Community leads the way: the essential role of CBO-Anchored community health worker partnerships in strengthening hydroxyurea uptake and sickle cell disease care

Objectives Hydroxyurea (HU) is an evidence-based, disease-modifying therapy that reduces complications for individuals with sickle cell disease (SCD). Despite its benefits, HU uptake remains suboptimal, particularly in historically marginalized communities facing barriers such as healthcare mistrust, misinformation, and structural inequities. In 2020, NYC Health + Hospitals (H + H) launched a citywide initiative, funded by the U.S. Office of Minority Health, to improve HU use by partnering with community-based organizations (CBOs) and community health workers (CHWs) to address these barriers. Methods The initiative was evaluated through an independent, mixed-methods study conducted by the New York State Department of Health. This system-wide intervention reached over 300 providers, with 99 actively participating in the incentive program, and impacted approximately 400 pediatric patients annually, with outcomes assessed in a matched cohort of 730 Medicaid-enrolled patients. Our CBO’s intervention involved culturally grounded health education, peer support, and practical assistance with non-clinical needs. Evaluation methods included qualitative interviews with clinicians, CHWs, and program leaders, supplemented by quantitative analyses of healthcare utilization and pharmacy data from pre- (2019) and post-intervention (2022–2023) periods. Results The CBO–hospital partnership was essential to the initiative’s success. The CBO provided trusted community infrastructure, within which CHWs delivered frontline education, navigation, and social support, addressed social determinants of health and strengthened trust between families and clinical teams. Statistically significant improvements were observed: HU fills increased from 57% to 79%, adherence improved from 33% to 40%, and patients seen by participating providers were significantly less likely to have emergency department visits after adjustment. Qualitative data confirmed that the CBO-anchored CHW model was a critical driver of these outcomes. Conclusion Integrating trusted community organizations into clinical care models can overcome entrenched barriers, improve HU adherence, and advance health equity in SCD care.