Guest article by Devi Mey – Chief Executive Officer, and Luciano Potena – President, The European Society for Organ Transplantation (ESOT)
Solid organ transplantation (SOT) is a treatment, not a cure, for people with an end-stage organ disease. On average, in recent years, it is estimated that 130,000 organ transplants are performed each year worldwide, with an unprecedented impact on the quality and duration of the life of patients with organ failure (GODT, 2017).
There have been major advances in the field of transplantation thanks to improved surgical techniques, intensive care and immunosuppression management, leading to increased graft (i.e., organ) and patient survival. However, the major limitation of the widespread use of transplantation is the scarcity of organs. The gap between available organs and people that are in need of them increases yearly, giving rise to serious ethical and practical dilemmas of equity and utility when allocating the organs. According to the Global Observatory on Donation and Transplantation (GODT), the current capacity barely covers 10% of the transplant needs in the world (GODT, 2017).
Due to the scarcity of this resource, and its ethical value, it is of paramount importance that healthcare systems and transplant centres focus on equality in the management of this complex and precious care. Notwithstanding, a lot of data highlights that great inequalities limit the transplant journey.
Age, gender, socioeconomic status, ethnicity, place of residence, level of health literacy, patient awareness, and inadequate training of healthcare providers (HCP) all exert a significant impact on the degree of equity in access to waiting lists, to organ allocation, and also to high-quality post-transplant care. (Vanholder et al., 2021) (Tackling Inequalities in Organ Transplantation: A Pathway Forward, ESOT). One example of the effect of such inequalities is the story of 28-year-old Borislava Ananieva from Bulgaria. When she was a child, it was confirmed she only had one working kidney at minimum capacity. This forced her on a long journey for kidney transplantation, which took her to Pakistan, Turkey, and ending up in Belgium. Anything from finding the donor, the transplantation, and access to treatment meant she had to go to great lengths to finally find the care she needed. Read her full testimony here.
At the core of any effort to establish accountability, the European Society for Organ Transplantation (ESOT) has established a plan aimed at identifying the major issues and inequities related to access to organ transplantation with the ultimate goal of improving access to care for every patient suffering from an end-stage organ disease. Key points are:
- Widespread differences across European Countries in donor availabilities and transplant performances;
- Socioeconomic disparities as a barrier in the context of universal public healthcare systems;
- Limited health literacy of patients with end-organ disease and in the general public regarding transplantation and organ donation;
- Gender disparities in donors and recipients: women are referred to transplant at a significantly later stage of disease than men; women are more likely to be living kidney donors, while the majority of recipients from living kidney donors are men;
- Challenges in organ allocation for specific patient populations, i.e. paediatric patients and patients with high immunological sensitization.
Identifying these issues is pivotal to improving the transplantation landscape in Europe and beyond. ESOT is committed to ever improving the quality of and access to care for patients and to benchmark training and education for HCPs, Allied Health Professionals and Patients. To ensure sustainability and to help drive a changed agenda (ESOT Mission and Vision), ESOT has identified the following actions that aim to tackle inequities associated with access to treatment, education, and awareness in organ transplantation:
- To launch data-driven patient registries and initiate an international call for data, to allow increase in knowledge of patient-centred outcomes and set benchmarks for the quality of care;
- To work closely with patient associations in establishing a multilingual and culturally competent transplant patient information portal aimed at improving patient education and awareness using real-world evidence;
- To develop an HCP communication guide promoting shared decision-making and bridging the inequity gap for access and education in organ transplantation between developed and less-developed countries within the EU.
ESOT has launched a Manifesto that calls for policymakers and anyone interested in building a true European Health Union to include equity in organ transplantation in their health agendas. Increased attention to health disparities and enhanced collaboration across governmental departments, academia, and agencies to end inequities is the first step to reaching our societal obligation for a true European Health Union.
* ESOT started building a platform to host pan-European registries in January 2021, leveraging on the experience of its section ELITA which has been successfully coordinating the European Liver Transplant Registry (ELTR) since 1985. The platform was thought of as modular, scalable and able to receive information on different organ transplants: a one-stop solution for European national and local authorities to contribute data and share the practice with the community.
- January 2021: Launch of the project
- February 2021: The EPITR scientific committee start work on the development of a pancreas and islets transplant registry
- December 2021: Dendrite Clinical System is selected as the technical partner to design, develop and implement the platform.
- January 2022: Funding of BRAVEST in the context of the EU4Health programme
- April 2022: the ESOT Council approves the Governance of the registries project
- April 2022: 1st Registry General Assembly
In 2023, ESOT plans to launch the European Pancreas and Islet transplantation Registry (EPITR) and to work with the EKITA section on the development of pan-European kidney recipients and living donor registries.
In collaboration with patient representatives, a dedicated scientific committee will work on the establishment of a patient web application to collect patient-reported outcomes.
- European Commission – European Commission. (n.d.). European Health Union. [online]
- GODT. (2017). Global Observatory on Donation and Transplantation. [online]
- Tackling Inequalities in Organ Transplantation: A Pathway Forward. (ESOT.). [online; Accessed 30 Oct. 2022].
- 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. and Oniscu, G.C. (2021). Organ donation and transplantation: a multi-stakeholder call to action. Nature Reviews Nephrology. doi:10.1038/s41581-021-00425-3.
Disclaimer: the opinions – including possible policy recommendations – expressed in the article are those of the author and do not necessarily represent the views or opinions of EPHA. The mere appearance of the articles on the EPHA website does not mean an endorsement by EPHA.