CONGRESSWOMAN ELISE STEFANIK
On Tuesday, June 24, 2014, the House will consider H.R. 1281, the Newborn Screening Saves Lives Reauthorization Act of 2013, under a suspension of the rules. H.R. 1281 was introduced on March 20, 2013 by Rep. Lucille Roybal-Allard (D-CA) and referred to the House Energy and Commerce Committee, which ordered the bill reported, as amended, by unanimous consent.
H.R. 1281 amends the Public Health Service Act to extend and revise a grant program for providing screening and other services related to heritable disorders. Moreover, it reauthorizes a grant program that evaluates the effectiveness of newborn and child screening and follow-up programs. The program is extended to include the evaluation of treatment after screening diagnosis. This legislation also reauthorizes the Advisory Committee on Heritable Disorders in Newborns and Children for five years and requires the Committee to meet at least biannually.
In addition, H.R. 1281 extends the clearinghouse for newborn screening information and expands their duties to include: 1) maintaining current data on the number of conditions for which screening is conducted in each state; and 2) establishing or disseminating guidelines for services and personnel necessary for follow-up, diagnosis, counseling, and treatment of conditions detected by newborn screening. The Secretary of HHS is required under the Act to take into account the expertise of the Advisory Committee and to provide, as appropriate, for the timely processing of newborn-screening tests. Furthermore, this legislation extends requirements for the Secretary to provide for quality assurance of laboratories involved in screening newborns, and extends the Interagency Coordinating Committee on Newborn and Child Screening.
H.R. 1281 also amends the Hunter Kelly Newborn Screening Research Program to require that it: 1) provide research findings and data for newborn conditions under review by the Advisory Committee; and 2) conduct pilot studies on conditions recommended by the Advisory Committee to ensure that screenings are ready for implementation nationwide. Finally, the bill requires the Secretary of HHS and the Comptroller General to submit a report to Congress concerning the timeliness of screening for heritable disorders in newborns and on all activities related to newborn screening.
 Note: This legislation expands grant eligibility to health professional organizations and early childhood health systems.
Newborn screening is the practice of testing newborns for treatable, but not clinically evident disorders. The process was introduced as a public health program in the 1960s, and is now required in every state. The Children’s Health Act of 2000 provided for the establishment of a Federal advisory committee to improve the ability of States to screen for heritable disorders. In 2003, HHS made recommendations that would standardize newborn screening programs in the U.S. In 2008, Congress reauthorized the Advisory Committee and grant programs. This legislation would reauthorize those programs and further strengthen newborn screening activities.
 House Report 113-478, at 6.
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CBO estimates that implementing this legislation would cost approximately $80 million over the 2015-2019 period, assuming the appropriation of the authorized amounts. H.R. 1281 would not affect direct spending or revenues.
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