Newborn Screening
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Newborn Screening | |
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There are 29 genetic disorders, including CAH, for which the American College of Medical Genetics (ACMG) recommends nationwide newborn screening. All 29 disorders are treatable, but if not detected early, can result in death or lifelong disabilities. Over the years many people have advocated for a uniform screening standard so that no baby suffers for having been born in the “wrong” state. However, problems such as delayed results, false positives, human error, and financial, legal, and ethical issues have delayed adoption of a uniform standard. Mississippi is currently the only state that requires screening for all 29 conditions. Since its beginning in 2001, CARES has advocated for newborn screening for CAH in all 50 states and internationally. Twenty states have expanded their newborn screening programs to include CAH since CARES began advocating for expansion, and there are only four states (Arkansas, Kansas, Louisiana and West Virginia) plus the District of Columbia that do not currently screen for CAH. New Hampshire, Nebraska and Utah have approved screening for CAH but have not yet implemented it. CARES is focusing its attention on Kansas and Ontario. Kansas requires screening for only 7 of the recommended 29 disorders and has not yet taken any steps towards expanding its requirements. In August, a team from the National Newborn Screening and Genetics Resource Center of Texas met with the Kansas Department of Health and Environment to study the logistics of expanding Kansas’s newborn screening program. Ultimately, it will be the Kansas legislature making the final decision on the expansion. NBS in Canada leaves a lot to be desired as well. Under provincial jurisdiction, the number of disorders screened for ranges from 3 to 28, and only 5 provinces have formal NBS advisory committees and state mandates. Ontario is set to expand its newborn screening program from 2 to 21 tests but has not included CAH. In fact, Ontario’s expansion does not include 4 of the top 7 disorders recommended for screening by the ACMG. We encourage you to write letters of support to Kansas and Ontario. Please contact your legislators and encourage them to expand newborn screening. The contact information for Kansas and Ontario can be found below. Contact Information: Kansas Secretary of Kansas Department of Health and Environment Roderick L. Bremby Governor Ontario Minster of Health and Long-Term Care Chair, Newborn Screening Committee 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: http://www5.lsb.state.ok.us/legislators/lsbaddress.asp . You can also visit http://www.newborn-screening.org/letter.html to write to the governor or other government official of any state. |
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