Assemblymember Maienschein Introduces Legislation Inspired by Project Baby Bear’s Success

Thursday, December 17, 2020

SACRAMENTO – Assemblymember Brian Maienschein introduced legislation this week that would qualify genomics testing as a covered Medi-Cal benefit. Inspired by the results of Project Baby Bear, Assembly Bill 114 would provide access to rapid Whole Genome Sequencing (rWGS®) to patients covered by Medi-Cal.

In 2018, Maienschein secured $2 million in state funding to pilot Project Baby Bear, a clinical study that allowed doctors at five hospitals to perform rWGS on critically ill infants enrolled in Medi-Cal. The study proved that rWGS can yield life-changing benefits that improve outcomes for these children by identifying the exact cause of genetic disease. In turn, this allows doctors to provide targeted, personalized care that results in fewer invasive procedures, shorter hospital stays, and significant health care cost savings. Among the 178 babies sequenced, Project Baby Bear saw an average of 513 fewer days in the hospital, 11 fewer major surgeries and an estimated $2.5 million in healthcare savings.

“The benefits that this testing can provide to so many families of infants with rare diseases are extraordinary,” said Maienschein. “By ensuring that testing is a covered Medi-Cal benefit, California can save a tremendous amount of money on resources, and families can shorten their search for answers in how to optimally care for their children.”

Assembly Bill 114 is sponsored by Rady Children’s Hospital-San Diego. Rady Children’s is one of the five facilities statewide that participated in Project Baby Bear.

“When searching for answers to complicated health questions, having access to the best and fastest technology is critical, especially for critically ill newborns and children,” says Patrick Frias, MD, president and CEO of Rady Children’s. “Our goal is that every child in the state who needs rWGS is able to access it.”

“It’s very rare to be able to use the most advanced, innovative medical technology to both improve a child’s life and save money, yet Project Baby Bear prove it’s possible,” said Stephen Kingsmore, MD, DSc, president and CEO of Rady Children’s Institute for Genomic Medicine. “We’re grateful to Assemblyman Maienschein’s leadership in advancing this legislation that seeks to offer answers and hope for families with children suffering from unexplained rare genetic conditions.”

Currently, availability of rWGS is limited primarily to clinical trials covered by research grants or philanthropic donations, as only a select few health insurance companies offer this a covered benefit. Assembly Bill 114 would significantly increase access to this life-changing diagnostic technology for families with critically ill children, regardless of ability to pay.

Contact: Emily Webber
 (916) 319-2077