2021 brought the consolidation year for the European Lung Health Group (ELHG), a collective initiative driven by European level patient groups and respiratory societies collaborating for better respiratory healthcare and respiratory protection of our lungs.
Initiated by EFA Patients in 2019 and kicked off in 2020, 2021 saw the evolution of the ELHG to become a platform for the seven European level patient groups, the European Respiratory Society and the European Lung Foundation to gather, strategize and learn from each other, as well as develop joint advocacy to drive policy change for lung health.
BREATHE Vision for 2030, a roadmap for lung health
In January 2021, we launched the BREATHE Vision for 2030, a document that outlines the changes that lung patients want to see in their lives over the next decade. It covers the areas of Awareness, Prevention, Access, Research, and the Impact of COVID-19, all while working towards a European Health Union.
[Launch of BREATHE Vision for 2030. Tamsin Rose, moderator; MEP István Ujhelyi (S&D, Hungary); MEP Željana Zovko (EPP, Croatia)]
Its launch was warmly welcomed by Members of the European Parliament (MEPs) István Ujhelyi (S&D/Hungary), Željana Zovko (EPP/Croatia) and Sean Kelly (EPP/Ireland). The BREATHE Vision for 2030 was institutionalised by keynote speakers from the European Commission Directorate General for Health and Food Safety (DG SANTE), Deputy Director of DG SANTE, Mr Pierre Delsaux, and the Coordinator of the WHO European Office for Noncommunicable Diseases, Jill Farrington.
To build on the BREATHE Vision, the ELHG held a follow-up in-depth meeting with Deputy Director General, Mr Pierre Delsaux, on how to address lung health (all chronic, rare and infectious respiratory diseases), in the current EU4Health Programme 2021-2027. After the meeting, DG SANTE nominated a Principal Adviser for non-communicable diseases.
The group also met with the DG SANTE Coordinator of the Steering Group on Health Promotion, Disease Prevention and Management of Non-Communicable Diseases and specialists from the Joint Research Center. They discussed how to identify and present the best practices (population interventions) on lung health prevention and care, that could lead to EU-funded or supported programmes to address respiratory disease.
The lung health voice on EU digital health and medicines
Throughout the year, the ELHG deepened our advocacy calls during several official legislative review procedures launched by the European Commission. The ELHG agreed on a two-year advocacy plan which detailed its opportunities and deliverables. As a result, the nine organisations together presented priorities that the European Union should act upon in the areas of:
- The medicines for rare diseases and children directives, where 5 ELHG Members responded to the consultation reflecting on the barriers in accessing medicines, which includes the underdiagnosis of disease subtypes, delay and lack of adaption of adult drugs for children, limited access to clinical trials in medicine development, and limited knowledge (such as the lack of understanding of the underlying mechanisms in the development of diseases).
- The General Pharmaceutical Legislation, to which two ELHG Members responded to the consultation conveying that the definition of patient unmet need is not a yes-no question but a matter of degree. Any definition/criteria must also consider burden of illness, burden of current treatment, and the impact on the quality of life of patients and carers. Whatever the agreed definition or criteria are is, it must catalyse patients’ views, be useful for targeting medicines innovation, and not be exclusionary or commercial.
- The European Health Data Space, that brought together three ELHG Members to respond to the consultation urging that patients’ rights should be at the core of the Commission’s proposal while enabling data sharing in a way that patients are in charge and to reduce any inequalities across EU Member States during the implementation of this project.
In February 2022, the ELHG group launched in the framework of the European Parliament MEP Lung Health Group a Policy Brief on the upcoming European Commission Proposal for a Regulation on the European Health Data Space (EHDS). The event was hosted by Portuguese socialists Members of the European Parliament (MEPs) Sara Cerdas and Manuel Pizarro with over 500 participants registered.
European Lung Health Group
- 7 European level lung patient groups (logos)
- 1 European medical society (logo)
- 1 European foundation for the lung (logo)
- 7 2-hour meetings in 2021
These achievements would not have been possible without the insights, vision and dedication of the eight European organisations that have participated in the discussions and drafting of this paper, on a voluntary basis.