Hemoglobinopathies National Coordinating Center (HNCC)
Sickle cell disease (SCD) is an inherited blood condition that affects an estimated 100,000 Americans. SCD is particularly common among those whose ancestors came from sub-Saharan Africa, Spanish-speaking regions in the Western Hemisphere (South America, the Caribbean, and Central America), Saudi Arabia, India, and Mediterranean countries (CDC, 2022).
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 encounter barriers to accessing evidence-based care, new medications and therapies, education, care coordination, and other supports.
NICHQ, with partner organization Abt Associates, is supporting a Hemoglobinopathies National Coordinating Center (HNCC) to help SCD treatment demonstration program grantees — including community and federally qualified health centers—address structural and systemic barriers in their regions and implement evidence-based SCD care. The NICHQ and Abt Associates team are collaborating with organizations such as the Sickle Cell Disease Association of America to improve the quality of–and access to–care for SCD.
September 2021 to September 2026
- Who: NICHQ and Abt Associates
- Funder: Health Resources and Services Administration’s (HRSA) Maternal and Child Health Bureau (MCHB)
- Our Role: Building off our work in sickle cell disease collaboratives over the past decade, NICHQ will be providing technical assistance to five sickle cell disease demonstration programs that cover 53 states and U.S. territories, twenty-five Newborn Screening Follow Up Programs, and one community health center. NICHQ is taking a systemic approach to ensure providers have access to information about the disease, including up-to-date information about evidence-based treatments and strategies to support efforts to provide high-quality, comprehensive, coordinated care through the lifespan.
- Other Information: NICHQ served as the National Coordinating Center for HRSA’s Sickle Cell Disease Treatment Demonstration Regional Collaboratives Program from 2017-2021 and brings this expertise to this partnership. More than 100 health systems, clinics, and community-based organizations participated in the previous iteration of the collaborative, leading to more than 25,000 people with SCD being cared for by engaged healthcare providers.
A Physician’s Reflections on Racism and Treating Sickle Cell Disease
For NICHQ’s current and future work, I am motivated by wanting to be a better version of myself in service of others. Wondering whether my own implicit biases impacted my care of patients and families, I realize that I cannot redo past ER experiences. If I could go back, I would slow down to acknowledge and try to set my biases aside and approach patients from a personally more informed perspective. But now, I can use my past, present, and future experiences to ensure NICHQ is amplifying important lessons from this multi-year effort reflecting the compassion, care, and commitment of hundreds of dedicated professionals in pursuit of equitable, accessible, and quality healthcare for people living with sickle cell disease.
Resource for Improving Relationships Between Providers and People Living with Sickle Cell Disease
Too often, people living with Sickle Cell Disease (SCD) and their families and caregivers miss critical healthcare appointments for a variety of reasons. These important resources and tools can be used to guide efforts to improve relationships between providers and people living with SCD.
Sickle Cell Disease Treatment Demonstration Program Compendium of Tools and Materials
This compendium identifies promising practices and strategies used by participants in the Sickle Cell Disease Treatment Demonstration Program (SCDTDP) to implement changes in their health systems related to improving access to care, increasing use of hydroxyurea and provider education.