1. Short title
This Act may be cited as “Aidan’s Law”.
Aidan’s Law
A BILL
To amend the Public Health Service Act, in relation to requiring adrenoleukodystrophy screening of newborns.
2. Findings
Congress finds the following:
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.
Adrenoleukodystrophy affects 1 in 17,000 people and most severely affects boys and men.
Adrenoleukodystrophy newborn screening tests have been validated with false positive of less than 0.1 percent.
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
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.”
Reauthorization of Heritable Disorders Program— Section 1117 of the Public Health Service Act (42 U.S.C. 300b–16) is amended—
in paragraph (1), by striking “and” at the end;
by redesignating paragraph (2) as paragraph (3); and
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—
in paragraph (7) by striking “and” after the semicolon;
by redesignating paragraph (8) as paragraph (9); and
by inserting after paragraph (7) the following:
“(8) carry out activities as provided for under section 1118; and”