Before the official opening of the ERS Congress, I had the opportunity to participate in the ELF (European Lung Foundation) Networking Day, which set the stage for discussions on patient empowerment and the critical role of clean air in health. The European Lung Foundation is a vital organization that bridges the gap between patients, the public, and healthcare professionals, promoting lung health and advocating for policies that protect respiratory well-being. The day was filled with insightful presentations and discussions, emphasizing the power of patient advocacy in shaping health policies.

Clean Air for Health: Empowering Patients to Drive Policy and Change

Dr. Maria Neira delivered an impactful presentation highlighting the importance of clean air for health, focusing on the tragic story of Ella Kissi-Debrah, a young girl whose death was directly linked to air pollution due to asthma complications. This story underscored a broader, alarming statistic: air pollution is responsible for approximately 7 million deaths annually, and 9 out of 10 people globally live in areas with air quality that exceeds the limits recommended by the World Health Organization (WHO). A staggering 2.3 billion people still rely on polluting energy sources for cooking, contributing to a variety of noncommunicable diseases (NCDs) such as cardiovascular issues, chronic respiratory conditions, cancer, diabetes, and mental health problems.

Dr. Neira emphasized that individuals with preexisting conditions, such as respiratory diseases, are particularly vulnerable to the effects of air pollution. Two-thirds of outdoor air pollution is generated by fossil fuel combustion, highlighting the urgent need for a transition to cleaner energy sources. She called for a comprehensive approach to air quality, equating it with the standards applied to water quality. Health workers were encouraged to engage at micro, meso, and macro levels, utilizing resources like the WHO’s OpenWHO online training course on air pollution and health to better understand and combat this issue. Dr. Neira passionately advocated for patients to recognize and exercise their rights, urging them to use their voices to fully integrate air pollution as a recognized risk factor for respiratory diseases through campaigns like WHO’s BreatheLife.

Patient Organizations: Advocating for Change

The session also featured representatives from various patient organizations, each highlighting the unique challenges and initiatives within their fields. Nicole Hass from APEPOC in Spain addressed the high prevalence of COPD, noting that 11.8% of the population is affected, with an underdiagnosis rate of 74.6%. Observational studies have shown that many individuals diagnosed with COPD at age 65 likely had lung function changes as early as age 25, indicating a significant window for early intervention and prevention.

Evi Chatziandreou of FairLife, which focuses on lung cancer care, introduced the Four Ps approach to healthcare: predictive, preventive, personalized, and participatory. She shared details of events organized in Greece aimed at promoting healthy lungs, emphasizing the importance of tailored, patient-centered approaches in managing lung cancer.

Hilde De Keyser from CF Europe highlighted the need for collaborative efforts in addressing disparities in care across Europe through the Twinning Expansion Project. This initiative pairs hospitals and patient associations from different countries, fostering mentorship and the exchange of best practices to meet unmet needs in cystic fibrosis care. Hilde beautifully encapsulated the ethos of patient-driven care with the phrase, “When I is replaced by we, even illness is replaced by wellness,” emphasizing the shift from patient-centered to patient-driven approaches.

ERS Leadership and Future Directions

The ERS President, Gappa, delivered a powerful address underscoring the importance of prevention and the necessity of early intervention. She called for a united effort between healthcare professionals and patient representatives to tackle the enormous burden of respiratory diseases. The incoming President echoed these sentiments, reinforcing the need for relentless advocacy to address the challenges posed by respiratory conditions worldwide.

In his closing remarks, Dimitris emphasized that clean air must be a priority in policy agendas, and meaningful change cannot occur without the active involvement of patients. He highlighted the efforts of the International Respiratory Coalition, founded by ERS and ELF, which aims to bring together stakeholders, including the MEP Lung Health Group, to drive forward policy changes that prioritize respiratory health.

The ELF Networking Day was a powerful reminder of the role patients play in shaping health policy and the critical need for collaborative efforts in advocating for cleaner air and better respiratory care. It set a positive tone for the congress, underscoring the shared commitment of patients, healthcare providers, and policymakers to improving lung health globally.

Hall Skaara
Project Manager
September 15th, 2024