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Many children with sickle cell not receiving proper screening

Father Holding Newborn Baby Son In Nursery

In 2019, less than half of children aged 2–16 years with sickle cell anemia received the recommended screening for stroke, a common complication of the disease, according to a new CDC Vital Signs report. In addition, many of these children are not receiving the recommended medication, hydroxyurea, which can reduce complications such as pain and acute chest syndrome. Hydroxyurea can also improve anemia and quality of life.

Sickle cell anemia is the most severe form of sickle cell disease, which is a red blood cell disorder that primarily affects Black and African-American people. It’s estimated that sickle cell disease affects approximately 100,000 Americans.

“We must take action to ensure that children with sickle cell anemia are receiving potentially lifesaving treatment,” said CDC Acting Principal Deputy Director Debra Houry, M.D., M.P.H.  “The pain and complications these children often experience can be excruciating and debilitating and can last for hours, days, or even weeks. Preventive care and medicines, such as hydroxyurea, can help ease the pain and suffering these children go through, and may extend their lives.”

Data from more than 3,300 children with sickle cell anemia continuously enrolled in Medicaid during 2019 were analyzed in this report. The data came from the IBM® MarketScan® Multi-State Medicaid Database.

Key findings

•  About half (47%) of children aged 2–9 years and 38% of children aged 10–16 years received transcranial Doppler (TCD) ultrasound to assess their risk for stroke. Sickle cell anemia is a leading cause of childhood stroke.

•  Only 2 in 5 children aged 2–9 years and about half of children/teens aged 10–16 years with sickle cell anemia used hydroxyurea.

•  Both the stroke screening and hydroxyurea use were highest among children with high levels of health care use, as well as those with evidence of prior complications from their disease.

“Sickle cell anemia can shorten a person’s life expectancy by more than 20 years and can lead to complications affecting all parts of the body. These complications are preventable—not inevitable. We must do more to help lessen the pain and complications associated with this disease by increasing the number of children who are screened for stroke and using the medication that can help reduce painful episodes,” said Karen Remley, M.D., M.P.H., director, CDC’s National Center on Birth Defects and Developmental Disabilities.

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