According to a news release from the EveryLife Foundation for Rare Diseases, North Carolina became the 4th state in the nation to sign newborn screening legislation in 2021 (following Arizona, Georgia, and Ohio). Additionally, this makes the state the 6th in the country overall, as California and Florida also passed similar legislation years ago. In signing House Bill 736 (“HB 736“), North Carolina made the decision to update its newborn screening program. In doing so, the state committed to expanded newborn screening efforts within the next 3 years.
HB 736: “Timely Updates to Newborn Screening”
Altogether, HB 736 was designed to implement “timely updates to newborn screening.” Newborn screening is a public health program which can detect or diagnose potential conditions which may affect a child’s long-term health and wellness. Currently, the Health Resources & Services Administration (HRSA) listed 35 conditions on its Recommended Uniform Screening Panel (RUSP), including:
- Propionic acidemia
- Maple syrup urine disease
- Homocystinuria
- Congenital adrenal hyperplasia
- Cystic fibrosis (CF)
However, the RUSP is not used in a standardized manner between states; some screen for more conditions and some screen for less. For example, North Carolina screens for approximately 32/35 conditions. HB 736 creates a timeline in which North Carolina must start screening for any new conditions added to the RUSP. Additionally, the state must report on how the addition is proceeding within 18 months (1.5 years).
Altogether, the EveryLife Foundation’s partnerships with over 50 patient advocacy groups helped to advance this legislation. Moving forward, the EveryLife Foundation hopes to pursue similar efforts in Iowa, Mississippi, and Maryland. If you live in one of these three states and are interested in getting involved, you can learn how to volunteer here.
Ultimately, this law has the potential to save the lives of hundreds of newborns. If you would like to learn more about newborn screening, legislation, evidence in support of this public health program, and how state screening programs compare to federal recommendations, head here.
