Illinois to add cystic fibrosis to newborn screening program

GLENVIEW, Ill. (July 14, 2006)--The Cystic Fibrosis Institute (CFI) is proud to announce that the State of Illinois has added Cystic Fibrosis (CF) to its mandated newborn screening panel. Dr. Eric E. Whitaker, Director of the Illinois Department of Public Health, made the announcement on behalf of the governor’s office.

"By screening newborns for cystic fibrosis, we can help babies get the treatment they need and the chance to live longer lives," said Gov. Blagojevich.

A pilot program, slated to begin before the end of the calendar year, will add CF to Illinois’ routine newborn screening panels. The Illinois Department of Public Health (IDPH) will initiate changes to the administrative rules governing newborn screening to add testing for CF. The proposed rule changes will be submitted to the Joint Committee on Administrative Rules for approval. Once approved, a pilot program will be conducted with full-scale statewide testing of all newborns implemented which is expected next year.

Cystic fibrosis is a genetic disease that causes thick and sticky mucus to accumulate in the lungs and digestive system causing chronic lung disease, malnutrition, and lung destruction resulting in premature death. "Fifty years ago, people suffering with cystic fibrosis typically didn’t live long enough to go to school," said Dr. Whitaker. "Today, people with cystic fibrosis are living into their 30s, 40s, 50s, and even longer thanks to aggressive treatments. By screening newborns, treatment can begin immediately and help prolong lives."

Lisa Dye, Director of Public Affairs for the Illinois Chapter of the March of Dimes, and Steven R. Boas, MD, CEO & Founder of the Cystic Fibrosis Institute, seeing the importance of the newborn screening program led an active campaign including parental letter writing, visits to Springfield, and recruiting the assistance of Rep. David E. Miller (D-Dolton). Rep. Miller was instrumental in facilitating meetings with Dr. Whitaker. "I know the importance of early diagnosis. This newborn screening program will help save families precious time to start treatment if their baby is diagnosed with cystic fibrosis," states Rep. Miller.

The addition of newborn screening for cystic fibrosis will have a major impact on newborns with CF," says Dr. Boas of the Glenview-based Cystic Fibrosis Institute and the Medical Director of Chicago CF CARE Specialists (www.cfcarespecialists.org). "An early diagnosis provides the potential for improved nutrition and growth with fewer nutritional complications. Studies have shown that height and weight are higher for infants with CF identified by newborn screening. A CF diagnosis based on symptoms with a newborn screening program is associated with delayed diagnosis, more hospitalizations, and reduced survival. Additionally, an early diagnosis can often save families from misdiagnoses, unnecessary diagnostic testing, hospitalizations, and considerable anxiety."

For more information on newborn screening or cystic fibrosis, contact the Cystic Fibrosis Institute at 847-998-3434.