International Pilot Survey of Sickle Cell Advocacy Organizations: Linking Food Insecurity and Hospitalization

Sickle cell disease (SCD) is associated with high rates of acute care utilization, yet the role of food insecurity as a driver of hospitalizations remains underexplored, particularly from the perspective of advocacy organizations that support affected communities. This pilot study examined whether organizations that perceive higher levels of food insecurity among people with SCD also perceive more frequent SCD-related hospitalizations. We conducted a cross-sectional online survey between June 10, 2025, and July 21, 2025, with five sickle cell advocacy organizations located in the United States, Uganda, and Tanzania. Organizations were asked to rate the severity of food insecurity among the individuals and families they serve and to estimate the frequency of SCD-related hospitalizations within their communities. Ratings were converted to ordinal scores and analyzed using Spearman’s rank-order correlation to assess the association between perceived food insecurity and hospitalization frequency. Results showed a moderate positive correlation (ρ = 0.60), suggesting that organizations serving communities with higher perceived food insecurity also reported more frequent hospitalizations among people with SCD. While limited by a small sample size and reliance on organizational perceptions rather than patient-level data, these exploratory findings highlight food insecurity as a potentially important, and often overlooked, factor in SCD-related health outcomes. Advocacy organizations may offer valuable, context-specific insights into how social and structural determinants shape hospitalization patterns. Larger, multi-level studies that integrate organizational, clinical, and patient-reported data are needed to clarify causal pathways and to inform interventions aimed at reducing preventable hospitalizations among people living with SCD.