Topic: Health — General
Subject: Health
Date: 2013-08-01 00:00:00

(This measure has not been amended since it was reported to the Senate on December 19, 2013. The summary of that version is repeated here.)

Newborn Screening Saves Lives Reauthorization Act of 2013 - (Sec. 2) Amends the Public Health Service Act to extend through FY2018 a grant program for newborn and child screening programs for heritable disorders. Includes the improvement of the timely collection, delivery, and receipts, and screening of specimens, and the timely diagnosis of heritable disorders in newborns as a permissible use of grant funds.

(Sec. 3) Extends through FY2018 a demonstration program to evaluate the effectiveness of screening, follow-up, counseling or health care services in reducing the morbidity and mortality caused by heritable disorders in newborn and children. Permits the program to also evaluate and assess: (1) methods to improve quality in the diagnosis, treatment, and disease management of heritable disorders based on gaps in services or care; and (2) methods or best practices by which states or political subdivisions of a state, territories, Indian health care facilities or programs, or any entity with appropriate expertise in newborn screening can achieve the timely collection, delivery, receipt, and screening of newborn screening specimens, and the timely diagnosis of heritable disorders in newborns.

(Sec. 4) Reauthorizes through FY2018 and extends for five years the operation of the Advisory Committee on Heritable Disorders in Newborns and Children. Expands the duties of the Advisory Committee to include providing technical assistance to individuals and organizations regarding the submission of nominations to the uniform screening panel. Requires the Advisory Committee to give recommendations, advice, or information to the Secretary of Health and Human Services (HHS) on the timely collection, delivery, receipt, and screening of specimens to be tested for heritable disorders in newborns.

Revises the process for the Secretary to consider the Advisory Committee's recommendations.

Requires the Advisory Committee to meet at least four times per year.

(Sec. 5) Extends through FY2018 the Newborn Screening Clearinghouse of current education and family support and services information, materials, resources, research, and data on newborn screening.

(Sec. 6) Extends through FY2018 a quality assurance program requiring the Secretary, acting through the Director of the Centers for Disease Control and Prevention (CDC), to provide for quality assurance of laboratories involved in screening for heritable disorders. Authorizes the Secretary, acting through the Director, to also provide for the coordination of surveillance activities.

(Sec. 7) Makes the Interagency Coordinating Committee on Newborn and Child Screening permanent. Includes the Commissioner of Food and Drugs (FDA) as a member of the Interagency Committee.

(Sec. 8) Requires the national contingency plan for newborn screening to be updated at least every five years.

(Sec. 9) Allows the expansion of the Hunter Kelly Newborn Screening Research Program to include: (1) providing research findings and data for newborn conditions under review by the Advisory Committee to be added to the recommended uniform screening panel, and (2) conducting pilot studies on conditions recommended by the Advisory Committee to ensure that the screenings are ready for nationwide implementation.

(Sec. 11) Requires the Comptroller General to report to the relevant congressional committees on the timeliness of screening for heritable disorders in newborns.

Requires the Secretary to report to the relevant congressional committees biennially on activities related to newborn screening and screening children who have or are at risk for heritable disorders.