By Giuseppe de Carlo
Asthma is one of the most common chronic respiratory diseases and the biggest in children. It affects the airways in the lungs, making breathing difficult. Today there are about 70 million people living with asthma in the European region, a number that is larger than the population of France. To stress the patients’ need for better care and prevention, we call today, on the 22nd World Asthma Day, on European leaders to #ShowLeadership.
Asthma in Europe: lives at halt and costs
Asthma prevalence has increased in recent decades, bringing more direct costs, mostly in terms of hospitalisation, emergency visits, and treatment. For example, in 2015 there were about 330,000 admissions due to asthma to EU hospitals, translated in more than 2 million bed days[1]. We are talking about a chronic disease for which most of emergency situations can be prevented. And yet asthma killed 7,100 EU citizens in 2015 alone, according to the latest Eurostat data. While the majority (5,856) were 65 years old or more, 96 were less than 25 years old[2].
Results from EFA Active Patients Access Care survey, conducted in 2018 in seven EU countries, show that 25% asthma patients visit at least once a year the emergency room, independently of the severity of their disease. Furthermore, one in two severe asthma patients end up at hospital once a year. This is not the way to treat asthma not to mention the impact and disruption it has on the lives of people with asthma, their partners and carers.
Indirectly, asthma also causes millions of missed work and school days and significant loss of productivity. These avoidable costs are linked to an economic burden of more than 70 billion of euros annually[3].
High rates of asthma and costs evidence an urgent problem to solve on how asthma is diagnosed, treated and cared through a life course.
Asthma still escapes first diagnosis
Asthma often starts in childhood. Even if it is a common disease, asthma is still often misdiagnosed. According to our Active Patients Access Care survey the gap between first symptoms and diagnosis in Europe is three years, but 16% of patients who participated in our project initially received a wrong diagnosis and got the right one only after around 4.5 years. That’s only the tip of the iceberg because severe asthma patients have to wait at least double that time.
Delayed diagnosis of asthma and consequent inaccurate treatment do have a toll. This is reflected in our survey: 2 in 5 asthma patients in Europe think they might be healthier today, had they received an earlier diagnosis.
Asthma treatment and plans are not enough for many patients
There are serious issues on how patients are trained to self-manage effectively asthma through their lives. One of the most worrying results from our survey is that 60% of patients with mild asthma take emergency relief medicine to treat their symptoms. This means that, against all clinical guidelines, they treat consequences instead of causes. While we don’t know what exactly is behind mismanagement, other results from our survey reveal patients don’t actually know asthma affects their body. Crucially, the fact that more than 1 in 2 patients don’t have a written management plan is, to put it mildly, worrisome.
Our survey also shows that the management plans of those patients who have them are more often defined by the doctor rather than agreed together with the patients. Management plan is obligatory to have control over your asthma.
Tackling the root causes: the policy pillar for asthma prevention
Surprisingly very little has changed in asthma despite all the new knowledge, treatments and acknowledgement of importance of patient involvement. We need to go back to the drawing board of implementation.
One way of mitigating the toll of asthma is to take action on tobacco and smoking, indoor and outdoor air pollution, occupational exposure to chemicals, bad urban planning, and unhealthy diets. Today the EU has put in place policies and priorities in areas affecting our respiratory health, yet each one of these initiatives is dealing with its own shortcomings and their interconnections to respiratory health are not recognised. One is grappling with implementation problems at the national level, the other is lagging far behind science, the third is missing key health aspects, and some aren’t ambitious enough to protect citizens’ health.
Therefore, there is a feeling among the patient community that all this is just not enough. Legislative work in the EU is still undertaken in silos, sporadically, while a systematic, prevention-centred policy approach to respiratory health is still largely elusive. Moreover, there is clearly a lot more to be done to align policy with readily available scientific facts.
Improving asthma requires courage
Beyond any doubt, this is a challenge that we can face only collectively. This is why we are calling on those who can help people with asthma to #ShowLeadership and take action. Action for better access to care. Action to think respiratory health when promoting policies affecting our lungs, and to secure adequate funds for research.
There is a group already committed at European level to show leadership in asthma. The European Parliament Interest Group on Allergy and Asthma brings together patients, clinicians, and policymakers, with the latter in the driver’s seat. In its Blueprint for the next institutions, Members of the European Parliament calls on the incoming EU leadership to become ambassadors of change by integrating the health perspective in all policies affecting asthma and allergy patients, beyond health, such as transport (outdoor air quality), housing (healthy indoor environments), and consumers policy (chemicals in cosmetics and other daily-use products).
Asthma goes far beyond the strictly defined limits of health dossiers and portfolios and risk factors, the theme of our #ShowLeadership campaign for May. Asthma requires a comprehensive approach that looks at the high prevalence of the disease and effects on children. An approach that integrates prevention and care and pushes healthcare professionals and patients to get out of the comfort zone and share responsibilities.
ShowLeadership Campaign is your opportunity to get engaged for better future for and without asthma. Support it: http://www.efanet.org/campaigns/showleadership
*EFA Active Patients Access Care survey was conducted in 2018 among 770 asthma and COPD patients in Finland, France, Germany, Italy, Poland, Spain and United Kingdom.
[1] OECD/EU (2018), Health at a Glance: Europe 2018: State of Health in the EU Cycle, OECD Publishing, Paris.
https://doi.org/10.1787/health_glance_eur-2018-en, pp 48
[2] Eurostat (2015), Causes of death — diseases of the respiratory system, residents, http://appsso.eurostat.ec.europa.eu/nui/submitViewTableAction.do
[3] European Respiratory Society (2011), European Lung White Book, https://www.erswhitebook.org/chapters/the-economic-burden-of-lung-disease/