On Wednesday, the state Senate Health Committee approved a bill (SB 1072) that would require screening of newborns for two lysosomal storage diseases, including Krabbe disease, the Ventura County Star reports.
The bill now goes to the Senate Appropriations Committee.
Background on Disease
Krabbe disease is a nervous system disorder that affects about one in 100,000 infants. It can be effectively treated with stem cell transplantation if it is diagnosed before symptoms develop.
California hospitals already collect blood samples from newborns to test for several preventable congenital disorders.
Sen. Tony Strickland (R-Moorpark), who authored the bill, initially sought to mandate testing for six lysosomal diseases. However, he agreed to limit the requirement to two diseases and include a provision that would require the law to be renewed in 2018.
Strickland said, "I think parents deserve all the information they can possibly get," adding, "If you identify the disease at birth, you can change the quality of life for these children."
Opposition to Bill
Some public health experts have expressed reservations about the bill, saying too little is known about Krabbe disease and the effectiveness of stem cell therapy as a treatment.
William Wilcox -- a UCLA medical school professor and a member of the advisory board of the state newborn screening program -- testified before the health committee that testing results from infants in New York suggest that mandatory testing for Krabbe disease "would not be the best option" for California.
He said, "There's an enormous amount of work to be done to understand Krabbe disease better and to understand what the real benefits of transplantation are."
The California Hospital Association and the California Medical Association also oppose the legislation (Herdt, Ventura County Star, 4/18).