On September 16, Governor Jerry Brown signed into law Senate Bill 1095 (SB 1095), sponsored by the EveryLife Foundation. The bill ensures that babies born in California will be screened for a disease within two years of its addition to the federal Recommended Uniform Screening Panel (RUSP).
Senator Richard Pan, MD (D-Sacramento) introduced the bill in February, noting that “[r]are diseases often are difficult to diagnose in time before permanent damage is done.” With leadership from the EveryLife Foundation and support from more than 120 patient organizations including March of Dimes, the National Organization for Rare Disorders (NORD), Muscular Dystrophy Association and Global Genes, this bipartisan legislation breezed through both chambers of the state legislature unanimously. To read more on the improvements this game-changing legislation will bring, click here.
Moving forward, the Foundation plans to use SB 1095 as a model for newborn screening legislation in additional states. Want to see newborn screening legislation introduced in your state? Have your organization join the Community Congress Newborn Screening Working Group and help guide Foundation policy.