The Newborn Screening Saves Lives Reauthorization Act (H.R. 1281/S. 1417) was proposed earlier this year in the U.S. Senate and Congress. If passed, this Act would reauthorize 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.
The Newborn Screening Saves Lives Reauthorization Act was sponsored in the House of Representatives in March 2013. Currently, 40 co-sponsors support this Act and it has been referred to a House sub-committee. The Act was sponsored in the Senate, and currently has one co-sponsor. It has been referred to a Senate committee. The MDA board chairman, Dr. Howell, testified on behalf of the ACT before the Senate subcommittee on September 26, 2013.
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: This is currently in progress. Newborn screening test for Duchenne muscular dystrophy and spinal muscular atrophy have 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 would be provided by the Newborn Screening Saves Reauthorization Act would improve early detection and treatment for neuromuscular disease.
As members of the neuromuscular diseases community, we can make 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 at the MDA Advocacy pages.
March of dimes website, (2013 ). Newborn Screening Saves Lives Reauthorization Act. Retrieved from http://www.marchofdimes.com/advocacy/newborn-screening-saves-lives-reauthorization-act.aspx on 10/1/13.
MDA website, (2013). Find Your Elected Officials. Retrieved from http://mda.org/advocacy/find-officials on 10/1/13.
MDA website, (n.d.). Newborn screening Saves Lives Reathorization Act (H.R.1281/S. 1417). Retrieved from http://mda.org/advocacy/newborn-screening-saves-lives-reauthorization-act on 10/113.
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 10/1/13.