Building The Noise with Erin Frey: EPISODE 014

What if your child’s chance of receiving life-saving newborn screening depended on the state where they were born? Rare disease policy advocate Erin Frey calls this heartbreaking disparity “death by ZIP code.”In this episode of Building the Noise, Matt Toresco speaks with Erin about America’s newborn screening system, the Recommended Uniform Screening Panel (RUSP), and why babies are not necessarily screened for the same conditions in every state.Erin explains how a condition moves from treatment approval to federal recommendation and then through individual state review processes a journey that can take years. For rare disease families, these delays may mean losing the opportunity to diagnose and treat a child before irreversible disease progression begins.They also discuss the realities facing public-health laboratories, the future of genomic newborn screening, and why meaningful healthcare change often begins at the state level. Erin shares how successful advocates build coalitions through listening, relationships, persistence, and honest conversations.You’ll learn:Why newborn screening panels differ from state to stateWhat the Recommended Uniform Screening Panel meansWhy screening delays can stretch toward 10 yearsHow early diagnosis can improve rare disease outcomesWhy public-health laboratories need more resourcesHow state legislation can create national changeWhat genomic newborn screening could mean for familiesWhy advocacy requires coalitions, not individual voicesHow Erin transformed personal challenges into a purpose-driven careerFor rare disease families, every minute matters. Closing the newborn screening gap requires more than scientific innovation it requires better policy, stronger public-health systems, and collaboration among families, advocates, healthcare professionals, industry leaders, and lawmakers.Learn more about the State Zebra Network and its work supporting state-level rare disease advocacy:https://statezebranetwork.orgSubscribe to Building the Noise for more conversations about patient advocacy, rare disease, and healthcare policy. Share this episode with someone who needs to hear it, and leave a rating or review to support the show.Support the showBuilding the Noise with Matt Toresco