Appendix: Implementation Considerations

The following visualization depicts how our recommendations vary based on their estimated costs (time, information technology, and personnel), equity implications, and stakeholder support (see the legend below for specifics). These determinations were made based on background research and stakeholder interviews. The purpose of this matrix is to summarize the high-level implications of our recommendations, and ultimately help NC DHHS prioritize the recommendations.

Matrix Legend

Short/Medium/Long Term:

ST

NC DHHS can implement quickly/without additional funds

MT NC DHHS can implement over a few years/with additional funds

LT NC DHHS can implement over a few years/with new legal authority

Requires Legal Authority:

No Does not require legislation

Yes Does require legislation

Stakeholder Support:

Almost universal agreement among stakeholders that this was a priority

Some agreement among stakeholders that this was a priority

No agreement among stakeholders that this was a priority

Equity Implications:

Addresses equity

Is neutral on equity

Works against equity

Initial Costs to the State:

Has small cost (less than $100,000)

Has a moderate cost (approximately $100,000 - $500,000)

Has a significant cost

Administrative Capacity:

Requires only a few people

Requires a moderate number of people and/or IT resources

Requires a significant number of people and/or IT resources

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/.

24 Eugene Declercq and Laurie Zephyrin, “Severe Maternal Morbidity in the United States: A Primer,” The Commonwealth Fund, Data Brief, October 28, 2021.

25 Declercq and Zephyrin.

26 Maria J. Small et al., “Addressing Maternal Deaths in North Carolina: Striving to Reach Zero,” North Carolina Medical Journal 81, no. 1 (2020): 55–62.

27 Small et al.

28 Declercq and Zephyrin, “Severe Maternal Morbidity in the United States.”

29 Small et al., “Addressing Maternal Deaths in North Carolina.”

30 Eugene Declercq and Laurie Zephyrin, “Maternal Mortality in the United States: A Primer,” The Commonwealth Fund, Data Brief, December 2020.

31 “Report from Nine Maternal Mortality Review Committees” (Centers for Disease Control and Prevention, 2019).

32 Cecilia Nowell, “Homicide Is a Leading Cause of Death in Pregnant People, a New Study Finds. Black Women Are at Greatest Risk.,” The Lily, December 6, 2021, https://www.thelily.com/homicide-is-a-leading-cause-of-death-inpregnant-people-a-new-study-finds-black-women-are-at-greatest-risk/.

33 “Temporary Clinical Policy Modifications: Payment for Healthy Opportunities Screening and Referral,” NC Medicaid, February 1, 2021, https://medicaid.ncdhhs.gov/blog/2021/02/01/temporary-clinical-policy-modifications-paymenthealthy-opportunities-screening-and.

34 Rhitu Chatterjee, “Premature Birth Rates Rise Again, But A Few States Are Turning Things Around,” NPR, November 1, 2018, https://www.npr.org/sections/health-shots/2018/11/01/662683176/premature-birth-rates-rise-again-but-afew-states-are-turning-things-around.

35 Elizabeth A. Howell, “Reducing Disparities in Severe Maternal Morbidity and Mortality,” Clinical Obstetrics & Gynecology 61, no. 2 (June 2018): 387–99.

36 Lauren Jansen et al., “First Do No Harm: Interventions During Childbirth,” The Journal of Perinatal Education 22, no. 2 (2013): 83–92.

37 Gray Babbs, Lois McCloskey, and Sarah H. Gordon, “Expanding Postpartum Medicaid Benefits to Combat Maternal Mortality and Morbidity,” Health Affairs Blog, January 14, 2021.

38 Declercq and Zephyrin, “Maternal Mortality in the United States.”

39 Roy Ahn et al., “Initiatives to Reduce Maternal Mortality and Severe Maternal Morbidity in the United States,” Annals of Internal Medicine 173, no. 11_Supplement (2020): S3–10.

40 Annie Waldman, “How Hospitals Are Failing Black Mothers,” ProPublica, December 27, 2017, https://www.propublica. org/article/how-hospitals-are-failing-black-mothers.

41 Elizabeth A. Howell et al., “Race and Ethnicity, Medical Insurance, and Within-Hospital Severe Maternal Morbidity Disparities,” Obstetrics and Gynecology 135, no. 2 (2020): 285–93.

42 Small et al., “Addressing Maternal Deaths in North Carolina.”

43 “Black Women’s Maternal Health: A Multifaceted Approach to Addressing Persistent and Dire Health Disparities,” Issue Brief, Black Maternal Health (National Partnership for Women & Families, n.d.), http://www.nationalpartnership org/our-work/health/reports/black-womens-maternal-health.html.

44 Declercq and Zephyrin, “Severe Maternal Morbidity in the United States.”

45 David R. Williams, Jourdyn A. Lawrence, and Brigette A. Davis, “Racism and Health: Evidence and Needed Research,” Annual Review of Public Health 40, no. 1 (2019): 105–25; Yin Paradies et al., “Racism as a Determinant of Health: A Systematic Review and Meta-Analysis,” PLoS ONE 10, no. 9 (2015): e0138511, https://doi.org/10.1371/ journal.pone.0138511.

46 Kelly M. Hoffman et al., “Racial Bias in Pain Assessment and Treatment Recommendations, and False Beliefs About Biological Differences Between Blacks and Whites,” Proceedings of the National Academy of Sciences 113, no. 16 (2016): 4296–4301.

47 Keith Wailoo, Dying in the City of the Blues: Sickle Cell Anemia and the Politics of Race and Health (University of North Carolina Press, 2001).

48 Hoffman et al., “Racial Bias in Pain Assessment and Treatment Recommendations, and False Beliefs About Biological Differences Between Blacks and Whites.”

49 Sophie Trawalter and Kelly M. Hoffman, “Got Pain? Racial Bias in Perceptions of Pain,” Social and Personality Psychology Compass 9, no. 3 (2015): 146–57.

50 Keith Wailoo and Stephen Pemberton, The Troubled Dreams of Genetic Medicine (Johns Hopkins University Press, 2006).

51 Deborah Lubeck et al., “Estimated Life Expectancy and Income of Patients With Sickle Cell Disease Compared With Those Without Sickle Cell Disease,” JAMA Network Open 2, no. 11 (2019): e1915374.

52 Faheem Farooq et al., “Comparison of US Federal and Foundation Funding of Research for Sickle Cell Disease and Cystic Fibrosis and Factors Associated With Research Productivity,” JAMA Network Open 3, no. 3 (2020): e201737

53 Carlton Haywood et al., “A Systematic Review of Barriers and Interventions to Improve Appropriate Use of Therapies for Sickle Cell Disease,” Journal of the National Medical Association 101, no. 10 (October 2009): 1022–33.

54 Wailoo and Pemberton, The Troubled Dreams of Genetic Medicine.

55 Deirdre Cooper Owens and Sharla M. Fett, “Black Maternal and Infant Health: Historical Legacies of Slavery,” American Journal of Public Health 109, no. 10 (2019): 1342–45, https://doi.org/10.2105/AJPH.2019.305243.

56 Owens and Fett.

57 Harriet A. Washington, Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present (Doubleday Books, 2006).

58 Waldman, “How Hospitals Are Failing Black Mothers.”

59 Declercq and Zephyrin, “Maternal Mortality in the United States.”

60 A. T. Geronimus, “The Weathering Hypothesis and the Health of African-American Women and Infants: Evidence and Speculations,” Ethnicity & Disease 2, no. 3 (1992): 207–21.

61 Linda Villarosa, “Why America’s Black Mothers and Babies Are in a Life-or-Death Crisis,” The New York Times, April 11, 2018, https://www.nytimes.com/2018/04/11/magazine/black-mothers-babies-death-maternal-mortality.html.

62 Villarosa.

63 Nada Alayed et al., “Sickle Cell Disease and Pregnancy Outcomes: Population-Based Study on 8.8 Million Births,” Journal of Perinatal Medicine 42, no. 4 (July 2014): 487–92, https://doi.org/10.1515/jpm-2013-0275.

64 Silvia P. Canelón, Samantha Butts, and Mary Regina Boland, “Evaluation of Stillbirth Among Pregnant People With Sickle Cell Trait,” JAMA Network Open 4, no. 11 (November 24, 2021): e2134274, https://doi.org/10.1001/ jamanetworkopen.2021.34274.

65 P. Braveman et al., “What Is Health Equity? A Definition and Discussion Guide,” Robert Wood Johnson Foundation, May 1, 2017, https://www.rwjf.org/en/library/research/2017/05/what-is-health-equity-.html.

66 Sanne Magnan, “Social Determinants of Health 101 for Health Care: Five Plus Five,” National Academy of Medicine Perspectives, 2017, https://doi.org/10.31478/201710c.

67 “Health Equity Payment Initiative | NC Medicaid,” March 19, 2021, https://medicaid.ncdhhs.gov/blog/2021/03/19/ health-equity-payment-initiative.

68 Clarissa Donnelly-DeRoven, “Three Months into Medicaid Transformation, Providers Say the New Administrative Burdens Are Crushing,” North Carolina Health News, October 19, 2021, http://www.northcarolinahealthnews. org/2021/10/19/three-months-into-medicaid-transformation-providers-say-the-new-administrative-burdens-arecrushing/.

69 “Fact Sheet Introduction to Medicaid Transformation: Part 1 - Overview,” NC Medicaid 2021 Provider Playbook (NC Department of Health and Human Services, June 2021).

70 “Beneficiaries,” NC Medicaid, Division of Health Benefits, n.d., https://medicaid.ncdhhs.gov/beneficiaries.

71 Donnelly-DeRoven, “Three Months into Medicaid Transformation, Providers Say the New Administrative Burdens Are Crushing.”

72 “Joint Legislative Oversight Committee on Medicaid and NC Health Choice,” North Carolina General Assembly, n.d., https://www.ncleg.gov/Committees/CommitteeInfo/NonStanding/6660; Anne Blythe et al., “COVID Funds Beef up Health Care Spending in Proposed State Budget, Which Still Lacks Medicaid Expansion,” NC Health News, November 17, 2021, https://www.northcarolinahealthnews.org/2021/11/17/covid-funds-beef-up-health-carespending-in-proposed-state-budget-still-lacks-medicaid-expansion/.

73 Solomon, Judith, and Tara Straw. 2021. “Build Back Better Increases Health Coverage and Makes It More Affordable.” Center on Budget and Policy Priorities. https://www.cbpp.org/research/health/build-back-betterincreases-health-coverage-and-makes-it-more-affordable.

74 Declercq, Eugene, and Laurie Zephyrin. 2020. “Maternal Mortality in the United States: A Primer.” The Commonwealth

Fund. https://www.commonwealthfund.org/publications/issue-brief-report/2020/dec/maternal-mortality-united-statesprimer.

75 Trends in Maternal Mortality Statistics.” 2019. North Carolina Department of Health and Human Services. https://schs. dph.ncdhhs.gov/data/maternal/.

76 “Enrollment Dashboard | NC Medicaid,” NC Department of Health and Human Services Division of Health Benefits, accessed December 7, 2021, https://medicaid.ncdhhs.gov/reports/dashboards#enroll.

77 Logan Rockefeller Harris, Mel Umbarger, and Suzy Khachaturyan, “U.S. Census Bureau Releases Data on Health Insurance Coverage in N.C.,” North Carolina Justice Center (blog), September 15, 2020, https://www.ncjustice.org/us-census-bureau-releases-data-on-health-insurance-coverage-in-n-c/.

78 Mandy Cohen, “Governor’s Recommended Budget, 2021-23 - NC Department of Health and Human Services,” 2021, 24.

79 Laura Benzing and Cynthia Doug, “Churn Patterns in Adult Medicaid Beneficiaries from North Carolina: 2016-2020” (Duke University Margolis Center for Health Policy, 2021), https://healthpolicy.duke.edu/sites/default/files/2021-05/ Churn%20Adults%20Fact%20Sheet.pdf.

80 Benzing and Doug.

81 CDC, “Medicaid Coverage Patterns for People with SCD,” Centers for Disease Control and Prevention, March 24, 2021, https://www.cdc.gov/ncbddd/hemoglobinopathies/scdc-fact-sheet-medicaid-data.html.

82 Madeline Guth, Rachel Garfield, and Robin Rudowitz, “The Effects of Medicaid Expansion under the ACA: Studies from January 2014 to January 2020,” Kaiser Family Foundation (blog), March 17, 2020, https://www.kff.org/medicaid/ report/the-effects-of-medicaid-expansion-under-the-aca-updated-findings-from-a-literature-review/.

83 Madeline Guth, Rachel Garfield, and Robin Rudowitz.

84 Erica L. Eliason, “Adoption of Medicaid Expansion Is Associated with Lower Maternal Mortality,” Women’s Health Issues: Official Publication of the Jacobs Institute of Women’s Health 30, no. 3 (2020): 147–52, https://doi. org/10.1016/j.whi.2020.01.005.

85 Julie Kanter et al., “Building Access to Care in Adult Sickle Cell Disease: Defining Models of Care, Essential Components, and Economic Aspects,” Blood Advances 4, no. 16 (2020): 3804–13.

86 Kanter et al.

87 “North Carolina Health Professional Supply Data,” Sheps Health Workforce NC, accessed December 7, 2021, https:// nchealthworkforce.unc.edu/interactive/supply/; National Center on Birth Defects and Developmental Disabilities, Division of Blood Disorders, “Sickle Cell Disease in North Carolina” (CDC), accessed December 7, 2021, https:// www.cdc.gov/ncbddd/sicklecell/documents/scd_in_nc_providers.pdf.

88 Kanter et al., “Building Access to Care in Adult Sickle Cell Disease: Defining Models of Care, Essential Components, and Economic Aspects”; Alyssa M. Schlenz et al., “Needs Assessment for Patients with Sickle Cell Disease in South Carolina, 2012,” Public Health Reports (Washington, D.C.: 1974) 131, no. 1 (2016): 108–16; Kristen J. Alston et al., “Experiences of Pediatric Patients with Sickle Cell Disease in Rural Emergency Departments,” Journal of Pediatric Hematology/Oncology 37, no. 3 (2015): 195–99.

89 P Bradt et al., “Crizanlizumab, Voxelotor, and L-Glutamine for Sickle Cell Disease: Effectiveness and Value,” Evidence Report (Institute for Clinical and Economic Review, February 9, 2021), https://icer-review.org/material/sickle-celldisease-draft-evidence-report/.

90 Matthew P. Smeltzer et al., “Identifying Barriers to Evidence-Based Care for Sickle Cell Disease: Results from the Sickle Cell Disease Implementation Consortium Cross-Sectional Survey of Healthcare Providers in the USA,” BMJ Open 11, no. 11 (2021): e050880.

91 Sophie Lanzkron et al., “Impact of a Dedicated Infusion Clinic for Acute Management of Adults with Sickle Cell Pain Crisis,” American Journal of Hematology 90, no. 5 (2015): 376–80; Givi Basishvili et al., “Comprehensive Management Reduces Incidence and Mortality of Acute Chest Syndrome in Patients with Sickle Cell Disease,” American Journal of Hematology 93, no. 3 (2018): E64–67; Michael R. DeBaun, “The Challenge of Creating an

Evidence-Based Guideline for Sickle Cell Disease,” JAMA 312, no. 10 (2014): 1004–5; Kathryn L. Koch et al., “Intensive Management of High-Utilizing Adults with Sickle Cell Disease Lowers Admissions,” American Journal of Hematology 90, no. 3 (2015): 215–19; Y M Yang et al., “Comparison of Costs to the Health Sector of Comprehensive and Episodic Health Care for Sickle Cell Disease Patients.,” Public Health Reports 110, no. 1 (1995): 80–86.

92 Monica Ter-Minassian et al., “Quality Metrics and Health Care Utilization for Adult Patients with Sickle Cell Disease,” Journal of the National Medical Association 111, no. 1 (2019): 54–61; Barbara P. Yawn et al., “Management of Sickle Cell Disease: Summary of the 2014 Evidence-Based Report by Expert Panel Members,” JAMA 312, no. 10 (September 10, 2014): 1033, https://doi.org/10.1001/jama.2014.10517.

93 Kanter et al., “Building Access to Care in Adult Sickle Cell Disease: Defining Models of Care, Essential Components, and Economic Aspects.”

94 “Improving Access to Maternal Health Care in Rural Communities | CMS” (Centers for Medicare & Medicaid Services, September 3, 2019). (p16)

95 Cecil G. Sheps Center for Health Services Research, “North Carolina Health Professional Supply Data,” Cecil G. Sheps Center for Health Services Research, December 7, 2021.

96 Liora Engel-Smith, “When a Rural Maternity Unit Closes, Alternatives Are Hard to Come By,” North Carolina Health News, February 24, 2020, http://www.northcarolinahealthnews.org/2020/02/24/when-rural-maternity-units-closealternatives-are-hard-to-come-by/.

97 Carolina Public Press, North Carolina Health News September 29, and 2017, “Mountain Maternity Wards Closing, WNC Women’s Lives on the Line,” North Carolina Health News, September 29, 2017, http://www. northcarolinahealthnews.org/2017/09/29/mountain-maternity-wards-closing-wnc-womens-lives-on-the-line/.

98 Engel-Smith, “When a Rural Maternity Unit Closes, Alternatives Are Hard to Come By.”

99 “Turning Point: Improving the Care of Young Adults With Sickle Cell Disease,” accessed December 7, 2021, https:// muschealth.org/health-professionals/progressnotes/2017/spring/features/sickle-cell-disease.

100 “Turning Point.”

101 Kanter et al., “Building Access to Care in Adult Sickle Cell Disease: Defining Models of Care, Essential Components, and Economic Aspects.”

102 Kanter et al.

103 “Improving Access to Maternal Health Care in Rural Communities | CMS.”

104 “Improving Access to Maternal Health Care in Rural Communities | CMS.”

105 Liora Engel-Smith, North Carolina Health News April 9, and 2020, “Initiative Aims to Connect Patients to Addiction Treatment by Building Better Networks,” North Carolina Health News, April 9, 2020, http://www. northcarolinahealthnews.org/2020/04/09/opioid-addiction-hub-and-spoke/.

106 Engel-Smith, April 9, and 2020.

107 Engel-Smith, April 9, and 2020.

108 Engel-Smith, April 9, and 2020.

109 “Healthy Blue Member Handbook: NC Medicaid Managed Care,” June 2021, https://www.healthybluenc.com/northcarolina/ncnc_caid_memberhandbook_eng.pdf. (p39)

110 “NC Medicaid Managed Care Member Handbook” (Carolina Complete Health, July 2021). (p39)

111 “AmeriHealth NC Medicaid Managed Care Member Handbook” (AmeriHealth Caritas, August 2021); “NC Medicaid Managed Care Member Handbook”; “Healthy Blue Member Handbook: NC Medicaid Managed Care”; “UnitedHealthcare NC Medicaid Managed Care Member Handbook” (UnitedHealthcare Community Plan of North Carolina, March 2021); “WellCare of North Carolina - NC Medicaid Managed Care Member Handbook” (WellCare of North Carolina, July 2021); “Revised and Restated Request for Proposal #: 30-190029-DHB Prepaid Health Plan Services” (State of North Carolina, Department of Health and Human Services Division of Health Benefits, January 25, 2019).

112 “AmeriHealth NC Medicaid Managed Care Member Handbook”; “NC Medicaid Managed Care Member Handbook”; “Healthy Blue Member Handbook: NC Medicaid Managed Care”; “UnitedHealthcare NC Medicaid Managed Care Member Handbook”; “WellCare of North Carolina - NC Medicaid Managed Care Member Handbook”; “Revised and

Restated Request for Proposal #: 30-190029-DHB Prepaid Health Plan Services.”

113 MACPAC, “Chapter 5 Mandated Report on Non-Emergency Medical Transportation,” June 2021, 45. (p20)

114 “Rural Health for North Carolina Overview - Rural Health Information Hub,” accessed December 8, 2021, https:// www.ruralhealthinfo.org/states/north-carolina.

115 MACPAC, “Chapter 5 Mandated Report on Non-Emergency Medical Transportation.” (p9)

116 Laura Fraade-Blanar, Tina Koo, and Christopher M Whaley, “Going to the Doctor: Rideshare as Nonemergency Medical Transportation,” n.d., 52. (p27)

117 Fraade-Blanar, Koo, and Whaley. (p15)

118 Fraade-Blanar, Koo, and Whaley. (p15)

119 FierceHealthcare, “Modernizing Medical Transportation with Rideshare” (FierceHealthcare, 2020).

120 Sharon Silow-Carroll et al., “Medicaid’s Non-Emergency Medical Transportation Benefit: Stakeholder Perspectives on Trends, Challenges, and Innovations” (MACPAC, August 2021). (p13)

121 Silow-Carroll et al. (p13)

122 Rita Vanessa Masese et al., “Barriers and Facilitators to Care for Individuals with Sickle Cell Disease in Central North Carolina: The Emergency Department Providers’ Perspective,” PloS One 14, no. 5 (2019): e0216414, https://doi. org/10.1371/journal.pone.0216414; “Healthy Moms, Healthy Babies: Building a Risk-Appropriate Perinatal System of Care for North Carolina” (North Carolina Institute of Medicine, April 2020), 15, https://nciom.org/wp-content/ uploads/2020/04/Perinatal-Report-FINAL.pdf.

123 Rita Vanessa Masese et al., “Barriers and Facilitators to Care for Individuals with Sickle Cell Disease in Central North Carolina: The Emergency Department Providers’ Perspective,” PloS One 14, no. 5 (2019): e0216414, https://doi. org/10.1371/journal.pone.0216414.

124 Michelle van Ryn and Jane Burke, “The Effect of Patient Race and Socio-Economic Status on Physicians’ Perceptions of Patients,” Social Science & Medicine 50, no. 6 (2000): 813–28; V N Gamble, “Under the Shadow of Tuskegee: African Americans and Health Care.,” American Journal of Public Health 87, no. 11 (1997): 1773–78.

125 Katrina Armstrong et al., “Prior Experiences of Racial Discrimination and Racial Differences in Health Care System Distrust,” Medical Care 51, no. 2 (February 2013): 144–50, https://doi.org/10.1097/MLR.0b013e31827310a1.

126 Carlton Haywood et al., “Perceived Discrimination in Health Care Is Associated with a Greater Burden of Pain in Sickle Cell Disease,” Journal of Pain and Symptom Management 48, no. 5 (November 2014): 934–43, https://doi. org/10.1016/j.jpainsymman.2014.02.002; Carlton Haywood et al., “The Impact of Race and Disease on Sickle Cell Patient Wait Times in the Emergency Department,” The American Journal of Emergency Medicine 31, no. 4 (2013): 651–56, https://doi.org/10.1016/j.ajem.2012.11.005; Jeffrey Glassberg et al., “Among Emergency Physicians, Use of the Term ‘Sickler’ Is Associated with Negative Attitudes toward People with Sickle Cell Disease,” American Journal of Hematology 88, no. 6 (2013): 532–33; Cynthia B. Sinha et al., “Management of Chronic Pain in Adults Living With Sickle Cell Disease in the Era of the Opioid Epidemic: A Qualitative Study,” JAMA Network Open 2, no. 5 (2019): e194410; Daniel Sop et al., “Survey of Physician Perspective towards Management of Pain for Chronic Conditions in the Emergency Department,” Modern Clinical Medicine Research 1 (2017).

127 Sinha et al., “Management of Chronic Pain in Adults Living With Sickle Cell Disease in the Era of the Opioid Epidemic.”

128 Sinha et al.; Darbari and Brandow, “Pain-Measurement Tools in Sickle Cell Disease”; Amanda M. Brandow et al., “American Society of Hematology 2020 Guidelines for Sickle Cell Disease: Management of Acute and Chronic Ppain,” Blood Advances 4, no. 12 (2020): 2656–2701; Sop et al., “Survey of Physician Perspective towards Management of Pain for Chronic Conditions in the Emergency Department”; Samir K. Ballas et al., “Opioid Utilization Patterns in United States Individuals with Sickle Cell Disease,” American Journal of Hematology 93, no. 10 (2018): E345–47.

129 Sinha et al., “Management of Chronic Pain in Adults Living With Sickle Cell Disease in the Era of the Opioid Epidemic.”

130 Michael C. Lu et al., “Closing the Black-White Gap in Birth Outcomes: A Life-Course Approach,” Ethnicity & Disease 20, no. 1 0 2 (2010): S2-62–76.

131 Cynthia Gyamfi-Bannerman et al., “Postpartum Hemorrhage Outcomes and Race,” American Journal of Obstetrics and Gynecology 219, no. 2 (2018): 185.e1-185.e10, https://doi.org/10.1016/j.ajog.2018.04.052; “Healthy Moms, Healthy Babies: Building a Risk-Appropriate Perinatal System of Care for North Carolina.”

132 “State Policies to Improve Maternal Health Outcomes,” Commonwealth Fund, November 19, 2021, https://www. commonwealthfund.org/publications/maps-and-interactives/2020/nov/state-policies-improve-maternal-healthoutcomes.

133 “Bill Text - SB-464 California Dignity in Pregnancy and Childbirth Act.,” October 8, 2019, https://leginfo.legislature. ca.gov/faces/billTextClient.xhtml?bill_id=201920200SB464.

134 Jonathan Y. Siden et al., “Reducing Implicit Bias in Maternity Care: A Framework for Action,” Women’s Health Issues, 2021.

135 Stephanie Teleki, “Challenging Providers To Look Within Themselves: A New Tool To Reduce Bias In Maternity Care | Health Affairs Blog,” Health Affairs, July 6, 2021, https://www.healthaffairs.org/do/10.1377/hblog20210630.980773/ full/.

136 “Healthy Moms, Healthy Babies: Building a Risk-Appropriate Perinatal System of Care for North Carolina”; Stephanie Teleki, “Challenging Providers To Look Within Themselves.”

137 “FAQs for Implicit Bias Training” (Michigan Department of Licensing and Regulatory Affairs, September 24, 2021), https://www.michigan.gov/documents/lara/Implicit_Bias_FAQs_FINAL_7.22.2021_731300_7.pdf.

138 “About Healthy Opportunities,” NC DHHS, n.d., https://www.ncdhhs.gov/about/department-initiatives/healthyopportunities/about-healthy-opportunities.

139 “Healthy Opportunities,” NC DHHS, n.d., https://www.ncdhhs.gov/about/department-initiatives/healthy-opportunities.

140 “North Carolina Creates Nation’s First Statewide Infrastructure Connecting Healthcare and Human Services | NC Gov. Cooper,” accessed February 6, 2022, https://governor.nc.gov/news/north-carolina-createsnation%E2%80%99s-first-statewide-infrastructure-connecting-healthcare-and-human.

141 Zachary Wortman, Elizabeth Cuervo Tilson, and Mandy Krauthamer Cohen, “Buying Health For North Carolinians: Addressing Nonmedical Drivers Of Health At Scale,” Health Affairs 39, no. 4 (April 1, 2020): 649–54, https://doi. org/10.1377/hlthaff.2019.01583.

142 “North Carolina Nonprofit Organizations and the Impacts of COVID-19” (North Carolina Office of Strategic Partnerships and The Policy Lab at Brown University, September 2020), https://files.nc.gov/ncosbm/documents/files/ NC-Nonprofits-COVID-Survey-Results-2020.pdf.

143 Alexandra Power-Hays et al., “Universal Screening for Social Determinants of Health in Pediatric Sickle Cell Disease: A Quality-Improvement Initiative,” Pediatric Blood & Cancer 67, no. 1 (January 2020): e28006, https://doi. org/10.1002/pbc.28006.

144 Power-Hays et al.

145 Daniel B. Nelson, Michelle H. Moniz, and Matthew M. Davis, “Population-Level Factors Associated with Maternal Mortality in the United States, 1997–2012,” BMC Public Health 18, no. 1007 (December 2018), https://doi. org/10.1186/s12889-018-5935-2.

146 Cavaliere, B. N., Martin, K. S., Smith, M., & Hake, M., “Key Drivers to Improve Food Security and Health Outcomes: An Evidence Review of Food Bank - Health Care Partnerships and Related Interventions.” (Feeding America, 2021).

147 Rebecca O’Reilly, Barbara Beale, and Donna Gillies, “Screening and Intervention for Domestic Violence During Pregnancy Care: A Systematic Review,” Trauma, Violence, & Abuse 11, no. 4 (October 1, 2010): 190–201, https:// doi.org/10.1177/1524838010378298.

148 “Amendment Number 3/4 Prepaid Health Plan Services #30-190029-DHB – PHP Name” (NC Department of Health and Human Services, n.d.), https://medicaid.ncdhhs.gov/media/9087/download.

149 “Promote Accountability Mechanisms for Managed Care Organizations: Advancing Primary Care Innovation in Medicaid Managed Care” (Center for Health Care Strategies, Inc., November 2020), https://www.chcs.org/media/ PCI-Toolkit-MCO-Accountability-Tool_111720.pdf.

150 Manatt Health, “Addressing Social Factors That Affect Health: Emerging Trends and Leading Edge Practices in Medicaid” (State Health & Value Strategies, April 2019), https://www.manatt.com/Manatt/media/Documents/Articles/ Social-Factors-That-Affect-Health_Final.pdf.

151 NC Medicaid, “HEDIS Dashboards,” n.d., https://medicaid.ncdhhs.gov/reports/dashboards.

152 Centers for Disease Control and Prevention, “Select State-Based Activities and Funding in North Carolina,” January 12, 2022, https://www.cdc.gov/ncbddd/aboutus/state-funding/north-carolina.html.

153 Marcelo D’Agostino et al., “Open Data and Public Health,” Revista Panamericana de Salud Pública 42 (June 5, 2018): e66, https://doi.org/10.26633/RPSP.2018.66; Kimá Joy Taylor and Sarah Benatar, “The Pandemic Has Increased Demand for Data and Accountability to Decrease Maternal Health Inequity,” n.d., 9; Julie Kanter et al., “Improving Outcomes for Patients With Sickle Cell Disease in the United States: Making the Case for More Resources, Surveillance, and Longitudinal Data,” JAMA Health Forum 2, no. 10 (2021): e213467, https://doi. org/10.1001/jamahealthforum.2021.3467.

154 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,” March 5, 2021, https://files.nc.gov/ncdma/Technical-Specifications-Manual-20210401.pdf.

155 Georgetown Center for Children & Families, “A Round-Up of Current Child Health Dashboards,” September 29, 2021, https://ccf.georgetown.edu/2021/09/29/a-round-up-of-current-child-health-dashboards/.

156 Texas Health and Human Services, “HHSC Performance Indicator Dashboard,” n.d., https://thlcportal.com/ dashboards/hhscperformance; Washington State Health Care Authority, “Medicaid Maternal and Child Health Measures Dashboard,” October 26, 2021, https://hca-tableau.watech.wa.gov/t/51/views/MaternalandChildHealth/ Dashboard.

157 Wailoo, Dying in the City of the Blues: Sickle Cell Anemia and the Politics of Race and Health.

158 Anjelica C. Saulsberry, Jerlym S. Porter, and Jane S. Hankins, “A Program of Transition to Adult Care for Sickle Cell Disease,” Hematology 2019, no. 1 (2019): 496–504; Arlene Smaldone et al., “HABIT, A Randomized Feasibility Trial to Increase Hydroxyurea Adherence, Suggests Improved Health Related Quality of Life in Youth with Sickle Cell Disease,” The Journal of Pediatrics 197 (2018): 177-185.e2.

159 Sophie Lanzkron, C. Patrick Carroll, and Carlton Haywood, “Mortality Rates and Age at Death from Sickle Cell Disease: U.S., 1979–2005,” Public Health Reports 128, no. 2 (2013): 110–16.

160 Jerlym S. Porter et al., “Pediatric to Adult Care Transition: Perspectives of Young Adults With Sickle Cell Disease,” Journal of Pediatric Psychology 42, no. 9 (2017): 1016–27, https://doi.org/10.1093/jpepsy/jsx088.

161 Marsha Treadwell et al., “Transition from Pediatric to Adult Care in Sickle Cell Disease: Establishing Evidence-Based Practice and Directions for Research,” American Journal of Hematology 86, no. 1 (2011): 116–20.

162 Treadwell et al.

163 Saulsberry, Porter, and Hankins, “A Program of Transition to Adult Care for Sickle Cell Disease.”

164 Porter et al., “Pediatric to Adult Care Transition.”

165 Treadwell et al., “Transition from Pediatric to Adult Care in Sickle Cell Disease.”

166 “Beneficiaries.”

167 Rosalind Bryant et al., “APHON/ASPHO Policy Statement for the Transition of Patients With Sickle Cell Disease From Pediatric to Adult Health Care,” Journal of Pediatric Oncology Nursing 32, no. 6 (2015): 355–59.

168 “Pediatric to Adult Hematologic Care Transition,” American Society of Hematology, n.d., https://www.hematology. org/education/clinicians/clinical-priorities/pediatric-to-adult-care-transition.

169 Treadwell et al., “Transition from Pediatric to Adult Care in Sickle Cell Disease”; Lewis L. Hsu et al., “Community Health Workers as Support for Sickle Cell Care,” American Journal of Preventive Medicine 51, no. 1 Suppl 1 (2016): S87–98.

170 Marie McCormick, Henrietta Awo Osei-Anto, and Rose Marie Martinez, eds., Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action (Washington, DC: The National Academies Press, 2020), 16, https://doi. org/10.17226/25632.

171 “NC DPH: N.C. Sickle Cell Syndrome Program.”

172 Treadwell et al., “Transition from Pediatric to Adult Care in Sickle Cell Disease.”

173 Nowogrodzki, “No Adult Left Behind.”

174 Porter et al., “Pediatric to Adult Care Transition.”

175 Jennifer R. Frost et al., “Improving Sickle Cell Transitions of Care Through Health Information Technology,” American Journal of Preventive Medicine 51, no. 1 (2106): S17–23; “Sickle Cell Transition E-Learning Program (STEP) for Teens with Sickle Cell Disease - St. Jude Children’s Research Hospital,” St. Jude Children’s Research Hospital, n.d., https://www.stjude.org/treatment/disease/sickle-cell-disease/step-program.html.

176 Saulsberry, Porter, and Hankins, “A Program of Transition to Adult Care for Sickle Cell Disease.”

177 Anna Nowogrodzki, “No Adult Left behind: Bridge the Health-Care Gap for Sickle-Cell Disease,” Nature 596, no. 7873 (2021): S13–15, https://doi.org/10.1038/d41586-021-02143-z; Hsu et al., “Community Health Workers as Support for Sickle Cell Care.”

178 Wally R. Smith et al., “Lessons Learned from Building a Pediatric-to-Adult Sickle Cell Transition Program,” Southern Medical Journal 112, no. 3 (2019): 190–97; Saulsberry, Porter, and Hankins, “A Program of Transition to Adult Care for Sickle Cell Disease.”

179 Saulsberry, Porter, and Hankins, “A Program of Transition to Adult Care for Sickle Cell Disease.”

180 Smith et al., “Lessons Learned from Building a Pediatric-to-Adult Sickle Cell Transition Program.”

181 Hsu et al., “Community Health Workers as Support for Sickle Cell Care.”

182 Nirmish Shah et al., “Outpatient Healthcare Utilization and Rates of Co-Management Among Medicaid Patients with Sickle Cell Disease in North Carolina,” Blood 132, no. Supplement 1 (November 29, 2018): 4725, https://doi. org/10.1182/blood-2018-99-110737.

183 Joseph Lunyera et al., “Attitudes of Primary Care Physicians Toward Sickle Cell Disease Care, Guidelines, and Comanaging Hydroxyurea With a Specialist,” Journal of Primary Care & Community Health 8, no. 1 (January 1, 2017): 38, https://doi.org/10.1177/2150131916662969.

184 NICHQ, “Congressional Report: Sickle Cell Disease Treatment Demonstration Program” (NICHQ, September 2017); “Sickle Cell Disease Treatment Demonstration Program,” NICHQ - National Institute for Children’s Health Quality, accessed February 1, 2022, https://www.nichq.org/project/sickle-cell-disease-treatment-demonstration-program.

185 CDC, “NCBDDD Select State-Based Activities and Funding in North Carolina,” Centers for Disease Control and Prevention, January 12, 2022, https://www.cdc.gov/ncbddd/aboutus/state-funding/north-carolina.html.

186 Mandip Kaur et al., “Understanding Sickle Cell Disease: Impact of Surveillance and Gaps in Knowledge,” Blood Advances 4, no. 3 (February 6, 2020): 496–98, https://doi.org/10.1182/bloodadvances.2019001000.

187 NCDHHS, “N.C. Sickle Cell Syndrome Program: Services,” NCDHHS, October 14, 2019, https://www. ncsicklecellprogram.org/services.asp.

188 NCDHHS, “North Carolina Sickle Cell Syndrome Program.”

189 “North Carolina Sickle Cell Syndrome Program Service Regions,” September 25, 2019, https://www. ncsicklecellprogram.org/Documents/SC-CatchmentMap-092519.pdf.

190 Ritesh Banerjee, Jeanette Y. Ziegenfuss, and Nilay D. Shah, “Impact of Discontinuity in Health Insurance on Resource Utilization,” BMC Health Services Research 10, no. 1 (July 6, 2010): 8, https://doi.org/10.1186/1472-696310-195.

191 Allyson G. Hall, Jeffrey S. Harman, and Jianyi Zhang, “Lapses in Medicaid Coverage: Impact on Cost and Utilization Among Individuals With Diabetes Enrolled in Medicaid,” Medical Care 46, no. 12 (2008): 1223–24.

192 “NC Budget and Spending - SAS® Visual Analytics,” accessed February 1, 2022, https://ncreports.ondemand.sas. com/SASVisualAnalytics/?reportUri=/reports/reports/b00debfc-51e7-45a6-92d4-3efaf33a3daa&sectionIndex=0&sso_ guest=true&reportViewOnly=true&sas-welcome=false.

193 Elizabeth Hinton Published: Jun 22 and 2020, “State Efforts to Expand Medicaid Coverage & Access to Telehealth in Response to COVID-19,” KFF (blog), June 22, 2020, https://www.kff.org/coronavirus-covid-19/issue-brief/stateefforts-to-expand-medicaid-coverage-access-to-telehealth-in-response-to-covid-19/.

194 “SPECIAL BULLETIN COVID-19 #9: Telehealth Provisions - Clinical Policy Modification | NC Medicaid,” accessed December 7, 2021, https://medicaid.ncdhhs.gov/blog/2020/03/20/special-bulletin-covid-19-9-telehealth-provisionsclinical-policy-modification.

195 “SPECIAL BULLETIN COVID-19 #66: Telehealth and Virtual Patient Communications Clinical Policy Modifications - Well Child Visits | NC Medicaid,” accessed December 7, 2021, https://medicaid.ncdhhs.gov/blog/2020/04/24/ special-bulletin-covid-19-66-telehealth-and-virtual-patient-communications-clinical.

196 “North Carolina Telehealth Playbook” (NC Department of Health and Human Services, February 19, 2021), https:// www.ncdhhs.gov/media/10611/download.

197 CDC, “Telehealth Interventions to Improve Chronic Disease | Cdc.Gov,” Centers for Disease Control and Prevention, May 11, 2020, https://www.cdc.gov/dhdsp/pubs/telehealth.htm.

198 “North Carolina Broadband Infrastructure Office,” accessed December 7, 2021, https://www.ncbroadband.gov/

199 “Build Back Better Includes $1 Billion-Plus for Broadband,” Benton Foundation, November 1, 2021, https://www benton.org/headlines/build-back-better-includes-1-billion-plus-broadband.

200 “Sickle Cell Disease: Access-to-Care Summit 2018” (Sickle Cell Disease (SCD) Therapeutics Conference, Global Blood Therapeutics, Inc, 2018), 4.

201 Orah S. Platt et al., “Pain in Sickle Cell Disease,” New England Journal of Medicine 325, no. 1 (July 4, 1991):

11–16, https://doi.org/10.1056/NEJM199107043250103; Patricia Houston-Yu et al., “Frequent and Prolonged Hospitalizations: A Risk Factor for Early Mortality in Sickle Cell Disease Patients,” American Journal of Hematology 72, no. 3 (2003): 201–3.

202 “Sickle Cell Disease: Access-to-Care Summit 2018”; Christian T. Evensen et al., “Quality of Care in Sickle Cell Disease,” Medicine 95, no. 35 (September 2, 2016): e4528.

203 Bradt et al., “Crizanlizumab, Voxelotor, and L-Glutamine for Sickle Cell Disease: Effectiveness and Value.”

204 Bradt et al.

205 “Sickle Cell Disease: Access-to-Care Summit 2018.”

206 Glassberg et al., “Among Emergency Physicians, Use of the Term ‘Sickler’ Is Associated with Negative Attitudes toward People with Sickle Cell Disease.”

207 Glassberg et al.

208 “Sickle Cell Disease: Access-to-Care Summit 2018”; Caroline E Freiermuth et al., “Attitudes Towards Patients with Sickle Cell Disease in a Multi-Center Sample of Emergency Department Providers,” Advanced Emergency Nursing Journal 36, no. 4 (2014): 335–47, https://doi.org/10.1097/TME.0000000000000036; Haywood et al., “The Impact of Race and Disease on Sickle Cell Patient Wait Times in the Emergency Department”; Susan M. Lin et al., “Improving Quality of Care for Sickle Cell Patients in the Pediatric Emergency Department,” Pediatric Emergency Care 32, no. 1 (2016): 14–16, https://doi.org/10.1097/PEC.0000000000000369.

209 Lennette J. Benjamin, Gwendolyn I. Swinson, and Ronald L. Nagel, “Sickle Cell Anemia Day Hospital: An Approach for the Management of Uncomplicated Painful Crises,” Blood 95, no. 4 (February 15, 2000): 1130–37, https://doi. org/10.1182/blood.V95.4.1130.003k03a_1130_1136; Jean L. Raphael et al., “Treatment of Uncomplicated VasoOcclusive Crises in Children with Sickle Cell Disease in a Day Hospital,” Pediatric Blood & Cancer 51, no. 1 (2008): 82–85, https://doi.org/10.1002/pbc.21483.

210 “Division of Hematology/Oncology,” East Carolina University, n.d., https://internal-medicine.ecu.edu/hematology/; “Duke Sickle Cell Center | Medical Services,” Duke University School of Medicine, n.d., https://medicine.duke.edu/ divisions/hematology/patient-care/duke-sickle-cell-center/medical-services.

211 Jean L. Raphael et al., “Day Hospital versus Inpatient Management of Uncomplicated Vaso-Occlusive Crises in Children with Sickle Cell Disease,” Pediatric Blood & Cancer 51, no. 3 (2008): 398–401, https://doi.org/10.1002/ pbc.21537; Benjamin, Swinson, and Nagel, “Sickle Cell Anemia Day Hospital.”

212 Andrew Binding et al., “An Innovative Short-Stay Health Care Model for Treatment of Uncomplicated Vaso-Occlusive Crisis in Adult Sickle Cell Disease Patients in Canada to Reduce Emergency Department Utilization,” CJEM 21, no. 1 (2019): 55–62.

213 “Sickle Cell Disease: Access-to-Care Summit 2018”; Biree Andemariam and Sasia Jones, “Development of a New Adult Sickle Cell Disease Center Within an Academic Cancer Center: Impact on Hospital Utilization Patterns and Care Quality,” Journal of Racial and Ethnic Health Disparities 3, no. 1 (2016): 176–82.

214 Evensen et al., “Quality of Care in Sickle Cell Disease.”

215 Kanter et al., “Building Access to Care in Adult Sickle Cell Disease: Defining Models of Care, Essential Components, and Economic Aspects.”

216 Adeboye H. Adewoye et al., “Effectiveness of a Dedicated Day Hospital for Management of Acute Sickle Cell Pain,” Haematologica 92, no. 6 (2007): 854–854.

217 “Using the Virtual New Normal to Care for Sickle Cell Disease Patients,” Boston Medical Center, accessed December 7, 2021, https://development.bmc.org/our-impact/stories/using-the-virtual-new-normal-to-care-for-sicklecell-disease-patients/.

218 K. F. Woods et al., “Sickle Cell Disease Telemedicine Network for Rural Outreach,” Journal of Telemedicine and Telecare 6, no. 5 (2000): 285–90, https://doi.org/10.1258/1357633001935923.

219 Giuliana Grossi, “Evaluating the Impact of Telehealth on Hydroxyurea Response,” HCPLive, accessed December 13, 2021, https://www.hcplive.com/view/impact-telehealth-hydroxyurea-response.

220 Benjamin, Swinson, and Nagel, “Sickle Cell Anemia Day Hospital.”

221 Raphael et al., “Treatment of Uncomplicated Vaso-Occlusive Crises in Children with Sickle Cell Disease in a Day Hospital.”

222 Jin Han et al., “Program Expansion of a Day Hospital Dedicated to Manage Sickle Cell Pain,” Blood 130, no. Supplement 1 (2017): 4664.

223 Wilson-Frederick et al., “Medicaid and CHIP Sickle Cell Disease Report, T-MSIS Analytic Files (TAF) 2017.”

224 Trisha E. Wong et al., “Update on the Use of Hydroxyurea Therapy in Sickle Cell Disease,” Blood 124, no. 26 (2014): 3850–57, https://doi.org/10.1182/blood-2014-08-435768.

225 Rohit Kumar Agrawal et al., “Hydroxyurea in Sickle Cell Disease: Drug Review,” Indian Journal of Hematology & Blood Transfusion 30, no. 2 (2014): 91–96.

226 Amy Williams, “Outpatient Pharmacy Prior Approval Criteria Sickle Cell Anemia Agents,” North Carolina Department of Health and Human Services, 2019.

227 “Hydroxyurea Treatment for Sickle Cell Disease” (St. Jude Children’s Research Hospital, Departments of Hematology, Patient Education, and Biomedical Communications, 2008), https://www.stjude.org/content/dam/ en_US/shared/www/patient-support/hematology-literature/hydroxyurea-treatment-for-sickle-cell-disease.pdf; Otis W. Brawley et al., “National Institutes of Health Consensus Development Conference Statement: Hydroxyurea Treatment for Sickle Cell Disease,” Annals of Internal Medicine 148, no. 12 (2008): 932–38.

228 Agrawal et al., “Hydroxyurea in Sickle Cell Disease: Drug Review”; Gina Kolata, “Two New Drugs Help Relieve Sickle-Cell Disease. But Who Will Pay?,” The New York Times, December 7, 2019, https://www.nytimes. com/2019/12/07/health/sickle-cell-adakveo-oxbryta.html; Wilson-Frederick et al., “Medicaid and CHIP Sickle Cell Disease Report, T-MSIS Analytic Files (TAF) 2017.”

229 Wilson-Frederick et al., “Medicaid and CHIP Sickle Cell Disease Report, T-MSIS Analytic Files (TAF) 2017.”

230 Amanda M. Brandow and Julie A. Panepinto, “Hydroxyurea Use in Sickle Cell Disease: The Battle with Low Rates of Prescription, Poor Patient Compliance, and Fears of Toxicities and Side Effects,” Expert Review of Hematology 3, no. 3 (2010): 255–60.

231 Brawley et al., “National Institutes of Health Consensus Development Conference Statement: Hydroxyurea Treatment for Sickle Cell Disease.”

232 Nancy Crego et al., “Sickle Cell Disease Co-Management, Healthcare Utilization and Hydroxyurea Use in North Carolina,” Journal of the American Board of Family Medicine : JABFM 33, no. 1 (2020): 91–105; Joacy G. Mathias et al., “Hydroxyurea Use After Transitions of Care Among Young Adults With Sickle Cell Disease and Tennessee Medicaid Insurance,” JAMA Network Open 4, no. 10 (2021): e2128971, https://doi.org/10.1001/ jamanetworkopen.2021.28971.

233 Sarah Shaner et al., “Impact of Telehealth Visits on Hydroxyurea Response in Sickle Cell Anemia,” Pediatric Blood & Cancer 68, no. 12 (2021): e29354.

234 Brandow and Panepinto, “Hydroxyurea Use in Sickle Cell Disease: The Battle with Low Rates of Prescription, Poor Patient Compliance, and Fears of Toxicities and Side Effects.”

235 Darbari and Brandow, “Pain-Measurement Tools in Sickle Cell Disease.”

236 Brandow et al., “American Society of Hematology 2020 Guidelines for Sickle Cell Disease: Management of Acute and Chronic Ppain”; Sinha et al., “Management of Chronic Pain in Adults Living With Sickle Cell Disease in the Era of the Opioid Epidemic.”

237 Varun Sagi et al., “Integrative Approaches to Treating Pain in Sickle Cell Disease: Pre-Clinical and Clinical Evidence,” Complementary Therapies in Medicine 51 (2020): 102394.

238 “Pain Management Best Practices Inter-Agency Task Force Report: Updates, Gaps, Inconsistencies, and Recommendations” (U.S. Department of Health and Human Services, May 2019), https://www.hhs.gov/ash/advisorycommittees/pain/reports/index.html.

239 “NC Medicaid: Outpatient Pharmacy Prior Approval Criteria, Opioid Analgesics” (North Carolina Department of Health and Human Services, March 1, 2021), https://medicaid.ncdhhs.gov/media/9006/open.

240 Samir K. Ballas et al., “Hydroxyurea and Acute Painful Crises in Sickle Cell Anemia: Effects on Hospital Length of Stay and Opioid Utilization During Hospitalization, Outpatient Acute Care Contacts, and at Home,” Journal of Pain and Symptom Management 40, no. 6 (December 2010): 870–82, https://doi.org/10.1016/j.jpainsymman.2010.03.020.

241 “NC Medicaid: Outpatient Pharmacy Prior Approval Criteria, Opioid Analgesics.”

242 “Outpatient Behavioral Health Services,” NC Medicaid, accessed December 5, 2021, https://medicaid.ncdhhs.gov/ providers/programs-and-services/behavioral-health-idd/outpatient-behavioral-health-services; “Plans | NC Medicaid Managed Care,” 2022, https://ncmedicaidplans.gov/plans?program=102&plans%5B0%5D=166.

243 “Healthy Blue Member Handbook: NC Medicaid Managed Care.”

244 Brandow et al., “American Society of Hematology 2020 Guidelines for Sickle Cell Disease: Management of Acute and Chronic Ppain.”

245 “Integrative Therapies Pilot Project: A Holistic Approach to Chronic Pain Management in Medicaid” (Health

Management Associates, Inc., February 25, 2008), http://www.aomsm.org/Resources/Documents/Florida%20StudyCAM%20and%20Chronic%20Pain.pdf.

246 Robert T Davis et al., “Acupuncture for Chronic Pain in the Vermont Medicaid Population: A Prospective, Pragmatic Intervention Trial,” Global Advances in Health and Medicine 7 (April 10, 2018): 2164956118769557, https://doi. org/10.1177/2164956118769557.

247 Paul Telfer and Banu Kaya, “Optimizing the Care Model for an Uncomplicated Acute Pain Episode in Sickle Cell Disease” 2017, no. 1 (2017): 525–33.

248 Cara V. James and Shondelle Wilson-Frederick, “The Invisible Crisis: Understanding Pain Management in Medicare Beneficiaries with Sickle Cell Disease” (CMS Office of Minority Health, September 2018).

249 Brandow et al., “American Society of Hematology 2020 Guidelines for Sickle Cell Disease: Management of Acute and Chronic Ppain.”

250 Brandow et al.

251 Jo Howard, “Sickle Cell Disease: When and How to Transfuse,” Hematology 2016, no. 1 (2016): 625–31.

252 Stella T. Chou et al., “American Society of Hematology 2020 Guidelines for Sickle Cell Disease: Transfusion Support,” Blood Advances 4, no. 2 (2020): 327–55, https://doi.org/10.1182/bloodadvances.2019001143.

253 K Yazdanbaksh, RE Ware, and F Noizat-Pirenne, “Red Blood Cell Alloimmunization in Sickle Cell Disease: Pathophysiology, Risk Factors, and Transfusion Management,” Blood 120, no. 3 (2012): 528–37, https://doi. org/10.1182/blood-2011-11-327361; Russell E. Ware et al., “Sickle Cell Disease,” The Lancet 390, no. 10091 (2017): 311–23.

254 Chou et al., “American Society of Hematology 2020 Guidelines for Sickle Cell Disease.”

255 Elliott P Vichinsky, “Current Issues with Blood Transfusions in Sickle Cell Disease,” Seminars in Hematology, Transfusion-Related Iron Overload in Sickle Cell Anemia, 38 (2001): 14–22.

256 Chou et al., “American Society of Hematology 2020 Guidelines for Sickle Cell Disease.”

257 “Health Check Program Guide” (NC Medicaid, May 2020), https://files.nc.gov/ncdma/documents/Providers/ Programs_Services/EPSDT/Program-Guide-2020.pdf; S Terrell and P Guthery, “N.C. Medicaid Bulletin, January 2018” (North Carolina Department of Health and Human Services, January 2018).

258 “Corporate Medical Policy: Red Blood Cell Molecular Testing” (BlueCross BlueShield of North Carolina, 2021), https://www.bluecrossnc.com/sites/default/files/document/attachment/services/public/pdfs/medicalpolicy/red_blood_ cell_molecular_testing.pdf.

259 Lilian Castilho, “Molecular Typing of Blood Group Genes in Diagnostics,” Annals of Blood 6 (2021), https://doi. org/10.21037/aob-20-73.

260 Chou et al., “American Society of Hematology 2020 Guidelines for Sickle Cell Disease.”

261 Jessica Casas et al., “Changing Practice: Red Blood Cell Typing by Molecular Methods for Patients With Sickle Cell Disease,” Transfusion 55, no. 6 Pt 2 (2015): 1388–93.

262 I. A. Shulman, “Prophylactic Phenotype Matching of Donors for the Transfusion of Nonalloimmunized Patients with Sickle Cell Disease,” Immunohematology 22, no. 3 (2006): 101–2.

263 Grace E. Linder and Stella T. Chou, “Red Cell Transfusion and Alloimmunization in Sickle Cell Disease,” Haematologica 106, no. 7 (2021): 1805–15, https://doi.org/10.3324/haematol.2020.270546.

264 Yazdanbaksh, Ware, and Noizat-Pirenne, “Red Blood Cell Alloimmunization in Sickle Cell Disease: Pathophysiology, Risk Factors, and Transfusion Management.”

265 “Corporate Medical Policy: Red Blood Cell Molecular Testing.”

266 Samiya Hussain et al., “Implementation of Transcranial Doppler Ultrasonography Screening and Primary Stroke Prevention in Urban and Rural Sickle Cell Disease Populations,” Pediatric Blood & Cancer 62, no. 2 (2015): 219–23.

267 Lena N Naffaa, Yasmeen K Tandon, and Neville Irani, “Transcranial Doppler Screening in Sickle Cell Disease: The Implications of Using Peak Systolic Criteria,” World Journal of Radiology 7, no. 2 (2015): 52–56, https://doi. org/10.4329/wjr.v7.i2.52; M. G. Cherry et al., “The Clinical Effectiveness and Cost-Effectiveness of Primary Stroke Prevention in Children with Sickle Cell Disease: A Systematic Review and Economic Evaluation,” Health Technology Assessment 16, no. 43 (2012): 1–129, https://doi.org/10.3310/hta16430.

268 Wilson-Frederick et al., “Medicaid and CHIP Sickle Cell Disease Report, T-MSIS Analytic Files (TAF) 2017.”

269 Shannon M. Phillips et al., “Identified Barriers and Facilitators to Stroke Risk Screening in Children with Sickle Cell Anemia: Results from the DISPLACE Consortium,” Implementation Science Communications 2, no. 1

(2021): 87, https://doi.org/10.1186/s43058-021-00192-z; Hussain et al., “Implementation of Transcranial Doppler Ultrasonography Screening and Primary Stroke Prevention in Urban and Rural Sickle Cell Disease Populations”; M. Beth McCarville et al., “Evaluation of a Comprehensive Transcranial Doppler Screening Program for Children with Sickle Cell Anemia,” Pediatric Blood & Cancer 50, no. 4 (2008): 818–21, https://doi.org/10.1002/pbc.21430; Lindsay M. Bollinger et al., “Caregivers’ Perspectives on Barriers to Transcranial Doppler Screening in Children with SickleCell Disease,” Pediatric Blood & Cancer 56, no. 1 (2011): 99–102.

270 Lori E. Crosby et al., “Implementation of a Process for Initial Transcranial Doppler Ultrasonography in Children With Sickle Cell Anemia,” American Journal of Preventive Medicine 51, no. 1 (2016): S10–16, https://doi.org/10.1016/j. amepre.2016.01.021.

271 “N.C. Medicaid: Medicaid and Health Choices Transcranial Doppler Studies Clinical Coverage Policy No: 1A-19 Amended,” February 1, 2021, https://medicaid.ncdhhs.gov/media/8332/open.

272 Phillips et al., “Identified Barriers and Facilitators to Stroke Risk Screening in Children with Sickle Cell Anemia.”

273 Robert J. Adams et al., “Prevention of a First Stroke by Transfusions in Children with Sickle Cell Anemia and Abnormal Results on Transcranial Doppler Ultrasonography,” New England Journal of Medicine 339, no. 1 (1998): 5–11.

274 Cherry et al., “The Clinical Effectiveness and Cost-Effectiveness of Primary Stroke Prevention in Children with Sickle Cell Disease.”

275 McCarville et al., “Evaluation of a Comprehensive Transcranial Doppler Screening Program for Children with Sickle Cell Anemia.”

276 Crosby et al., “Implementation of a Process for Initial Transcranial Doppler Ultrasonography in Children With Sickle Cell Anemia.”

277 McCarville et al., “Evaluation of a Comprehensive Transcranial Doppler Screening Program for Children with Sickle Cell Anemia.”

278 McCarville et al.

279 “A Public Health Strategic Plan to Address Sickle Cell Disease Across the Lifespan 2015-2018” (Michigan Department of Health and Human Services Lifecourse Epidemiology & Genomics Division - Hemoglobinopathy Quality Improvement Program, October 2015), https://www.michigan.gov/documents/mdhhs/MDHHS_Final_SCD_ Strategic_Plan_504325_7.pdf.

280 “Sickle Cell Disease Study Committee: Report to the General Assembly,” June 30, 2016, https://www.scstatehouse. gov/CommitteeInfo/SickleCellDiseaseStudyCommittee/SickleCellDiseaseReportToTheGeneralAssembly.pdf.

281 “A Call to Action: South Carolina Sickle Cell Disease State Plan 2019-2022” (The South Carolina Sickle Cell Disease Advocacy Team, October 2018), https://scdhec.gov/sites/default/files/Library/CR-012241.pdf.

282 “State of North Carolina Department of Health and Human Services Division of Health Benefits: Revised and Restated Request for Proposal #: 30-190029-DHB Prepaid Health Plan Services” (State of North Carolina Department of Health and Human Services Division of Health Benefits, January 25, 2019), https://files.nc.gov/ncdma/Contract-30-190029-DHB-Prepaid-Health-Plan-Services.pdf.

283 Brandow et al., “American Society of Hematology 2020 Guidelines for Sickle Cell Disease: Management of Acute and Chronic Ppain.”

284 Jena L Welch-Coltrane et al., “Implementation of Individualized Pain Care Plans Decreases Length of Stay and Hospital Admission Rates for High Utilizing Adults with Sickle Cell Disease,” Pain Medicine 22, no. 8 (August 1, 2021): 1743–52, https://doi.org/10.1093/pm/pnab092.

285 “State of North Carolina Department of Health and Human Services Division of Health Benefits: Revised and Restated Request for Proposal #: 30-190029-DHB Prepaid Health Plan Services,” January 25, 2019.

286 Paula Chatterjee and Karen E. Joynt, “Do Cardiology Quality Measures Actually Improve Patient Outcomes?,” Journal of the American Heart Association 3, no. 1 (n.d.): e000404, https://doi.org/10.1161/JAHA.113.000404.

287 “National Quality Forum 2797: Transcranial Doppler Ultrasonography Screening Among Children with Sickle Cell Anemia,” May 4, 2016, https://www.qualityforum.org/QPS/2797.

288 “National Quality Forum 3166: Antibiotic Prophylaxis Among Children with Sickle Cell Anemia,” July 2, 2021, https:// www.qualityforum.org/QPS/3166.

289 “National Quality Forum 3595: Hydroxyurea Use Among Children with Sickle Cell Anemia,” accessed December 7, 2021, https://www.qualityforum.org/QPS/3595.

290 “NQF: Quality Positioning SystemTM,” National Quality Forum, n.d., https://www.qualityforum.org/QPS/QPSTool.aspx.

291 “Michigan Department of Health and Human Services Comprehensive Quality Strategy 2020-2023” (Michigan Department of Health and Human Services, December 17, 2020), https://www.michigan.gov/documents/mdhhs/ Quality_Strategy_2015_FINAL_for_CMS_112515_657260_7.pdf.

292 Nancy McCall and Deborah Peikes, “Tricky Problems with Small Numbers: Methodological Challenges and Possible Solutions for Measuring PCMH and ACO Performance” (Robert Wood Johnson Foundation, April 2016), https://www shvs.org/wp-content/uploads/2016/04/SHVS-Mathematica-Tricky-Problems-with-Small-Numbers-April-2016.pdf.

293 McCall and Peikes.

294 “State of North Carolina Department of Health and Human Services Division of Health Benefits: Revised and Restated Request for Proposal #: 30-190029-DHB Prepaid Health Plan Services,” January 25, 2019.

295 Masese et al., “Barriers and Facilitators to Care for Individuals with Sickle Cell Disease in Central North Carolina,” 2019.

296 “2019 Quality Incentive Report: A Report on the Quality Incentive Program in New York State” (New York State Department of Health, 2020), https://www.health.ny.gov/health_care/managed_care/reports/docs/quality_incentive/ quality_incentive_2019.pdf.

297 “Medicaid Pay-for-Performance: Ongoing Challenges, New Opportunities,” The Commonwealth Fund, accessed December 7, 2021, https://www.commonwealthfund.org/publications/newsletter-article/medicaid-pay-performanceongoing-challenges-new-opportunities.

298 Thomas Hartman and Kathryn Kuhmerker, “Pay-for-Performance in State Medicaid Programs: A Survey of State Medicaid Directors and Programs - Appendix B. State Pay for Performance Program Summaries” (The Commonwealth Fund, n.d.); “Medicaid Pay-for-Performance: Ongoing Challenges, New Opportunities,” The Commonwealth Fund, accessed December 7, 2021, https://www.commonwealthfund.org/publications/newsletterarticle/medicaid-pay-performance-ongoing-challenges-new-opportunities.

299 Meredith B. Rosenthal et al., “Pay for Performance in Medicaid: Evidence from Three Natural Experiments,” Health Services Research 51, no. 4 (August 2016): 1444–66, https://doi.org/10.1111/1475-6773.12426.

300 “HHS Office of Minority Health Awards $1.25 Million to Improve Treatment for Children with Sickle Cell Disease,” U.S. Department of Health and Human Services Office of Minority Health, October 1, 2020, https://www.minorityhealth. hhs.gov/omh/Content.aspx?ID=17509&lvl=2&lvlid=8.

301 McCall and Peikes, “Tricky Problems with Small Numbers: Methodological Challenges and Possible Solutions for Measuring PCMH and ACO Performance.”

302 Casey Quinn et al., “Estimating the Clinical Pipeline of Cell and Gene Therapies and Their Potential Economic Impact on the US Healthcare System,” Value in Health 22, no. 6 (2019): 621–26, https://doi.org/10.1016/j. jval.2019.03.014.

303 Julie Kanter et al., “Resolution of Sickle Cell Disease Manifestations in Patients Treated with Lentiglobin Gene Therapy: Updated Results from the Phase 1/2 Hgb-206 Group C Study,” Blood 134, no. Supplement_1 (2019): 990.

304 Patrick DeMartino et al., “A Budget Impact Analysis of Gene Therapy for Sickle Cell Disease: The Medicaid Perspective,” JAMA Pediatrics 175, no. 6 (2021): 617–23.

305 “Bluebird Prices Gene Therapy at 1.58 Million Euros over 5 Years,” Reuters, June 14, 2019, sec. Healthcare & Pharma, https://www.reuters.com/article/us-bluebird-bio-gene-therapy-price-idUSKCN1TF1HP.

306 Jillian Mckoy, “Subscription-Based Payment Models May Improve Access to Hepatitis C Medications,” Healthcare Costs, August 27, 2021, https://www.bu.edu/sph/news/articles/2021/subscription-based-payment-models-mayimprove-access-to-hepatitis-c-medications/.

307 Samantha G. Auty, Paul R. Shafer, and Kevin N. Griffith, “Medicaid Subscription-Based Payment Models and Implications for Access to Hepatitis C Medications,” JAMA Health Forum 2, no. 8 (2021): e212291, https://doi. org/10.1001/jamahealthforum.2021.2291.

308 Harry Liu and Abdrew Mulcahy, “Why States’ ‘Netflix Model’ Prescription Drug Arrangements Are No Silver Bullet,” Health Affairs, July 1, 2020, https://www.healthaffairs.org/do/10.1377/hblog20200629.430545/full/.

309 Lanzkron, Carroll, and Haywood, “The Burden of Emergency Department Use for Sickle Cell Disease.”

310 DeMartino et al., “A Budget Impact Analysis of Gene Therapy for Sickle Cell Disease.”

311 Jonathan Salcedo, Jenniffer Bulovic, and Colin M. Young, “Cost-Effectiveness of a Hypothetical Cell or Gene Therapy Cure for Sickle Cell Disease,” Scientific Reports 11, no. 1 (2021): 10838.

312 Rebecca Pifer, “CMS Clears Louisiana Medicaid ‘Netflix Model’ for Hep C Drugs,” Healthcare Dive, June 26, 2019, https://www.healthcaredive.com/news/cms-clears-louisiana-medicaid-netflix-model-for-hep-c-drugs/557696/.

313 “CMS Approves Louisiana State Plan Amendment for Supplemental Rebate Agreements Using a Modified Subscription Model for Hepatitis C Therapies in Medicaid,” CMS.gov, June 26, 2019, https://www.cms.gov/ newsroom/press-releases/cms-approves-louisiana-state-plan-amendment-supplemental-rebate-agreements-usingmodified.

314 Mckoy, “Subscription-Based Payment Models May Improve Access to Hepatitis C Medications.”

315 Auty, Shafer, and Griffith, “Medicaid Subscription-Based Payment Models and Implications for Access to Hepatitis C Medications.”

316 Auty, Shafer, and Griffith.

317 North Carolina Department of Health and Human Services, “North Carolina’s Care Management Strategy under Managed Care” (North Carolina Department of Health and Human Services, March 9, 2018), https://files.nc.gov/ ncdhhs/documents/CareMgmt-AMH_ConceptPaper_FINAL_20180309.pdf. 7

318 North Carolina Department of Health and Human Services. 7

319 NC Department of Health and Human Services, “Racial and Ethnic Health Disparities in North Carolina: North Carolina Health Equity Report 2018,” 2018, https://schs.dph.ncdhhs.gov/SCHS/pdf/MinorityHealthReport_Web_2018. pdf.

320Division of Health | NC Medicaid, “Program Guide: Management of High-Risk Pregnancies and At-Risk Children in Managed Care” (NC Department of Health and Human Services, May 12, 2021), https://files.nc.gov/ncdma/ProgramGuide-for-Care-Management-of-High--Risk-Pregnancies-and-At-Risk-Children-in-Managed-Care-5.12.pdf. 8

321 “The Maternal, Infant, and Early Childhood Home Visiting Program” (U.S. Human Resources and Services Administration, July 2021), https://mchb.hrsa.gov/sites/default/files/mchb/about-us/program-brief.pdf.

322 “WCH: Maternal, Infant, and Early Childhood Home Visiting Program,” NC DHHS, accessed December 7, 2021, https://publichealth.nc.gov/wch/aboutus/ebhv.htm.

323 “Nurse-Family Partnership: North Carolina 2021 State Profile” (Nurse-Family Partnership, June 2021), https://www. nursefamilypartnership.org/wp-content/uploads/2021/06/NC_2021-State-Profile.pdf.

324 Rachel Herzfeldt-Kamprath, Maura Calysn, and Thomas Huelskoetter, “Medicaid and Home Visiting: Best Practices from States,” January 25, 2017, https://www.americanprogress.org/article/medicaid-and-home-visiting/.

325 Alex F. Peahl et al., “Right-Sizing Prenatal Care to Meet Patients’ Needs and Improve Maternity Care Value,” Obstetrics & Gynecology 135, no. 5 (2020): 1027–37, https://doi.org/10.1097/AOG.0000000000003820.

326 “North Carolina Pregnancy Medical Homes,” Zero to Three, September 20, 2016, https://www.zerotothree.org/ resources/866-north-carolina-pregnancy-medical-homes.

327 “Nurse-Family Partnership: North Carolina 2021 State Profile.”

328 Lenette Azzi-Lessing, “Home Visitation Programs: Critical Issues and Future Directions,” Early Childhood Research Quarterly 26, no. 4 (2011): 387–98.

329 “Maternal Infant Health Program (MIHP),” U.S. DHHS, Home Visiting Evidence of Effectiveness, 2019, https:// homvee.acf.hhs.gov/effectiveness/Maternal%20Infant%20Health%20Program%20%28MIHP%29/In%20Brief.

330 Nadia Islam et al., “Integrating Community Health Workers Within Patient Protection and Affordable Care Act Implementation,” Journal of Public Health Management and Practice: JPHMP 21, no. 1 (2015): 42–50, https://doi. org/10.1097/PHH.0000000000000084.

331 Nadia Islam et al., “Integrating Community Health Workers Within Patient Protection and Affordable Care Act Implementation,” Journal of Public Health Management and Practice: JPHMP 21, no. 1 (2015): 42–50, https://doi. org/10.1097/PHH.0000000000000084.

332 Nadia Islam et al., “Integrating Community Health Workers Within Patient Protection and Affordable Care Act Implementation,” Journal of Public Health Management and Practice: JPHMP 21, no. 1 (2015): 42–50, https://doi. org/10.1097/PHH.0000000000000084.

333 Syed K. Hussaini, Paul Holley, and Douglas Ritenour, “Reducing Low Birth Weight Infancy: Assessing the Effectiveness of the Health Start Program in Arizona,” Maternal and Child Health Journal 15, no. 2 (2011): 225–33.

334 Lee Anne Roman et al., “Addressing Mental Health and Stress in Medicaid-Insured Pregnant Women Using a Nurse-Community Health Worker Home Visiting Team,” Public Health Nursing 24, no. 3 (2007): 239–48, https://doi. org/10.1111/j.1525-1446.2007.00630.x.

335 “Maternal Infant Health Program (MIHP).”

336 Johnson K., “Medicaid and Home Visiting: The State of States’ Approaches” (Johnson Group Consulting, Inc, January 2019). 18

337 Cristian I. Meghea et al., “Statewide Medicaid Enhanced Prenatal Care Programs and Infant Mortality,” Pediatrics 136, no. 2 (2015): 334–42, https://doi.org/10.1542/peds.2015-0479.

338 “NC Department of Health and Human Services: Implementing Recommendations: NC Community Health Worker Initiative,” July 15, 2021, https://nciom.org/wp-content/uploads/2021/03/NCCHW-Initiative-Update-7-15-21.pdf.

339 “The North Carolina Community Health Worker and Support Services Programs: Promoting Safe Quarantine and Isolation for COVID-19 in Marginalized Populations” (NC Department of Health and Human Services, March 2021), https://www.pih.org/sites/default/files/lc/LT-CRC_case_study_NC_march_2021_Final.pdf.

340 Maggie Clark and Allexa Gardner, “More States Moving to Extend Medicaid Postpartum Coverage Option Under ARP, Why Are Georgia and Missouri Limiting Its Reach?,” Georgetown University Health Policy Institute Center for Children and Families, May 20, 2021, https://ccf.georgetown.edu/2021/05/20/medicaid-postpartum-coverage-optiongeorgia-missouri/.

341 Yhenneko J. Taylor, Tsai-Ling Liu, and Elizabeth A. Howell, “Insurance Differences in Preventive Care Use and Adverse Birth Outcomes Among Pregnant Women in a Medicaid Nonexpansion State: A Retrospective Cohort Study,” Journal of Women’s Health 29, no. 1 (2020): 29–37. Taylor, Liu, and Howell. 30 and 32

342 Taylor, Liu, and Howell, “Insurance Differences in Preventive Care Use and Adverse Birth Outcomes Among Pregnant Women in a Medicaid Nonexpansion State: A Retrospective Cohort Study.” 34

343 Arden Handler et al., “A Two-Generation Approach to Postpartum Care: Building on the Well-Baby Visit,” Birth 48, no. 3 (2021): 347–56.

344 Handler et al.

345 Kristin Allen, “Strategies to Support Postpartum Visits for Women in Medicaid,” Health Management Associates, August 22, 2019, https://www.healthmanagement.com/blog/strategies-to-support-postpartum-visits-for-women-inmedicaid/; Rachel S. Ruderman et al., “Provider Perspectives on Barriers and Facilitators to Postpartum Care for Low-Income Individuals,” Women’s Health Reports 2, no. 1 (November 1, 2021): 254–62, https://doi.org/10.1089/ whr.2021.0009.

346 Allen, “Strategies to Support Postpartum Visits for Women in Medicaid”; Ruderman et al., “Provider Perspectives on Barriers and Facilitators to Postpartum Care for Low-Income Individuals.”

347 Handler et al., “A Two-Generation Approach to Postpartum Care.”

348 Sukanya Srinivasan et al., “Delivering Interconception Care During Well-Child Visits: An IMPLICIT Network Study,” The Journal of the American Board of Family Medicine 31, no. 2 (March 1, 2018): 201–10; John Lines, “One Appointment, Multiple Healthier Outcomes: Screening Moms at Well-Baby Visits,” Penn Medicine News, February 9, 2018, https://www.pennmedicine.org/news/news-blog/2018/february/one-appointment-multiple-healthier-outcomesscreening-moms-at-well-baby-visits.

349 IMPLICIT NETWORK and March of Dimes, “IMPLICIT Interconception Care Toolkit” (Family Medicine Consortium, 2016), https://ohioaap.org/wp-content/uploads/2021/09/Implicit-Toolkit.pdf. 18

350 Megan Lent, “Virginia’s BabyCare Program: Working to Improve Birth Outcomes through Medicaid” (National Academy for State Health Policy, November 2018), https://www.nashp.org/wp-content/uploads/2018/12/BabycareVA-Fact-Sheet.pdf. 2-3

351 Lynn M. Yee et al., “Using a Patient Navigator to Improve Postpartum Care in an Urban Women’s Health Clinic,” Obstetrics and Gynecology 129, no. 5 (2017): 925–33.

352 Alliance for Innovation on Maternal Health, “Postpartum Discharge Bundle” (American College of Obstetricians and Gynecologists, 2021), https://safehealthcareforeverywoman.org/wp-content/uploads/FINAL-Update_AIM_Bundle_ PPDT-1.pdf.

353 Alison M. Stuebe et al., “Consensus Bundle on Postpartum Care Basics: From Birth to the Comprehensive Postpartum Visit,” Obstetrics & Gynecology 137, no. 1 (2021): 33–40.

354 Diana Rodin et al., “Strategies to Promote Postpartum Visit Attendance Among Medicaid Participants,” Journal of Women’s Health 28, no. 9 (2019): 1246–53; Centers for Medicare & Medicaid Services Maternal & Infant Health Initiative, “Resources on Strategies to Improve Postpartum Care Among Medicaid and CHIP Populations,” February

2015.

355 “Maternal Infant Health Program (MIHP).”

356 Lilo Stainton, “Home Visits Boost Health of Newborns, Mothers,” NJ Spotlight News, July 30, 2021, https://www. njspotlightnews.org/2021/07/new-nj-law-provides-home-based-wellness-checks-for-mothers-and-newborns/.

357 Kenneth A. Dodge et al., “Effect of a Community Agency–Administered Nurse Home Visitation Program on Program Use and Maternal and Infant Health Outcomes: A Randomized Clinical Trial,” JAMA Network Open 2, no. 11 (November 1, 2019): e1914522.

358 “SistasCaring4Sistas Doula Services: What Doulas Do,” MAHEC - Mountain Area Health Education Center, accessed December 6, 2021, https://mahec.net/patient-information/ob-gyn-care/doula-services/what-doulas-do.

359 Cara B. Safon et al., “Doula Care Saves Lives, Improves Equity, And Empowers Mothers. State Medicaid Programs Should Pay For It,” Health Affairs Blog, May 26, 2021, https://www.healthaffairs.org/do/10.1377/ hblog20210525.295915/full/.

360 Katy Backes Kozhimannil et al., “Doula Care, Birth Outcomes, and Costs Among Medicaid Beneficiaries,” American Journal of Public Health 103, no. 4 (2013): e113–21.

361 Katy B Kozhimannil et al., “Modeling the Cost Effectiveness of Doula Care Associated with Reductions in Preterm Birth and Cesarean Delivery,” Birth (Berkeley, Calif.) 43, no. 1 (2016): 20–27.

362 Kozhimannil et al., “Doula Care, Birth Outcomes, and Costs Among Medicaid Beneficiaries.”

363 Katy Backes Kozhimannil et al., “Doula Care Supports Near-Universal Breastfeeding Initiation among Diverse, Low-Income Women,” Journal of Midwifery & Women’s Health 58, no. 4 (2013): 378–82; Laurie Zephyrin et al., “Community-Based Models to Improve Maternal Health Outcomes and Promote Health Equity,” The Commonwealth Fund, Data Brief, March 4, 2021, https://www.commonwealthfund.org/publications/issue-briefs/2021/mar/communitymodels-improve-maternal-outcomes-equity.

364 Kozhimannil et al., “Doula Care Supports Near-Universal Breastfeeding Initiation among Diverse, Low-Income Women.”

365 Kozhimannil et al.

366 “Healthy Blue Member Handbook: NC Medicaid Managed Care.”

367 “WellCare of North Carolina - NC Medicaid Managed Care Member Handbook.”

368 “UnitedHealthcare NC Medicaid Managed Care Member Handbook.”

369 Hannah Critchfield, “Program Seeks to Increase Number of Black Doulas in NC,” North Carolina Health News, March 29, 2021, http://www.northcarolinahealthnews.org/2021/03/29/program-seeks-to-increase-number-of-blackdoulas-in-nc/; Akira Kyles, “‘We Are an Asset’: Fayetteville Doula Aims to Have Doula Recognized in the Healthcare System,” The Fayetteville Observer, September 4, 2021, https://www.fayobserver.com/story/news/2021/09/04/ fayetteville-doula-addresses-maternal-care-and-racial-disparities-momnibus-healthcare/5601621001/.

370 Katy B. Kozhimannil et al., “Potential Benefits of Increased Access to Doula Support during Childbirth,” The American Journal of Managed Care 20, no. 8 (2014): e340–52; Kozhimannil et al., “Doula Care, Birth Outcomes, and Costs Among Medicaid Beneficiaries.”

371 Kozhimannil et al., “Doula Care, Birth Outcomes, and Costs Among Medicaid Beneficiaries”; Kozhimannil et al., “Potential Benefits of Increased Access to Doula Support during Childbirth.”

372 Kozhimannil et al., “Potential Benefits of Increased Access to Doula Support during Childbirth.”

373 Critchfield, “Program Seeks to Increase Number of Black Doulas in NC.”

374 Kenneth J. Gruber, Susan H. Cupito, and Christina F. Dobson, “Impact of Doulas on Healthy Birth Outcomes,” The Journal of Perinatal Education 22, no. 1 (2013): 49–58, https://doi.org/10.1891/1058-1243.22.1.49.

375 Lisa Rab, “The Secret to Saving the Lives of Black Mothers and Babies,” Politico, December 15, 2019, https://www. politico.com/news/magazine/2019/12/15/black-mothers-matter-079532.

376 “Doula Medicaid Project: Current State Doula Medicaid Efforts,” National Health Law Program, Fall 2021, https:// healthlaw.org/doulamedicaidproject/.

377 Kozhimannil et al., “Modeling the Cost Effectiveness of Doula Care Associated with Reductions in Preterm Birth and Cesarean Delivery.”

378 Hannah Critchfield, “Sweeping Legislation Aims to Combat Black Maternal Mortality,” North Carolina Health News, April 15, 2021, http://www.northcarolinahealthnews.org/2021/04/15/sweeping-legislation-aims-to-combat-blackmaternal-mortality/.

379 Jeannette R. Ickovics et al., “Cluster Randomized Controlled Trial of Group Prenatal Care: Perinatal Outcomes Among Adolescents in New York City Health Centers,” American Journal of Public Health 106, no. 2 (2016): 359–65; Jeannette R. Ickovics et al., “Effects of Group Prenatal Care on Psychosocial Risk in Pregnancy: Results from a Randomised Controlled Trial,” Psychology & Health 26, no. 2 (2011): 235–50.

380 Jamila Taylor and Christy M. Gamble, “Suffering in Silence: Mood Disorders Among Pregnant and Postpartum Women of Color,” Center for American Progress, November 17, 2017.

381 “Preterm Birth | CDC,” Centers for Disease Control and Prevention | Reproductive Health| Maternal and Infant Health| Maternal and Infant Health, November 1, 2021, https://www.cdc.gov/reproductivehealth/maternalinfanthealth/ pretermbirth.htm; R. Su et al., “Relationship of Maternal Birth Weight on Maternal and Neonatal Outcomes: A Multicenter Study in Beijing,” Journal of Perinatology 36, no. 12 (2016): 1061–66.

382 Villarosa, “Why America’s Black Mothers and Babies Are in a Life-or-Death Crisis.”

383 Saraswathi Vedam et al., “The Giving Voice to Mothers Study: Inequity and Mistreatment during Pregnancy and Childbirth in the United States,” Reproductive Health 16 (2019): 77.

384 Taylor, Liu, and Howell, “Insurance Differences in Preventive Care Use and Adverse Birth Outcomes Among Pregnant Women in a Medicaid Nonexpansion State: A Retrospective Cohort Study.”

385 “Child and Family Health: Pew-MacArthur Results First Initiative” (North Carolina Office of State Budget and Management, May 2019), https://www.osbm.nc.gov/media/956/download.

386 “UnitedHealthcare and UWH of North Carolina to Address Maternal Health Needs With Group Prenatal Care Initiative,” Business Wire, October 20, 2021, https://www.businesswire.com/news/home/20211020005147/en/ UnitedHealthcare-and-UWH-of-North-Carolina-to-Address-Maternal-Health-Needs-With-Group-Prenatal-CareInitiative.

387 Brittany M. Byerley and David M. Haas, “A Systematic Overview of the Literature Regarding Group Prenatal Care for High-Risk Pregnant Women,” BMC Pregnancy and Childbirth 17 (2017): 329, https://doi.org/10.1186/s12884-0171522-2.

388 E. B. Carter et al., “Group Versus Traditional Prenatal Care in Low-Risk Women Delivering At Term: A Retrospective Cohort Study,” Journal of Perinatology 37, no. 7 (2017): 769–71, https://doi.org/10.1038/jp.2017.33.

389 Byerley and Haas, “A Systematic Overview of the Literature Regarding Group Prenatal Care for High-Risk Pregnant Women.”

390 Carter et al., “Group versus Traditional Prenatal Care in Low-Risk Women Delivering at Term.”

391 Taylor, Liu, and Howell, “Insurance Differences in Preventive Care Use and Adverse Birth Outcomes Among Pregnant Women in a Medicaid Nonexpansion State: A Retrospective Cohort Study.”

392 Adrianne M Smith, Mehak Zainab, and Brad Lian, “Effects of CenteringPregnancy on Pregnancy Outcomes and Health Disparities in Racial Groups versus Traditional Prenatal Care,” Journal of the Georgia Public Health Association 8, no. 1 (2020); Elizabeth Patberg et al., “Postpartum Contraceptive Use and Other Reproductive Health Outcomes Among CenteringPregnancy Group Prenatal Care Participants,” Journal of Women’s Health 30, no. 7 (2021): 990–96, https://doi.org/10.1089/jwh.2019.8241; Jacqueline H. Grant et al., “Implementing Group Prenatal Care in Southwest Georgia Through Public–Private Partnerships,” Maternal and Child Health Journal 22, no. 11 (2018): 1535–42, https://doi.org/10.1007/s10995-018-2576-0.

393 Ahn et al., “Initiatives to Reduce Maternal Mortality and Severe Maternal Morbidity in the United States.”

394 “North Carolina Pregnancy Medical Home,” Fact Sheet (MACPAC, September 2021); Chelsea Abshire et al., “The Impact of CenteringPregnancy Group Prenatal Care on Birth Outcomes in Medicaid Eligible Women,” Journal of Women’s Health 28, no. 7 (2019): 919–28, https://doi.org/10.1089/jwh.2018.7469.

395 “Prenatal-to-3 State Policy Roadmap 2021: Group Prenatal Care,” Prenatal-to-3 Policy, 2021, https://pn3policy.org/ pn-3-state-policy-roadmap-2021/us/group-prenatal-care/.

396 “North Carolina Pregnancy Medical Home.”

397 “North Carolina Pregnancy Medical Home.”

398 “Certified Midwife Credential,” American College of Nurse-Midwives, accessed December 6, 2021, https://www midwife.org/certified-midwife-credential.

399 Saraswathi Vedam et al., “Mapping Integration of Midwives across the United States: Impact on Access, Equity, and Outcomes,” ed. Dongmei Li, PLOS ONE 13, no. 2 (2018): e0192523.

400 Vedam et al.

401 Vedam et al.

402 “North Carolina Health Professional Supply Data: Certified Nurse Midwives per 10,000 Population by County, North Carolina, 2020,” Sheps Health Workforce NC, accessed December 6, 2021, https://nchealthworkforce.unc.edu/ interactive/supply/.

403 Russ Bowen, “How Midwives Are Helping to Fill OB/GYN Gap in North Carolina,” CBS17, August 25, 2021, https:// www.cbs17.com/news/north-carolina-news/how-midwives-are-helping-to-fill-ob-gyn-gap-in-north-carolina/.

404 Vedam et al., “Mapping Integration of Midwives across the United States.”

405 Sarah Delia, “Midwife Care Is Dramatically Different In NC, SC,” WFAE 90.7 - Charlotte’s NPR News Source, June 1, 2017, https://www.wfae.org/health/2017-06-01/midwife-care-is-dramatically-different-in-nc-sc.

406 Waldman, “How Hospitals Are Failing Black Mothers.”

407 Roosa Tikkanen et al., “Maternal Mortality and Maternity Care in the United States Compared to 10 Other Developed Countries,” Issue Briefs, Commonwealth Fund, 2020.

408 Christopher J. Conover and Robert Richards, “Economic Benefits of Less Restrictive Regulation of Advanced Practice Registered Nurses in North Carolina: An Analysis of Local and Statewide Effects on Business Activity” (Duke University, Center for Health Policy and Inequalities Research, February 2015).

409 Vedam et al., “The Giving Voice to Mothers Study.”

410 Y. Tony Yang, Laura B. Attanasio, and Katy B. Kozhimannil, “State Scope of Practice Laws, Nurse-Midwifery Workforce, and Childbirth Procedures and Outcomes,” Women’s Health Issues 26, no. 3 (2016): 262–67, https://doi org/10.1016/j.whi.2016.02.003.

411 “FAQs on NCOGS Certified Nurse Midwife Policy,” North Carolina Obstetrical & Gynecological Society, March 3, 2017, https://www.ncmedsoc.org/wp-content/uploads/2013/06/FAQs-NCOGS-Policy-on-CNMs-March-2017.pdf.

412 Vedam et al., “The Giving Voice to Mothers Study.”

413 Declercq and Zephyrin, “Severe Maternal Morbidity in the United States.”

414 Taylor and Gamble, “Suffering in Silence.”

415 Jamila Taylor et al., “Eliminating Racial Disparities in Maternal and Infant Mortality: A Comprehensive Policy Blueprint,” Center for American Progress, May 2019.

416 Taylor and Gamble, “Suffering in Silence.”

417 “North Carolina Pregnancy Medical Home.”

418 Clinical Policy and Programs, “Postpartum Depression Screening | NC Medicaid,” NC DHHS, January 5, 2018, https://medicaid.ncdhhs.gov/blog/2018/01/05/postpartum-depression-screening.

419 MACPAC, “Inventory of State-Level Medicaid Policies, Programs, and Initiatives to Improve Maternity Care and Outcomes” (MACPAC, March 2020), https://www.macpac.gov/publication/inventory-of-state-level-medicaid-policiesprograms-and-initiatives-to-improve-maternity-care-and-outcomes/.

420 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.”

421 Vikki Wachino, “Maternal Depression Screening and Treatment: A Critical Role for Medicaid in the Care of Mothers and Children” (Center for Medicaid and CHIP Services, n.d.), https://www.medicaid.gov/federal-policy-guidance/ downloads/cib051116.pdf.

422 “State of North Carolina Department of Health and Human Services Division of Health Benefits: Revised and Restated Request for Proposal #: 30-190029-DHB Prepaid Health Plan Services” (State of North Carolina Department of Health and Human Services Division of Health Benefits, January 25, 2019), https://files.nc.gov/ncdma/Contract-30-190029-DHB-Prepaid-Health-Plan-Services.pdf.

423 Wachino, “Maternal Depression Screening and Treatment: A Critical Role for Medicaid in the Care of Mothers and Children.”

424 MACPAC, “Inventory of State-Level Medicaid Policies, Programs, and Initiatives to Improve Maternity Care and 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.”

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.”