hypertension Association of Canada (PHA Canada)

The Pulmonary Hypertension Association of Canada (PHA Canada) is a national, registered charity. Our mission is to empower the Canadian pulmonary hypertension community through awareness, advocacy, education, research and patient support. PHA Canada is working to end the invisibility and isolation often experienced by those living with this life-changing disease. To learn more about PHA Canada and pulmonary hypertension, please visit




For more information please contact:

Beth Daniher
Cohn & Wolfe

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