Governor Signs Bill Mandating Expansion of Testing of Newborns for Genetic Disorders

Gov. Arnold Schwarzenegger (R) last week signed a bill (SB 142) that will provide $2.7 million to expand infant testing for rare genetic diseases, the Contra Costa Times reports (Kleffman, Contra Costa Times, 8/22). The bill, sponsored by Sens. Deirdre Alpert (D-San Diego), Jackie Speier (D-San Mateo) and Sheila Kuehl (D-Los Angeles), will require hospitals to test for all detectable metabolic and genetic disorders (California Healthline, 8/4). Currently, the state tests only for four categories of disorders, including phenylketonuria, galactosemia, primary congenital hypothyroidism and sickle cell disease. Under the bill, infants will be screened for 76 additional birth disorders using a testing method called tandem mass spectrometry. Additional disorders to be tested for include fatty acid oxidation, amino acid and organic acid disorders and congenital adrenal hyperplasia (Contra Costa Times, 8/22).

The program, to be implemented by Aug. 1, 2005, will bring California in line with 42 other states and essentially would make permanent an 18-month pilot program involving about 50% of California hospitals. The pilot program, which began in 2002, ended in 2003 because of budget concerns. Increased efficiency has reduced the cost of a screening to about $60 per infant -- roughly the same price for the current test (California Healthline, 8/4). However, to finance the expansion, state officials in January plan to raise the testing fee from $60 to $78, according to George Cunningham, chief of the genetic disease branch of the Department of Health Services. The Times reports that most public and private health plans cover the fee (Contra Costa Times, 8/22).