Less Than Half of Children with Sickle Cell Anemia Prescribed the Proper Medications: CDC

Structural racism, lack of healthcare access and other factors have led to half of children with sickle cell anemia not getting proper treatment, according to the researchers.

Federal health officials indicate that less than half of children diagnosed with sickle cell anemia receive the life-saving screenings and treatments recommended for youth with the disease.

Sickle cell anemia is an inherited disorder that causes red blood cells to become misshapen and breakdown, which can block blood flow and cause pain, know as sickle cell crisis. However, early diagnosis and interventions are key to preventing sickle cell disease complications.

In the latest issue of the U.S. Centers for Disease Control and Prevention (CDC) Vital Signs report published last week, researchers indicate that despite recommendations that call for routine screenings and consistent treatments for sickle cell anemia, most children with the disease are not receiving the care they need to prevent serious complications, including chest syndrome, lung injury and stroke.

The report analyzed information from more than 3,300 children with sickle cell anemia who were continuously enrolled in Medicaid in 2019, using data from the IBM MarketScan MultiState Medicaid Database. However, researchers warn that only two out of five children with sickle cell anemia received the recommended medication needed to prevent complications in 2019, according to CDC researchers. Without these treatments, children can suffer serious side effects.

Sickle Cell Anemia

Sickle cell anemia is the most severe form of sickle cell disease, which primarily affects African American people and can lead to other complications to other parts of the body. It is also a common cause of stroke for people with the disease. Simply having sickle cell anemia can shorten their life expectancy by 20 years or more.

It is believed that the condition is actually an evolutionary advantage, which developed as a means of protection against malaria.

There are two treatments healthcare experts recommend children with sickle cell anemia undergo to prevent complications. The first, transcranial doppler ultrasound, is used to identify children with increased risk for stroke. The second, hydroxyurea therapy, reduces the occurrence of several complications, including severe acute pain episodes and acute chest syndrome which can result in lung injury and trouble breathing.

These treatments are recommended by health experts, but the CDC reports less than 50% of affected children received these treatments in 2019. Only about 38% of kids ages 2-9, and about half of children ages 10-16, received it in 2019.

“We must take action to ensure that children with sickle cell anemia are receiving potentially lifesaving treatment,” CDC Acting Principal Deputy Director Debra Houry, said. “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.”

Barriers to Treatment

Unfortunately, many people with sickle cell anemia face barriers to receiving life-saving screenings and treatment, including structural racism. Many people with sickle cell anemia do not have access to healthcare, or if they do, they do not have access to providers with expertise in treating the disease.

Managing sickle cell anemia is complex and when patients face discrimination, racism or other barriers, it can make receiving quality care much more difficult. Some patients report feeling stigmatized or say they have their symptoms dismissed by healthcare providers.

The CDC researchers say their findings highlight the need for communities and healthcare providers to work on consolidating care and screening processes, developing reporting systems to respond to racist behavior, focusing on implementing policies to help reverse the impact of structural racism, and better educating families on the importance of annual screenings for stroke and other necessary screenings for complications.