SICKLE CELL DISEASE TREATMENT DEMONSTRATION REGIONAL COLLABORATIVES PROGRAM 2021 CONGRESSIONAL REPORT
Executive Summary
Ensuring that the approximately 100,000 children and adults living with sickle cell disease (SCD) and their families are offered and obtain current lifesaving treatments — and that they have equitable access to quality care and successful new treatments and cures for this condition — stands as a national priority.
Sickle Cell Disease Treatment Demonstration Regional Collaboratives Program In 2017, through a Health Resources and Services Administration (HRSA), Department of Health and Human Services Funding Opportunity Announcement, five Regional Coordinating Centers (RCCs) were chosen to establish a Sickle Cell Disease Treatment Demonstration Regional Collaboratives Program (SCDTDRCP). This program was originally authorized by the American Jobs Creation Act of 2004, Title VII, § 712(c), P.L. 108-357, Title VII, § 712(c)(42 U.S.C. 300b) (2004) and was reauthorized by the Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2018, 42 U.S.C. § 300b-5 (2018). The Program was administered and funded by the HRSA Maternal and Child Health Bureau (MCHB), Division for Children with Special Health Care Needs. Built from the progress of the prior SCD programs reported to Congress in 2014 and 2017, the purpose of the funding was to support RCCs in establishing regional networks and enable them to provide leadership and support for regional and state activities that would develop and establish system-wide mechanisms to improve the prevention and treatment of SCD and collect select data in these three healthcare domains: 1. Increase the number of providers treating individuals with SCD using the National Heart, Lung and Blood Institute (NHLBI) Evidence-Based Management of Sickle Cell Disease Expert Panel Report (National Heart Lung and Blood Institute, 2014)
NOTE: Throughout this report, the Sickle Cell Disease Treatment Demonstration Regional Collaboratives Program is referred to as “the Program” or “the SCDTDRCP.” 2. Use telementoring, telemedicine, and other provider strategies to increase the number of providers administering evidence-based SCD care 3. Develop and implement strategies to improve access to quality care with emphasis on individual and family engagement/partnership, adolescent transitions to adult life, and care in a medical home The goals were to improve health outcomes in individuals with SCD, reduce morbidity and mortality caused by SCD, reduce the number of individuals with SCD receiving care only in emergency departments, and improve the quality of coordinated and comprehensive services to individuals with SCD and their families.
Overview of Sickle Cell Disease Approximately 100,000 Americans live with SCD, which refers to a group of inherited red blood cell disorders whereby red blood cells become hard and sticky, die early, and tend to impede blood flow leading to serious health problems. While this disease affects many races and ethnicities, in the U.S. it disproportionately affects Black, African-American, and Hispanic-American populations (Centers for Disease Control and Prevention, 2020). One of every 400-500 Black and about one out of every 16,300 Hispanic-American babies are born with SCD each year (Benson & Therrell Jr, 2010; Centers for Disease Control and Prevention, 2020; Feuchtbaum et al., 2012; Kato et al., 2018) making it one of the most common serious genetic disorders in the U.S. (Neumayr et al., 2019; Rees et al., 2010). Although historically SCD was considered a pediatric condition because children with SCD did not survive into adulthood, with medical advances and improvements in care most people living with SCD now survive into adulthood. In the mid-1970s, people with SCD lived to a median age of 14. By 2017, the median age had increased to 43 years. This represents a little more than half the national average lifespan of 81 years for women and 77 for men. Despite these gains, people living with SCD face a lifelong battle with pain, infection, and other chronic, serious health problems that can affect every organ in the body.
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