Newborn Screening Saves Lives Reauthorization Act

Sponsors: Representatives Lucille Roybal-Allard (D-CA) and Mike Simpson (R-ID) and Senators Kay Hagan (D-NC) and Orrin Hatch (R-UT)


On March 30, 2013, H.R. 1281, the Newborn Screening Saves Lives Reauthorization Act was introduced in the U.S. House of Representatives and referred to the House Committee on Energy and Commerce. A companion bill, S. 1417, was introduced in the U.S. Senate on August 1, 2013 and referred to the Health, Education, Labor and Pensions Committee.

The Newborn Screening Saves Lives Reauthorization Act reauthorizes critical federal activities that assist states in improving and expanding their newborn screening programs, supporting parent and provider newborn screening education, and ensuring laboratory quality and surveillance.

Summary of key provisions

  • Reauthorizes the Health Resources and Services Administration (HRSA) grants to states to 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.
  • Reauthorizes 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.
  • Reauthorizes HRSA’s Clearinghouse for Newborn Screening Information and the National Newborn Screening and Genetic Resource Center.
  • Reauthorizes the Centers for Diseased Control and Prevention (CDC) Newborn Screening Quality Assurance Program (NSQAP), the only comprehensive program in the world devoted to ensuring the accuracy of newborn tests.
  • Authorizes a CDC grant program to provide technical assistance to state newborn screening programs to track outcomes of infants identified through newborn screening.
  •  Reauthorizes the National Institutes of Health (NIH) Hunter Kelly Newborn Screening program, which funds research aimed at identifying new treatments for conditions that can be detected through newborn screening and developing new screening technologies.

Take Action: Tell Congress that you support the Newborn Screening Saves Lives Reauthorization Act.

See also: Newborn screening

Most common questions

What is the history of government programs for women and children?

Title V of the Social Security Act, was signed into law by President Franklin D. Roosevelt in 1935. Title V, or the Maternal and Child Health (MCH) Services program, pledged support to states to provide services that would protect the "health of our nation's mothers and children."

What federal agencies are involved in premature birth research?

Multiple federal agencies support prematurity-related research but among the most engaged are the Eunice Kennedy Shriver National Institute of Child Health and Human Development at the National Institutes of Health and Maternal and Infant Health Research within the Centers for Disease Control and Prevention.

How can I learn what conditions newborns are screened for in my state?

Two key resources are the National Newborn Screening and Genetics Resource Center and the March of Dimes. You can easily compare state programs on our Peristats website.

©2013 March of Dimes Foundation. The March of Dimes is a non-profit organization recognized as tax-exempt under Internal Revenue Code section 501(c)(3).