Structural Inequities in Sickle Cell Disease Research

Clinical Trial Design, Funding Disparities, and Policy Recommendations from a U.S. Lens

UAEM Race & Health Equity Committee

Primary Authors: Shravya Girish, Ipek Kocak, Mona Reddy Kurra

Abstract: 

Sickle cell disease (SCD) in the United States remains characterized by significant disparities in clinical trial design, participation, and funding. Because SCD disproportionately impacts Black and low socioeconomic status (SES) populations, many trials underrepresent the patients most affected by the disease, rely on narrow access points tied to specialty centers, and use outcome measures that do not comprehensively capture patient experience. These limitations reduce the generalizability and equity of SCD research. Funding gaps across federal, philanthropic, and global research systems further constrain trial infrastructure and slow progress toward effective therapies. Drawing on a policy analysis, this paper identifies structural barriers in SCD research and proposes recommendations to improve trial design, expand access, and align funding with disease burden. Universities Allied for Essential Medicines (UAEM) proposes recommendations to address these gaps in care, such as equity-weighted research funding, stronger national SCD data infrastructure, federally supported comprehensive care networks, and greater investment in globally led implementation research. These reforms would improve representation in clinical trials, strengthen foundational evidence, and better support populations most impacted by SCD.