Volume 16 - June 2019

Prevalence of Sickle Cell Disease among Medicaid Beneficiaries in 2012

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Key Findings:


  • 55,349 people who were covered by Medicaid were identified with sickle cell disease (SCD).
  • The national prevalence of SCD in the Medicaid population, expressed as a rate per 1,000 beneficiaries, was 0.73.
  • Mississippi (2.20) had the highest SCD prevalence rate, per 1,000 beneficiaries, followed by District of Columbia (1.93), South Carolina (1.77), Louisiana (1.77), and Georgia (1.71).
  • New York (10.59%) and Florida (9.75%) had the two largest populations of Medicaid beneficiaries with SCD.
  • More than one out of five (23.54%) Medicaid beneficiaries with SCD were between the ages of 19-30 years.



Multiple medical advancements and health care interventions [1] have transformed sickle cell disease (SCD), a once fatal childhood disease, into a chronic condition. Previous studies have estimated that approximately 100,000 people are living with SCD in the United States [2]. Sickle cell disease, the most prevalent lifelong genetic blood disorder in the United States, causes the body to produce abnormal red blood cells shaped like sickles or crescents, which fail to properly deliver oxygen to body tissues. This shape change disrupts the normal flow of red blood cells through the blood vessels of the body, ultimately causing excruciating acute and chronic pain episodes (called pain crises). Sickle cell disease affects all racial and ethnic groups; however, in the United States, Black and Hispanic populations are disproportionately impacted. Despite the likelihood of people with SCD living longer, there are no national prevalence estimates on the Medicaid population living with SCD.

African American Family


  1. U.S. Department of Health and Human Services- National Institutes of Health. Evidence-Based Management of Sickle Cell Disease: Expert Panel Report, 2014. 2014; Available from:
  2. Hassell, K.L. Population Estimates of Sickle Cell Disease in the US. American Journal of Preventive Medicine, 2010. 38(4): p. S512-S521.
  3. U.S. Department of Health and Human Services-Centers for Medicare & Medicaid Services. Chronic Conditions Data Warehouse. 2019; Available from:
  4. Snyder, A.B., M. Zhou, R. Theodore, et al. Improving an Administrative Case Definition for Longitudinal Surveillance of Sickle Cell Disease. Public Health Rep, 2019. 134(3): p. 274-281. Available from:
  5. James, C.V. and S. Wilson-Frederick.The Invisible Crisis: Understanding Pain Management in Medicare Beneficiaries with Sickle Cell Disease. 2018; Available from: Data-Highlight.pdf (PDF).
  6. Virnig, B. and H. Parsons. Strengths and Limitations of CMS Administrative Data in Research. [cited 2019; Available from:
  7. James, C.V. On the Path to Health Equity: Improving the Quality of Sickle Cell Disease Care. 2016 September 22, 2016]; Available from:
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08/24/2020 04:04 PM