Canada: An Asthma Nation

1. SEVERE ASTHMAThe Canadian Patient JourneyA study of the personal, social, medical and economic burden of Severe Asthma in CanadaFor Release May 6, 2014World Asthma Day

2. Canada: An Asthma Nation • Asthma is the third-most common chronic disease in Canada • 2.4 million Canadians over the age of 12 (8.5 per cent of the population) • 490,000 children between the ages of 4 and 11 (15.6 per cent of children in this age bracket). • Severe Asthma impacts the health and well-being of many Canadians. • It is estimated that between 150,000 and 250,000 Canadians who have asthma suffer from SA • Many asthma patients do not have control over their asthma. • 53% of Canadians with asthma have what doctors call “poorly controlled” asthma. • Asthma hits Aboriginal Canadians hardest. • Asthma is 40% more prevalent among First Nations, Inuit and Métis communities • Asthma kills. • Approximately 250 Canadians die each year from asthma. Around the world, approximately 250,000 people die prematurely each year because of asthma.

3. The Economic Impact of Asthma Along with lowering the quality of life, asthma levels a huge expense to the Canadian healthcare system. • #1 cause of hospital admission in Canada • In 2011, Canadian emergency rooms dealt with 64,526 asthma-related events. • Of these visits, nearly 27,000 patients were under the age of 19. • 30% of respondents in a recent study reported having one or more emergency department visits each year • According to the Conference Board of Canada, in 2010 the cost of asthma included: • hospitalization for asthma patients $250,728,024 • Physicians who cared for these patients $196,321,334. • Asthma medication $535,681,566. • Indirect costs, including decreased productivity, $646 million (estimated)

4. Severe Asthma: The Canadian Patient Journey • Late 2013, the Asthma Society of Canada conducted a study of Canadians about their experience with SA as well as the complex health, social and economic issues related to SA • Included in-depth interviews as well and on-line survey • Studied how SA affects a patient’s quality of life, expectations for the future, medication preferences and experience with the healthcare system

5. Expert Advisors Expert advisors helped create definitions, establish the project scope, address barriers and challenges, devise a methodology of data collection tools, ensure appropriate ethics approvals and recruit participants. • Dr. DiliniVethanayagam- Co-Investigator, Associate Professor, Department of Medicine (Respirology), University of Alberta, Edmonton Regional Severe Asthma Center • Dr. Jason Lee - Education Director, St Michael's Hospital Clinical Immunology and Allergy, St. Michael's Hospital, Private Practice Lecturer, University of Toronto Department of Medicine • Dr. Céline Bergeron - Assistant Clinical professor, Department of Medicine, Université de Montréal, Pneumologist, Centre hospitalier de l'Université de Montréal (CHUM) • Dr. Clare Ramsey - Attending Physician, Respiratory Medicine and Critical Care Medicine, Health Sciences Centre Assistant Professor, Department of Medicine, University of Manitoba

6. Severe Asthma Definition: SA is defined as the experience of: continued asthma symptoms, frequent worsening of asthma symptoms and asthma attacks among patients who take multiple asthma medicines with a high degree of compliance and good trigger management. It is also the experience of patients who are not necessarily therapy resistant, but whose asthma is difficult to control and manage and requires a different level of care than milder versions.

7. Study Methodology • Examined patients in four urban centres located in three provinces (Alberta, Ontario and Quebec) using: • Qualitative survey (n=24) involving a lengthy personal interview • Online-based quantitative survey (n=200) to validate the results of the in-depth interviews. • Participants were Canadian adults 18 years and older who live with controlled or uncontrolled SA, and who have been diagnosed with asthma by a physician. • indicators used to determine the severity of asthma were based on a variety of indices of asthma control such as those listed by GINA and reviewed by a team of expert advisors.

8. An Invisible Illness “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.” A Canadian SA patient

9. Major Findings of the Study • SA is not well-managed for most patients. • Inconsistent diagnoses and treatments impair quality of care • Patients are not equipped to manage their Severe Asthma. • Financial challenges create significant barriers to better health outcomes. • SA significantly impairs a patient’s quality of life

10. Finding 1: SA is not well-managed for most patients • Only 17% of the study’s respondents believe their asthma is well controlled. Half believe their asthma is adequately controlled, 27% believe their asthma is not well controlled and 8% don’t believe their asthma is controlled at all.

11. Asthma attacks happen as often as monthly for people with Severe Asthma. • Half of respondents have had more than five asthma attacks in the previous 12 months. A third of respondents have had more than 10 attacks.

12. Finding 2: Inconsistent diagnoses and treatments impair quality of care • Not all healthcare practitioners can appropriately identify SA. • All of the respondents to the ASC study have SA, as identified by the Canadian Consensus Guidelines. • But, when asked, 21% of respondents said their physician described their asthma as “Mild” or “Moderate.” More than a quarter (27%) reported that their physician described their asthma as “moderately severe.”

13. Most rely on family physicians for care, but would prefer a specialist if they could access one. • The ASC study showed that most respondents (56.7%) said their family doctor is their primary source of care for their asthma. • Most (64.9%) said they felt a respiratory specialist or respirologist would be better suited as their source of primary care for their asthma. • Access to specialists is limited. Only 31.6% of respondents said they had access to a respiratory specialist and only 41.1% had access to a respirologist. Only 33.7% indicated they had access to a community asthma clinic and only 22.1% had access to a Certified Asthma/Respiratory Educator.

14. How Compliant are Physicians?

15. Finding 3: Patients are not equipped to manage their SA • Most patients have no written plan to manage their asthma. Only 23% of respondents use an Asthma Action Plan or an Asthma Diary and 39% have never heard of these tools.

16. Many respondents admit failing to use controller medications as prescribed. • More than half of respondents (57.9%) admitted to not taking their prescribed controller medication, with 32.8% missing prescribed dosages more than two days per week, and 16.4% of respondents missing prescribed dosages more than four days per week. • Most often, patients expressed the belief that they were asymptomatic and not in need of their medication. • Additionally others had given up on the medication because of repeated asthma exacerbations despite past use. Some cited unpleasant side-effects.

17. Finding 4: Financial challenges create significant barriers to better health outcomes Many patients cannot afford the cost of their medication. • More than a third of respondents (36.9%) who indicated their annual household reported it being under $50,000, and this influences how they manage their asthma. • 33.7% of respondents have at some point skipped filling a prescribed medication because they could not afford it. • 21.1% of respondents indicated they missed a dosage because they couldn’t afford it. Many insurance carriers do not provide complete coverage to asthma patients. • 74.4% of respondents have been denied coverage for recommended treatment options by insurance programs. • 29.5% of these people are currently taking alternative treatments for their asthma. • Just over half of respondents (53.7%) have a “full coverage” drug plan and 40% say they only have “partial coverage.” • Only 62.1% of respondents indicated their insurance plans sufficiently covered their treatment costs.

18. Finding 5: SA Impairs a patient’s quality of life SA limits physical activity. • Despite the fact that a clear majority of respondents (89%) agree that asthma was not a reason for avoiding physical activity, 71.4% experience limitations to their daily activities and exercise because of their asthma in the four weeks preceding the study. SA leads to lost productivity. • More than half of respondents (55.1%) indicated that asthma has affected their work or school performance in the past year, and 40% of these people indicated it has affected their work or school “a great deal.”

19. SA is an emergency condition for many patients • Almost half of respondents (48%) visited an Emergency Department because of their asthma in the 12 months preceding the study. • A third went more than once during this period. • One in five had been admitted to the hospital because of asthma in the preceding 12 months, with one in ten having been hospitalized more than once.

20. What Patients with SA Want 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 visits or hospital admissions (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)

21. A Call to Action For Professional Associations • Establish a definition of SA based on new international guidelines that patients can understand and that physicians will use to make diagnoses • Promote physician adherence to the most recent asthma consensus guidelines, including objective diagnostic testing in addition to clinical assessment of patient symptoms • Promote specialization in pulmonology, respirology, immunology and allergies among medical school graduates to increase the number of specialists in Canada • Encourage healthcare professionals to gain certification as Certified Asthma/Respiratory Educators • Educate patients about diagnostics, treatments, triggers and management through support groups and educational programming • Develop innovative tools such as effective electronic Asthma Action Plans

22. A Call to Action For doctors, healthcare professionals and medical researchers: • Proactively enquire about patients’ symptoms, their ability to engage in day-to-day activities and physical exercise, their understanding of asthma control, and recent exacerbations, absences from work and other quality of life concerns that may indicate SA • Ensure patients with Severe Asthma receive objective measures of lung function testing including Spirometry, Peak Expiratory Flow (PEF), Challenge Testing (methacholine and/or exercise challenges) and Sputum Cell Counts as appropriate to assist with treatment recommendations and are referred to a specialist when indicated • Develop, in partnership with the patient, a written, easy-to-understand personalized Asthma Action Plan that provides guidance on self-managing medications, dealing with asthma triggers and surviving asthma attacks and ensure proper inhaler technique is being employed • Inform patients about alternative treatments, including new biologics and medical procedures such as bronchial thermoplasty that may be suitable for some patients to help better control SA • Continue research into medication adherence including options for better medication delivery devices that are easier to use and more effective

23. A Call to Action For Patients: • Know patient rights and responsibilities • Learn what it means to “control” asthma and how to recognize when asthma is “not controlled” • Learn to manage asthma triggers wherever possible and to insist upon asthma and allergy friendly environments at work, at home and in public places • Follow an Asthma Action Plan and ensure compliance with prescribed medication, and if this fails to establish asthma control, consult with physicians about other treatment options • Ensure appropriate inhaler technique knowing it can make a significant difference in medication delivery and asthma control • Join a patient support group such as the National Asthma Patient Alliance to engage with other Canadians with asthma.

24. A Call to Action For Governments: • Encourage healthcare professionals (family physicians, respirologists, allergists, immunologists, pharmacists, nurses and certified asthma/respiratory educators) to engage in cross-disciplinary discussion about the diagnosis, treatment and care of people with SA • Increase secure, cross-sector access and transfer of medical records to ensure consistency of care for patients throughout their healthcare system experience • Recognize the financial burden of SA on the patient for both medical and non-medical expenses through reimbursement and equalization programs in the income tax system • Increase funding for research into SA, its causes, types, treatments and cure

25. A Call to Action For Employers: • Recognize the personal, social and financial burden of employees with SA through enhanced employee benefit programs • Accommodate employees with SA regarding workplace environment, flexible working hours and medical leave when required • Proactively promote an understanding of asthma in workplace to lessen stigma and improve overall health of employees

26. “When I found out I had asthma I felt like I was drowning: I was having difficulty breathing which made me feel like I was struggling under water. Everything was so overwhelming that I didn’t know where to turn or what to do.” - A Canadian patient with Severe Asthma