On May 24th 2012, the California Senate Appropriations Suspense Committee meeting was held to address any current legislation with an estimated fiscal impact to California’s budget exceeding $150,000. SB 1072 had a fiscal note attached to it of approximately $7,000,000. Due to the enormous California budget deficit that was recently deemed to be a fiscal crisis, SB 1072 (Jacqueline’s Bill) was voted to be “Held in Committee” at the suspense hearing. This effectively means that the legislation is stalled and will not be successful during the 2012 legislative cycle.
Peace, Love and Trevor is very disappointed with this outcome. The current reality is that children will continue to be born and die from Krabbe and five other treatable lysosomal storage diseases included in the
SB 1072 bill language, due to the poorly managed California budget. Advocacy groups will likely initiate new newborn screening legislation in 2013.