Representatives Lucille Roybal-Allard (D-Calif.) and Michael Simpson (R-Idaho), and Senators Kay Hagan (D-N.C.) and Orrin Hatch, (R-Utah) introduced the Newborn Screening Saves Lives Reauthorization Act (H.R. 1281/S. 1417) in the U.S. House of Representatives and U.S. Senate, respectively.
The proposed act reauthorizes critical federal programs that provide assistance to states to improve and expand their newborn screening programs; support parent and provider education; and ensure laboratory quality and surveillance for newborn screening. In 2008, Congress first passed the original Newborn Screening Saves Lives Act (P.L. 110-204), which established national newborn screening guidelines and helped facilitate comprehensive newborn screening in every state.
Prior to passage of P.L. 110-204, the number and quality of newborn screening tests varied greatly from state to state. Muscle diseases within MDA’s program for which newborn screening pilot programs are currently under way or under consideration include: Duchenne muscular dystrophy, Pompe disease and spinal muscular atrophy. This critical legislation also 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 that have a known treatment.
Many of the drug therapies currently under development for MDA’s community will be of most benefit if administered either presymptomatically or early in the progression of the disease. Thus, for some of the diseases in MDA’s program, the availability of a newborn screening program at the time of treatment availability presents the best opportunity for impacting optimal and potential lifesaving treatment outcomes.
The MD community is building tremendous momentum as new co-sponsors are signing on in support of the Newborn Screening Saves Lives Reauthorization Act 2013. With 40 co-sponsors in the House and two in the Senate, we’re off to a strong start.
Sponsor: Rep. Lucille Roybal-Allard (CA-40); introduced March 20, 2013
Latest Major Action: Referred to House subcommittee March 22, 2013. Status: Referred to the Subcommittee on Health.
Rep. Joyce Beatty (OH-3) — 7/24/2013
Rep. Sheila Jackson Lee (TX-18) — 5/6/2013
Sponsor: Sen. Kay Hagan (NC); introduced August 1, 2013
Latest Major Action: Referred to Senate committee August 1, 2013. Status: Read twice and referred to the Committee on Health, Education, Labor and Pensions.
Sen. Orrin G. Hatch (UT) — 8/1/2013