Improving Sickle Cell Disease Care

Abstract

ABSTRACT Research into sickle cell disease (SCD), which disproportionately affects historically underserved ethnic and racial groups, lacks funding and resources. The Centers for Disease Control and Prevention's Sickle Cell Data Collection program is a comprehensive data registry that gathers information about disease prevalence, outcomes, and the type of care patients receive, but it's only currently active in 11 states. This article describes nurses' ethical responsibility to participate in policy work and to advocate for funding for this program, as well as the importance of sharing their perspectives on caring for people who have SCD with legislative representatives.