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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.