International expert opinion on challenges and perspectives in sickle cell disease and equitable access to care: place of automated red cell exchanges

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Sickle Cell Disease (SCD) is the most common inherited blood disorder worldwide, leading to severe complications, reduced life expectancy, and impaired quality of life. Standard treatments, including hydroxyurea, infection prevention, and transfusion therapies, aim to prevent complications. Automated red blood cell exchange (aRBCX) is an efficient and well-tolerated modality that rapidly and sustainably reduces HbS levels. However, its implementation remains limited due to challenges like blood supply, vascular access, cost, and logistics constraints. To explore these issues, Terumo Blood and Cell Technologies (TBCT) convened an expert workshop during the 19th Annual ASCAT congress in October 2024. The objective was to collect insights from experts and patient associations from several countries, to understand clinical practice, identify key barriers and actionable strategies to optimize aRBCX access for SCD patients. The workshop gathered 20 experts and 2 patient associations’ representatives across 8 countries. Four roundtable discussions focused on equity in aRBCX access, transition of care, and implementation and operation of apheresis units. Experts identified centralization of apheresis services, economic constraints, limited evidence generation, vascular access and blood supply challenges, and gaps in transition of care and sexual health as major barriers. Proposed solutions included decentralizing apheresis capacity, strengthening care coordination and national guidelines, supporting data generation, and improving blood supply and vascular access strategies. The essential role of patient associations was also emphasized. This white paper summarizes unmet needs and proposes actionable strategies to enhance equitable access to aRBCX and improve long-term outcomes for SCD patients worldwide.