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Kylie McConville

Newborn Screening Act Will Help Provide The Necessary Tests Your Baby Needs At Birth

PUBLISHED ON 08/08/2013

The Newborn Screening Save Lives Reauthorization Act is up for a vote in the Senate. The Act — if passed — will reauthorize critical federal programs that provide assistance to states focused on improving and expanding their newborn screening programs. It will also support parent and provider education, as well as ensure laboratory quality and surveillance for newborn screening.

In 2007, prior to the act’s passage, only 10 states and the District of Columbia required infants to be screened for all the recommended disorders.

In 2008, Congress passed the original Newborn Screening Saves Lives Act. It established that national newborn screening guidelines which established national newborn screening guidelines and helped facilitate comprehensive newborn screening in every state. It also created a norm by which newborn screening tests were administered — prior to the law, newborn screening tests varied from state to state. The act helped normalize the screening process across the country.

After the passage of the Newborn Screening Saves Lives Act, 44 states and the District of Columbia require screening of at least 29 of the 31 treatable core conditions.

So, why is reauthorization so important?

The Newborn Screening Saves Lives Reauthorization Act will literally reauthorize the Health Resources and Services Administration (HRSA) grants to states in order to further expand and improve their screening programs, educate parents and health care providers, and improve follow-up care for infants with a condition detected through newborn screening. It will also reauthorize the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children, which provides states with a Recommended Uniform Screening Panel to help ensure every infant is screened for conditions which have a known treatment. The Newborn Screening and Genetic Resource Center will also be reauthorized as well as the Center for Disease Control and Prevention's the Newborn Screening Quality Assurance Program, which is the only comprehensive program in the world that's devoted to ensuring the accuracy of newborn testing.

Additionally, it will reauthorize a CDC grant program, which will provide technical assistance to state newborn screening programs to track outcomes of infants identified through newborn screening. It will also reauthorize the National Institutes of Health Hunter Kelly Newborn Screening program, which works to fund research programs aimed at identifying new treatments for conditions that can be detected through newborn screening. It also works at developing new and improved screening technologies.

Are you hoping the act will be reauthorized?