Title: Aidan’s Law
Policy area: Health

Summary:
Aidan's Law
This bill authorizes newborn screenings for adrenoleukodystrophy (also known as ALD), which is a hereditary condition that damages the insulating membrane of nerve cells in the brain. The bill authorizes hospitals, child care centers, clinics, and similar institutions to test newborns for ALD in accordance with state protocols; such protocols must be approved by the Discretionary Advisory Committee on Heritable Disorders in Newborns and Children.
The bill also reauthorizes for FY2020-FY2023 the heritable disorders screening program for newborns and children that is administered by the Health Resources and Services Administration.

[Congressional Bills 116th Congress]
[From the U.S. Government Publishing Office]
[H.R. 534 Introduced in House (IH)]

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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 Representatives 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 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 section, the chief 
        executive officer for health in each State may prescribe 
        standards and procedures for the administration of testing 
        under subsection (a), including recording the results of such 
        tests, tracking activities, conducting follow-up reviews, and 
        carrying 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 Advisory Committee. In reviewing or prescribing 
        standards and procedures as required under this subsection, the 
        Advisory Committee shall consider standards and procedures 
        adopted in other States with respect to the screening of 
        adrenoleukodystrophy, 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 provide for the screening of 
        infants for adrenoleukodystrophy.''.
    (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 paragraph (3); and
            (3) by inserting after paragraph (1), the following:
            ``(2) to carry out the Heritable Disorders Program 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--
            (1) in paragraph (7) by striking ``and'' after the 
        semicolon;
            (2) by redesignating paragraph (8) as paragraph (9); and
            (3) by inserting after paragraph (7) the following:
            ``(8) carry out activities as provided for under section 
        1118; and''.
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