Wisconsin became the first state in the nation to screen all newborns for Severe Combined Immune Deficiency (SCID).
Sometimes 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 Milwaukee and the Jeffrey Modell Foundation. Phase one 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 H. Laessig, PhD, emeritus director and professor of Population Health Sciences at the State Laboratory of Hygiene, UW-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, MD, medical director of Allergy and Clinical Immunology at Children's Hospital of Wisconsin.
The Jeffrey Modell Foundation and Children's Hospital are providing the initial funding for this multi-year pilot. The foundation is a non-profit organization established by Vicki and Fred Modell in memory of their son Jeffrey who died at age 15 from a Primary Immunodeficiency (PI). SCID is one of 140 PI diseases. The pilot, which continues through 2010, will evaluate the effectiveness and outcomes of early testing for SCID. Once the pilot reaches completion, investigators hope for a rapid acceptance of the screening nationwide.
"The workshop held just about a year ago generated results far beyond anyone's expectations. The Jeffrey Modell Foundation identified newborn screening of SCID as a primary focus of its efforts and has now created a unique federal, state and private collaboration. We are committed to their vision that all newborns will be screened for SCID in a system where true cases are identified promptly and treated effectively," said Dr. Robert Vogt of the Newborn Screening Branch of the CDC Division of Laboratory Sciences.
U.S. Congress weighs in
In a related development, Congress just passed 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 specifically for the purpose of screening for SCID.