Public Health Bills

Ending the Diagnostic Odyssey: Public Health Bills

Inspired by Project Baby Bear’s success, legislation has been introduced in Congress, and in several states, to make rapid Whole Genome Sequencing a covered benefit for babies enrolled in public health programs.

Federal Legislation

At the federal level, Senators Susan Collins (R-ME), Bob Menendez (D-NJ), and Mark Kelly (D-AZ) introduced S. 2022 on June 10, 2021. The bipartisan legislation seeks to end the diagnostic odyssey by enabling States to provide better access to whole genome sequencing for eligible children with rare genetic disease under the Medicaid program. 

California – AB114

Assemblyman Brian Maienschein (D-77) introduced AB114 the “Rare Disease Sequencing for Critically Ill Infants Act”. Sponsored by Rady Children’s Hospital, the proposed measure would cover rWGS for infants enrolled in Medi-Cal. As of Spring 2021, AB114 was making its way through hearings in the State Assembly.  

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