Establishing an Adult Sickle Cell Disease Clinic in Primary Care: A Medical Home Model at NYC Health + Hospitals / Harlem
Yong Eun, Adjoa Mante, Leo G Eisenstein, Candace Alphonso, Josephine Yoo, Raji Ayinla, Iman Sharif-Session, Kenneth A RivlinAbstract
Background
Sickle cell disease (SCD) is the most common monogenic disorder globally. In the United States, it affects approximately 100,000 individuals. While improvements in pediatric care have enabled over 95% of children with SCD to survive into adulthood, access to comprehensive adult SCD care remains critically limited. Adults with SCD face fragmented care delivery, a shortage of specialized providers, and overreliance on emergency departments for disease management. These gaps disproportionately impact communities in Northern Manhattan and Central Harlem, which serve large Black populations and immigrants from Sub-Saharan Africa and the Caribbean — regions where SCD is endemic. Existing models of SCD care have primarily centered on subspecialty hematology clinics; however, many health systems — particularly safety-net hospitals — lack sufficient hematology-oncology workforce to support dedicated SCD programs. We describe the development and implementation of an adult SCD program embedded within primary care at NYC Health + Hospitals / Harlem, utilizing a medical home model as an alternative to the traditional hematology-led center, based on ASH guideline. While medical home models for SCD have been described, these typically require a sickle cell specialist as clinical lead. This program inverts that structure—positioning a trained primary care physician as the anchor, supported by system-level infrastructure and national guidance—offering a potentially scalable alternative for safety-net settings without dedicated hematology-oncology workforce.
Methods
Following team recruitment and training, a dedicated SCD primary care clinic was established at Harlem Hospital in January 2026. The program is anchored in the primary care setting, with a trained primary care physician serving as clinical lead. The interdisciplinary team includes a registered nurse and a community health worker (CHW), who serves as the primary mechanism for longitudinal patient engagement—bridging clinical care with community-based support to enable sustained continuity within a primary care framework. The clinic operates with a tiered triage system (crisis, urgent, priority, and routine), structured protocols for health maintenance and comprehensive pain assessment using a multimodal treatment framework, and CHW-led post-discharge engagement with standardized outreach tools addressing medication access, health literacy, self-management goals, and social determinants of health. The program receives centralized support from the NYC H+H Office of Population Health, facilitating system-wide coordination and resource sharing across the public hospital network. The National Alliance of Sickle Cell Centers (NASCC) and HRSA’s North East Region Sickle Cell Disease Treatment Demonstration Program (Synergy) provided guidance in developing clinical protocols and training.
Results
The program launched in January 2026 and is actively enrolling patients. Early implementation has demonstrated feasibility of the primary care–led model, with successful establishment of the tiered triage system, CHW-led post-discharge workflows, and structured pain management protocols. Process metrics being collected include patient enrollment volume, post-discharge follow-up completion rates, CHW engagement rates, ED utilization pre- and post-enrollment, hydroxyurea prescription and adherence rates, and patient-reported satisfaction. Outcomes will be assessed prospectively over 12 months.
Conclusions
This initiative represents a novel approach to adult SCD care delivery by leveraging the primary care infrastructure of a safety-net public hospital system as a medical home. Unlike traditional models that depend on limited hematology-oncology resources, this primary care–based model may offer a scalable, replicable framework for expanding access to comprehensive SCD care in under-resourced settings. The integration of CHW-led outreach, structured triage protocols, and system-level support from the NYC H+H network positions this program to address the clinical and social complexity of adult SCD. This model may inform national efforts to close the gap in adult SCD care access.