Rockville, Md. – Sickle Cell Disease (SCD) is an inherited blood condition affecting approximately 100,000 individuals in the United States. A disproportionate number of people living with sickle cell disease are Black and Hispanic individuals. Furthermore, SCD also affects a growing number of individuals of African, Caribbean, Central/South American, East Indian, Middle Eastern, Mediterranean and Southeast Asian ancestry. While newborns are now screened for SCD in every state, there are still barriers to accessing comprehensive, high-quality care throughout a person’s lifespan. Some of these barriers include a lack of access to evidence-based care, a lack of access to disease modifying medications and therapies, inadequate workforce training and education, and the need for a high degree of multi-disciplinary care coordination from infancy to adulthood.
In support of the Health Resources and Services Administration’s (HRSA) Maternal and Child Health Bureau (MCHB), Abt Associates has partnered with the National Institute for Children’s Health Quality (NICHQ) to strengthen the SCD system of care by helping train community health workers, fostering partnerships between clinicians, community-based organizations and other stakeholders throughout the U.S. Under a 5-year $9.6 million contract, Abt will serve as MCHB’s Hemoglobinopathies National Coordinating Center (HNCC) to help SCD Treatment Demonstration Program grantees, SCD Newborn Screening Follow-up Program grantees, and federally qualified community health centers address structural and systemic barriers in their regions, implement evidence-based SCD care, and collaborate with newborn screening programs so that every infant identified with SCD gets early and prompt care.
In its most recent round of funding to address SCD, HRSA has named the following Treatment Demonstration Program grantees: Johns Hopkins University, Cincinnati Children’s Hospital Medical Center, Center for the Comprehensive Care and Diagnosis of Inherited Blood Disorders, Washington University in St. Louis, University of Alabama at Birmingham.
Additionally, HRSA has named the following entities as SCD Newborn Screening Follow-Up grantees: Sickle Cell Disease Association of America, Philadelphia-Delaware Valley Chapter, Children’s Sickle Cell Foundation, Inc., the Sickle Cell Association of New Jersey, Inc. Sick Cell/Thalassemia Patient Networks, Inc. Sickle Cell Disease Association of Illinois, Sickle Cell Disease Association of America Michigan Chapter, Ohio Sickle Cell and Health Association, Inc., Martin Center, Inc., Cayenne Wellness Center and Children’s Foundation Inc., Hemostasis and Thrombosis Center of Nevada, Sickle Cell Anemia Foundation of Oregon, Inc. Sickle Cell Foundation of Arizona, Inc., Sickle Cell Association, Baton Rouge Sickle Cell Anemia Foundation, Inc., Sickle Cell Texas Marc Thomas Foundation, Supporters of Families with Sickle Cell Disease, Inc. Piedmont Health Services and Sickle Cell Agency, University of Miami, Sick Cell Foundation of Georgia, Inc., James R. Clark Memorial Sickle Cell Foundation.
The Abt team will collaborate with HRSA, NICHQ, and other organizations such as the Sickle Cell Disease Association of America to provide technical assistance to the SCD grantees so they can improve the quality of–and access to–SCD care.
“This is a great opportunity to make a difference by combining Abt’s expertise in health, technical assistance, and equity with NICHQ’s mastery of SCD care to transform our approach to SCD,” says Abt Principal Associate Ann Loeffler.
About Abt Associates
Abt Associates is a global consulting and research firm that uses data and bold thinking to improve the quality of people’s lives. From combatting infectious disease and conducting rigorous program evaluations, to ensuring safe drinking water and promoting access to affordable housing—and more—we partner with clients and communities to tackle their most complex challenges. https://www.abtassociates.com