Recent changes within the U.S. Department of Health and Human Services (HHS) affecting newborn screening have prompted a professor at Western Michigan University Homer Stryker M.D. School of Medicine (WMed) to speak up.
In an editorial published this month in Molecular Genetics and Metabolism, “SIMD concerns over federal support changes affecting newborn screening,” Shibani Kanungo, MD, MPH, community professor in the medical school’s Department of Medical Ethics, Humanities, and Law and member of the Society for Inherited Metabolic Disorders (SIMD), calls upon federal leaders to reconsider funding decisions that, as it stands, will impact roughly 4 million babies born in the U.S.
“Without continued and robust National Institutes of Health (NIH) support, progress critical to research and science aimed to deepen our understanding of inherited metabolic disorders, develop more accurate diagnostic tools, and create safer, more effective treatments is at serious risk,” Dr. Kanungo said in the piece along with co-authors Susan Berry, MD, board president of the SIMD and professor for genetics and metabolism in the Department of Pediatrics at the University of Minnesota; and Erin Cooney, MD, associate professor in the Division of Medical Genetics and Metabolism at the University of Texas Medical Branch. “And (it) jeopardizes an entire generation of emerging scientists with potential loss of this consequential talent pipeline — undermining national and international expertise and leadership in biomedical science and public health for many decades.”
Drs. Kanungo, Berry and Cooney also criticize the dismantling of the advisory committee on heritable disorders in newborns and children (ACHDNC), a committee that successfully standardized newborn screening nationwide and “decreased disparities, preventing mortality and severe morbidity with early detection of such severe disorders,” they said, adding, “immediate action to reinstate the ACHDNC to safeguard the health and future of all affected children is pivotal.”
Staffing reductions at the Centers for Disease Control and Prevention (CDC), Health Resources and Services Administration (HRSA), and Maternal and Child Health Bureau (MCHB) are also concerning, Drs. Kanungo, Berry and Cooney write, “jeopardizing critical aspects of care delivery, surveillance, and quality assurance — not only for children diagnosed through newborn screening and with other inborn errors of metabolism (IEM), but for all children nationwide.”