Suggested Citation:
"Appendix H: Health Resources and Services Administration Sickle Cell Disease Programs." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press.
doi: 10.17226/25632.
Sickle Cell Disease Treatment Demonstration Program (SCDTDP): Improve the health outcomes of individuals with sickle cell disease (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.
Sickle Cell Disease Newborn Screening Follow-Up Program: To ensure that individuals diagnosed with SCD through newborn screening receive appropriate follow-up services including counseling, education, access to a medical home, and other support services.
Suggested Citation:
"Appendix H: Health Resources and Services Administration Sickle Cell Disease Programs." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press.
doi: 10.17226/25632.
FIGURE H-1 HRSA Sickle Cell Treatment Demonstration Program and Sickle Cell Disease Newborn Screening Follow-Up Program. NOTE: CBO = community-based organization; SCDNBSP = Sickle Cell Disease Newborn Screening Follow-Up Program; SCDTDP = Sickle Cell Disease Treatment Demonstration Program. SOURCE: PowerPoint presentation provided via email communication to National Academies staff by Edward Ivy, Medical Officer, Maternal and Child Health Bureau, Health Resources and Services Administration.
Suggested Citation:
"Appendix H: Health Resources and Services Administration Sickle Cell Disease Programs." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press.
doi: 10.17226/25632.
Sickle Cell Disease Treatment Demonstration Program
Sickle Cell Disease Newborn Screening Follow-Up Program
Program Objectives
Support the implementation of five regional networks of care for sickle cell disease (SCD) throughout the United States
Use Project Extension for Community Healthcare Outcomes (ECHO), a telementoring program that allows specialists to network and educate other providers, to support strategies to increase the number of providers knowledgeable about evidence-based sickle cell care
Increase the number of individuals with SCD receiving hydroxyurea by 10 percent
Optional additional activities include efforts to:
Provide direct support and financial assistance to a minimum of 15 community-based organizations (CBOs) in 15 states
Train 150 community health workers
Increase partnerships: Informal and formal, CBOs, hospitals, health systems, state public health departments, primary care providers, federally qualified health centers
Serve 15,000 individuals with SCD through:
Outreach
Education
Linkage to medical home
Referrals to support services
Care in a patient-centered medical home
Scope
Progress in State Action Plan Development, Project ECHO, and Data Collection
43 states involved with regions (has yet to reach all 50 states)
Building state networks
Conducting outreach to providers
Five regions have implemented at least one Project ECHO program; eight Project ECHO programs total
Data collection through a Provider Survey and Quality Improvement data
Technical Assistance:
Community of Practice—Convene CBOs by region to share successes, challenges, and best practices
Leadership Academy—Bi-weekly skill-building webinars. Topics include sustainability planning, transition, care coordination, developing patient advocacy, leveraging partnerships, and capacity building
Partnerships—Identifying national-level strategies that support local CBOs to develop partnerships/memoranda of understanding
Community Health Workers—Sustainability, recruitment, hiring, retention, ongoing skill building. The Sickle Cell Disease Association of America (SCDAA) will also disseminate best practices and lessons learned
Suggested Citation:
"Appendix H: Health Resources and Services Administration Sickle Cell Disease Programs." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press.
doi: 10.17226/25632.
TABLE H-1 Continued
Sickle Cell Disease Treatment Demonstration Program
Sickle Cell Disease Newborn Screening Follow-Up Program
Community Health Worker Training
Virtual Training—SCDAA developed curriculum
Field Placement—40 hour requirement
Peer-to-Peer Mentoring (InquisitHealth)
Goal is to support individuals and families to access information, resources, and medical care by providing peer-to-peer psychosocial support
Web-based platform that links peer mentors to individuals and family members
SCDAA and InquisitHealth developed a sickle cell-specific algorithm that ensures quality coaching and support by utilizing guided conversation guides
Tracks utilization and contacts
Transition Readiness Quality Improvement Project
Five CBOs will work with more than 200 young adults aged 16–25
SCDAA will disseminate best practices for improving transition readiness and disseminate to the other 12 CBOs
Suggested Citation:
"Appendix H: Health Resources and Services Administration Sickle Cell Disease Programs." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press.
doi: 10.17226/25632.
TABLE H-1 Continued
Sickle Cell Disease Treatment Demonstration Program
Sickle Cell Disease Newborn Screening Follow-Up Program
Results
Access to care:
Nearly 11,000 patients with SCD received care through the Sickle Cell Disease Treatment Demonstration Regional Collaborative Program (SCDTDRCP) regional networks, reflecting an increase of more than 3,000 patients from baseline
Four states opened clinics in areas of high need. More than 1,000 adults now have access to high-quality care with the newly opened Adult Sickle Cell Clinic at the Martin Luther King, Jr. Outpatient Center in Los Angeles
Suggested Citation:
"Appendix H: Health Resources and Services Administration Sickle Cell Disease Programs." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press.
doi: 10.17226/25632.
Suggested Citation:
"Appendix H: Health Resources and Services Administration Sickle Cell Disease Programs." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press.
doi: 10.17226/25632.
Suggested Citation:
"Appendix H: Health Resources and Services Administration Sickle Cell Disease Programs." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press.
doi: 10.17226/25632.
Suggested Citation:
"Appendix H: Health Resources and Services Administration Sickle Cell Disease Programs." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press.
doi: 10.17226/25632.
Suggested Citation:
"Appendix H: Health Resources and Services Administration Sickle Cell Disease Programs." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press.
doi: 10.17226/25632.
Suggested Citation:
"Appendix H: Health Resources and Services Administration Sickle Cell Disease Programs." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press.
doi: 10.17226/25632.
Suggested Citation:
"Appendix H: Health Resources and Services Administration Sickle Cell Disease Programs." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press.
doi: 10.17226/25632.
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