Author
Marion Wilkens, as appeared in Alpha1 Journal 1/2026.
Lung health should finally be on the health policy agenda – and patients are at the forefront. With the Decade of the Lung, those affected, together with doctors and scientists, are actively participating in political debates and bringing their experiences directly to the table, instead of merely being the subject of decisions.
Chronic lung and respiratory diseases affect millions of people in Germany – yet they still don't receive much attention in health policy. This is precisely where the Decade of the Lung association comes in: an interdisciplinary network of doctors, scientists, and patients who want to finally give lung health the priority it deserves.
An underestimated health problem
Over 14 million people in Germany suffer from chronic lung and respiratory diseases such as asthma, COPD, or pulmonary hypertension – around 16 percent of the population.1 They are among the most common causes of death and cause an enormous burden of disease: In 2023 alone, the direct costs for asthma and COPD exceeded 7 billion euros.2 At the same time, the number of affected people is increasing: between 2010 and 2019 by about 17 percent for asthma and up to 45 percent for pulmonary hypertension.3
In addition, there are several tens of thousands of people with rarer lung diseases such as idiopathic pulmonary fibrosis.4, bronchiectasis5 or the genetically determined alpha 1 antitrypsin deficiency6 – Diseases whose case numbers are sometimes rising sharply, but diagnoses are often made late or not at all.7. Especially in the case of alpha-1 antitrypsin deficiency, a high number of undiagnosed cases is assumed. The actual need for treatment is likely to be significantly higher than official figures suggest.8
Despite these dimensions, a comprehensive health policy strategy to address chronic lung diseases in a structured manner is still lacking.
National Action Plan for Lungs
Therefore, the Decade of the Lung advocates for a National Action Plan for the Lung. The goal is to strategically bundle key measures and anchor them in the long term.
- Strengthen prevention: Lung health needs to be addressed more proactively. This requires a coherent policy framework that reduces avoidable risk factors, supports health-promoting behavior, and ensures long-term prevention efforts.
- Improve early detection: To mitigate disease progression and prevent long-term damage, lung diseases must be detected earlier and more systematically. Preventive care structures should be expanded to include lung-specific elements and better integrated.
- Making supply systems future-proof: People with lung diseases require continuous, needs-based, and high-quality care. Structured care approaches, clear management, and the targeted use of digital solutions are crucial.
“The systematic integration of patient perspectives is also crucial. Sustainable improvements can only be achieved if medical, scientific, and patient experiences are considered together – especially in the case of chronic and rare lung diseases.”
Political dialogue – with patients at the table
To advance these goals, the association contributes its expertise to health policy processes and seeks continuous dialogue with politics, self-governance and other relevant stakeholders.
How this goal is put into practice was recently demonstrated in an exchange with Simone Borchardt, Member of Parliament and health policy spokesperson for the CDU/CSU parliamentary group. Representatives of the Decade of the Lung met at the Grosshansdorf Lung Clinic to discuss concrete levers for better lung health – including effective national tobacco control, the inclusion of lung health in the Check-up 35 program, and the strengthening and further development of disease management programs (DMPs) for asthma and COPD.
Crucially, patients were part of the discussion. With Lorena Krüger, representative of the patient advisory board and board member of the Decade of the Lung initiative, the perspective of those affected was directly incorporated into the political dialogue. Furthermore, insights into daily clinical practice revealed where health policy decisions have an impact – and where structural gaps exist.
Achieving more together
Alpha 1 Deutschland e. V. and Bronchiectasis e. V. are active patient organizations in the Decade of the Lung. They exemplify what defines the network: bringing together medical, scientific, and patient perspectives on equal footing. Because sustainable improvements in lung health can only be achieved together – with patients, not over their heads.
- German Society for Pneumology and Respiratory Medicine, & German Lung Foundation (2023). White Paper on Lungs 2023:
Pulmonary diseases in Germany – facts and figures (5th, revised edition). Berlin & Langenhagen. - https://www-genesis.destatis.de/datenbank/online/url/b0dcfc69
- German Society for Pneumology and Respiratory Medicine, & German Lung Foundation (2023). White Paper on Lungs 2023:
Pulmonary diseases in Germany – facts and figures (5th, revised edition). Berlin & Langenhagen. - https://www.lungeninformationsdienst.de/krankheiten/lungenfibrose/verbreitung
- https://www.lungeninformationsdienst.de/krankheiten/weitere-lungenerkrankungen/bronchiektasen/verbreitung
- https://www.lungeninformationsdienst.de/krankheiten/weitere-lungenerkrankungen/alpha-1-antitrypsin-mangel/verbreitung
- Ringshausen FC, Rademacher J, Hering R, Mertsch P, Pink I, Schulz M, Diel R. Spatial and temporal trends in the diagnostic prevalence of bronchiectasis in Germany between 2013 and 2022. Pneumologie. 2025;79(Suppl 1): S100–S100.
doi: 10.1055/s-0045-1804763. - Greulich T, Nell C, Hohmann D, Grebe M, Janciauskiene S, Koczulla AR, Vogelmeier CF. The prevalence of diagnosed α1-antitrypsin
deficiency and its comorbidities: results from a large population-based database. Eur Respir J. 2017 Jan 4;49(1):1600154.
doi: 10.1183/13993003.00154-2016. PMID: 27824593.
