Prevalence of Sickle Cell Disease among Medicare Fee-for-Service Beneficiaries Age 18-75 Years, in 2016

Volume 15 - June 2019

Prevalence of Sickle Cell Disease among Medicare Fee-for-Service Beneficiaries Age 18-75 Years, in 2016

Key Findings:


  • Among the 11,790 Medicare FFS beneficiaries identified in 2016, the national SCD prevalence rate, rate per 1,000 beneficiaries, was 0.20, and the District of Columbia (0.99) had the highest SCD prevalence rate.
  • Among Medicare FFS beneficiaries with SCD, 98.3% had an outpatient visit, 75.5% utilized the emergency department, and 59.3% had an inpatient stay and those aged 18-45 years, on average, had greater hospital utilization.
  • Among Medicare FFS beneficiaries with SCD, the most common chronic conditions included hypertension (65.8%), fibromyalgia (64.9%) depression (51.3%), and chronic kidney disease (47.0%).
  • Overall, more than 70% of Medicare FFS beneficiaries with SCD were dual-eligible, qualified for Medicare and Medicaid.
  • More than four out of five Medicare FFS beneficiaries with SCD were non-elderly (less than 65 years old) and obtained Medicare coverage through disability insurance benefits.



Medicare is a federal health insurance program administered by the Centers for Medicare & Medicaid Services (CMS) for people age 65 years or older, as well as those with disabilities or End-Stage Renal Disease (ESRD). Studies suggest that an increasing number of people with sickle cell disease (SCD) are living to be age-eligible for Medicare than previously reported [1]. Additionally, per the Disability Evaluation Under Social Security, SCD is listed as an impairment that may qualify for the disability coverage through Medicare. Furthermore, nearly 12% of patients with SCD have renal failure, and their median age of ESRD onset is 37 years [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. Multiple medical advancements and health care interventions [3] have transformed 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 [4].

Despite a growing number of patients with SCD being eligible for Medicare under one of the aforementioned categories, few studies have examined demographic characteristics and health utilization patterns among Medicare Fee-for-Service (FFS) beneficiaries with SCD. CMS has released a new SCD indicator in the CMS Chronic Conditions Warehouse (CCW)1 with the hope that it will facilitate analysis by internal and external CCW users of the Medicare and Medicaid SCD population.

This information will be useful for health plans and care providers who aim to improve the quality of care delivered to patients with SCD. Understanding the unique health needs of this vulnerable federally insured population will inform the development of interventions to increase awareness and understanding of people living with SCD.

African American Family


  1. Paulukonis, S.T., J.R. Eckman, A.B. Snyder, et al. Defining Sickle Cell Disease Mortality Using a Population-Based Surveillance System, 2004 through 2008. Public Health Rep, 2016. 131(2): p. 367-375. Available from:
  2. Powars, D.R., L.S. Chan, A. Hiti, et al. Outcome of Sickle Cell Anemia: A 4-Decade Observational Study of 1056 Patients. Medicine (Baltimore), 2005. 84(6): p. 363-376. Available from:
  3. 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:
  4. Hassell, K.L. Population Estimates of Sickle Cell Disease in the US. American Journal of Preventive Medicine, 2010. 38(4): p. S512-S521.
  5. U.S. Department of Health and Human Services-Centers for Medicare & Medicaid Services. Chronic Conditions Data Warehouse. 2019; Available from:
  6. 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:
  7. James, C.V. and S. Wilson-Frederick. The Invisible Crisis: Understanding Pain Management in Medicare Beneficiaries with Sickle Cell Disease. 2018; Available from: (PDF).
  8. Virnig, B. and H. Parsons. Strengths and Limitations of CMS Administrative Data in Research. [cited 2019]; Available from:
Page Last Modified:
09/06/2023 04:51 PM