I am pleased to share with you today that the Governors of Ohio and Arizona have signed into law legislation that will help save the lives of hundreds of babies born in these states each year.
Due to broad legislative and executive support, both laws, HB110 in Ohio and SB1824 in Arizona, were passed through the state budget process. The laws require the states to screen newborn babies for any disorder on the federal Recommended Uniform Screening Panel (RUSP), implements a timeline in which the screening must begin, and ensures that resources will be available to fund all conditions added to the RUSP in the future. Each year, new screening tests are developed to diagnose diseases before it is too late to receive treatment.
Including Georgia, which signed similar legislation in May, these new laws bring the total number of states that have adopted RUSP alignment legislation in 2021 to three. Nationally, the total is five states, including California and Florida which passed in 2016 and 2017 respectively. This life-saving momentum has been a result of a growing effort by advocates urging states to keep pace with science.
This achievement could not have been possible without YOU, the rare disease advocate. In Ohio, the EveryLife Foundation partnered with more than 50 patient advocacy organizations to support the legislation, including the Little Hercules Foundation and the Batten Disease Support and Research Association. In Arizona, the EveryLife Foundation worked as part of a coalition alongside the March of Dimes, Cure SMA, and AZBIO.
Special recognition is due to the bill champions who listened to their constituents and acted on this critical issue, including Ohio State Representatives Allison Russo and Tim Ginter, and Arizona Senator Tyler Pace.
As we celebrate this historic achievement, we continue to support RUSP alignment legislation in North Carolina, while working to advance the federal Newborn Screening Saves Lives Reauthorization Act.
As a community, we will never stop fighting for newborn screening policies that enable every baby in America to receive a diagnosis and access to lifesaving treatments at the earliest moment possible.
