Governor Rell signs bill requiring cystic fibrosis screening in newborns

Governor M. Jodi today signed a bill that requires birthing hospitals to screen newborns for cystic fibrosis, an inherited disorder that clogs the lungs, causes infections and affects digestion.

“Every baby deserves the best start in life and that is a promise society must never abandon,” Governor Rell said during the ceremonial signing at the March of Dimes in Manchester. “We know early detection is critical in the effective treatment of cystic fibrosis and can ultimately result in health care costs savings.”

Cystic fibrosis occurs in one in every 3,500 births. It causes the body to produce abnormally thick secretions that clog the lungs, causing infections. The disorder also blocks vital pathways, such as the pancreas and bile duct. Treatment can include digestive enzyme replacement, antibiotics and careful monitoring.

Under the new law, the cystic fibrosis test is in addition to, but separate from, state Department of Public Health’s newborn screening program for genetic diseases and metabolic disorders. That program, in addition to the initial screening, directs parents to appropriate counseling and treatment and aims to screen all newborns within first four days of life.

According to the Cystic Fibrosis Foundation, about 30,000 children and adults in the U.S. have cystic fibrosis and 10 million more are carriers of the defective CF gene but do not have the disease. Most people are diagnosed at birth or before the age of 2.

Most Connecticut hospitals offered CF screening on a voluntary basis, but the new law requires that effective October 1, 2009, CF testing to be done at all health institutions that care for newborns, unless parents object on religious grounds.

“Connecticut has one of the most comprehensive newborn screening programs in the country. The cystic fibrosis law will greatly enhance it and improve the quality of life for so many children and their families,” Governor Rell said. “Babies born with cystic fibrosis today will greatly benefit from the incredible advances the medical community has made in the diagnosis and treatment of the disease over the last 50 years.”

(House Bill 6263: An Act Requiring the Administration of a Screening Test for Cystic Fibrosis to Newborn Infants)

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