Bill aims to screen babies for four more conditions on the RUSP
MADISON, Wis. (Jan. 29, 2024) — On Friday, Senators John Jagler (R-WI) and Patrick Testin (R-WI) introduced Wisconsin Senate Bill 962 to ensure the state screens newborns for designated conditions that, when detected in infancy, can be treated to optimize health outcomes and save lives… The bill has garnered support from eleven additional cosponsors and community advocates, showcasing an unprecedented state-wide acknowledgment of the urgency of timely diagnosis for those facing serious medical conditions, including rare diseases. A companion bill will be introduced in the state Assembly soon.
Many states, including Wisconsin, screen newborns for conditions on the federal Recommended Uniform Screening Panel (RUSP), which is a list of conditions that is periodically updated by a committee of newborn screening experts using a thorough, science and evidence-based review process. However, it can take states years to add new RUSP conditions to each state’s screening programs, creating vast health disparities. Wisconsin newborns are currently not screened at birth for four of the 37 RUSP conditions, two of which have been on the recommended panel for more than seven years. As a result, hundreds of infants and children have faced irreversible and avoidable disease progression.
Senate Bill 962 will create an automatic and streamlined process for the state to evaluate, at a minimum, all new RUSP conditions, taking advantage of established medical standards and decreasing burdens for state officials and patient advocates. This legislation allows for state programs to leverage the expertise of the federal review process and provides opportunities for programs to focus on other areas of newborn screening beyond adding RUSP conditions to their panels. Eleven states have passed similar legislation including Texas, Iowa, and Ohio.
Last April, rare disease advocates from across the state convened to ask state legislators to support efforts to align Wisconsin’s newborn screening panel with the RUSP. “As a parent, I’ve seen firsthand the power of timely diagnosis,” said Amy Medina, a rare disease advocate from Fond du Lac, Wisconsin. “The introduction of this bill is a sign of progress and a brighter future for families like mine. It’s proof that our voices are making a difference.”
To learn more about the legislation and newborn screening, visit RareScreening.org.
About EveryLife Foundation
EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments, and cures. The Foundation provides training, education, resources, and opportunities to make patient voices heard, help change public policy and save lives.
Contact:
Margo Metzger
Senior Director of Marketing and Public Relations, EveryLife Foundation for Rare Diseases
Emily Stauffer
State Policy Manager, EveryLife Foundation for Rare Diseases
