As the June 2024 European Parliamentary Elections approach, the European Public Health Alliance (EPHA) has emphasised the need to keep health equity high on the political agenda [1]. This call strongly resonates with our mission at the European Society for Organ Transplantation (ESOT), as we continue to direct our efforts towards tackling inequalities in life-saving organ transplantation, regeneration and substitution across Europe [2].

Luciano Potena, ESOT Past President.

Recognising the synergy between our goals, we see an opportunity for collaboration between ESOT, our broader stakeholders and incoming Members of the European Parliament (MEPs) to overcome previously impenetrable barriers to achieving equitable healthcare.

What is driving inequalities in organ transplantation?

Access to treatment

In Europe, inequalities along the organ transplantation pathway significantly impact patient outcomes. Among these, access to treatment poses a major challenge, affecting every stage of the transplantation journey – from donor sourcing, access to transplant centres, waiting lists to pre-emptive transplantation [2-4]. Socioeconomic factors exacerbate these challenges, with research revealing that individuals with comorbidities, higher body mass indexes, increased age, minority ethnic backgrounds and lower socioeconomic status are less likely to make transplantation lists [5,6].

These access barriers translate into alarming statistics: an average of 21 people die each day while awaiting a transplant.4 Delving deeper into specific areas, further studies reveal that up to 15% of heart transplant patients die while on the waiting list [7]. Moreover, in 2022 alone, 178 kidney and liver transplant patients lost their lives while waiting in Italy [8]. These figures underscore the harsh reality of the current transplantation landscape, where poor access can be the equivalent of a death sentence for patients, even when on the waiting list [4].

Research, reporting and data collection

The ability to collect comprehensive data on transplant procedures and outcomes is hindered by significant barriers caused by variable interpretations of data privacy management across Europe, as well as resource constraints that impede the establishment of adequate data collection platforms [9]. This results in substantial data gaps and the inability to provide a global picture of transplantation practices and outcomes in Europe.

This lack of data represents a crucial barrier to benchmarking for equitable organ allocation, timely patient referral, efficient resource management and effective follow-up. Moreover, such gaps make it difficult to offer effective and consistent education, leaving clinicians and patients without the robust evidence or research needed to guide their decision-making.

Healthcare professional (HCP) knowledge

Driven in part by these data gaps, variations in education quality throughout Europe, as well differences in clinicians’ individual risk perceptions, have led to significant disparities among HCPs’ understanding and approach to organ transplantation. This has led to heterogenous access patterns to transplantation for patients with comorbidities, of paediatric age, or complex immune management needs [10]. In addition, within the Intensive Care Unit setting, insufficient training and standardisation among HCPs can result in missed organ donation opportunities, directly impacting organ availability [2].

Public awareness and knowledge

This lack of consistent knowledge extends to patients and the wider general public. Low awareness of the importance of organ donation, coupled with misconceptions, fears and uncertainty, understandably contribute to patient and family reluctance towards transplantation and donation [10]. Lack of dialogue between patients and clinicians can further impact knowledge, preventing patients from seeking clarity around treatment options and transplantation processes [4]

How do we address these inequalities?

The EU Action Plan on Organ Donation, which ran from 2009-2015, had an initial positive impact on addressing these inequalities. Unfortunately, progress has halted in recent years, with some countries even witnessing a reduction in transplantation rates [2]. This has sparked renewed action from ESOT, including the conception of ESOT Action Day, which takes place every year on April 28 to propel our mission to improve outcomes for patients with terminal organ disease. This year’s ESOT Action Day has been an opportune time to reflect on inequalities within this field and, critically, to foster collaborative innovation to devise forward-thinking solutions.

However, reflection and planning will only take us so far. To drive our ambitions forward, ESOT has developed a 5-year manifesto [10] and actionable roadmap – a journey we invite our wider stakeholders and incoming Members of the European Parliament to travel with us.

What does this roadmap for action look like?

Our roadmap has five priority areas, each aimed at transforming the transplantation landscape over the next five years.

1. Prioritise the advancement of scientific research by:

• Implementing funding opportunities and supportive regulatory frameworks for data collection initiatives to promote the exchange of data and best practices across Europe.
• Promoting specific grant programmes and funding opportunities within EU research.

2. Strengthen collaboration among EU member states by:

• Promoting initiatives that support cross-centre collaboration and enable the comparison of organ donation and transplantation rates between countries. The desire is to drive consensus on patient criteria for transplant eligibility, identify knowledge gaps, and streamline practices across Europe.
• Reaching consensus on frameworks and policies that facilitate organ exchange across the EU and better meet transplantation demands.

3. Optimise the role of HCPs by:

• Supporting professional education and cross-centre collaboration.
• Promoting benchmark educational standards for transplantation medicine and surgery.

4. Enhance public awareness and knowledge of the societal benefits of donation and transplantation by:

• Supporting awareness initiatives through national and cross-country tailored approaches, to highlight the crucial role of organ donors and the benefits of transplantation for the overall quality of healthcare systems.

5. Elevate the role of patients and patient advocacy groups (PAGs) in policymaking by:

• Including patients and PAGs in the development of national initiatives to address the practice needs of both organ donors and transplant recipients.

It’s time to act together!

Achieving equitable access to organ transplantation across Europe requires collective action. We urge our health community and policymakers to join us in championing these recommendations so that together, we can create a better future for organ transplantation.

References:

1. European Public Health Alliance. (2023). Strengthening Public Health Across the European Union: A closer look at EPHA’s priorities ahead of the European elections. https://epha.org/campaigns/2024-eu-elections/
2. Vanholder, R., Domínguez-Gil, B., Busic, M., Cortez-Pinto, H., Craig, J. C., Jager, K.J., Mahillo, B., Stel, V. S., Valentin, M. O., Zoccali, C., & Oniscu, G. C. (2021). Organ donation and transplantation: a multi-stakeholder call to action. Nature Reviews Nephrology, 17(8), 554-568.
3. Wu, D. A., & Oniscu, G. C. (2021). Equity of access to renal transplantation: a European perspective. Current Opinion in Organ Transplant, 26(4), 347–352.
4. European Society for Organ Transplantation. (2022). Tackling Inequalities in Organ Transplantation: A Pathway Forward. European Health Forum. https://esot.org/wp-content/uploads/2022/10/EM012518_ESOT_ActionDay_ThinkTankReport_2201005_v0-8_FH.pdf
5. Grossi, A.A., Potena, L., Rossano, J.W., & Breathett, K. (2024). Socioeconomic deprivation and heart transplantation: A call for progress in the United States and Europe. Journal of Heart and Lung Transplantation, 43(2), 334-336.
6. Larsson, J. E., Kristensen, S. L., Deis, T., Warming, P. E., Graversen, P. L., Schou, M., Køber, L., Rossing, K., & Gustafsson, F. (2024). Influence of socioeconomic status on rates of advanced heart failure therapies. Journal of Heart and Lung Transplantation. Advance online publication.
7. Roest, S., Kaffka Genaamd Dengler, S. E., van Suylen, V., van der Kaaij, N. P., Damman, K., van Laake, L. W., Bekkers, J. A., Dalinghaus, M., Erasmus, M. E., & Manintveld, O. C. (2021). Waiting list mortality and the potential of donation after circulatory death heart transplantations in the Netherlands. Netherlands Heart Journal, 29(2), 88–97.
8. Gagliardi, J. (2023). Number of patients who died on organ transplant waiting list in Italy in 2022, by organ type. statista. https://www.statista.com/statistics/540076/patient-deaths-on-organ-transplant-waiting-list-in-italy/
9. The European Society for Organ Transplantation. (2022). Think Tank: Tackling Inequalities in Organ Transplantation – A Pathway Forward [Webinar discussion]. The European Society for Organ Transplantation. https://www.esottransplantlive.org/course/view.php?id=109§ion=0
10. European Society for Organ Transplantation. (2023). Tackling Inequalities in Organ Transplantation: A Pathway Forward. European Society for Organ Transplantation. https://esot.org/wp-content/uploads/2023/09/ESOT_Manifesto_DIGITAL_A4_230904_FINAL.pdf