Senate Committee Clears Legislation for Newborn Disease Testing

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.

Bill Details

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).

Anya David
I think the real issue here to remember is screening for the disease and not necessarily to advise on treatment options. Early detection is key to assist in treating a fatal disease. Wouldn't any parent or loved one like a chance to help save a newborn? Most babies are not expected to live past age 1 or 2. I hope you reconsider to support this bill and take the time to read this story:
Frank Apgar
Each one of these mandates carries additional costs that will be borne by all consumers in the form of higher premiums or taxes to cover the costs of government supported programs. While I am certain the authors hearts are in the right place careful consideration should be made as to whether resources are better spent elsewhere. Like it or not, resources for health care are limited. Our legislators need to wake up, realize that money doesn't grow on trees and stop the insanity of passing such mandates.

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