A new report from the Centers for Disease Control and Prevention found most children with sickle cell anemia are not receiving screenings for a common complication of the disease.
The latest Vital Signs report by the CDC found, between 2014 and 2019, fewer than half the children, toddler through adolescence, received regular screening for stroke. It also found many of those children are not receiving hydroxyurea, a medication that can reduce complications such as pain and acute chest syndrome.
“We must take action to ensure that children with sickle cell anemia are receiving potentially lifesaving treatment,” said CDC Acting Principal Deputy Director Dr. Debra Houry. “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.”
Houry, along with epidemiologist Laura Schieve for the CDC’s National Center on Birth Defects and Developmental Disabilities, participated in a recent virtual media briefing.
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The study was of 3,300 children with sickle cell anemia who were enrolled in Medicaid.
“This report points out less than half of children two to 16 years of age who were enrolled in Medicaid in 2019 were receiving their recommended annual screening to assess their risk of having a stroke and that screening is known as transcranial doppler ultrasound or TCD screening,” Schieve told reporters. “The vital signs report also notes that only two in five children aged two to nine years of age, and only about half of children and teens aged 10 to 16 years of age, were receiving treatment with hydroxyurea.”
Sickle cell anemia makes red blood cells sticky and they become rigid and crescent or sickle shaped. Those cells can get stuck in small blood vessels, blocking blood flow.
Sickle cell anemia is the most severe form of sickle cell disease. It affects approximately 100,000 people and is most closely associated with African Americans. In addition to strokes, it can lead to kidney issues and reduced life expectancy.
“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 Dr. Karen Remley, director of CDC’s National Center on Birth Defects and Developmental Disabilities.
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The report said many people with sickle cell anemia reported encountering barriers to receiving the recommended screenings, treatment and medications.
“Health care providers can educate themselves, their colleagues and their institutions, about the specialized needs of people with sickle cell anemia, including how racism inhibits optimal care,” Houry said. “For example, despite their extensive health care needs, many people with sickle cell anemia have difficulty accessing appropriate care and report feeling stigmatized and having their symptoms dismissed when they do seek care. Providers can advocate for and listen to their patients to better understand these needs.”
Recommendations include health care providers working with policy makers and advocates to reverse structural racism on sickle cell anemia funding and research. Partners, such as community-based organization, can develop resources for patients and providers to stress the importance of annual screenings to prevent strokes in children.
The full report is available at www.cdc.gov/vitalsigns
