The Surge to Save Newborns Coalition: Aiming to Standardize Newborn Screening Across States

Surge to Save Newborns Coalition: A Call for Change

On March 5, 2026, the Surge to Save Newborns coalition made its debut, releasing a critical study by Manatt Health that sheds light on the alarming variability in newborn screening practices across different states in the U.S. Although newborn screening programs detect treatable yet serious diseases in around 14,000 infants yearly, this essential health service remains inconsistent depending on where a baby is born.

The Department of Health and Human Services (HHS) advocates for the Recommended Uniform Screening Panel (RUSP), which identifies 40 primary and 26 secondary conditions that require early detection for the best chance of successful treatment. Unfortunately, many states face challenges due to inadequate funding and structural limitations that hinder timely screening processes.

The consequences of such disparities can be dire; for many conditions, timely diagnosis and intervention are critical, as various treatments are most effective before any symptoms present themselves. Shockingly, it might take up to a decade for a new screening condition to be adopted universally across all 50 states. The new study calculates that a one-time investment of $173 million could adequately fund the implementation of all RUSP-approved conditions nationwide, including those added recently and two anticipated for the near future.

This substantial funding request represents a necessary financial commitment to eliminate screening delays that could save countless lives. Elisa Seeger, a founding partner of the Surge to Save Newborns and the ALD Alliance, highlighted this initiative's importance: “Newborn screening is one of the most crucial public health programs of our time, yet too many babies miss the critical window for early diagnosis if their state does not screen for the recommended conditions.”

The coalition’s mission emphasizes that a newborn's zip code should not dictate access to potentially lifesaving screenings for treatable conditions. The goal is to ensure equitable implementation across the nation, and importantly, even a slight delay in diagnosing certain conditions can be fatal.

Anna Grantham, another founding partner and director at the Hunter's Hope Foundation, echoed these sentiments, asserting that the funding initiative isn't just about policy — it's about delivering urgent, lifesaving care to children and families in the U.S.

Established by over 15 rare disease advocacy organizations, including the ALD Alliance and Hunter's Hope Foundation, the Surge to Save Newborns coalition stands united in its commitment to prevent early, avoidable deaths and disabilities in newborns. The coalition seeks to mobilize support to implement all currently recommended screening conditions and those soon to join the newborn screening panel.

To explore this pressing issue further, learn about the interactive state maps, and discover how to take action, visit surgetosave.org.

The future of newborn health might depend on understanding and addressing these disparities, as well as mobilizing the necessary resources to ensure that every baby has the right to early detection and treatment.