Less Than Half of Kids With Sickle Cell Anemia Receive Recommended Care
Less than half of children with sickle cell anemia received potentially lifesaving screenings for stroke in 2019, and about the same number received hydroxyurea, a medication that can reduce pain and life-threatening complications of the disease, according to a new report from the federal Centers for Disease Control and Prevention.
Sickle cell anemia, the leading cause of stroke in children, affects roughly 100,000 Americans, primarily Black people. The inherited blood disease can shorten a person’s expected life span by more than 20 years and is associated with severe pain and a variety of potentially life-threatening complications.
“These complications are preventable — not inevitable,” said Karen Remley, director of the CDC’s National Center on Birth Defects and Developmental Disabilities.
But sickle cell anemia patients report barriers to receiving the recommended screening and medication. Those include structural racism and lack of access to health care, particularly specialists with expertise in treating the disease. And some patients say that health care providers dismiss their symptoms when they do receive care, according to the CDC.
For children, the pain and related complications can be debilitating and require complex medical treatment.
In the study, the CDC analyzed data from roughly 3,300 children with sickle cell anemia who were enrolled in Medicaid during 2019. About half of the children aged 2-9 and 38% of those aged 10-16 received stroke screenings.
Roughly 40% of children aged 2-9 and half of those aged 10-16 used hydroxyurea.
In 2019, Congress enacted a new Medicaid option that provides additional funding states can use to coordinate care among multiple specialists and health care providers for children with complex diseases, including sickle cell anemia.
In its report this week, the CDC recommended that health care providers integrate stroke screening with other health care services for children with the disease. The agency also called on providers to report and respond to racist behavior in their institutions and to protect patients and encourage them to report concerns about unequal treatment.
The agency also encouraged community-based organizations to educate patients, parents and health care providers on the importance of annual screening to prevent childhood stroke and help them schedule and get transportation to appointments.