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consideration the expertise of the Advisory 
Committee’’; and 
(B) in paragraph (1), by inserting ‘‘timeli-
ness for processing such tests,’’ after ‘‘newborn- 
screening tests,’’; and 
(3) by striking subsection (b) (relating to au-
thorization of appropriations) and inserting the fol-
lowing: 
‘‘(b) SURVEILLANCE ACTIVITIES.—The Secretary, 
acting through the Director of the Centers for Disease 
Control and Prevention, and taking into consideration the 
expertise of the Advisory Committee on Heritable Dis-
orders in Newborns and Children established under sec-
tion 1111, may provide, as appropriate, for the coordina-
tion of surveillance activities, including— 
‘‘(1) through standardized data collection and 
reporting, as well as the use of electronic health 
records; and 
‘‘(2) by promoting data sharing regarding new-
born screening with State-based birth defects and 
developmental disabilities monitoring programs.’’. 
SEC. 7. INTERAGENCY COORDINATING COMMITTEE ON 
NEWBORN AND CHILD SCREENING. 
Section 1114 of the Public Health Service Act (42 
U.S.C. 300b–13) is amended— 
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(1) in subsection (c), by striking ‘‘the Adminis-
trator, the Director of the Agency for Healthcare 
Research and Quality,’’ and inserting ‘‘the Adminis-
trator of the Health Resources and Services Admin-
istration, the Director of the Agency for Healthcare 
Research and Quality, the Commissioner of Food 
and Drugs,’’; and 
(2) by striking subsection (e) (relating to au-
thorization of appropriations). 
SEC. 8. NATIONAL CONTINGENCY PLAN FOR NEWBORN 
SCREENING. 
Section 1115(a) of the Public Health Service Act (42 
U.S.C. 300b–14(a)) is amended— 
(1) by striking ‘‘consortia’’ and inserting ‘‘con-
sortium’’; and 
(2) by adding at the end the following: ‘‘The 
plan shall be updated as needed and at least every 
five years.’’. 
SEC. 9. HUNTER KELLY RESEARCH PROGRAM. 
Section 1116 of the Public Health Service Act (42 
U.S.C. 300b–15) is amended— 
(1) in subsection (a)(1)— 
(A) in subparagraph (B), by striking ‘‘; 
and’’ and inserting a semicolon; 
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(B) by redesignating subparagraph (C) as 
subparagraph (E); and 
(C) by inserting after subparagraph (B) 
the following: 
‘‘(C) providing research findings and data 
for newborn conditions under review by the Ad-
visory Committee on Heritable Disorders in 
Newborns and Children to be added to the rec-
ommended uniform screening panel; 
‘‘(D) conducting pilot studies on conditions 
recommended by the Advisory Committee on 
Heritable Disorders in Newborns and Children 
to ensure that screenings are ready for nation-
wide implementation; and’’; and 
(2) in subsection (c), by striking ‘‘of the Na-
tional Institutes of Health Reform Act of 2006’’. 
SEC. 10. AUTHORIZATION OF APPROPRIATIONS. 
Part A of title XI of the Public Health Service Act 
(42 U.S.C. 300b–1 et seq.) is amended by adding at the 
end, the following: 
‘‘SEC. 1117. AUTHORIZATION OF APPROPRIATIONS FOR 
NEWBORN SCREENING PROGRAMS AND AC-
TIVITIES. 
‘‘There are authorized to be appropriated— 
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‘‘(1) to carry out sections 1109, 1110, 1111, 
and 1112, $11,900,000 for each of fiscal years 2015 
through 2019; and 
‘‘(2) to carry out section 1113, $8,000,000 for 
each of fiscal years 2015 through 2019.’’. 
SEC. 11. REPORTS TO CONGRESS. 
(a) GAO REPORT ON TIMELINESS OF NEWBORN 
SCREENING.— 
(1) IN GENERAL.—Not later than 2 years after 
the date of enactment of this Act, the Comptroller 
General of the United States shall submit a report 
to the Committee on Health, Education, Labor, and 
Pensions of the Senate and the Committee on En-
ergy and Commerce of the House of Representatives 
concerning the timeliness of screening for heritable 
disorders in newborns. 
(2) CONTENTS.—The report submitted under 
paragraph (1) shall include the following: 
(A) An analysis of information regarding 
the timeliness of newborn screening, which may 
include the time elapsed from birth to specimen 
collection, specimen collection to receipt by lab-
oratory, specimen receipt to reporting, reporting 
to followup testing, and followup testing to con-
firmed diagnosis. 
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(B) A summary of any guidelines, rec-
ommendations, or best practices available to 
States and health care providers intended to 
support a timely newborn screening system. 
(C) An analysis of any barriers to main-
taining a timely newborn screening system 
which may exist and recommendations for ad-
dressing such barriers. 
(b) REPORT BY SECRETARY.— 
(1) IN GENERAL.—The Secretary of Health and 
Human Services shall— 
(A) not later than 1 year after the date of 
enactment of this Act, submit to the Committee 
on Health, Education, Labor, and Pensions of 
the Senate and the Committee on Energy and 
Commerce of the House of Representatives a 
report on activities related to— 
(i) newborn screening; and 
(ii) screening children who have or are 
at risk for heritable disorders; and 
(B) not less than every 2 years, submit to 
such committees an updated version of such re-
port. 
(2) CONTENTS.—The report submitted under 
this subsection shall contain a description of— 
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(A) the ongoing activities under sections 
1109, 1110, and 1112 through 1115 of the 
Public Health Service Act; and 
(B) the amounts expended on such activi-
ties. 
Passed the House of Representatives June 24, 2014. 
Attest: 
KAREN L. HAAS, 
Clerk. 
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