BILL NUMBER: AB 1307AMENDED BILL TEXT AMENDED IN ASSEMBLY APRIL 22, 2009 INTRODUCED BY Assembly Member Buchanan ( Coauthors: Assembly Members Portantino and Torres ) FEBRUARY 27, 2009 An act to amend Section 125001 of the Health and Safety Code, relating to newborn screening, and making an appropriation thereof. LEGISLATIVE COUNSEL'S DIGEST AB 1307, as amended, Buchanan. Newborn genetic screening. Existing law requires that the State Department of Public Health establish a statewide program for the screening of newborns for specified genetic disorders, including tandem mass spectrometry screening for fatty acid oxidation, amino acid, and organic acid disorders and congenital adrenal hyperplasia. Existing law creates the Genetic Disease Testing Fund in the State Treasury, which is used to fund the newborn screening program. This bill would, instead,require , prior to January 1, 2011, the statewide screening program to also include all conditions recommended by the American College of Medical Genetics (ACMG) as of January 1, 2010. This bill would also require the department to consider future conditions recommended by the ACMG or other specified entities. The department would be required to adopt the recommendations, as specified, unless the department determines that the recommended conditions are not necessary for advancing newborn health and notifies appropriate committees of the Legislature of that determination. Because this bill would expand the purposes of the screening program it constitutes an appropriation. Vote: majority. Appropriation: yes. Fiscal committee: yes. State-mandated local program: no. THE PEOPLE OF THE STATE OF CALIFORNIA DO ENACT AS FOLLOWS: SECTION 1. Section 125001 of the Health and Safety Code is amended to read: 125001. (a) The department shall establish a program for the development, provision, and evaluation of genetic disease testing, and may provide laboratory testing facilities or make grants to, contract with, or make payments to, any laboratory that it deems qualified and cost-effective to conduct testing or with any metabolic specialty clinic to provide necessary treatment with qualified specialists. The program shall provide genetic screening and followup services for persons who have the screening. (b) (1) The department shall , prior to January 1, 2011, expand statewide screening of newborns to include tandem mass spectrometry screening for fatty acid oxidation, amino acid, and organic acid disorders, and congenital adrenal hyperplasia, as well as all conditions recommended by the American College of Medical Genetics (ACMG) as of January 1, 2010, as soon as possible. The department shall provide information with respect to these disorders and available testing resources to all women receiving prenatal care and to all women admitted to a hospital for delivery. If the department is unable to provide this statewide screening by August 1, 2005, the department shall temporarily obtain these testing services through a competitive bid process from one or more public or private laboratories that meet the department's requirements for testing, quality assurance, and reporting. If the department determines that contracting for these services is more cost-effective, and meets the other requirements of this chapter, than purchasing the tandem mass spectrometry equipment themselves, the department shall contract with one or more public or private laboratories. (2) Commencing January 1, 2010, the department shall consider additional conditions for screening, as recommended by the ACMG or other governing body appointed to convene, discuss, and establish recommendations for newborn screening programs and approved by the United States Secretary of Health and Human Services. The department shall adopt the recommended conditions for screening, within one year of receipt of the recommendations, unless the department determines that the screening for the recommended condition is not necessary for advancing newborn health, and notifies the appropriate committees of jurisdiction in the Legislature of this determination. (c) The department shall report to the Legislature regarding the progress of the program on or before July 1, 2006. The report shall include the costs for screening, followup, and treatment as compared to costs and morbidity averted for each condition tested for in the program.