Community Sickle Cell Initiative

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.

Washington University
Heartland Sickle Cell Disease Network
Sickle Cell Association

Standard Term(s)

1. Recipients must comply with all terms and conditions outlined in their grant award, including grant policy terms and conditions outlined in applicable Department of Health and Human Services (HHS) Grants Policy Statements, and requirements imposed by program statutes and regulations and HHS grant administration regulations, as applicable; as well as any requirements or limitations in any applicable appropriation acts.
2. All discretionary awards issued by HRSA on or after October 1, 2006, are subject to the HHS Grants Policy Statement (HHS GPS) unless otherwise noted in the Notice of Award (NoA). Parts I through III of the HHS GPS are currently available at http://www.hrsa.gov/grants/hhsgrantspolicy.pdf. Please note that the Terms and Conditions explicitly noted in the award and the HHS GPS are in effect.
3. This project is/was supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number and title for grant amount (specify grant number, title, total award amount and percentage financed with nongovernmental sources). This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS, or the U.S. Government.

Currently, the CSCI membership focuses efforts in 3 areas with sub-groups:

• Advocacy and Public Policy
  • This committee seeks to promote policy change efforts at the local, state and federal level that positively impact the care, coverage and livelihood of individuals living with sickle cell. Efforts include hosting an annual Sickle Cell Advocacy Day in the spring at the Missouri State Capitol, where Individuals living with sickle cell, family members, care givers and advocates meet with legislators and provide testimony at a Senate hearing advocating for sickle cell.
  • POLICY IMPACTS:
    • Successfully advocated and passed opioid limitation carve out for individuals living with sickle cell (Spring 2019)
    • Community Sickle Cell Initiative advocated for a new order set in a local hospital Emergency Department, allowing triage nurses to being pain management (Spring 2019)
  • Transitional Age Youth Pilot
    • A pilot focusing on working with 18-26-year olds living with sickle cell connect and/or remain engaged in care. The pilot focuses on identifying and addressing barriers for individuals struggling or not yet engaged in care for sickle cell – especially as they transition from pediatric to adult healthcare services.
  • Developing standards of care and transitions of care
    • This committee works on initiatives to improve access to care, awareness of services provided and quality of care provided for individuals living with sickle cell disease. This includes supporting efforts to both broaden and standardize care for patients with sickle cell seeking acute care and outpatient care.

Historically, the CSCI formed around the following Charge:

Charge:

1. Delineate how healthcare is currently delivered to people with sickle cell in the St. Louis Region over the patients’ lifespan
2. Review standards of care and guidelines for taking care of people with sickle cell disease
3. Identify current barriers to care and areas for improvement, including but not limited to
   1. Gaps in continuity of care
   2. Stigma
   3. Limitations in disease-specific knowledge among health responders
   4. Patient/family health literacy about sickle cell and accessing care
   5. Socioeconomic factors
4. Develop and triage recommendations to improve the continuum of care for people with sickle cell
5. Seek opportunities for this work to benefit additional patient groups
6. Serve as a model for managing other chronic diseases

Work with parallel initiatives in the community to find synergistic opportunities to improve provisions of care for individuals with and without sickle cell disease.