“The worst part of living with asthma used to be that nobody believed me.  It’s kind of an invisible illness. You don’t always want to say ‘I am not feeling well, I have asthma’ because there is still a stigma.  Even when you go to the hospital they ask, ‘Well, how bad is your asthma attack?’ What difference does it make? An asthma attack is an asthma attack and I need help, otherwise I wouldn’t be here.”

Julia is a mother of three, her youngest son, Nathan, aged 13, has asthma.  Nathan was first diagnosed with asthma at the age of five and since then Julia has spent many sleepless nights in the emergency room and has missed significant time off from work to take Nathan to doctor’s appointments and to take care of him when his symptoms prevent him from attending school.  Nathan has been on seven different medications since he was first diagnosed, but none have been successful at effectively managing his symptoms.

Earlier this year, Julia took Nathan to see a Respirologist at their local asthma clinic.  Eight years after first being diagnosed, Julia was shocked to learn from the specialist that Nathan’s asthma, which had previously been diagnosed as moderate asthma, was in fact Severe Asthma, or SA.  Nathan was prescribed a treatment better suited to deal with his Severe Asthma symptoms and since then has seen his exacerbations and symptoms decrease and he has managed to avoid any visits to the emergency department.

Asthma is the third-most common chronic disease in Canada affecting more than three million Canadians, including about 600,000 children, causing pain, suffering, and asthma exacerbations. This means lost sleep, lost work days, scared children and parents, more days in physicians’ offices and hospital emergency rooms.

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Severe Asthma (SA), a more severe form of asthma and a greater threat to life, impacts the health and economic well-being of between 150,000 and 250,000 Canadians.  Approximately 250-300 Canadians will die this year from asthma.  Beyond personal costs, asthma is the leading cause of hospital admissions in Canada.  Between 2010 and 2011, direct and indirect costs associated with treating asthma topped more the $1-billion dollars.

Julia and Nathan’s story is not unique.  Canadians with asthma are being misdiagnosed far too often.  The Asthma Society of Canada believes this problem is being furthered by an unclear standard definition for Severe Asthma,  leaving the patient and physician with the difficult job of identifying the appropriate diagnosis and prescribing the optimal treatment.

Last year, the Asthma Society of Canada released the first-ever patient study of Severe Asthma in Canada.  The study, Severe Asthma: The Canadian Patient Journey, takes an in-depth look at the personal, social, medical and economic burden of Severe Asthma in Canada.

“The good news in this report is that SA is a disease Canadians have the possibility to control. We need more research into SA, more attention to the issue by physicians and government, and more resources to educate patients about how to manage their disease,” says Robert Oliphant, President and CEO of the Asthma Society of Canada. “If we can rally against SA, we will save lives and improve the quality of life for hundreds of thousands of patients and their families. All we need to do is act.”

Severe Asthma: The Canadian Patient Journey, included extensive interviews with SA patients in Alberta, Ontario and Quebec, as well as responses from every province through an on-line survey. It highlights the patient experience of SA, in their daily lives, the health care system, with respect to treatment options and with family, friends and in the work place. The study defined important discoveries about SA’s impact on Canadians.

The study found that SA is generally poorly understood and diagnosed, and inconsistently managed by health care providers.  Its severity is also discounted by patients themselves, sometimes as a result of the stigma associated with the disease.  Despite all study participants having SA, as identified by the Canadian Consensus Guidelines, 21 per cent of respondents said their physician had described their asthma as ‘mild’ or ‘moderate.’  Additionally, more than half of respondents (64.6 per cent) said that they have felt stigmatized at some point because of their asthma, with 22.2 per cent saying they feel stigmatized ‘quite often.’  Similarly, 66 per cent of respondents felt that their asthma interferes with the quality of their social interactions with others.

The impacts of SA are significant and were identified as reducing the personal, social, financial and health outcomes for many Canadians.  There is also a noticeable impact of SA on the Canadian economy.  Many patients identify cost as significant barrier to better health outcomes.  More than a third of respondents reported their household income as being under $50,000 which was identified as a barrier in their ability to manage their asthma.  Seventy-four per cent of respondents have been denied coverage for physician-recommended treatment options by insurance programs.  One respondent described having to rely on sample medication to maintain the treatment schedule: “My doctors help me with the cost by giving me samples of most of my inhalers, but when I have to pay for them, except for the Ventolin which is reasonably priced, I have to take on extra work to help pay for my medication.”

According to the Conference Board of Canada, the cost of hospitalization for asthma in 2010 was $250,728,024.  The physicians who cared for these patients cost $196,321,334.  The cost of asthma medication in 2010 was $535,681,566.  Finally, indirect costs of asthma, including decreased productivity, was estimated at $646 million dollars.  Thirty per cent of respondents reported that they missed work or school because of their asthma.  Sixty-six per cent missed five days or more in a given year, and 31.9 per cent missed more than 10 days.

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Patients clearly indicated a preference for being able to see a specialist to help treat and manage their asthma, however only 31.6 per cent of respondents indicated that they had access to a respiratory specialist, Forty per cent had access to a respirologist, 33.7 per cent could access a community asthma clinic and only 22.1 per cent had access to a Certified Asthma/Respiratory Educator.

Even when patients are able to see a specialist, there is widely inconsistent criteria and differing diagnostic techniques used when diagnosing and grading asthma.  The study showed that only half of respondents reported being given any lung function or pulmonary tests prior to their diagnosis.  Tests often don’t include standard allergy testing or elementary objective lung function tests such as spirometry.  Additionally, less than half of respondents said their health care practitioner discussed proper inhaler techniques, Asthma Action Plans and the benefits and risks of an inhaled steroid medication.

Of additional concern is that a surprisingly large number of patients are not being given information about the newest kind of therapies for their asthma.  Patients knew little about new biologics available for the treatment of SA and none had heard of Bronchial Thermoplasty despite its availability in several centres geographically near interview participants.

At the conclusion of this study, the Asthma Society of Canada issued a Call to Action, calling upon:

• Professional medical associations to establish a clear definition of SA based on new international guidelines that patients can understand and physicians will use to make diagnoses;
• Physicians to make full use of objective lung function testing before diagnosing Severe Asthma instead of simply relying on symptoms as reported by patients;
• Patients to learn to manage their asthma and to recognize when their asthma is not under control before ending up in a hospital;
• Governments to recognize the financial burden of SA on the patient and to increase funding for research into SA, its causes, types, treatments and cure;
• Employers to accommodate employees with SA regarding workplace environment, flexible working hours and medical leave when required, without adding to the stigma often faced by people with Severe Asthma.

About the Study

• Severe Asthma remains one of the least understood and least studied manifestations of asthma.
• To examine the complex health, social and economic issues related to SA, the Asthma Society of Canada conducted a study of Canadians about their experience with SA. The study, which included in-depth interviews as well as an on-line survey, was conducted in the summer and fall of 2013. It sheds light on how SA, controlled and uncontrolled, affects a patient’s quality of life, expectations for the future, medication preferences and experience with the healthcare system.
• All participants in the study were Canadian adults 18 years and older who live with severe, controlled or uncontrolled, asthma. All potential participants were evaluated through a strict screening process and only qualified applicants were interviewed.

 “What Patients with Severe Asthma Want”

Patients with SA showed a general willingness to take medications when associated with the strong desire to live normal lives, participate in routine household activities and daily exercise and attend the hospital for asthma-related issues less frequently. Nighttime symptoms and the consequent loss of sleep were ranked more critical than daytime symptoms, but an overwhelming number of respondents simply wanted to be able to go to work and be involved in the economic life of Canada.

Activities that other Canadians take for granted continue to be the dream of people with SA. They ranked the following as their main goals with respect to their disease:

• To function normally while completing household activities, walking and enjoying life (98% very important, 1% somewhat important)
• To not have to visit the emergency department or be admitted to hospital (89% very important, 9% somewhat important)
• To sleep without nighttime symptoms (87% very important, 11% somewhat important)
• To exercise without asthma symptoms (80% very important, 17% somewhat important)
• To go to work (84% very important, 5% somewhat important)
• To improve breathing test results (74% very important, 17% somewhat important)
• To live without daytime symptoms (68% very important, 26% somewhat important)
• To lower the overall amount of asthma medication taken (69% very important, 17% somewhat important)
• To escape from dependence on reliever medications (55% very important, 24% somewhat important)