Children With Sickle Cell Anemia, Using Medicaid Less Likely to Get Stroke Screening, Pain Treatment

In 2019, fewer than half of children ages 2 to 16 with sickle cell disease received recommended screening for stroke, a common complication of the disease.

Few children with sickle cell disease whose health care is covered by Medicaid do not receive the recommended screening they need to prevent stroke or receive recommended medication for pain, the CDC said Tuesday.

Sickle cell disease is the most severe and common subtype of sickle cell disease (SCD), and in 2014, a panel of experts convened by the National Heart, Lung, and Blood Institute issued recommendations to prevent or reduce complications in children and adolescents with sickle cell anemia.

The recommendations included annual screening of children and adolescents aged 2 to 16 years with transcranial Doppler (TCD) ultrasound to identify those at risk of stroke and offering hydroxyurea therapy to children and adolescents 9 months and older to manage pain and reduce acute chest syndrome. Hydroxyurea may also improve anemia and quality of life.

Red blood cell disease affects approximately 100,000 Americans, mostly black and African American. It is already known that the 2 recommendations are underused due to various barriers.

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In this study, published in Morbidity and Mortality Weekly Report (MMWR), from January 1, 2010 to December 13, 2019, researchers analyzed the IBM MarketScan Multi-State Medicaid Database, which contains medical claim data from approximately 24 million Medicaid enrollments from 5 to 15 states (the number of states varies by state Year). TCD screening and the use of hydroxyurea have been defined based on procedural and pharmacy codes.

TCD screening and hydroxyurea use were evaluated in 3,352 children and adolescents with SCA aged 2 to 16 years who were continuously enrolled in Medicaid in 2019. Percent change between 2014 and 2019 and variation by health subgroups were assessed and analyzes were stratified by age.

In 2019, fewer than half of children ages 2 to 16 with sickle cell disease received recommended screening for stroke, a common complication of the disease.

Overall, TCD screening increased from 30% to 38% in children aged 2 to 9 years from 2014 to 2019. For children aged 10 to 16 there was an increase from 43% to 53%.

When using hydroxyurea over the same period, the increase was similar in the younger age group (from 30% to 38%). In the older age group, hydroxyurea consumption increased from 43% to 53%.

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Both stroke screening and hydroxyurea use were highest in children with a high level of health care, including those who had prior complications of the disease.

More than 60% of children and adolescents aged 10 to 16 years used hydroxyurea if they:

  • A recent hospitalization
  • 11 to 30 recent outpatient care visits
  • 3 or more recent visits to the Emergency Department (ED).
  • A recent or previous hospitalization with acute chest syndrome
  • 2 or more pain crises requiring hospitalization in the current year or in a previous year

Hydroxyurea use was highest in the younger age group (47% to 58%) in the same subgroups, except that there was little difference in hydroxyurea use by number of emergency department visits.

Many patients with sickle cell disease have cited barriers to receiving recommended screening and treatment, barriers due to structural racism. Patients have reported feeling stigmatized and dismissed for their symptoms when they receive treatment or do not have access to sickle cell specialists. Other obstacles include parental and provider concerns about possible side effects and the effectiveness of hydroxyurea.

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“We must take action to ensure children with sickle cell disease receive potentially life-saving treatment,” said Debra Houry, MD, MPH, deputy principal director of the CDC, in a statement. “The pain and complications these children often face can be excruciating, debilitating, and last for hours, days, or even weeks. Preventive measures and medications such as hydroxyurea can help reduce the pain and suffering of these children and prolong their lives.”

The researchers recommended that healthcare systems implement quality care strategies and build accountability into electronic health records. They said it’s also important that “strategies include proactively addressing both interpersonal and structural racism.” Additionally, expanding surveillance coverage, currently limited to a few states, would allow the CDC to better understand patient needs and disease outcomes.


Schieve LA, Simmons GM, Payne AB, et al. Application of Recommended Preventive Health Measures to Prevent Select Complications of Sickle Cell Anemia in Children and Adolescents – Select US States, 2019. MMWR Morb Mortal Wkly Rep. Published online September 20, 2022. doi:10.15585/mmwr.mm7139e1

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