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Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action (2020)

Chapter: Appendix H: Health Resources and Services Administration Sickle Cell Disease Programs

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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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Appendix H

Health Resources and Services Administration Sickle Cell Disease Programs

OVERVIEW OF SICKLE CELL DISEASE PROGRAMS

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.
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Image
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.
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TABLE H-1 Programs at a Glance

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:
    1. Increase recommended pneumococcal vaccinations
    2. Increase documented transcranial Doppler ultrasound
    3. Increase transition plan to an adult provider
  • 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:
    1. Outreach
    2. Education
    3. Linkage to medical home
    4. Referrals to support services
    5. 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:
    1. Community of Practice—Convene CBOs by region to share successes, challenges, and best practices
    2. Leadership Academy—Bi-weekly skill-building webinars. Topics include sustainability planning, transition, care coordination, developing patient advocacy, leveraging partnerships, and capacity building
    3. Partnerships—Identifying national-level strategies that support local CBOs to develop partnerships/memoranda of understanding
    4. 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

continued

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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TABLE H-1 Continued

Sickle Cell Disease Treatment Demonstration Program Sickle Cell Disease Newborn Screening Follow-Up Program
  • Community Health Worker Training
    1. Virtual Training—SCDAA developed curriculum
    2. Field Placement—40 hour requirement
  • Peer-to-Peer Mentoring (InquisitHealth)
    1. Goal is to support individuals and families to access information, resources, and medical care by providing peer-to-peer psychosocial support
    2. Web-based platform that links peer mentors to individuals and family members
    3. SCDAA and InquisitHealth developed a sickle cell-specific algorithm that ensures quality coaching and support by utilizing guided conversation guides
    4. Tracks utilization and contacts
  • Transition Readiness Quality Improvement Project
    1. Five CBOs will work with more than 200 young adults aged 16–25
    2. 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
Hydroxyurea use:
  • Heartland pediatric patients: 12–20 percent; adult patients: 14.3–17.3 percent
  • Midwest all patients: 48–69 percent
  • Northeast pediatric patients: 23–34 percent; adult patients: 16–18 percent
  • Pacific all patients: 29–42 percent
Knowledgeable providers:
  • Telementoring and telehealth initiatives increased provider knowledge across the country
  • Nearly 100 Project ECHO clinics were held, expanding opportunities for provider education for more than 200 providers

SOURCES: 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. Also see https://www.nichq.org/sites/default/files/inline-files/NICHQ-SCDTDP-ImpactStatement_0.pdf (accessed December 17, 2019).

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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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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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.
×
Page 454
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.
×
Page 455
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.
×
Page 456
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.
×
Page 457
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.
×
Page 458
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Sickle cell disease (SCD) is a genetic condition that affects approximately 100,000 people in the United States and millions more globally. Individuals with SCD endure the psychological and physiological toll of repetitive pain as well as side effects from the pain treatments they undergo. Some adults with SCD report reluctance to use health care services, unless as a last resort, due to the racism and discrimination they face in the health care system. Additionally, many aspects of SCD are inadequately studied, understood, and addressed.

Addressing Sickle Cell Disease examines the epidemiology, health outcomes, genetic implications, and societal factors associated with SCD and sickle cell trait (SCT). This report explores the current guidelines and best practices for the care of patients with SCD and recommends priorities for programs, policies, and research. It also discusses limitations and opportunities for developing national SCD patient registries and surveillance systems, barriers in the healthcare sector associated with SCD and SCT, and the role of patient advocacy and community engagement groups.

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