Congress Considering Reauthorization of Newborn Screening

by Glenn S. Demby | Feb 21, 2015 | Clinical Diagnostics Insider, Diagnostic Testing and Emerging Technologies, Legislation-dtet

Lawmakers have introduced legislation designed to help states with their newborn screening (NBS) programs. The Newborn Screening Saves Lives Reauthorization Act (H.R. 1281) was introduced in U.S. House of Representatives on March 20 by Lucille Roybal-Allard (D-Calif.) and Mike Simpson (R-Idaho) to reauthorize critical federal activities that assist states in improving and expanding their NBS programs and ensuring laboratory quality and surveillance. Prior to passage of the original 2008 NBS legislation, there was great state-by-state variation in the number and quality of public health NBS. Only 10 states and the District of Columbia require infants to be screened for all recommended core conditions. These low numbers prompted the March of Dimes (MOD) to lead a nationwide campaign to urge all states to adopt a full NBS panel to identify infants who may have genetic, metabolic, or hearing disorders that may not be apparent at birth. As a result of those efforts, 44 states and the District of Columbia now require screening of at least 29 of the 31 treatable core conditions. The reauthorization calls for funding of newborn screening initiatives at $25.8 million per year for five years. Specifically, the bill’s key provisions: Extend the Health Resources and Services Administration […]

Lawmakers have introduced legislation designed to help states with their newborn screening (NBS) programs. The Newborn Screening Saves Lives Reauthorization Act (H.R. 1281) was introduced in U.S. House of Representatives on March 20 by Lucille Roybal-Allard (D-Calif.) and Mike Simpson (R-Idaho) to reauthorize critical federal activities that assist states in improving and expanding their NBS programs and ensuring laboratory quality and surveillance. Prior to passage of the original 2008 NBS legislation, there was great state-by-state variation in the number and quality of public health NBS. Only 10 states and the District of Columbia require infants to be screened for all recommended core conditions. These low numbers prompted the March of Dimes (MOD) to lead a nationwide campaign to urge all states to adopt a full NBS panel to identify infants who may have genetic, metabolic, or hearing disorders that may not be apparent at birth. As a result of those efforts, 44 states and the District of Columbia now require screening of at least 29 of the 31 treatable core conditions. The reauthorization calls for funding of newborn screening initiatives at $25.8 million per year for five years. Specifically, the bill’s key provisions:

Extend the Health Resources and Services Administration (HRSA) grants to states to expand their screening programs, educate parents and health care providers, and improve follow-up care for infants with a condition detected through NBS.

Reauthorize the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC), which is scheduled to expire in April 2013. SACHDNC provides states with a Recommended Uniform Screening Panel. “Allowing the committee to expire would eliminate a well-established and scientific process for evaluating NBS and providing guidance to states,” the MOD said in a statement.

Continue HRSA’s Clearinghouse for Newborn Screening Information and the National Newborn Screening and Genetic Resource Center.

Reauthorize the U.S. Centers for Disease Control and Prevention (CDC) Newborn Screening Quality Assurance Program.

Authorize a CDC grant program to provide technical assistance to state newborn screening programs to track outcomes of infants identified through NBS.

Fund the National Institutes of Health Hunter Kelly Newborn Screening program, which finances research aimed at identifying new treatments for conditions detected through NBS and developing new screening technologies.

Congress Considering Reauthorization of Newborn Screening

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