The European Federation of Allergy and Airways Diseases Patients' Associations (EFA) recently brought together at the European Parliament patient advocates, healthcare leaders and policymakers to tackle one of Europe’s most pressing challenges in European healthcare systems: chronic obstructive pulmonary disease (COPD), a preventable chronic disease. The event was co-hosted by MEPs Romana Jerković (S&D/Croatia), Tilly Metz (Greens/Luxembourg) and András Kulja (EPP/Hungary) - all committed to lung health and members of the MEP Lung Health Group.
With over 36 million people living with COPD in Europe, the disease not only impacts health but also strains the social and economic potential of our societies. EFA, in collaboration with our community of members, has published the science-based report “Raising the standards of care for COPD in Europe” calling for urgent action to improve COPD care across Europe. The report offers policy recommendations to improve early detection, access to care, reduce stigma and boost research to improve the quality of life for millions.
COPD is a leading cause of death in Europe, yet it remains underdiagnosed and undertreated. It affects not only the health of people but also their social lives, job opportunities and family dynamics. Many live with breathlessness, making everyday tasks difficult, while caregivers often face overwhelming challenges without adequate support.
This is why EFA brought these issues to the European Parliament, urging for immediate action. As EFA President Marcia Podestà stated in her opening remarks, “COPD is not just statistics, it is people’s lives. EU health policy must reflect that.” Her words were echoed by patient advocates and policymakers, emphasising the urgent need for comprehensive policy changes at European level.
EFA President Marcia Podestà
Breaking the stigma and addressing policy gaps
MEP Romana Jerković stressed the importance of EU political action: "COPD patients cannot afford another decade of inaction. We need EU policies that prioritise early detection, better care, and prevention."
EFA President Marcia Podestà, MEP Romana Jerković, Vice President Armando Ruiz
The stigma surrounding COPD is another significant barrier that hampers progress. Often perceived as a self-inflicted disease, the truth is that COPD affects people from all walks of life. As MEP Tilly Metz pointed out, "COPD is more than a health issue. It is a policy priority. We must break the stigma, strengthen care and ensure no patient is left behind."
EFA President Marcia Podestà, Moderator Sarah-Taïssir Bencharif, MEP Romana Jerković, MEP Tilly Metz
This stigma has a direct impact on policy priorities: in the case of COPD, stigma translates into neglection, delayed diagnosis, fewer resources allocated for treatment and a lack of public awareness about the seriousness of the disease, which is irreversible. Our report calls for a comprehensive approach to changing the narrative, with a focus on prevention and early diagnosis to reduce the burden of COPD across Europe.
The role of early diagnosis of COPD in saving lives
One of the report’s key recommendations is the integration of early COPD detection into healthcare systems. Early diagnosis can dramatically improve the outcomes for patients, enabling them to start treatment before the disease progresses too far. MEP András Kulja highlighted the importance of this in his remarks: "Timely detection of COPD can change lives. We must integrate early screening into national healthcare systems." The evidence is clear: early diagnosis leads to better management and quality of life for patients and saves lives.
MEP András Kulja
Putting faces to the numbers: COPD patients and caregivers
Throughout the event, the EFA community shared powerful personal stories about the life impact of COPD. Paula Duarte from Respira, a leading patient advocate, shared the powerful message, "We must especially advance in prevention so that in the next 20-30 years, we can say that COPD is no longer a pandemic as it is now. " Her words served as a reminder that behind every statistic, there is a patient, a family and a community that is directly affected by COPD.
Paula Duarte from Respira, EFA Member from Portugal
Svetlana Atanasova from Eurocarers stressed that COPD does not just affect patients: "COPD impacts families. Supporting informal carers is key to resilient healthcare systems". Informal caregivers often face emotional and physical exhaustion without sufficient recognition or support on how much their care sustains healthcare systems. This is why EFA is calling for policies that provide informal caregivers with the resources they need to support their loved ones.
Svetlana Atanasova, Eurocarers
Prevention: the foundation for a healthier future
The EFA community is also advocating for stronger prevention policies to reduce the burden of COPD. As Marianne Takki, Acting Head of Unit, Directorate General for Health and Food Safety, European Commission explained, “With 70% of COPD cases preventable, the EU is stepping up on prevention, investing in health literacy, and strengthening tobacco control to reduce the burden of lung disease.” Prevention remains the cornerstone of a healthier future and EFA’s vision for Europe is one where COPD is effectively prevented and no longer a leading cause of death.
The path forward: a call to action to raise standards of care for COPD
With the release of this report, EFA has set a clear path forward, but the time for action is now. The patient-driven policy recommendations outlined in the report are grounded in the lived experiences of those affected by COPD and they offer a roadmap for European policymakers to take concrete steps towards improving care for millions of Europeans. Early diagnosis, access to care and a focus on prevention must become the standard, not the exception.
EFA is committed to advocating for the rights of COPD patients and their families and will continue working alongside healthcare professionals, policymakers and our community of patient advocates and caregivers to ensure that no one is left behind in the fight to raise the bar for COPD care in Europe.
Read the full event report here.
Watch the event on EFA's YouTube channel.
EFA is thankful to its sustainable corporate partners Roche and Sanofi and Regeneron Alliance for their unrestricted grants 2023 for the COPD Standards of Care project that made this Report possible. EFA is thankful to its sustainable corporate partners AstraZeneca, Roche and Sanofi and Regeneron Alliance for their unrestricted grants 2024 for this COPD Beyond Care project.