Aidan’s Law

Bill: 116-hr-534
Sponsor: full_name: Rep. Clarke, Yvette D. [D-NY-9]
Introduced: 2019-01-14
Policy area: Health
Subjects: Advisory bodies

Child health

Health promotion and preventive care

Hereditary and development disorders

Medical tests and diagnostic methods

Neurological disorders
Latest action: action_date: 2019-01-25
text: Referred to the Subcommittee on Health.

Summaries:
action_date: 2019-01-14
action_desc: Introduced in House
text: <p><b>Aidan's Law</b></p> <p>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.</p> <p>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.</p>

tv_txt: I 116th CONGRESS 1st Session H. R. 534 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.

1. Short title This Act may be cited as Aidan’s Law . 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. 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: 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 . 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 .