Surgeon General's Office Adds Two Rare Diseases to Newborn Screening Panel
"For generations, parents and children will never know the hurt of having to die by age 5 because they were not screened for something that could be treated with a one-time gene therapy. If these children were not, are not screened at birth and they develop the symptoms of the neurodegeneration that this leukodystrophy does, they're not eligible for the one-time gene therapy that's FDA approved."
About this episode
In this episode of The Ultimate Human Podcast, host Gary Brecka interviewed Dr. Stephanie Herodopoulos, Principal Deputy Assistant Secretary of Health at HHS and senior advisor to the U.S. Surgeon General's Office. Dr. Herodopoulos, a physician with 25 years in family medicine, discussed major public health initiatives emerging from the Surgeon General's office under the current administration's focus on preventative health. The conversation centered on three major revelations: a new Surgeon General's advisory on screen harms in youth, updates to the newborn screening panel, and a renewed focus on chronic Lyme disease recognition. Dr. Herodopoulos disclosed that since 2010, reading scores in 13-year-olds have dropped 7% and math scores 14%, coinciding with ubiquitous screen adoption, and that children now spend more time on screens than sleeping or attending school. She revealed HHS added two rare diseases to the Recommended Uniform Screening Panel in December—metachromatic leukodystrophy and Duchenne—enabling life-saving early intervention including one-time gene therapy for MLD if caught at birth. The episode also covered the Office of the Surgeon General's December roundtable on Lyme disease, leading to CDC guideline updates that now recognize chronic Lyme as a legitimate infection-associated chronic illness affecting approximately 20% of Lyme patients, disproportionately women. Dr. Herodopoulos emphasized the paradigm shift happening in U.S. healthcare policy toward upstream prevention and keeping people out of the chronic care system. The discussion touched on gut health research initiatives, bell-to-bell phone policies in 37 states, and the broader mission of the 5,500-member Public Health Service Commissioned Corps.
Key takeaways
- Dr. Herodopoulos revealed children now spend more time on screens than sleeping or in school, fundamentally changing where they receive education.
- NAEP data shows 13-year-olds experienced 7% reading score decline and 14% math score decline since 2010 coinciding with screen adoption.
- HHS added metachromatic leukodystrophy and Duchenne to newborn screening panel enabling one-time gene therapy for MLD if caught at birth.
- CDC is updating Lyme disease guidelines to recognize chronic Lyme as infection-associated chronic illness affecting 20% of patients, mostly women.
- Surgeon General's office releasing advisory on screen harms covering neurocognitive development, physical health impacts beyond mental health and social media.
- Screen exposure before 18 months can affect full brain development and executive functioning according to new guidance from Surgeon General.
- Thirty-seven states have adopted bell-to-bell phone policies in schools showing improved academic scores and increased social interaction among students.