Black pediatric patients believed to have neurological conditions are falling through the cracks.
Half of Black pediatric patients completed the necessary genetic tests for diagnosis and treatment. That puts them well behind white pediatric patients at 75%. This is just one disparity highlighted in a new study from Washington University’s School of Medicine.
WashU Medicine neurology professor Dr. Christina Gurnett said these tests are necessary to unlock treatment options.
“We were really surprised the completion rates were low across all children [for whom] we ordered these tests. But it was striking when we looked at racial differences,” Gurnett said.
Gurnett, who heads the Division of Pediatric and Developmental Neurology at the university, co-authored the study. She spoke with St. Louis Public Radio’s Marissanne Lewis-Thompson about the barriers Black families face accessing care with neurological conditions.
This interview was edited for clarity and length.
Marissanne Lewis-Thompson: What are some of the reasons behind disparities in genetic testing for neurological conditions in children, specifically Black children?
Dr. Christina Gurnett: We first just looked at the process by which tests are ordered. We know that the neurologist has to put in the order when the child comes to see us in the clinic. Sometimes, there's a process delay where the child has to come back, either for another visit or to have the testing done. In that time, the insurance also is queried to see whether it covers the testing. Looking at each of these processes, we could see that there was a breakdown. Some of it was in the insurance denials, which were much higher in Black patients. But that didn't explain all of the difference. We think there were other racial disparities in access to providers, other unmeasured problems with transportation and getting back to do the actual testing.
Lewis-Thompson: Some health insurance companies are refusing to cover the costs of tests. 41% of patients with public health insurance are less likely to complete genetic testing than those with private insurance. Why is this not seen as essential?
Gurnett: Well, the good news is that there's more and more research that's showing that it's very cost-effective to do genetics. The gene test often will give a diagnosis where other more expensive tests, including imaging studies or metabolic studies, have not been diagnostic of the condition. So I think as we prove that there's a cost effectiveness of this, we'll be able to get more insurance companies to pay.
Lewis-Thompson: Do parents have to get the test done as well?
Gurnett: For a lot of children that have severe neurologic problems, we really do like to test the parents as well. There's a new concept in understanding what causes developmental disabilities in children. A lot of those are brand new variants that happen only in the child. When we can look at the parents' DNA as well, we can clearly identify the new change that's the underlying cause for the child's disability because that change is only their DNA.
Lewis-Thompson: You work with kids and their families. Before this study, what were they saying to you about their real-life experiences navigating this?
Gurnett: We know that families who have children, particularly those who have disabilities, are under enormous pressure. Not only financially because they have problems holding down jobs when they have children that have complex medical needs, but the cost of the care, the cost of the therapies that they need also make it more challenging. So we're really willing to work with them in whatever way we can to try to make their lives easier. In this case, it means having another resource, another person that they can talk to who can help us get these genetic tests for them.
Lewis-Thompson: What is Washington University School of Medicine’s pediatric neurology clinic doing to address this problem locally?
Gurnett: The good news about the research that we've done in our own clinics here at Washington University is that we recognize that there was a problem in getting the testing for a lot of children, but particularly for the Black population. We've been very proactive in using this information to advocate for more resources in our clinic. We now have a genetic counselor who can help us in identifying other avenues so that families may not need to pay out of pocket for deductibles that they can't afford. There are workarounds that someone who's very embedded in the field can identify, so that we can get testing for people whose insurance may not otherwise cover it.
