News from The News Gazette.com Nov. 23, 2007

Newborn screenings expanded

By Kate Clements
Friday, November 23, 2007 7:08 AM CDT
SPRINGFIELD – A new state law is designed to protect infants from a series of genetic and metabolic disorders by catching and treating them sooner.
"Lysosomal storage diseases are very hard to diagnose, because affected infants initially appear perfectly healthy," said state Sen. Dale Righter, R-Mattoon, who sponsored SB 1566. "Once the symptoms become apparent, the disease will have progressed to a stage where it is very difficult to treat. Enhancing newborn screenings to test for lysosomal disorders will help doctors get them the help they need in a more timely fashion."
Righter said he got involved in the issue after hearing from parents whose children suffer from types of lysosomal storage diseases, meaning their cells are not properly disposing of waste material because of a lack of certain enzymes. The diseases can cause a wide range of symptoms, and most afflicted children do not survive longer than three years.
Righter's legislation requires all newborns to be screened for five major forms of lysosomal disease: Krabbe, Pompe, Gaucher, Fabry and Niemann-Pick.
The measure passed the House and Senate unanimously. The legislation took effect immediately after the governor signed it on Nov. 5, but the required testing will not begin right away. According to the new law, the goal is to begin the expanded screenings within three years, after Illinois Department of Public Health officials acquire the necessary equipment and testing materials.
Melaney Arnold, a spokeswoman for the department, said she was not sure when the testing would begin because the state was waiting on the federal government.
"The goal of the act was to have it implemented within three years," Arnold said. "That's the goal, but there's nothing (the department) can do until the Food and Drug Administration approves it and the Centers for Disease Control is able to make it available. But once all the pieces fall into place, six months after that is when we'll start doing it."

 

 

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