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Newborn Screening: 4 States Fail for CAH

Gretchen Alger Lin

CARES continued its campaign for universal expanded newborn screening throughout the final quarter of 2005. Expanded testing for 29 disorders including CAH began on December 5, 2005 in Kentucky. This was a full month before testing was scheduled to begin. Initially positive results will be sent to the Mayo Clinic in Rochester, MN for confirmation; however, by the end of the year Kentucky intends to move the entire program in-state. With the start of the new year, both Utah and Nebraska will begin screening for CAH and Washington D.C. is in the process of implementing an expanded newborn screening program that includes testing for CAH.

Newborn screening in Canada continues to lag far behind the times. Of the 13 provinces in the country only two and a half – Manitoba, North West Territories and the western part of Nunavut – currently are screening for CAH. Thanks to the efforts of our newborn screening advocate partners and CARES members, On November 2, 2005, Ontario approved expanded newborn screening. By the end of 2006, Ontario will test babies for 27 disorders including CAH.

While the majority of our efforts are in the form of encouraging governments to expand their screening programs to include CAH, we also monitor existing newborn CAH screening programs, scientific publications and legislative action to ensure the best possible screening programs for all children.

In December, CARES responded to a paper entitled “Newborn Screening for Congenital Adrenal Hyperplasia Has Reduced Sensitivity in Girls” that argued against lowering thresholds and requiring a second screen in the state of Wisconsin. CARES sent letters to the secretary of the Department of Health & Family Services and the the supervisor of Wisconsin’s newborn screening laboratory encouraging them to aggressively persue expanding screening for CAH to include lower 17-OHP threshold levels and a required second screen.

National Newborn Screening and Genetics Resource Center records as of November 2005 include 17-OHP threshold tiers for 27 states. For normal-birth-weight babies 21 of 27 states have set their cut-off at 50ng/mL or less. The average threshold for low-birth-weight babies in these states is 129ng/mL. Wisconsin is at 55ng/mL and 135ng/mL respectively.

Moreover, CARES made it clear that we believe the goal of any newborn screening program should be to detect as many Classical CAH-affected infants as possible: both salt-wasting – the focus of Wisconsin’s newborn screening program – and simple virilizing – largely ignored by this program.

Of the 50 states, only four - Arkansas, Kansas, Louisiana and West Virginia - remain that do not screen for CAH. We encourage you to write letters of support to these states and contact your legislators (see box to right).

If you live in a state that does not currently screen for CAH and would like to contact your legislator, you can find the contact information here. You can also visit newbornscreening.org to obtain a sample letter to send to the governor or other government official of any state.

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