A study found that less than half of children ages 2 to 16 years with sickle cell anemia are screened for stroke.

Sickle cell anemia is the leading cause of childhood stroke and the most severe form of sickle cell disease, a red blood cell disorder that predominantly affects Black and African-American people and often result in episodes of extreme pain.

The Centers for Disease Control and Prevention (CDC) study analyzed data on 3,300 children with sickle cell anemia enrolled in Medicaid and found that only 47% of children ages 2 to 9 years old and 38% percent of children ages 10 to 16 were assessed for stroke risk. What’s more, a concerning 60% of children were not taking the medication hydroxyurea, which is recommended to reduce pain as well as acute chest syndrome, another common complication of the illness. 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,” said CDC Acting Principal Deputy Director Debra Houry, MD, MPH, in a CDC news release. “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.”

The CDC recommends that health care providers integrate stroke screening into a single, comprehensive visit for children with sickle cell anemia. It also recommends educating patients and their families on the importance of annual stroke screening and the necessary follow-up steps to take. Last, the CDC encourages community-based organizations and partnerships to develop and provide resources for patients and health care providers regarding the prevention of childhood stroke.

“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, MD, MPH, and director of CDC’s National Center on Birth Defects and Developmental Disabilities.