More than 20 years ago, transcranial doppler ultrasounds and blood transfusions were proven to prevent nine out of 10 strokes in children with sickle cell disease (SCD). Although the National Institutes of Health (NIH) issued a statement in 2002 recommending annual screening, many children living with SCD don’t get screened annually, if at all.
“It’s such a simple, painless and harmless test,” said Robert Adams, MD, the neurologist whose 1998 study published in The New England Journal of Medicine proved the effectiveness of the testing for those at high risk for strokes. “It’s not rocket science.”
Dr. Adams’ study was halted ahead of schedule in 1997 because the annual stroke rate of children who received transfusions was less than 1%, compared with 10% for those who did not receive transfusions. Still, a review of the medical records of 5,347 children with sickle cell anemia at 28 medical centers across the U.S. found that an average of only 48.4% of children were screened.
“There’s often a gap between the development of improved treatments and delivery of those treatments to the patients who need them,” said Peter Lane, MD, director of the SCD program at Children’s Healthcare of Atlanta and a pediatrics professor at Emory University. He added that the gap is even bigger for patients with SCD. “A big part of the challenge of sickle cell is that it impacts predominantly disadvantaged folks.”