Assemblymember Brian Maienschein has long been recognized for his commitment to advancing healthcare access and improving the lives of vulnerable populations. His legislative work is distinguished by his advocacy for innovative medical technologies, especially for infants suffering from rare diseases. One of his key achievements is his leadership in securing access to rapid Whole Genome Sequencing (rWGS) for critically ill newborns, inspired by the success of Project Baby Bear.
In 2020, Assemblymember Maienschein introduced Assembly Bill 114 - Rare Disease Sequencing for Critically Ill Infants Act, which sought to qualify rapid Whole Genome Sequencing as a covered benefit under Medi-Cal. This bill was inspired by Project Baby Bear, a groundbreaking clinical study that demonstrated the life-saving potential of rWGS in diagnosing rare genetic conditions in critically ill infants.
In 2018, Maienschein secured $2 million in state funding to pilot Project Baby Bear. This initiative, led by Rady Children’s Hospital, allowed doctors at five hospitals to utilize rWGS on 178 critically ill infants enrolled in Medi-Cal. The results were profound: the babies experienced 513 fewer days in the hospital, 11 fewer major surgeries, and an estimated $2.5 million in healthcare savings. The project underscored the power of genome sequencing in providing personalized, targeted care, reducing invasive procedures, and saving costs.
The success of this pilot inspired Maienschein to champion AB 114, aiming to expand access to this technology for more families, regardless of their ability to pay. In 2021, the bill received $3 million in annual funding through the state budget, ensuring that critically ill newborns under Medi-Cal could benefit from rWGS.
Maienschein’s legislation not only offers families a quicker path to understanding their children’s conditions, but it also addresses disparities in healthcare access. At the time of the bill’s introduction, rWGS was primarily available through clinical trials or philanthropic efforts, leaving many families without access to this cutting-edge diagnostic tool. AB 114 bridges this gap, ensuring that more families receive timely and accurate diagnoses for their children.
Advocacy and Awards:
Assemblymember Maienschein’s work has earned him widespread recognition, particularly in the field of rare disease advocacy and maternal and infant health. His efforts have been honored with several prestigious awards:
- 2022 RareVoice Award – State Advocacy: State Legislator
Maienschein received this second RareVoice Award from the EveryLife Foundation for Rare Diseases and Rare Disease Legislative Advocates for his work on AB 114 and his ongoing efforts to expand access to rWGS. - 2019 Legislative Champion Award
Awarded by the March of Dimes for his exceptional leadership and dedication to improving the health of women, children, and infants across California. - 2018 RareVoice Award – State Advocacy: State Legislator
Presented by the Rare Disease Legislative Advocates, this award recognized Maienschein’s outstanding advocacy on behalf of the rare disease community.
A Legacy of Healthcare Innovation
Assemblymember Brian Maienschein’s tireless advocacy for rWGS through Project Baby Bear and AB 114 is emblematic of his broader mission: to ensure that all Californians, especially the most vulnerable, have access to the most advanced and effective healthcare technologies. This year, he also served as a member of the Rare Disease Caucus through his role on the Assembly Health Committee. His efforts have not only improved the lives of families dealing with rare diseases but also paved the way for more equitable and cost-effective healthcare solutions.