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Assemblymember Brian Maienschein and Rady Children’s Hospital Announce Whole Genome Sequencing Benefit for Critically Ill Infants Covered by Medi-Cal

For immediate release:

SAN DIEGO – Assemblymember Brian Maienschein and Rady Children’s Hospital are proud to announce rapid whole genome sequencing for newborns with rare diseases has been qualified as a Medi-Cal covered benefit.

As a result of Assemblymember Maienschein’s AB 114: The Rare Disease Sequencing for Critically Ill Infants Act, $3 million in funding was secured through the 2021-2022 State Budget to help provide access to innovative testing to critically ill infants with rare diseases. 

AB 114 was inspired by the success of Project Baby Bear, a pilot study that allowed doctors at five children’s hospitals to provide rapid whole genome sequencing to help diagnose and personalize treatment for ill babies enrolled in Medi-Cal. Project Baby Bear was led by Rady Children’s Hospital – San Diego and produced astounding outcomes.

Using this rapid form of genome sequencing, Project Baby Bear returned results within a few days, as opposed to the weeks it takes for traditional genetic testing to provide answers. Current technology has allowed these results to now be returned within hours. Rapid whole genome sequencing reads a child’s entire genetic code to pinpoint the cause of their condition. With this information, doctors can provide targeted, personalized care that results in fewer invasive procedures, shorter hospital stays, and significant healthcare cost savings.

Results for the 178 babies sequenced in Project Baby Bear resulted in 513 fewer days in the hospital, 11 fewer major surgeries and an estimated $2.5 million in healthcare savings.

“I am proud of the work we’ve done to make this innovative, potentially life-changing benefit a reality for so many infants that need this the most,” said Assemblymember Maienschein. 

“This benefit will undoubtedly affect the families of so many babies across California by helping them find answers and identify options for accurate and precise medical care much quicker,” said Assemblymember Maienschein. “By cutting down the time it takes to diagnose these rare diseases, this benefit will save the state a tremendous amount of money and medical resources by eliminating unnecessary procedures and hospital stays.” 

“Access to life-changing rapid precision medicine will help to close the gap and raise the quality of care for all critically ill infants in California, “ said Erika Allred, MD FABP, Rady Children’s Institute for Genomic Medicine. “Coverage for rapid whole genome sequencing gives physicians a tool to shorten the diagnostic odyssey and find a diagnosis early to start targeted, individualized treatment and can help relieve some of the stress many families experience so they can focus on caring for their child.”