Less than half of children aged 2-16 with sickle cell anemia in 2019 received the recommended screening for stroke, a common complication of the disease, according to a new Centers for Disease Control and Prevention (CDC) Vital Signs report.
In addition, the report said many of these children are not receiving the recommended medication, hydroxyurea, which can reduce complications such as pain and acute chest syndrome.
According to the CDC, hydroxyurea can also improve anemia and quality of life.
“We must take action to ensure that children with sickle cell anemia are receiving potentially lifesaving treatment,” CDC Deputy Director Debra Houry said.
“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 said.
Sickle cell anemia is the most severe form of sickle cell disease, which is a red blood cell disorder that primarily affects African-American people. Sickle cell disease affects approximately 100,000 Americans.
Data from more than 3,300 children with sickle cell anemia continuously enrolled in Medicaid during 2019 were analyzed in this report.
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 two-in-five 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 and those with evidence of prior complications from their disease.
The CDC report said many people with sickle cell anemia report barriers – like structural racism – to receiving the recommended screening and treatment.
For example, despite their extensive health care needs, many people with sickle cell anemia do not have access to providers with expertise in treating the disease or report feeling stigmatized and having their symptoms dismissed when they do receive care.
Other barriers include concerns among parents and providers about potential side effects and the effectiveness of hydroxyurea.
In response, the CDC recommends several measures to address the disparity, including health care institutions developing formal reporting systems to safely report concerns about prejudice or inequality and education on the importance of getting an annual screening for stroke.
“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,” Karen Remley, M.D., M.P.H., director, CDC’s National Center on Birth Defects and Developmental Disabilities said.
“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 medication that can help reduce painful episodes.”