Reauthorize the Nation’s Newborn Screening Advisory Committee

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Join us 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.

Every year, more than 12,000 infants are born with health conditions 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 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 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.

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Secretary Azar:

I stand with the undersigned parents, patients, health care providers, public health professionals, and advocates and urge you to act immediately to renew the activities of the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC). Despite the lapse in the Committee’s Congressional authorization, you have the authority to ensure the life-saving work of the ACHDNC continues. 

For nearly 20 years, the ACHDNC has provided direction, guidance and evidence-based recommendations to advance newborn screening. Because of the work of the ACHDNC, states screen for more conditions and there is greater uniformity between states in the number of screened conditions and the quality of screening programs. The work of the ACHDNC has saved lives and prevented disability for thousands of infants and children.

On behalf of the 12,000 babies each year that are impacted by newborn screening, please use your authority to extend the charter of the ACHDNC allowing it to resume its essential work. With the Committee’s next meeting tentatively scheduled for February 13-14, now is the time to act.  

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