Congressman Mike Simpson today announced the introduction of HR 3825, the Newborn Screening Saves Lives Act of 2007. This act will improve the newborn screening process.
Newborn screening in the United States is not uniform. In fact, more than 1,000 babies are born each year with a detectable and treatable disorder that goes unscreened. And unfortunately, too often inadequate follow-up is provided for many conditions that are revealed.

"Over 4 million babies are born in the United States each year. Using a blood sample from the newborn’s foot identifies infants with genetic or other conditions that can be treated effectively," Simpson said. "This bill gives parents additional resources so that early identification and early treatment can be available for their baby."

Each year newborn screening identifies an estimated 3,000 babies with conditions like PKU, sickle cell disease, and homocystinuria that, if left undetected, would have dire consequences including death and long-term disability. The American College of Medical Genetics recommends that every baby born in the United States be screened for 29 specific disorders.

The Newborn Screening Saves Lives Act seeks to eliminate these unnecessary deaths and severe disabilities by providing grants for the following:Educating parents and health care professionals about newborn screening;

• Establishing a central clearinghouse for newborn screening information and resources;
• Directing the Advisory Committee on Heritable Disorders to continuously update the panel of recommended tests, and encouraging states to uniformly test for all recommended disorders;
• Providing resources for researchers to develop better detection, prevention and treatment strategies, and for states to expand and improve their newborn screening programs;
• Developing a national contingency plan for infant screening in the event of a large scale disaster, and
• Requiring the CDC to ensure the quality of laboratories involved in the newborn testing.

Organizations including; the March of Dimes, the American Academy of Pediatrics, and the Association of Public Health Laboratories agree that better public education about newborn screening is pivotal.