On September 26, the Senate Health, Education, Labor, and Pensions Committee held a hearing, “Newborn Screening Saves Lives: The Past, Present, and Future of the Newborn Screening System.” The hearing focused on the history of nationwide newborn screening programs, as well as on the Newborn Screening Saves Lives Reauthorization Act (S. 1417), sponsored by Chair Kay Hagan (D-NC). The bill would authorize $25.834 million annually for FY2014-2018 for the programs outlined in the law.
Many of the witnesses testified about the state-to-state patchwork of newborn screening systems in existence prior to the enactment of the Newborn Screening Saves Lives Act in 2008 (P.L. 110-204), with some states screening for as few as five heritable disorders, others screening for as many as 21 disorders. “Since the passage…the Newborn Screening Saves Lives Act of 2008, there has been great harmonization among the states, and at the end of 2010, 100 percent of US births were screened for over 30 conditions,” said Dr. Rodney Howell , professor of Pediatrics, University of Miami School of Medicine, Miami, Florida. He continued, “And as a result of these expanded screening programs lives have clearly been saved. The current implementation by the states of the core panel of conditions (not including severe combined immune deficiency and critical congenital heart disease both of which are in the process of being implemented across the country) will identify 5,064 children with hearing loss, 2,156 with primary congenital hypothyroidism, 1,775 children with sickle cell disease, 1,248 children with cystic fibrosis, and 239 children with medium‐chain acyl‐CoA dehydrogenase deficiency, and other important conditions for a total of 12,500 children yearly whose lives will be either profoundly altered or saved due to newborn screening.”
Speaking on behalf of Baby’s First Tests, Executive Director Natasha Bonhomme informed the committee of the importance of providing parents with clear, detailed information about the newborn screening process. She detailed the efforts of the Newborn Screening Clearinghouse, saying “Key components of the online Clearinghouse include: 1) Comprehensive and specific information on the variety of conditions screened in all 50 states, Washington DC, Puerto Rico, the U.S. Virgin Islands, and Guam. The vast majority of parents and providers find this offering indispensable; 2) Guidance on what this experience will involve: when does it take place (most parents don’t know), how parents will receive results, what to do if there is an abnormal result, and how to obtain additional testing; 3) Detailed information on all conditions screened, including condition descriptions, immediate follow-up steps, treatments, expected outcomes, and support services/organizations; 4) Information for health professionals, including links to diagnostic protocols, trainings and toolkits for nurses, and communication guides on how to speak with families about newborn screening; and 5) Information on living with a condition found through newborn screening, including sections that shows stories of children identified through newborn screening and the healthy lives they lead.”
The following witnesses also testified:
