CDC announces children with sickle cell anemia not receiving appropriate treatment

PHOENIX (3TV/CBS 5) -- The Centers for Disease Control have announced that children with sickle cell anemia have been found to not receive the necessary, potentially life-altering treatment for their disease.

Sickle cell anemia is the most severe form of sickle cell disease--a red blood cell disorder that primarily impacts the Black community. Around 100,000 Americans are believed to have the disease. In 2019, less than half of children between ages 2 to 16 years with sickle cell anemia got the recommended screening for stroke, one of sickle cell anemia’s most common complications. The CDC Vital Signs report says that many of those same children aren’t taking a medication, called hydroxyurea, that reduces complications.

Many individuals with the disease say that they have barriers to treatment because of structural racism. Providers with expertise in treating the disease say that they also experience stigmatization by health care providers and often have their symptoms dismissed.

“The pain and complications these children often experience can be excruciating and debilitating and can last for hours, days, or even weeks,” said CDC Acting Principal Deputy Director Debra Houry, M.D., M.P.H. “Preventive care and medicines, such as hydroxyurea, can help ease the pain and suffering these children go through, and may extend their lives.”

In a study of more than 3,300 children with sickle cell anemia who were enrolled in Medicaid in 2019, researchers found the following startling results:

• 47% of children aged 2–9 years and 38% of children aged 10–16 years received transcranial Doppler ultrasound to assess their risk for stroke.
• Only 2 in every 5 children aged 2–9 years and nearly half of children/teens aged 10–16 years with sickle cell anemia are taking the medication hydroxyurea.
• Both the stroke screening and hydroxyurea use were highest among children with high levels of health care use, as well as those with evidence of prior complications from their disease.

“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,” Dr. Karen Remley, M.P.H., director of the CDC’s National Center on Birth Defects and Developmental Disabilities, said. “These complications are preventable—not inevitable.”

The CDC recommends the following to remove barriers to accessing life-saving care:

• Health care providers can consolidate care by integrating screening into a single, comprehensive health care visit for children with the disease.
• Health care institutions can develop formal reporting systems to document and respond to racist behavior and empower those with the disease to report prejudice or inequality they may experience.
• Health care providers can work with policymakers and advocates to reverse years of structural racism on sickle cell anemia funding, research, and policies.
• Patients and their families can learn about the importance of being screened for stroke and talk to their health care provider about their results.
• Community-based organizations and other partners can develop and offer resources for patients and providers to improve their understanding of annual screening, help address transportation needs, and can help them with financial assistance.

To learn more about these efforts and sickle cell anemia research, click here.

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