Newborn Screening Update Fall

Fall 2003 CARES Foundation, Inc.

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*Newborn Screening Update*


Ohio and Oregon: Began Screening for CAH July1, 2003. Nevada: Nevada is now screening for CAH!! In January of this year, the Nevada Department of Health put out a Request for Proposals (RFP) for the newborn screening contract for the state. At that time, the RFP included a request for bids on an expanded panel including screens for metabolic disorders and hemoglobinopathies (Sickle Cell Disease and Thalassemia) but not CAH. In reaction to a call for the inclusion of CAH from families affected by this disorder and Nevada medical professionals, the state recalled the RFP in April and issued a new one that included CAH. The state accepted a bid from the Oregon State Laboratory and began the expanded screening on July 1. Deeming an expanded panel "a sensible addition to our screening program," the Health Division implemented testing for over 25 new disorders including CAH (see http://www.savebabies.org/states/nevada.htm for a complete list). However, the state decided to stop testing for CAH after a month due to budgetary restraints. At the public hearing on Sept. 12, 2003, the Nevada Department of Health asked the State Board of Health to consider and approve an amendment contained in Nevada Administrative Code to increase the fee charged by the state for the registration of births from $28 to $60. This fee increase would cover the cost of the expanded newborn screening panel as well as the establishment of a state birth defect registry. However, due to a negative fiscal situation, the Department of Health indicated that testing for CAH would not begin until July 1, 2004. In an emotional session, a number of CARES families affected by CAH then presented testimony. While each of their stories differed slightly, all told of holding a dying baby in their arms with no explanation as to what was wrong with their newborn child and implored the board to prevent this from happening to another Nevada family by approving the fee increase inclusive of the immediate resumption of testing for CAH. Dr. Alan Rice, a pediatric endocrinologist from the University of Nevada, Las Vegas and Dr. Michael Skeels, director of the Oregon State Lab that does the screening for Nevada, also testified in support of reinstating CAH newborn screening. Showing broad-based, unqualified support for the entire expanded newborn screening panel, the board immediately approved an amendment calling for an initial fee of $64 (to be reduced to $60 July 1, 2004) to enable the continuation of testing for metabolic disorders and hemoglobinopathies as well as the immediate reinstatement of screening for CAH. This is an incredible victory for the babies of Nevada. The amazing Gretchen Lin, who so artfully organized the advocacy efforts in Nevada, the families who testified and wrote letters, the doctors who supported CAH screening and the members of the Nevada Dept. of Health and Board of Public Health, who supported the CAH screening and came up with the funding necessary to screen for CAH all deserve our deepest gratitude. Thank you all so much! California: California has taken a huge step backwards in its newborn screening program. Governor Gray Davis pulled the plug on funding for the state’s successful pilot expanded screening program. Although CA did not screen for CAH in its pilot, the fact that he took away what little funding the program did have does not bode well for an expansion to include CAH anytime in the near future under the current administration. Perhaps the recall election in CA will give the state a more child friendly Governor. Make sure you vote!

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