[Federal Register Volume 84, Number 133 (Thursday, July 11, 2019)]
[Notices]
[Pages 33078-33079]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 2019-14758]
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DEPARTMENT OF HEALTH AND HUMAN SERVICES
Health Resources and Services Administration
Meeting of the Advisory Committee on Heritable Disorders in
Newborns and Children
AGENCY: Health Resources and Services Administration (HRSA), Department
of Health and Human Services (HHS).
ACTION: Notice.
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SUMMARY: In accordance with the Federal Advisory Committee Act, this
notice announces that the Advisory Committee on Heritable Disorders in
Newborns and Children (ACHDNC) has scheduled a public meeting.
Information about the ACHDNC and the agenda for this meeting can be
found on the ACHDNC website at https://www.hrsa.gov/advisory-committees/heritable-disorders/index.html.
DATES: August 1, 2019, 9:00 a.m.-5:00 p.m. Eastern Time (ET) and August
2, 2019, 9:00 a.m.-3:00 p.m. ET.
ADDRESSES: This meeting will be held in person and by webcast. The
address for the meeting is 5600 Fishers Lane, Rockville, Maryland
20857. While this meeting is open to the public, advance registration
is required. Please visit the ACHDNC website for information on
registration: https://www.hrsa.gov/advisory-committees/heritable-disorders/index.html. The deadline for online registration is 12:00
p.m. ET on July 29, 2019. Instructions on how to access the meeting via
webcast will be provided upon registration.
FOR FURTHER INFORMATION CONTACT: Alaina Harris, Maternal and Child
Health Bureau (MCHB), HRSA, 5600 Fishers Lane, Room 18W66, Rockville,
Maryland 20857; 301-443-0721; or [email protected].
[[Page 33079]]
SUPPLEMENTARY INFORMATION: ACHDNC provides advice and recommendations
to the Secretary of HHS (Secretary) on the development of newborn
screening activities, technologies, policies, guidelines, and programs
for effectively reducing morbidity and mortality in newborns and
children having, or at risk for, heritable disorders. ACHDNC's
recommendations regarding inclusion of additional conditions for
screening, following adoption by the Secretary, are evidence-informed
preventive health services provided for in the comprehensive guidelines
supported by HRSA through the Recommended Uniform Screening Panel
(RUSP) pursuant to section 2713 of the Public Health Service Act (42
U.S.C. 300gg-13). Under this provision, non-grandfathered group health
plans and health insurance issuers offering group or individual health
insurance are required to provide insurance coverage without cost-
sharing (a co-payment, co-insurance, or deductible) for preventive
services for plan years (i.e., policy years) beginning on or after the
date that is one year from the Secretary's adoption of the condition
for screening.
During the August 1-2, 2019, meeting, ACHDNC will hear from experts
in the fields of public health, medicine, heritable disorders, rare
disorders, and newborn screening. Agenda items include: (1) Review of
the RUSP condition nomination and evidence review process; (2) updates
on screening methodologies; (3) rare disease registries; (4) linking
data resources; and (5) workgroup updates. Agenda items are subject to
changes as priorities dictate. The final meeting agenda will be
available on ACHDNC's website: https://www.hrsa.gov/advisory-committees/heritable-disorders/index.html. Information about ACHDNC, a
roster of members, as well as past meeting summaries are also available
on the ACHDNC website.
Members of the public will have the opportunity to provide
comments. In addition to general public comments, the ACHDNC is
soliciting specific feedback at this meeting from the public on
processes for nominating conditions to the RUSP condition and
conducting evidence reviews. There will be time reserved on the agenda
for public participants to provide comments on the RUSP condition
nomination and evidence review process. Requests to offer oral comments
will be accepted in the order they are requested and may be limited as
time allows. Public participants may also submit written statements as
further described below. To submit written comments or request time for
an oral comment at the meeting, please register online by 12:00 p.m. ET
on July 26, 2019. Visit the ACHDNC website for information on
registration https://www.hrsa.gov/advisory-committees/heritable-disorders/index.html. Individuals associated with groups or who plan to
provide comments on similar topics may be asked to combine their
comments and present them through a single representative. No
audiovisual presentations are permitted. Written comments should
identify the individual's name, address, email, telephone number,
professional or organization affiliation, background or area of
expertise (e.g., parent, family member, researcher, clinician, public
health, etc.), and the topic/subject matter.
Individuals who plan to attend and need special assistance or
another reasonable accommodation should notify Alaina Harris, at the
contact information listed above, at least 10 business days prior to
the meeting. Since this meeting occurs in a federal government
building, attendees must go through a security check to enter the
building. Non-U.S. Citizen attendees must notify HRSA of their planned
attendance at least 20 business days prior to the meeting in order to
facilitate their entry into the building. All attendees are required to
present government-issued identification prior to entry.
Maria G. Button,
Director, Division of the Executive Secretariat.
[FR Doc. 2019-14758 Filed 7-10-19; 8:45 am]
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