Providing Technical Assistance to HRSA’s Sickle Cell Disease Programs

Highlights

Sickle cell disease (SCD) is an inherited blood condition with Black and Latine people bearing a greater burden.
Abt is helping HRSA awardees to collaborate and strengthen the SCD continuum of care from newborn screening to sickle cell centers.
Through the Hemoglobinopathies National Coordinating Center (HNCC), the Abt team will help address systemic barriers to care.

The Challenge

Sickle cell disease (SCD) is an inherited blood condition that affects an estimated 100,000 individuals in the United States, a disproportionate number of whom are Black and Hispanic Americans. While newborn screening for SCD occurs in every state, there are still barriers to accessing comprehensive, high-quality care throughout a person’s lifespan, and many individuals with SCD—notably people of color--encounter barriers to accessing evidence-based care, new medications and therapies, and other supports. The Health Resources and Services Administration’s (HRSA) Maternal and Child Health Bureau (MCHB), contracted with Abt Global and partner the National Institute for Children’s Health Quality (NICHQ) to strengthen the SCD system of care and support by managing its Hemoglobinopathies National Coordinating Center (HNCC). The HNCC’s objectives are to build a foundation based on local and regional partnerships through regional action plans—and focus on the implementation of successful strategies such as assembling comprehensive SCD care teams, supporting access to disease modifying therapies, and hub-and-spoke models in which specialty sickle cell centers provide support in the co-management of care with more local healthcare providers for SCD patients.

The Approach

Through the HNCC, Abt and NICHQ provide technical assistance (TA) and share learning opportunities to 30 awardees in HRSA’s MCHB SCD programs, which include clinicians in treatment demonstration programs and newborn screening follow-up programs, and with community-based organizations to strengthen regional partnerships and the SCD system of care. We foster collaboration between clinicians, community organizations, and other partners to improve the ability to deliver coordinated, comprehensive care across the lifespan for all individuals with SCD. Our TA offerings range from providing specialized training in SCD for community health workers, to supporting regional action plan development, to monitoring data collection development, to leading quality improvement efforts.

The Results

The team enhances and improves the coordination of SCD systems of care in five regions—Northeast, Southeast, Midwest, Heartland/Southwest, and Pacific—and improved outcomes for individuals living with SCD and their families.

HRSA SCD Programs Awardee Map
HRSA SCD Programs One pager

The HNCC developed “A Guide to College Transition for Sickle Cell Warriors” in collaboration with people living with SCD, medical providers, and other invested parties to support young adults with SCD as they prepare for and begin college. This guide is designed for young people living with SCD and their families and covers transitioning medical care, navigating college accommodations, and social and emotional well-being.