Despite the challenges of a gridlocked 118th Congress, the American Association of Neurological Surgeons/Congress of Neurological Surgeons Washington Committee celebrated legislative victories in pediatric neurosurgery, notably the Gabriella Miller Kids First Research Act 2.0 and the reauthorization of the Emergency Medical Services for Children (EMSC) program.
The Gabriella Miller Kids First Research Act 2.0 reauthorizes and expands funding for the Kids First Research Program at the National Institutes of Health by supporting research on benign and malignant brain and spinal tumors, and congenital anomalies related to the growth and development of the brain and spinal cord. The Kids First Data Resource Center serves as a centralized powerhouse for researchers. It has been instrumental in uncovering new insights into the biology of childhood cancers and structural birth defects, facilitating the discovery of shared genetic pathways between these disorders. Over the years, it has selected 63 childhood cancer and structural birth defects cohorts for whole genome sequencing, representing approximately 21,000 patients and 55,000 genomes.
The resulting research is extensive. Of note, the program has supported several studies that explore the genetic basis of pediatric brain tumors and related defects. For instance, research on NTRK fusions in pediatric tumors has provided insights into the frequency, fusion partners, and clinical outcomes associated with these genetic alterations, informing targeted therapies in neurosurgical practice. It is precisely this type of research that has afforded multiple advances in pediatric cancer treatment, expanding targeted chemotherapy, and has been shown to provide curative treatment in some instances.
Equally impactful is the EMSC program, which ensures that emergency departments across the country are prepared to address pediatric-specific needs. These initiatives are imperative to ensure that pediatric patients receive high-quality care regardless of whether they are seen at a pediatric hospital or an emergency department that treats both adults and children. Improving pediatric care at non-pediatric emergency departments ensures high-quality care in rural and underserved areas that may not have immediate access to a pediatric hospital. For neurosurgery, this program plays a vital role in enhancing care for children experiencing traumatic brain injuries and other neurological emergencies.
The EMSC’s Pediatric Readiness Guidelines and training initiatives ensure that emergency departments are equipped with the protocols and expertise necessary to provide timely, specialized neurosurgical care. A recent study involving nearly 1,000 emergency departments reported that when an emergency department was well-prepared to care for pediatric patients, they experienced 60-76% lower short-term mortality and 41-66% lower long-term mortality among children. Had all emergency departments been well-prepared—what the study terms having “high-readiness”—more than 1,400 pediatric deaths may have been prevented during the study years.
The EMSC also plays an integral role in supporting the Regional Pediatric Pandemic Network to prepare hospitals to care for children during public health emergencies. There are two cooperative agreements that support a network of 10 children’s hospitals, of which my institution holds one of those agreements. University Hospitals Rainbow Babies & Children’s Hospital is the only designated Level I pediatric trauma center in Cleveland, providing the highest level of trauma care for children and adolescents.
These legislative wins highlight the importance of neurosurgery’s presence in Washington to advocate for our most vulnerable patients. Even in a gridlocked Congress, these reauthorizations demonstrate a commitment to advancing pediatric neurosurgery through successful federal programs addressing pediatric brain tumors and trauma.
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Krystal L. Tomei, MD, MPH, FAANS, FACS, FAAP
Rainbow Babies and Children’s Hospital
Cleveland, Ohio
