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Call to Action - Save the Nation’s Newborn Screening Advisory Committee

January 17, 2020

Every year, more than 12,000 infants are born with health conditions, such as severe combined immunodeficiency (SCID), that are not apparent at birth, but can cause serious health problems or even death if not treated early. And every year, these babies receive timely life-saving or life-altering care because of newborn screening. Newborn screening has saved or improved the lives of hundreds of thousands of infants, including those with SCID, since it began almost 60 years ago.

This successful public health program benefits from the expert and evidence-based recommendations of the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC). Chartered in 2003, the ACHDNC provides guidance to the Secretary of the Department of Health and Human Services (HHS) on ways to improve the nation’s newborn screening system to save more lives. Its guidance includes reviewing nominations for the list of conditions the federal government recommends every state screen for, known as the RUSP. The ACHDNC’s leadership is essential to the nation’s newborn screening system.

At the end of September, the activities of the ACHDNC were put on an indefinite hold because Congress has not reauthorized the Newborn Screening Saves Lives Act. However, the HHS Secretary has the authority to renew the Committee’s activities without Congressional action. Join IDF in calling on HHS Secretary Alex Azar to act immediately to restart the activities of the ACHDNC so it can continue its critically important work to improve newborn screening and save babies’ lives.
Click here to sign the petition today urging Secretary Azar to resume the life-saving work of the nation’s newborn screening advisory committee!



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