I 
116TH CONGRESS 
1ST SESSION 
H. R. 534 
To amend the Public Health Service Act, in relation to requiring 
adrenoleukodystrophy screening of newborns. 
IN THE HOUSE OF REPRESENTATIVES 
JANUARY 14, 2019 
Ms. CLARKE of New York (for herself and Mr. ZELDIN) introduced the 
following bill; which was referred to the Committee on Energy and Commerce 
A BILL 
To amend the Public Health Service Act, in relation to 
requiring adrenoleukodystrophy screening of newborns. 
Be it enacted by the Senate and House of Representa-
tives of the United States of America in Congress assembled, 
SECTION 1. SHORT TITLE. 
This Act may be cited as ‘‘Aidan’s Law’’. 
SEC. 2. FINDINGS. 
Congress finds the following: 
(1) Adrenoleukodystrophy is a deadly genetic 
disease that destroys myelin, the protective sheath 
that surrounds the brain’s neurons, which are the 
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nerve cells that allow us to think and to control our 
muscles. 
(2) Adrenoleukodystrophy affects 1 in 17,000 
people and most severely affects boys and men. 
(3) Adrenoleukodystrophy newborn screening 
tests have been validated with false positive of less 
than 0.1 percent. 
(4) Early identification of adrenoleukodystrophy 
allows those who are affected to be treated and have 
the best chance at a healthy life. 
SEC. 3. SCREENING OF ADRENOLEUKODYSTROPHY. 
(a) IN GENERAL.—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. 1118. ADRENOLEUKODYSTROPHY. 
‘‘(a) IN GENERAL.—Each hospital, child care center, 
clinic, or other similar institution caring for infants who 
are 28 days or less of age (as designated by the Secretary) 
may administer, or cause to have administered, to every 
such infant in its care a test for adrenoleukodystrophy in 
accordance with this section. 
‘‘(b) PROCESS.— 
‘‘(1) IN GENERAL.—In carrying out this sec-
tion, the chief executive officer for health in each 
State may prescribe standards and procedures for 
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the administration of testing under subsection (a), 
including recording the results of such tests, track-
ing activities, conducting follow-up reviews, and car-
rying out educational activities. 
‘‘(2) DISSEMINATION
OF
INFORMATION.—In 
carrying out this section, the chief executive officer 
for health in each State may prescribe standards 
and procedures setting forth the manner in which 
testing information is disseminated to a parent or 
guardian of the infant to be tested. 
‘‘(3) FAILURE TO PRESCRIBE.—If a State has 
not prescribed standards and procedures that are 
approved as provided for in paragraph (4) by the 
date that is 2 years after the date of enactment of 
this section, the Discretionary Advisory Committee 
on Heritable Disorders in Newborns and Children 
established under section 1111 (referred to in this 
section as the ‘Advisory Committee’) shall prescribe 
appropriate standards and procedures which may be 
implemented by such State. 
‘‘(4) REVIEW AND APPROVAL.—The standards 
and procedures prescribed under this subsection 
shall be subject to review and approval by the Advi-
sory Committee. In reviewing or prescribing stand-
ards and procedures as required under this sub-
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section, the Advisory Committee shall consider 
standards and procedures adopted in other States 
with respect to the screening of adrenoleukodystro-
phy, the standards and procedures adopted in such 
State with respect to the screening of infants for 
other heritable diseases, and any scientific evidence 
the Advisory Committee considers relevant to pro-
vide for the screening of infants for adrenoleukodys-
trophy.’’. 
(b) REAUTHORIZATION OF HERITABLE DISORDERS 
PROGRAM.—Section 1117 of the Public Health Service 
Act (42 U.S.C. 300b–16) is amended— 
(1) in paragraph (1), by striking ‘‘and’’ at the 
end; 
(2) by redesignating paragraph (2) as para-
graph (3); and 
(3) by inserting after paragraph (1), the fol-
lowing: 
‘‘(2) to carry out the Heritable Disorders Pro-
gram under section 1109, $15,000,000 for each of 
fiscal years 2020 through 2023; and’’. 
SEC. 4. ADVISORY COMMITTEE ON HERITABLE DISORDERS 
IN NEWBORNS AND CHILDREN. 
Section 1111(b) of the Public Health Service Act (42 
U.S.C. 300b–10(b)) is amended— 
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(1) in paragraph (7) by striking ‘‘and’’ after 
the semicolon; 
(2) by redesignating paragraph (8) as para-
graph (9); and 
(3) by inserting after paragraph (7) the fol-
lowing: 
‘‘(8) carry out activities as provided for under 
section 1118; and’’. 
Æ 
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