Isabel Proaño Gómez, Communications Manager at European Federation of Allergies and Airways Diseases Patients’ Associations (EFA) explores the issue of severe asthma and how our understanding of it is evolving
“I knew it!”. This is what many adult asthma patients are thinking today. They knew there was something wrong with the way their lungs behave, despite their asthma medication. Science is not knowledge set in stone, and the patient community knows it very well: their daily burden is and should be at the heart of medical research developments.
Patients with what we know today as severe asthma suffer from aggressive and sudden symptoms. No matter how hard they try to control it, asthma attacks, coughing and wheezing surprise them in the middle of something, ruining their day, week, month and their life.
Patients whose asthma is severe relate this kind of experiences very often go to their doctors. Although asthma is a well-known chronic disease, which in its allergic form can even disappear in childhood with the correct treatment, asthma touches 30 million Europeans below 45 years old. The minority of patients with severe asthma (10%) suffer a real burden, with acute symptoms that can lead to a deadly asthma attack.
Severe asthma requires accurate diagnosis and research
Our understanding of asthma is evolving at a quicker pace now. A century ago, asthma was divided between allergic and non-allergic asthma, but this classification has significantly changed, and physicians are referring now to the genotypes and phenotypes (the genes and environmental factors that explain the existence of a disease). On top of that, thanks to new recent laboratory techniques, researchers are now looking for biomarkers, which are specific chemicals in our blood, urine and sputum that could tell us more about who is at risk of developing what type of asthma.
Although no specific biomarker has been defined for asthma yet, the asthma patient community is expecting to participate in new research following up on what we have. At European Federation of Allergies and Airways Diseases Patients’ Associations (EFA), we took part in the U-BIOPRED research project, a multi-year Innovative Medicines Initiative project working on the biggest European asthma patient data cohort and highlighted what we already felt: asthma is definitely more complex than expected and we need to define different types of severe asthmas more precisely.
Delayed diagnosis undermines self-confidence and health
In the meantime, severe asthma diagnosis has to rely on the patients’ experience more than on innovative tests. In the last decades, the concept of asthma severity has progressed from the classification by lung function, to the patients’ degree of asthma control. In my opinion, this evolution is already showing that care for asthma patients is shifting towards the priority that matters: to what extent can patients cope with asthma? The response to the question has already enabled the commercialisation of new treatments, but is knowledge distilling across countries and healthcare professionals?
The good news is that things are shifting with precision medicine or, more preferably, P4 medicine; predictive, preventative, personalised and participatory. People with severe asthma need personalisation and to be able to set their own goals to live and plan this life healthier. When it comes to diagnosis and management, we might be adopting the “one patient, one asthma” approach.
The bad news is that many patients are right now fighting their asthma without having a proper diagnosis on its severity. In severe asthma, the patients’ response to treatment is irregular and to define it, doctors look at elements like the number of hospitalisations and long-term use of oral corticosteroids in high doses, which have severe secondary effects. Asthma severity is defined by medication. Even with that, patients need to wait approximately a decade to get a proper diagnosis of their asthma, which undermines their trust in finding a solution but also their self-confidence.
Asthma demonstrates trust in patients is key
As we have captured in our “Severely, asthma” video series, people with severe asthma have been pointed by the finger of a wrong inhaler technique or not following the prescribed treatment. Yet their experience with asthma can be a source of knowledge and innovation for researchers and healthcare systems. People with severe asthma are determined for health. The experience of severe asthma diagnosis is, therefore, the tip of an iceberg that we need to confront for the 21st-century personalised healthcare era.
Special thanks to Carlos Nunes, EFA Secretary to the Board, for his input into this article.
References
Lung Health in Europe: Facts and Figures, European Lung Foundation, 2013 [Accessed 13/03/18]: http://www.europeanlung.org/assets/files/publications/lung_health_in_europe_facts_and_figures_web.pdf
Fighting for Breath: A European patient perspective on severe asthma, European Federation of Allergies and Airways Diseases Patients’ Associations, 2005 [Accessed 13/03/18]: http://www.efanet.org/images/2012/07/Fighting_For_Breath1.pdf
U-BIOPRED Project – Unbiased Biomarker’s in PREDiction of respiratory disease outcomes [Accessed 13/03/18]: http://www.europeanlung.org/projects-and-research/projects/u-biopred/home
Severely, asthma Project, European Federation of Allergies and Airways Diseases Patients’ Associations, 2005 [Accessed 13/03/18]: http://www.efanet.org/resources/library/3296-severely-asthma-project
Isabel Proaño Gómez
Communications manager
European Federation of Allergies and Airways Diseases
Patients’ Associations (EFA)
Tel: +32 (0)2 227 2712
