ELF puts spotlight on lung transplantation inequalities in Europe

ELF has put a spotlight on lung transplantation over the last week by launching a new resource on lung transplant inequities and hosting sessions at the European Respiratory Society’s (ERS) international congress.

The sessions and new web resource bring together three years of evidence gathering, patient narratives and awareness raising to build a foundation for further advocacy work after identifying gaps where urgent action is needed.

Unequal access to life-saving treatment

Lung transplantation offers a life-saving treatment for people living with advanced lung conditions. However, access varies across Europe. Where someone lives can determine who receives a transplant and who does not.

Understanding these differences and why they happen is essential to improving outcomes and equity across healthcare systems, ensuring that patients receive timely transplantation, regardless of where they live.

The new Lung transplantation in Europe: access and equity webpage brings together evidence from two Europe-wide surveys to show where barriers exist:

• No national transplant programmes in some countries mean patients must travel abroad for evaluation and surgery
• Donation rates vary widely across Europe, with opt-out systems showing higher donation rates than opt-in systems
• Cross-border healthcare obstacles include funding complexities, lack of formal agreements between countries, and logistical challenges for patients and families
• Workforce gaps in transplant surgery, pulmonology and intensive care limit programme capacity
• Waiting list care differs between centres, affecting how well patients are supported while waiting for organs
• Long-term follow-up is inconsistent, with fewer clinical checks and quality of life monitoring after the first few years post-transplant

The resource includes patient journey maps, lived experience narratives and video interviews with both patients and experts from transplant centres.

ERS Congress sessions

Alongside the launch of the new web resource, the topic has been highlighted on an international stage at the ERS Congress in a special session bringing together patients and professionals. Chaired by ELF Chair Dimitris Kontopidis and Merel Hellemons, Chair of the new ERS Clinical Research Collaboration on transplantation (TREE: The Transplant Research and Equity European Clinical Research Collaboration), the session examined the transplant journey from multiple perspectives.

ELF Chair, Dimitris Kontopidis, said: “We need collaborative and systemic action to make these changes, address inequalities and meet transplant demands at a European level.”

The session covered challenges at each stage: before transplantation (referral and waiting list support), during transplantation (surgery and family support), and after transplantation (rehabilitation, long-term monitoring and psychological support for patients and carers).

Chantal Van Den Dungen, a carer and Secretary of the European Pulmonary Fibrosis Federation, said: “Getting ready for transplant requires a lot of energy, patience and courage. At any time you could be taken out of the waiting list. Carers need support too – ask how they are doing, what they need to be ready to take care of their patient. Be ready to answer their questions, whatever they are, even if they seem too precise or too difficult.”

View this session in the ERS Congress programme.

Next steps

This vital work has built a solid foundation for ELF to continue advocating for equitable access to lung transplantation based on medical need rather than geographic location.

The TREE CRC will carry this work forward, bringing together transplant centres, researchers, patient organisations and policymakers to advance transplant medicine through coordinated research and advocacy.

ELF is also working with MEPs to share campaign outcomes to expand reach among policymakers.