the severe impact of pulmonary arterial hypertension on canadians
the inability to work, take care of yourself without a caregiver, and reduced emotional well-being are the most notable factors affecting the quality of life for people living with pulmonary arterial hypertension.
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pulmonary arterial hypertension affects 2,000 to 4,000 canadians.
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a new report released by the pulmonary hypertension association of canada (pha canada) shows that canadians living with pulmonary arterial hypertension (pah), a rare lung disease, experience a notable burden on their quality of life. it also significantly reduces a person’s lifespan, with people who don’t receive treatment living an average of only two to three years following diagnosis.
the study, conducted using responses from a national survey and released on may 6 – a day after world pulmonary hypertension day – showed that the symptoms associated with the disease, along with its repercussions regarding the ability to work and participate in daily life, were cited as the most impactful when living with pah.
living and working with pulmonary arterial hypertension
pulmonary arterial hypertension, or pah, is a rare lung disease affecting roughly 2,000 to 4,000 canadians. the disease causes blood pressure in the lungs to be higher than it should be, forcing the heart to work harder to ensure the lungs get the blood they need to function at optimal levels.
there are many symptoms associated with pah, much of which are general and can be present in other medical conditions. they include:
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- chest pain
- dry cough or coughing up blood
- shortness of breath
- dizziness with the potential to cause fainting
- nausea and vomiting
- hoarseness or wheezing
- fatigue
- swelling in the feet, legs, or abdomen
- weakness
these symptoms progress and worsen over time, with some being hardly noticeable during the early stages of the disease and becoming more apparent the longer someone lives with pah.
when it comes to specifics, as many as 90 per cent of people living with pah felt their career options were severely reduced, along with roughly 66 per cent stating that holding onto a job was also challenging due to their symptoms and reduced function.
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, said in a news release, “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.”
people living with pah also cited their inability to keep a full-time job, with as many as 45 per cent changing to part-time hours after being diagnosed and 46 per cent retiring early due to their inability to perform their job tasks because of the symptoms of pah.
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the lack of independence caused by pulmonary arterial hypertension
there are various known causes of pah, with heart failure and coronary heart disease being among the primary causes. other heart and blood vessel conditions, including congenital heart defects, can also drive the onset of pah.
lung diseases, such as chronic obstructive pulmonary disease (copd), interstitial lung disease, emphysema, and sleep apnea, are also known causes relating directly to the lungs. in as many as 50 per cent of pah cases, no cause can be determined, but other diseases not relating to lung or heart health can also play a role in developing the disease, such as:
- liver disease
- sickle cell disease
- connective tissue disorders
when another medical disorder drives a person’s pah, the effects of both can severely affect their ability to live out their day-to-day without assistance. however, even without any known cause, the way pah progresses remarkably reduces a person’s ability to live independently without assistance.
according to the reports, as many as 45 per cent need a caregiver to help them with daily activities. the survey results showed that of those who need care, more than 66 percent were cared for by a spouse or partner, while 29 percent enlisted the help of their children.
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as the disease has different stages, caring for someone with pah can differ depending on how advanced it is. those with the most advanced stages of pah required help with their day-to-day activities for an average of 43 hours per week, making caring for someone with the disease a full-time job—with some overtime.
the toll of pulmonary arterial hypertension on mental well-being and emotional health
living with a chronic disease can be challenging on the physical body, but it can also take a toll on a person’s emotional well-being and mental health. one specific study cites that as many as 50.6 per cent of people living with a mental disorder also have a chronic disease to contend with.
other data shows that 71.6 per cent of people living with chronic diseases, such as pah, experience mild to extreme depressive symptoms, often attributed to coping and dealing with the challenges that come with living with a chronic disease.
data pulled from 24 studies looked at the connection between pah and mood disorders specifically, finding that as many as 28 per cent of people with pah also had depression, with 37.1 per cent having anxiety.
these numbers confirm what the survey respondents self-reported during the study, albeit at much lower levels. those who participated in the survey reported their own health struggles, and as many as 88 per cent cited a negative effect on their emotional or mental well-being, with 40 percent saying that that effect was significant.
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“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,” dr. mielniczuk said in the news release.
a call for actionable change
the canadian government pledged $1.5 billion in funds toward rare disease medicines back in 2023, and in the wake of that pledge, many with pah and those working to help those with pah were excited to receive the funding so they could provide more assistance and treatment options to people living with rare diseases, including pah.
however, the billion-dollar promise has yet to be followed through on, leaving canadians on edge while they play the waiting game.
the treatment options available for pah help to alleviate symptoms and improve quality of life while slowing the progression of the disease. that said, there is no cure, and the need for new therapies that can only be accessed after funding is received is vital for those living with pah.
dr. mielniczuk urges the government to do better when it comes to the people of canada living with the severely debilitating and, in some cases, palliative disease.
“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.”
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