AMCHP's Position | Issue Overview | Title V's Role | Pending Legislation | AMCHP's Voice
AMCHP supports the Newborn Screening Save Lives Act and particularly calls for inclusion of sufficient funding for the development and implementation of a robust long-term follow-up (LTFU) system.
Newborn screening is more than just a laboratory test; it comprises a complex system beginning with laboratory screening and continuing through confirmatory testing and diagnosis to medical management and care coordination for those with confirmed disorders. It must also include systematic data collection to guide continuous quality improvement.
Sens. Christopher Dodd (D-Conn.), Orrin Hatch (R-Utah) and Hillary Clinton (D-N.Y.) sponsored the Newborn Screening Saves Lives Act (S. 1858), which, on Dec. 13, 2007, was approved by the U.S. Senate by unanimous consent. In the House of Representatives, the bill (H.R. 3825) was sponsored by Reps. Lucille Roybal-Allard (D-Calif.), Mike Simpson (R-Idaho), Tom Reynolds (R-N.Y.), and Henry Waxman (D-Calif). The House unanimously passed the bill on April 8 and it was signed into law by President Bush on April 24, 2008.
This act authorizes about $45 million to improve education and expand newborn screening programs to improve detection and treatment and to implement recommendations for all states to screen for a minimum of 29 disorders.
Title V’s Role
State Title V program responsibilities include:
- Assuring that ongoing, high-quality, medical management - including specialty care and care coordination when needed - are provided;
- Assuring transition of young adults to appropriate adult medical care;
- Periodically assessing patient progress through review of defined outcome indicators;
- Collecting and analyzing state and national LTFU data; and,
- Engaging in continuous quality improvement at the local, state and national levels.
AMCHP staff conducted a number of Hill visits and calls in support of this bill. We also signed on to a coalition letter organized by the March of Dimes.
On April 8, AMCHP was invited to participate in a press conference organized by the March of Dimes featuring Jim Kelly – the former Buffalo Bills quarterback - along with Sens. Chris Dodd (D-Conn.) and Hillary Clinton (D-N.Y.) and Rep. Thomas Reynolds (R-N.Y.). Additional speakers included Dr. Alan Fleischman, senior vice president and medical director of the March of Dimes, and Jill Levy-Fisch, president of the Save Babies through Screening Foundation. AMCHP released a statement at the press conference.