Why is it that a disease as common as asthma, which affected approximately 262 million people globally in 2019,1 is so misunderstood? Few policymakers understand the significant risks associated with poorly controlled severe asthma. As a patient advocate and a pulmonologist, we are deeply concerned that it remains a dangerously overlooked public health issue.
Asthma is often considered a mild condition. So it might surprise you to learn that it causes a staggering 1,000 deaths a day worldwide.2 Despite this, asthma care continues to be sub-optimal.3 Clinical practice guidelines are not adopted or adhered to universally,4 and the condition is rarely prioritized by policymakers. Moreover, asthma is not unique in these challenges, which are reflected across all chronic respiratory diseases.
While more attention is needed for all people living with asthma, severe asthma is our focus here, because it disproportionately contributes to high levels of illness and death and it drives a substantial amount of health system costs.5-8
Severe asthma is a distinct condition requiring urgent action
Severe asthma is a much more serious form of asthma that generally does not respond well to standard asthma therapy.9 Despite receiving maximum levels of standardized treatment, some people with the condition experience repeated, unpredictable, life-threatening asthma attacks, and continually struggle to breathe.10-12
Up to 57 percent of people living with the condition have poorly controlled disease, often due to ineffective treatment or misdiagnosis.3, 12, 13 Additionally, more than 50 percent of people with severe asthma are also living with three or more other conditions.14 Severe asthma can hugely limit an individual’s ability to work and socialize with friends and loved ones.10 It is no wonder, then, that the condition has such a detrimental effect on a person’s quality of life.12-15
Yet severe asthma remains poorly recognized and misunderstood, not only in terms of the burden it places on individuals, societies and economies, but also with regard to the need for timely access to high-quality, specialist care.
It is unthinkable that some people living with severe asthma can cycle through the health system for over five years before seeing a specialist.17 This is most likely one of the reasons that only 20 percent of those eligible severe asthma patients, receive a targeted therapy i.e. a biologic.18 But this is the reality for many people living with the condition. Treatments for severe asthma tend to focus on acute symptoms or exacerbations rather than underlying causes; this is largely because it is not identified as a distinct condition by healthcare professionals.19 The resulting over-reliance on, and continued use of, oral corticosteroids can lead to significant short- and long-term adverse effects,20 including conditions such as osteoporosis, cardiovascular disease, diabetes and depression.14
The major delays in diagnosis for severe asthma, lack of clear referral criteria and variations in access to effective treatments are unacceptable.
Change is possible and much-needed: Opportunities for policy action
In light of the current state of affairs, experts in respiratory health have come together to establish a global multi-stakeholder alliance, the Severe Asthma Policy Group. Ultimately, the Group aims to improve lives, and seeks to do so by advancing policy engagement to ensure that timely, equitable and high-quality care for people living with severe asthma is an integral part of every health system.
To achieve this we need to improve education and raise awareness of what appropriate and high-quality care looks like for severe asthma. This will empower people living with the condition, so they can advocate for themselves and self-manage. It will also help healthcare professionals identify people who would benefit from specialist intervention, and refer them accordingly. Finally, it will encourage policymakers to advocate for change.
This important work has already begun with three significant resources: the Global Quality Standards for Identification and Management of Severe Asthma were published in 2020;3 a patient charter on severe asthma was released in 2022;19 and a report, A breath of fresh air: addressing missed opportunities in severe asthma care, was launched in 2023.21 All three publications illustrate where improvements must be made and what best-practice care should look like for severe asthma.
To complement these publications — and to galvanize policy advocacy on severe asthma in the respiratory community — the Severe Asthma Policy Group has developed a new call to action urging governmental institutions and policymakers to:
- implement existing clinical guidelines and quality standards3,9,11 for severe asthma care at the national level;
- drive the establishment of clear referral criteria and the implementation of streamlined care pathways so that patients reach specialists in a timely manner for the appropriate evaluation and optimization of their care;
- enable healthcare professionals to promptly identify people with suspected severe asthma9 and provide coordination between primary and specialist care, by ensuring access to adequate training, decision-support tools and knowledge-sharing platforms;
- collaborate with national respiratory patient organizations to raise awareness of and improve education about severe asthma for everyone living with the condition;
- tackle inequities and disparities in access to severe asthma care by targeting communities with the poorest outcomes;
- develop comprehensive national respiratory disease strategies that enable reliable data collection and include specific, measurable goals for the prevention, early diagnosis, treatment and care of severe asthma.
We must act now
The message is clear: We know what needs to be done in severe asthma, and we can do better.
We must do right by people living with severe asthma so they can lead the active and fulfilled lives they deserve.
References
1. Momtazmanesh S, Moghaddam SS, Ghamari S-H, et al. 2023. Global burden of chronic respiratory diseases and risk factors, 1990-2019: an update from the Global Burden of Disease Study 2019. eClinicalMedicine 59: 101936
2. Global Asthma Network. 2022. The Global Asthma Report. The International Journal of Tuberculosis and Lung Disease 26(Supp 1): 1-104
3. Haughney J, Winders TA, Holmes S, et al. 2020. Global quality standard for identification and management of severe asthma. Advances in Therapy 37(9): 3645-59
4. Jo EJ, Kim MY, Kim SH, et al. 2020. Implementation of asthma management guidelines and possible barriers in Korea. Journal of Korean Medical Science 35(12): e72
5. Nunes C, Pereira AM, Morais-Almeida M. 2017. Asthma costs and social impact. Asthma Research and Practice 3: 1
6. Song HJ, Blake KV, Wilson DL, et al. 2020. Medical costs and productivity loss due to mild, moderate, and severe asthma in the United States. Journal of Asthma and Allergy 13: 545-55
7. Hekking PW, Wener RR, Amelink M, et al. 2015. The prevalence of severe refractory asthma. Journal of Allergy and Clinical Immunology 135(4): 896-902
8. Roche N, Garcia G, Larrard Ad, et al. 2022. Real-life impact of uncontrolled severe asthma on mortality and healthcare use in adolescents and adults: findings from the retrospective, observational RESONANCE study in France. British Medical Journal Open 12(8): e060160
9. Chung KF, Wenzel SE, Brozek JL, et al. 2014. International ERS/ATS guidelines on definition, evaluation and treatment of severe asthma. European Respiratory Journal 43(2): 343-73
10. Asthma + Lung UK. 2020. Falling into isolation: Lived experience of people with severe asthma. London: Asthma + Lung UK
11. Global Initiative for Asthma (GINA). 2023. Global strategy for asthma management and prevention. Fontana, WI: GINA
12. Foster JM, McDonald VM, Guo M, et al. 2017. “I have lost in every facet of my life”: The hidden burden of severe asthma. European Respiratory Journal 50(3): 1700765
13. Wang E, Wechsler ME, Tran TN, et al. 2020. Characterization of severe asthma worldwide. Chest 157(4): 790-804
14. Scelo G, Torres-Duque CA, Maspero J, et al. 2024. Analysis of comorbidities and multimorbidity in adult patients in the International Severe Asthma Registry. Annals of Allergy, Asthma and Immunology 132(1): 42-53
15. Shaw DE, Sousa AR, Fowler SJ, et al. 2015. Clinical and inflammatory characteristics of the European U-BIOPRED adult severe asthma cohort. European Respiratory Journal 46(5): 1308-21
16. Sadatsafavi M, Lynd L, Marra C. 2010. Direct health care costs associated with asthma in British Columbia. Canadian Respiratory Journal 17(2): 74-80
17. Rupani H, Rose J, Cumella A, et al. 2022. P145 What is the severe asthma patient journey to biologic initiation in UK severe asthma centres? Thorax 77(Suppl 1): A159-A60
18. Asthma + Lung UK. 2019. Living in limbo: The scale of unmet need in difficult and severe asthma. London: Asthma + Lung UK
19. Menzies-Gow A, Jackson DJ, Al-Ahmad M, et al. 2022. A renewed charter: Key principles to improve patient care in severe asthma. Advances in Therapy 39(12): 5307-26
20. Price DB, Trudo F, Voorham J, et al. 2018. Adverse outcomes from initiation of systemic corticosteroids for asthma: Long-term observational study. Journal of Asthma and Allergy 11: 193-204
21. Gonzalez de la Fuente A, Wait S. 2023. A breath of fresh air: Addressing missed opportunities in severe asthma care. London: The Health Policy Partnership
Z4-62664 Date of Preparation: May 2024