Eliminating Health Care Access and Quality Inequities in Sickle Cell Disease: Policy Lessons from the End Sepsis Initiative.

Abstract

Sickle cell disease is a prime example of the devastating impact of healthcare inequities. The End Sepsis Initiative developed after a tragic death due to sepsis, provides a powerful model for the sickle cell community. This model recognizes the importance of evidence-based protocols and policy recommendations/mandates to drive transformative systems change. We propose that the sickle cell community mirror this approach. We propose that hospital systems, healthcare organizations, and insurers implement evidence-based protocols, including personalized pain plans, stigma reduction through staff training, vaccinations, preventative screening, disease-modifying therapies, pediatric to adult transition, and connecting unaffiliated SCD patients to a medical home. We recommend state-level interventions, such as using SCD navigator in electronic health records for quality reporting, supporting community health workers' use, and ensuring rural hospitals have access to SCD specialists.