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MDA's Board Chairman Testifies Before US Senate Subcommittee to Advocate for Newborn Screening
Date:9/27/2013

Tucson, AZ (PRWEB) September 27, 2013

Pediatrician and medical geneticist R. Rodney Howell, who chairs MDA's Board of Directors, testified Thursday before the Subcommittee on Children and Families of the U.S. Senate Committee on Health, Education, Labor & Pensions to advocate for passage of the Newborn Screening Saves Lives Reauthorization Act of 2013 (S. 1417).

Howell emphasized that:

  •     conditions that can be detected at birth for which there are emerging therapies should be given priority in the review process for inclusion in the list of recommended newborn screening tests;
  •     priority review will not reduce the scientific rigor of the review process; and
  •     newborn screening reduces the overall cost of illness (sometimes called "burden of disease") for the conditions involved.

"It is important to emphasize that the conditions that are included on the newborn screening panel all result in serious medical complications (e.g., developmental delay) and/or death if not recognized early," Howell told the subcommittee. "All children with these conditions benefit from early diagnosis and treatment."

Three disorders in MDA's program are or may become candidates for addition to the Recommended Uniform Screening Panel (RUSP.) Pompe disease was presented to the Advisory Committee for possible inclusion in the RUSP in January 2013, and the Advisory C
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