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confronting copd: how stigma and lack of treatment access are hurting patients
5 minute read
copd is an ongoing lung condition caused by damage to the lungs. the most common direct cause of copd is cigarette smoking.
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henry roberts watched a good friend go from diagnosis of chronic obstructive pulmonary disease (copd) to death, seeing her blood oxygen levels drop over time and her body become frail.
she started to have flare-ups or exacerbations, which are lung attacks where your inhaler or medicine isn’t working, you can’t catch your breath and you are extremely ill, often with fever.
“each time you end up in hospital with an exacerbation, you never come out as well as when you went in. and to watch that over time with a very good friend, it’s heartbreaking,” says roberts, co-founder of copd canada, a non-profit patient advocacy association that was provides support and educational materials for a national community of people living with the lung disease.
his friend lasted 13 years, he says, at a time when the average survival after diagnosis was about three years.
he talked with her respirologist who attributed her longer life to “doing everything right.”
she quit smoking, which is often the first logical step after diagnosis. she attended pulmonary rehab, a supervised program for exercise training, education, breathing techniques and lifestyle support; she took her medicines as directed, and was conscientious about monitoring air quality indicators and weather, not venturing out in very hot or cold temperatures.
“she really looked after herself,” roberts adds. “you have to be aware of so many things, like restaurants having washrooms on the ground floor, because they have real problems with stairs. she did everything right. but it’s a progressive disease. there’s no cure.”
what is copd?
copd is an ongoing lung condition caused by damage to the lungs. it is caused by long-term exposure to smoke, fumes, dust or chemicals. the most common direct cause of copd is cigarette smoking.
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current estimates suggest that copd affects two million canadians, with another million potentially undiagnosed and untreated.
according to the canadian institute for health information, copd accounts for 76,000 annual hospitalizations and is surpassed only by childbirth.
the two main forms of copd are emphysema and chronic bronchitis that usually occur together.
in emphysema, the small air sacs of the lungs, called alveoli, are damaged and can’t pass enough oxygen into the bloodstream. chronic bronchitis is inflammation of the lining of the tubes that bring air into the lungs, reducing airflow and making extra mucus.
smoker stigma and shame is hurting copd progress
dr. pierre landry, respirologist at dartmouth general hospital in halifax, says patients often come to him in fear.
“a lot of patients are afraid of running out of oxygen. you know, they’re afraid of suffering. they’re afraid of the symptoms and lung cancer,” he says, noting copd increases the risk of lung cancer and the need for lung transplant.
“some people say, ‘i saw my mom on oxygen and she really suffered,'” dr. landry explains. his role is helping people understand the complex disease process and finding treatment options that work best. part of his job also involves forming long-term relationships with people that become end-of-life moments.
while cardiac diseases, like heart disease and stroke, are more widely recognized and supported by research dollars, copd has been “swept under the rug” because of its link to cigarette smoking and “normalizing” that the disease is caused by long-term cigarette smoking.
dr. landry emphasizes the treatment landscape has evolved very slowly compared to cardiac drugs, but there’s new hope with effective biologic medications that help manage symptoms.
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health canada has approved nucala (mepolizumab), the first biologic with monthly dosing for canadians living with copd.
the need for more testing and pulmonary rehab for people with copd
there’s a tremendous need for the spirometry test for copd which defines the diagnosis, but is not widely available, so there’s a long wait time as people suffer. dr. landry raises the additional need for pulmonary rehab for people with copd (and other lung disorders), that gives them the tools to exercise, eat and sleep better, and reduce shortness of breath—but those programs are few and far between, and inaccessible if you live in a rural area.
data suggests that 1.15 per cent of copd patients are able to access pulmonary rehab across the country. a 2012 evidence review by health quality ontario, referenced in a 2015 study survey, explored pulmonary rehab as a component of care for copd patients in the province, revealing that the program started within one month of hospital discharge is cost-effective at $18,000 per quality-adjusted life-year compared with usual care. think about those dollars today in 2026.
as well, authors note, “moderate quality evidence showed that pulmonary rehabilitation also led to a clinically and statistically significant improvement in functional exercise capacity compared with usual care.”
dr. landry advises patients who are concerned about exercise as too strenuous or even dangerous.
“i find there’s a lot of people with copd who are afraid to exercise, because they have these difficult symptoms. or they’ve heard that they could run out of oxygen and pass out,” he says.
“that’s generally not true. the vast majority of copd patients are able to maintain their oxygen levels and exercise just fine.”
while those with bad knees or arthritis aren’t going to be going out for a run, activity can start with walking in the neighbourhood, for example.
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mental health issues like anxiety and depression are associated with copd as well, so he’d like to see primary care professionals screening patients for these concerns so people can get the help they need for mental health along with physical frailty and the distress of copd.
dr. landry also talks about the addictive nature of cigarettes and his empathy for patients. if people quit smoking at diagnosis, there’s a benefit, but irreversible damage has been done. “i say to patients, ‘if it was easy to quit, you probably would have quit 40 years ago, right?'”
smoking back then is vaping and cannabis today
however, back in the 1960s and ’70s, as roberts points out, “we smoked like maniacs. smoking was everywhere. you smoked in theaters and on planes, in the office, in bars. it was cool to smoke. hollywood was complicit because they glamourized it. the tobacco industry is fleet of foot, so they launched cigarettes for women and sponsored all the major sporting events. it was cool to smoke.”
in speaking engagements, he’ll show clips of cigarette ads from the era and cartoons like the flintstones where wilma was vacuuming while she smoked.
“we’ve done such a good job with driving cigarette smoking to the ground, but now vaping has come up,” he says, mentioning the prevalence of smoking cannabis as well.
“so it’s like after all this work, it’s all starting again,” he says of new smokers with e-cigarettes or cannabis that can lead to lung damage. “it’s like, oh no, here we go again.”
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