Representatives Nick Langworthy (R-NY) and Kim Schrier (D-WA), along with a group of bipartisan lawmakers, introduced the Surge to Save Newborns Act today, marking an important milestone in the fight to increase available resources for states to implement screening for the conditions on the federal Recommended Uniform Screening Panel (RUSP). Currently, when a state decides to implement a new condition after it has been added to the RUSP, they must identify new resources to cover the added costs, which can result in delays and ultimately differences from state to state in what conditions are screened for at birth.
The SURGE Act would establish a grant program administered by the Secretary of Health and Human Services to provide funding directly to states to implement one of the 40 conditions currently on the RUSP as well as those added through the program’s 5-year timeline. The bill also requires more uniform reporting from states so that clear information about what conditions a state includes is available nationwide.
This is promising news and particularly meaningful during Newborn Screening Awareness Month and on the heels of our 8th Annual Newborn Screening Bootcamp. Stay tuned for more information about this important legislation and our ongoing work on the Newborn Screening Saves Lives Act.
Time is of the essence is rare disease. Rare conditions prioritized for federal newborn screening are serious, progressive, and often life-threatening. Our newborn screening system has the ability to detect a treatable rare disease in a newborn before irreversible damage occurs, improving that baby’s health outcome — and even saving their life. But for today’s life-saving potential to be realized for our nation’s newborns, states must have the critical resources needed to screen for all recommended conditions. Newborn screening saves lives, but only when we can screen.”
Annie Kennedy
Chief Mission Officer, RARE Foundation
