Sickle cell disease 115 years later: improving health outcomes through policy, research, and collaboration, to achieve health equity.

Sickle cell disease (SCD) has been documented for more than 115 years, yet its scientific and clinical history extends far deeper, beginning with African physicians such as Dr. James Africanus Horton, who described symptoms consistent with SCD decades before its formal recognition in Western medicine. The first modern clinical report, published by Dr. James B. Herrick in 1910, initiated a century of discovery that transformed SCD into the first fully elucidated "molecular disease." Advances in diagnostics, especially newborn screening, comprehensive care, and treatments, including penicillin, prophylaxis hydroxyurea, stem cell transplant and gene therapies, have transformed hematology and improved survival and quality of life. However, access to these advances remains uneven, reflecting persistent inequities that disproportionately impact SCD communities domestically and globally. Against this backdrop, the SCD 115 Years Later Symposium, held November 12, 2025, explored three interconnected pillars shaping the future of SCD care: research, collaboration, and policy. Four sessions illuminated structural and clinical challenges across the lifespan, emphasizing poor access to care, the need for more holistic care models, the importance of engaging community-based organizations, optimizing and expanding SCD surveillance systems, and stronger policy alignment at state and federal levels. Central themes included unified advocacy, improved care transitions, expansion of multidisciplinary care models, improved access to emerging therapies, and the integration of mental health and psychosocial support into clinical practice. Collectively, the symposium-derived priorities connected scientific progress, policy innovation, and community leadership to improve outcomes for all individuals living with SCD and their families.