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Strokes remain a common complication of sickle cell anemia, but less than half of kids aged 2-16 living with the disease in 2019 were being screened for stroke risk, according to a study released on Tuesday.
That same year, just over half of children with sickle cell anemia were receiving the recommended treatment of hydroxyurea medication, the Centers for Disease Control Vital Signs report found.
In 2021, Shea Guillory told The Black Wall Street Times about how her twin sons overcame sickle cell disease through a bone marrow transplant.
“It’s very real. It’s happening. It’s here. But look at my son. My son is living breathing proof that it’s possible to overcome,” Guillory said.
Yet, not all children are as lucky.
Barriers to treating sickle cell
Sickle cell disease is a red blood disorder mainly impacting Black and African Americans that impacts roughly 100,000 people in the United States, according to the CDC.
Despite recent breakthroughs in treatment options no cures exist, and barriers to treatment abound among Black people seeking comfort from the effects of the illness.
For decades, the medical community was disincentivized from investing in research due to lack of funding and medical racism against Black people. Today, lack of access to health care impacts Black Americans disproportionately, and Black Americans with sickle cell even more severely.
According to the new Vital Signs report, only 38% of 2-9 year olds with sickle cell were being screened for a stroke in 2019, and only 47% of 10-16 year olds with sickle cell were being screened.
Hydroxyurea is a medication that can reduce complications from the disease, such as pain and acute chest syndrome. Yet, only 38% of 2-19 year olds and 53% of 10-16 year olds were receiving the medication in 2019.
The numbers represent marginal increases from 2014, illuminating the urgency for action to address the disparity.
“We must take action to ensure that children with sickle cell anemia are receiving potentially lifesaving treatment,” said CDC Acting Principal Deputy Director Debra Houry, M.D., M.P.H. “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.”
Health experts warn that sickle cell anemia can shorten a person’s lifespan by 20 years, leading to health complications that can be preventable.
“We must do more to help lessen the pain and complications associated with this disease by increasing the number of children who are screened for stroke and using the medication that can help reduce painful episodes,” said Karen Remley, M.D., M.P.H., director, CDC’s National Center on Birth Defects and Developmental Disabilities.
In light of the concern, the CDC has listed several recommendations to take in order to address the issue.
Health care workers can consolidate care by integrating the stroke screenings into one comprehensive health care visit for children living with sickle cell anemia. Administrators can create systems to track and report racist or unequal behavior among health care staff.
In addition, health care workers can advocate for the government to provide more funding for research and treatment of a disease that primarily impacts Black people.
For more information on the report, visit cdc.gov/vitalsigns.