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Minnesota Babies at Risk
House Considering Changing Newborn Screening Statute

(UNION, NJ, March 22, 2006) -- No one ever imagines their pregnancy or unborn child to be anything but normal and healthy. Since 1965, the state of Minnesota has been making sure that infants are protected from silent killers through universal newborn screening. On Friday, March 24, 2006, the Minnesota House of Representatives Health Policy and Finance Committee, however, will considering changing all of this with HF3387.

"Universal, mandated newborn screening saves lives," says Kelly Leight, executive director of the CARES Foundation. "The provisions of this bill run counter to everything that Minnesota has achieved with its newborn screening program over the past 40 years."

According to National Newborn Screening & Genetics Resource Center state self-reported data, in 2005, the Minnesota newborn screening program detected 75 infants with potentially fatal diseases allowing them to receive life-saving early intervention. Three of those babies were diagnosed with CAH.

"Without mandatory screening, however, these families probably would never even have had their infant tested for CAH," cautions Leight. In the case of autosomal recessive diseases like CAH, where both parents must be carriers to have an affected child, there is rarely any family history to indicate potential for inheritance. Because most families would have no reason to suspect CAH, they would see no reason to test their infant for this disease.

The changes proposed by HF3387 would make Minnesota's an "opt-in" newborn screening program. In other words, parents would be asked if they want to have their children tested rather than given the option to say no to screening as the program allows under current law.

"The Minnesota Newborn Screening Program has successfully screened millions of Minnesota's children and has an excellent record of protecting privacy," says Mark McCann, supervisor of Minnesota's newborn screening program at the Minnesota Department of Health Public Health Laboratory. "Parents already have the right to say 'no' via an informed consent to 'opt-out' of screening or to have their baby's blood sample and screening results destroyed."

As noted by Piero Rinaldo, MD, Professor of Laboratory Medicine and Pathology at the Mayo Clinic in Rochester, Minnesota, "In the last two years, approximately 140,000 births, we are aware of only 13 requests filed by parents to have their children's screening sample and data destroyed."

The potential financial, physical and emotional cost of a CAH-affected child going undetected is substantial: CAH, in its severest form, is a life-threatening disorder. If undetected at birth, CAH can lead to adrenal crisis and death. Frequently, newborn CAH babies show no outward signs of the disorder and are sent home only to present a few weeks later for urgent medical attention at a time when they are beyond resuscitation. If the baby does not die, the financial cost of treating an infant with undetected CAH easily can run to over $1 million in the first six months of the child's life. On the other hand, if detected before adrenal crisis, CAH-affected children will not become handicapped or suffer learning disabilities. They will not need to receive state aid for early intervention, special education and other support services and will live essentially normal lives.

"As family history does not readily indicate probability of inheritance of potentially fatal diseases such as CAH, failure to recognize these disorders at birth has such dire consequences, and treated infants can have full, productive lives, mandated newborn screening is invaluable," concludes Leight.

CARES Foundation, Inc. is a 501(c)3 non-profit organization committed to improving the lives of families and patients affected by CAH through pro-actively advancing research for a cure, educating the public and healthcare providers about all forms of CAH, advocating for universal newborn screening, and providing support services and resources vital to the CAH community world-wide. For more information on CARES and CAH, please contact:

Kelly Leight
Kelly@caresfoundation.org
2414 Morris Ave., Suite 110
Union, NJ 07083
Phone: (908) 364-0272
Toll-free: (866) 227-3737
Fax: (908) 686-2019
URL: www.caresfoundation.org

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