Abt, NICHQ Partner with HRSA to Ensure Equitable Improvements to Sickle Cell Care Under $9.6M Contract
November 4, 2021
Sickle Cell Disease Treatment Demonstration Regional Collaboratives Program
Disseminating Results: Missed Sickle Cell Disease Clinic Appointments and the Health Belief Model
HOW SICKLE CELL DISEASE AFFECTS CHILDREN’S HEALTH
Approximately 100,000 people in the U.S. are living with sickle cell disease, a serious, debilitating, life-shortening, and often fatal condition, which disproportionately affects Black, African-American, and Hispanic-American populations, according to the CDC. In the U.S., SCD is most common among African Americans. However, other racial and ethnic groups are affected, including Latinos and people of Middle Eastern, Indian, Asian, and Mediterranean backgrounds. Sub-Saharan Africa has the greatest burden of disease.
An estimated 2,000 children are born each year in the U.S. with sickle cell disease. Despite the study of biological pathways for sickle cell disease for more than 100 years and the existence of innovative and effective treatments for this condition, there are still major gaps in accessible, quality care. Additionally, state registries of children born with SCD and adults living with SCD are too few, resulting in inadequate data on the number of people who need care.
The increase in life expectancy for people living with sickle cell disease rose to 43 years in 2017, from 29 years in 1979 and 14 years in the mid-1970s. Now, based on life expectancy modeling, babies born with SCD will live an average of more than 50 years. The interventions and treatments promoted by the Sickle Cell Disease Treatment Demonstration Regional Collaboratives Program have improved the lives of tens of thousands of people, mitigating some of the harsh effects of the condition, and increasing both length and quality of life.
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.
New Initiative Spreads a Potential Innovation for Improving Sickle Cell Disease Outcomes
NICHQ's new initiative, funded by the Patient-Centered Outcomes Research Institute (PCORI), aims to disseminate research findings that can help more children and adults with sickle cell disease receive needed clinical care.
NICHQ to Lead National Sickle Cell Disease Collaborative
The Health Resources and Service Administration has selected NICHQ as the National Coordinating Center for the Sickle Cell Disease Treatment Demonstration Regional Collaborative Program. In this role, NICHQ will leverage its experience with chronic disease management and data-driven quality improvement methodology to support and coordinate the activities of five regional coordinating centers (RCCs) seeking to improve sickle cell disease care.
'How To' Guide Available to Help Sickle Cell Disease Patients in the Emergency Room
NICHQ today announces “Sickle Cell Pain in the Emergency Department: A Guide to Improving Care,” a step-by-step manual for anyone on the front lines of acute care, from emergency room (ER) doctors and nurses, to hematology specialists. The guide, launched on World Sickle Cell Day, is the result of a five-year collaboration between 15 multidisciplinary healthcare provider teams nationwide.