Equity Tools Miss High-Burden Pediatric Diseases: Sickle Cell Disease in New York City Community Health
Kenneth A Rivlin, Rick ZongAbstract
Background
Under the Affordable Care Act (ACA), nonprofit hospitals use Community Health Needs Assessments (CHNAs) to identify priority health needs and guide community benefit investments. Although CHNAs are framed as equity-promoting tools, prioritization methods often emphasize population prevalence and feasibility, which may disadvantage lower-prevalence conditions with high per-patient morbidity and structural inequity, such as sickle cell disease (SCD). In New York City (NYC), SCD is associated with the highest 30-day readmission rates of any chronic condition and substantial per-capita healthcare expenditures. This study evaluated how major NYC health systems represent and prioritize SCD within their CHNAs to assess whether current prioritization frameworks capture high-burden, low-prevalence pediatric diseases.
Methods
We conducted a systematic review of publicly available 2022–2024 CHNAs and associated Community Service Plans from the five largest nonprofit health systems in NYC, as well as NYC Health + Hospitals, the city’s public safety-net system. Documents were analyzed using structured keyword searches (e.g., “sickle cell,” “hemoglobinopathy,” “rare disease”) and manual review to assess whether SCD was included in community engagement processes, identified as a priority health need, or addressed in implementation strategies. We extracted stated prioritization criteria and contextualized SCD relative to commonly prioritized chronic conditions using a framework comparing population prevalence and per-patient burden. Patient-level sex or gender data were not available due to the institutional nature of CHNA documents.
Results
Across all reviewed health systems, sickle cell disease was not identified as a prioritized community health need and was not addressed in any implementation strategy. NYC Health + Hospitals was the only system to include SCD as a discrete option during community engagement; however, SCD was subsequently excluded during prioritization and omitted from the final CHNA and implementation plan (Table 1). No private nonprofit system explicitly mentioned SCD in surveys, priority rankings, or implementation strategies. Prioritized needs consistently focused on adult and cross-cutting conditions such as mental health, substance use, housing instability, cardiovascular disease, and access to primary care (Table 2). Comparison across conditions demonstrated that although SCD has lower population prevalence, it carries substantially higher readmission rates and per-patient costs than many prioritized conditions (Table 3). Across systems, prevalence-based scoring emerged as the dominant driver of prioritization, indicating that exclusion of SCD occurred at the prioritization stage rather than during community engagement or data collection.
Conclusions
Sickle cell disease was uniformly excluded from Community Health Needs Assessments across major NYC health systems despite its extreme morbidity, cost, and disproportionate impact on marginalized communities. These findings identify a structural limitation of current CHNA methodologies: reliance on prevalence-driven prioritization may inadvertently obscure high-burden pediatric and rare diseases. Importantly, this analysis does not suggest that identified CHNA priorities are inappropriate; rather, it demonstrates that existing frameworks systematically disadvantage conditions like SCD. To fulfill their equity mandate, CHNAs should incorporate burden-sensitive metrics—such as readmission rates, avoidable utilization, and structural inequity—into prioritization processes. Using SCD as an exemplar, this study highlights an actionable opportunity to recalibrate CHNAs from broad population surveillance tools into instruments capable of advancing equity for historically overlooked communities.