As we mark the 50^th anniversary of newborn screening in the United States, the Newborn Screening Saves Lives Reauthorization Act “(H.R. 1281) has been introduced to reauthorize critical programs that provide assistance to states to improve and expand their newborn screening programs. The current law has sunset, or expired, and a new law needs to be passed to keep newborn screening policy efforts at the federal level to continue.

In 2008, Congress passed the original Newborn Screening Saves Lives Act (P.L. 110-204), which established national newborn screening guidelines and helped create comprehensive newborn screening in every state. Prior to passage of P.L. 110-204, the number and quality of newborn screens varied greatly from state to state.  In 2002, some states were screening for only four conditions, while others were screening for up to 36. Today, 44 states and the District of Columbia require screening for at least 29 of the 31 core conditions on the Recommended Uniform Screening Panel.

In May 2010, Secretary Kathleen Sebelius announced her decision that Severe Combined Immunodeficiency Disease (SCID) should be added to the Recommended Uniform Screening Panel. SCID (also known as the Bubble Boy disease) is a primary immunodeficiency disease that is apediatric emergency.  Babies with SCID, a disorder that causes babies to be more susceptible to and develop recurrent infections, appear healthy at birth but without early diagnosis and treatment cannot survive. If newborn babies are screened for SCID, diagnosed and treated within 4 months, there is a 94% chance that those babies will be able to live normal, healthy and productive lives.

HR 1281 will continue the process of determining the federal Recommended Uniform Screening Panel, which now serves as the model for state newborn screening programs, allowing new conditions to be added. If enacted, it would also extend 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 programs.

Please complete the Action Alert urging your Representative to support HR 1281 and promote the health of all newborns and families.