Conn. (WTNH) — Sickle cell anemia, a severe form of sickle cell disease, can be detrimental to anyone who suffers from the disease, and children are not receiving the life-saving screening and necessary treatment, according to the Centers for Disease Control and Prevention (CDC).

The disease, which primarily affects Black and African American people, affects approximately 100,000 Americans.

The CDC said less than half of children between ages 2 and 16 with sickle cell anemia did not receive the recommended screening for stroke, a common complication of the disease, in 2019. The statistics, from a new CDC Vital Signs report, also found that many of the children are not receiving recommended medication, including hydroxyurea, which can reduce pain and acute chest syndrome.

According to the report, about half of children between ages 2 and 9, as well as 38% of children ages 10 to 16, received an ultrasound to assess their risk for stroke. Additionally, only two in five children between ages 2 and 9, and half of children/teens ages 10 to 16 with sickle cell anemia, used hydroxyurea.

Photo courtesy CDC

Karen Remley, M.D., M.P.H., director of the CDC’s National Center on Birth Defects and Developmental Disabilities, said sickle cell anemia can shorten a person’s life expectancy by 20 years, leading to complications that affect all parts of the body. Remley said the complications are preventable.

“Many people with sickle cell anemia report barriers to receiving the recommended screening and treatment,” Remley said. “Structural racism is one of those barriers. 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.”

Remley also said another barrier is the concern among parents and providers about the potential side effects of hydroxyurea.

Children with sickle cell anemia and their parents can work with providers to consolidate care into a single screening and comprehensive visit, while institutions can develop a formal reporting system to track and respond to racist behavior, prejudice, or inequality.

Parents and families are urged to learn about the importance of an annual screening for stroke, and community organizations can offer resources.

Learn more about the report here.