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Governor Rell Signs Newborn Screening Bill
26-May-09 |
Regardless of where they are born in the United States, nearly all newborns now receive mandated screening for many life-threatening, but treatable, disorders, a remarkable public health advance of the last four years, according to a report issued by the March of Dimes.
On May 26, the March of Dimes Connecticut Chapter proudly hosted Governor M. Jodi Rell, along with representative families and volunteers from the March of Dimes and Cystic Fibrosis Foundation, as Public Act 09- 20, An Act Requiring the Administration of a Screening Test for Cystic Fibrosis to Newborn Infants, was signed into law. The passage of this bill mandates that all Connecticut newborns be screened for Cystic Fibrosis, a life-threatening condition that affects the lungs and digestive system.
As a result of the advocacy of March of Dimes volunteers, parents, and other partners, as of October 1, 2009, Connecticut will screen for all 29 treatable metabolic and functional disorders as recommended by the American College of Medical Genetics (ACMG) and endorsed by the March of Dimes and the American Academy of Pediatrics. If diagnosed early, these disorders can be successfully managed or treated to prevent disability, other severe consequences such as mental retardation, or even death.
Newborn screening is done by testing a few drops of blood, usually from a newborn’s heel, before hospital discharge. A positive result does not always mean the infant has a disorder. If a screening result is positive, the infant is referred for additional testing, and if the diagnosis is confirmed, treatment is initiated as soon as possible. Screening for hearing deficiencies, which is part of the 29 recommended conditions, is done separately.
The recent advent of tandem mass spectrometry provided the means to identify many conditions from one blood spot. In 2000, the March of Dimes recommended criteria for expanding programs in an editorial published in Pediatrics and in that same year launched its advocacy drive to require comprehensive newborn screening in every state at a time when most states screened for only four conditions. In 2005, the ACMG issued a report recommending that 29 screens be mandated for every newborn.
“The March of Dimes will maintain its longstanding support of newborn screening,” said Jennifer L. Howse, PhD, president of the March of Dimes, “and will continue to advocate for federally supported national guidelines as well as for funding for the Newborn Screening Saves Lives Act (P.L. 110-204), a bill designed to help states strengthen their programs.”
Parents can find a brochure about the recommended newborn screening tests at the March of Dimes Web site: marchofdimes.com/nbs.
A list of disorders for which screening is required by each state can be found on the March of Dimes Web site at marchofdimes.com/peristats, which is updated regularly, or at the National Newborn Screening and Genetics Resource Center Web site at genes-r-us.uthscsa.edu.
The March of Dimes is the leading nonprofit organization for pregnancy and baby health. With chapters nationwide and its premier event, March for Babies, the March of Dimes works to improve the health of babies by preventing birth defects, premature birth and infant mortality. For the latest resources and information, visit marchofdimes.com or nacersano.org.
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