Sickle Cell disease, a group of inherited red blood cell disorders, disproportionately affects African Americans. A wide range of complications can result from these disorders, many of which are made worse by things like poor housing and nutrition, environmental irritants and limited access to recreation and exercise – all of which low-income patients typically experience. Patients may also have diminished capacity to work and require regular, specialized medical care. Hence, poor, Black communities are significantly impacted by this disease and the effect it has on individuals and their families.
The Community Sickle Cell Initiative (CSCI) seeks to ensure that patients with the disease have access to quality, comprehensive and culturally competent care that improves their quality of life. This workgroup focuses on advocacy and policy change, identifying barriers to care and areas for improvement including but not limited to mitigating gaps in the continuity of care, reducing stigma, improving disease-specific knowledge among healthcare providers, improving patient and family literacy about the disease and addressing related socioeconomic factors.