Wisconsin is trailblazer by testing for 'Bubble Boy Disease'

Published January 4, 2008 - BizTimes Daily

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On Jan. 1, Wisconsin became the first state in the nation to screen all newborn babies for Severe Combined Immune Deficiency (SCID), otherwise known as "Bubble Boy Disease."
SCID is a genetic disorder that is fatal without early diagnosis and treatment. Babies diagnosed can be referred for potentially life-saving treatment.
The Wisconsin Department of Health and Family Services approved moving to phase two of the pilot screening program in which screening for SCID will be routine for all newborns in Wisconsin (estimated at 70,000 annually). The screening has been added to the current panel of 47 other tests that are given to newborns.
The pilot program began one year ago as a collaborative effort between the Wisconsin State Laboratory of Hygiene at the University of Wisconsin-Madison, Children's Hospital of Wisconsin in Wauwatosa and the Jeffrey Modell Foundation. The first phase involved developing a procedure using residual, unidentified blood specimens from Wisconsin's nationally recognized newborn screening program.
"The collaboration between the State Laboratory and Children's Hospital has advanced Wisconsin's health care for newborns at a rapid pace. The outstanding dedication demonstrated by everyone involved is the reason we have progressed to the next phase at a record pace," said Ronald Laessig, Ph.D, emeritus director and professor of population health sciences at the State Laboratory of Hygiene, University of Wisconsin-Madison.
"This complex disease can be cured with a bone marrow transplant if diagnosed early before serious infections develop. That is why the early detection and treatment of SCID through routine screening in newborns will save lives. The screening also will spare infants' repeated and prolonged hospitalizations and save millions of dollars in health care costs. We believe that the Wisconsin Newborn Screening Program will serve as a blueprint for newborn screening in other states, spurring testing to save the lives of infants throughout the nation," said Jack Routes, M.D. and medical director of allergy and clinical immunology at Children's Hospital of Wisconsin.
Congress recently approved the first federal legislation funding newborn screening for SCID. Under the program, states will be able to apply for grants from the Centers for Disease Control and Prevention to set up pilot programs to screen for SCID.
SCID is often called "Boy in the Bubble" after the movie of the same name that starred John Travolta, the true story of a boy with SCID who died at age 12 after spending his life in a plastic bubble because he was so vulnerable to infection.

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