The Newborn Screening Saves Lives Reauthorization Act (H.R. 1281/S. 1417) was proposed in 2013 in the U.S. Senate and Congress. Passed by the House in 2013 and Senate in 2014, and signed into law in December, 2014, this Act reauthorizes federal programs related to newborn screening.

The original Newborn Screening Saves Lives Act (P.L. 110-204) has assisted state programs to improve newborn screening. The Secretary’s Advisory Committee on Heritable Disorders was formed: This Committee as provided states with the Recommended Uniform Screening Panel and national newborn screening guidelines were created, increasing consistency between states. This Act helped to support education for parents and healthcare providers. The original Act also helped to improve quality assurance and surveillance measures for laboratories.

Progress has been made towards providing newborn screening for neuromuscular disease. Recently, it was recommended that the neuromuscular disease Pompe disease be added to the recommendation list for newborn screening tests by the Advisory Committee: This is currently in progress. Newborn screening test for Duchenne muscular dystrophy and spinal muscular atrophy have also been under consideration recently.

Early screening tests and better treatment for other neuromuscular diseases are being actively researched and will become increasingly available. The resources that will be provided by the Newborn Screening Saves Reauthorization Act will improve early detection and treatment for neuromuscular disease.

As members of the neuromuscular diseases community, we have made our voices heard regarding this and other legislation important to us and the well-being of our children. You will find more information designed to help you contact your legislators regarding relevant legislation at the MDA Advocacy pages.

Resources:

MDA website, (2014). Find Your Elected Officials. Retrieved from http://mda.org/advocacy/find-officials on 12/19/20.

MDA website, (2014). MDA Community Helps Pass Newborn Screening Saves Lives Reauthorization Act. Retrieved from http://mda.org/media/press-releases/mda-community-helps-pass-newborn-screening-saves-lives-reauthorization-act on 12/19/14.

March of dimes website, (2014 ). Statement Of Dr. Jennifer L. Howse, President, March Of Dimes On President Obama Signing The Newborn Screening Saves Lives Reauthorization Act Into Law. Retrieved from http://news.yahoo.com/statement-dr-jennifer-l-howse-president-march-dimes-230700575.html;_ylt=A0LEVixUWJRUqJIAl50PxQt. On 12/19/14.

Wahl, M., (2013). MDA’s Board Chairman Advocates Support for Newborn Screening. Quest. Retrieved from http://quest.mda.org/news/mda-board-chairman-advocates-support-newborn-screening on 12/19/14.