Endnotes

1 “NC DPH: N.C. Sickle Cell Syndrome Program,” accessed December 7, 2021, https://www.ncsicklecellprogram.org/. 2 “Value-Based Payment for Maternity Care in Medicaid: Findings from Five States” (MACPAC, September 2021), https:// www.macpac.gov/wp-content/uploads/2021/09/Value-Based-Payment-for-Maternity-Care-in-Medicaid-Findingsfrom-Five-States.pdf. 3 “Proposed Program Design,” NCDHHS, n.d., https://www.ncdhhs.gov/proposed-program-design. 4 “Introduction to COVID-19 Racial and Ethnic Health Disparities,” CDC, n.d., https://www.cdc.gov/coronavirus/2019ncov/community/health-equity/racial-ethnic-disparities/index.html. 5 “North Carolina’s Transformation to Medicaid Managed Care,” NC Medicaid, n.d., https://medicaid.ncdhhs.gov/ transformation. 6 “QuickFacts: North Carolina,” United States Census Bureau, n.d., https://www.census.gov/quickfacts/NC. 7 “QuickFacts: North Carolina.”

8 “QuickFacts: North Carolina.”

9 “About Sickle Cell Disease,” Genome.gov, accessed December 5, 2021, https://www.genome.gov/Genetic-Disorders/

Sickle-Cell-Disease. 10 Sophie Lanzkron, C. Patrick Carroll, and Carlton Haywood, “The Burden of Emergency Department Use for Sickle Cell Disease: An Analysis of the National Emergency Department Sample Database,” American Journal of Hematology 85, no. 10 (2010): 797–99. 11 “About Sickle Cell Disease.” 12 Community Care of North Carolina, “Sickle Cell Program,” Community Care of North Carolina, 2021, https://www. communitycarenc.org/what-we-do/care-management/population-health-outreach-and-care-coordination/sickle-cellprogram. 13 S. Wilson-Frederick et al., “Medicaid and CHIP Sickle Cell Disease Report, T-MSIS Analytic Files (TAF) 2017,” Center for Medicaid and CHIP Services, Dvivision of Quality and Health Outcomes, Centers for Medicare & Medicaid Services, January 2021, https://www.medicaid.gov/medicaid/quality-of-care/downloads/scd-rpt-jan-2021.pdf. 14 CDC, “Incidence of Sickle Cell Trait in the US | CDC,” Centers for Disease Control and Prevention, May 4, 2018, https://www.cdc.gov/ncbddd/sicklecell/features/keyfinding-trait.html. 15 “About Sickle Cell Disease,” National Human Genome Research Institute, n.d., https://www.genome.gov/GeneticDisorders/Sickle-Cell-Disease.

16 “About Sickle Cell Disease.” 17 Courtney Fitzhugh et al., “Morbidity and Associated Sudden Death in Sickle Cell Disease,” Blood 106, no. 11 (2005): 2348. 18 Bianca Nogrady, “Why Severe Sickle-Cell Pain Has Been Neglected,” Nature 596, no. 7873 (2021): S10–12; “About Sickle Cell Disease”; Amanda Friend and Daniel Girzadas, “Acute Chest Syndrome,” in StatPearls (Treasure Island (FL): StatPearls Publishing, 2021). 19 “Longevity for Those with Sickle Cell Disease Linked to Care Maintenance, Family Involvement,” American Society of Hematology, accessed December 5, 2021, https://www.hematology.org:443/newsroom/press-releases/2016/rarepatients-with-sickle-cell-disease-live-nearly-twice-as-long-as-average. 20 H. Joanna Jiang, Marguerite L. Barrett, and Minya Sheng, “Characteristics of Hospital Stays for Nonelderly Medicaid Super-Utilizers, 2012: Statistical Brief #184,” in Healthcare Cost and Utilization Project (HCUP) Statistical Briefs (Rockville (MD): Agency for Healthcare Research and Quality (US), 2006), http://www.ncbi.nlm.nih.gov/books/ NBK269028/.

21 Deepika S. Darbari and Amanda M. Brandow, “Pain-Measurement Tools in Sickle Cell Disease: Where Are We Now?,” Hematology 2017, no. 1 (2017): 534–41. 22 Santosh L. Saraf et al., “Improved Health Care Utilization and Costs in Transplanted versus Non-Transplanted Adults with Sickle Cell Disease,” PLOS ONE 15, no. 2 (2020): e0229710. 23 NCDHHS, “North Carolina Sickle Cell Syndrome Program,” NCDHHS, September 18, 2020, https://www. ncsicklecellprogram.org/.

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Outcomes.” 425 North Carolina Department of Health and Human Services, “North Carolina’s Medicaid Quality Measurement Technical Specifications Manual for Standard Plans and Behavioral Health Intellectual/Developmental Disability

Tailored Plans.” 426 Taylor and Gamble, “Suffering in Silence.” 102

427 JudyAnn Bigby et al., “Recommendations for Maternal Health and Infant Health Quality Improvement in Medicaid and the Children’s Health Insurance Program” (Centers for Medicare & Medicaid Services - Medicaid & CHIP Maternal & Infant Health Quality Improvement, December 18, 2020). 428 North Carolina Department of Health and Human Services, “North Carolina’s Medicaid Quality Measurement Technical Specifications Manual for Standard Plans and Behavioral Health Intellectual/Developmental Disability

Tailored Plans.” 429 The Bureau of Health Services Financing, “Louisiana’s Medicaid Managed Care Quality Strategy,” May 2021, https:// ldh.la.gov/assets/docs/MQI/MQIStrategy.pdf. 430 Missouri Department of Social Services, “Managed Care Performance Withhold Technical Specifications,” 2019, https://dss.mo.gov/business-processes/managed-care-2017/bidder-vendor-documents/managed-care-pwt-spec19. pdf; Ohio Department of Medicaid, “The Ohio Department of Medicaid Managed Care Quality Strategy,” 2018, https://medicaid.ohio.gov/Portals/0/Medicaid%20101/QualityStrategy/Measures/MCQ-Strategy2018.pdf. 431 “Trends in Maternal Mortality Statistics” (North Carolina Department of Health and Human Services, November 14, 2019), https://schs.dph.ncdhhs.gov/data/maternal/. 432 Kimberly Fryer et al., “Identifying Barriers and Facilitators to Prenatal Care for Spanish-Speaking Women,” North Carolina Medical Journal 82, no. 1 (2021): 7–13. 433 Fryer et al. 434 Ian Hill et al., “Medicaid Outreach and Enrollment for Pregnant Women: What Is the State of the Art?” (Urban Institute, March 2009), https://www.urban.org/sites/default/files/publication/30386/411898-Medicaid-Outreach-andEnrollment-for-Pregnant-Women-What-Is-the-State-of-the-Art-.PDF. 435 “State Plan Amendment (SPA) #: 13-029” (Centers for Medicare & Medicaid Services, January 14, 2015), https:// www.medicaid.gov/sites/default/files/State-resource-center/Medicaid-State-Plan-Amendments/Downloads/CA/ CA-13-029.pdf; “State Plan Amendment (SPA)#: NY-13-64” (Centers for Medicare & Medicaid Services, February 5, 2014), https://www.medicaid.gov/sites/default/files/State-resource-center/Medicaid-State-Plan-Amendments/ Downloads/NY/NY-13-64.pdf. 436 “Trends in Maternal Mortality Statistics.”