Less than half of children and adolescents with sickle cell anemia who are enrolled in Medicaid are getting recommended screening for stroke, and too few are getting treatment for the disease, according to a new study from the Centers for Disease Control and Prevention (CDC).
“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,” CDC Acting Principal Deputy Director Debra Houry, M.D., M.P.H., said in a press conference Tuesday. “Providers can advocate for and listen to patients to better understand these needs.”
Sickle cell anemia is a severe subtype of sickle cell disease, a group of blood disorders primarily affecting Black and African American people. Sickle cell anemia is a leading cause of stroke among youths.
In 2014, a national panel of experts released Evidence-Based Management of Sickle Cell Disease: Expert Panel Report, 2014, which was endorsed by the AAP. The panel recommended children ages 2-16 years with sickle cell anemia be screened annually for stroke risk using transcranial Doppler (TCD) ultrasound. The group also recommended offering treatment with hydroxyurea to children 9 months and older to reduce severe pain and other complications.
To look at adherence to these recommendations, CDC researchers analyzed data on more than 3,000 children and adolescents with sickle cell anemia enrolled in Medicaid, comparing screening and treatment rates in 2019 and 2014. They published the results today in a new Vital Signs report.
The data showed about 38% of adolescents ages 10-16 years and 47% of children ages 2-9 years received TCD screening in 2019, up from 30% and 43%, respectively, in 2014. About 53% of adolescents and 38% of children received hydroxyurea in 2019, up from 43% and 30%, respectively.
Laura Schieve, Ph.D., an epidemiologist with the CDC’s National Center on Birth Defects and Developmental Disabilities and an author of the report, said barriers to screening and treatment can include discrimination of people with symptoms, limited availability of TCD screening appointments, the need to monitor patients receiving hydroxyurea, a shortage of providers with sickle cell expertise and difficulty for providers trying to coordinate care.
Structural racism in health care must be addressed, according to the CDC. In addition, it recommended more education on sickle cell for providers and families, integration of screening into a comprehensive health care visit, use of electronic health records to improve case management across providers and funding for additional data collection.
“The bottom line is this,” Dr. Schieve said. “Severe pain and complications associated with sickle cell anemia are preventable, and much can be done to reduce pain and suffering for our youngest patients with this disease.”