[Federal Register Volume 87, Number 191 (Tuesday, October 4, 2022)]
[Notices]
[Pages 60175-60176]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 2022-21461]
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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.
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 or Committee) 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:
Thursday, November 3, 2022, from 9:30 a.m.-3:00 p.m.
Eastern Time (ET); and
Friday, November 4, 2022, from 9:30 a.m.-1:00 p.m. ET.
ADDRESSES: This meeting will be held in-person and via webinar. 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 register online at https://www.achdncmeetings.org/registration/ by the deadline of 12:00 p.m. ET on November 2, 2022.
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, HRSA, 5600 Fishers Lane, Room 18W66, Rockville, Maryland
20857; 301-443-0721; or [email protected].
SUPPLEMENTARY INFORMATION: ACHDNC provides advice and recommendations
to the Secretary of the Department of Health and Human Services
(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.
The ACHDNC reviews and reports regularly on newborn and childhood
screening practices, recommends improvements in the national newborn
and childhood screening programs, and fulfills requirements stated in
the authorizing legislation. In addition, ACHDNC's recommendations
regarding inclusion of additional conditions for screening on the
Recommended Uniform Screening Panel (RUSP), following adoption by the
Secretary, are evidence-informed preventive health services provided
for in the comprehensive guidelines supported by HRSA 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 non-grandfathered 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 November 3-4, 2022, meeting, ACHDNC will hear from
experts in the fields of public health, medicine, heritable disorders,
rare disorders, and newborn screening. Agenda items include the
following:
(1) A presentation on phase two of the Krabbe disease evidence
review,
(2) A presentation on the Department of Defense's newborn screening
system,
(3) A presentation on the process for states to implement
conditions recently added to the RUSP,
(4) A presentation on Blueprint for Change for a system of services
for children and youth with special health care needs (see https://
mchb.hrsa.gov/
[[Page 60176]]
programs-impact/focus-areas/children-youth-special-health-care-needs-
cyshcn/blueprint-change),
(5) A Committee discussion on advancing state newborn screening
systems,
(6) Workgroup updates, and
(7) A potential update on the Duchenne muscular dystrophy condition
nomination and a potential vote on whether to move it forward to full
evidence-based review.
The agenda for this meeting includes a potential vote the Committee
may hold on whether or not to recommend a nominated condition, Duchenne
muscular dystrophy to full evidence-based review, which may lead to a
recommendation to add or not add this condition to the RUSP at a future
time. In addition, as noted in the agenda items, the Committee will
hear a presentation on the evidence review of Krabbe disease, which may
lead to such a recommendation to add or not add this condition to the
RUSP at a future time.
Agenda items are subject to change as priorities dictate.
Information about the ACHDNC, including a roster of members and past
meeting summaries, is also available on the ACHDNC website.
Members of the public also will have the opportunity to provide
comments. Public participants may request to provide general oral
comments and may submit written statements in advance of the scheduled
meeting. Oral comments will be honored in the order they are requested
and may be limited as time allows. Requests to provide a written
statement or make oral comments to the ACHDNC must be submitted via the
registration website by 12:00 p.m. ET on Thursday, October 27, 2022.
Individuals who need special assistance or another reasonable
accommodation should notify Alaina Harris at the address and phone
number 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 by
contacting [email protected] no later than October 12, 2022, in order to
facilitate entry into the building. All attendees are required to
present government-issued identification prior to entry.
Maria G. Button,
Director, Executive Secretariat.
[FR Doc. 2022-21461 Filed 10-3-22; 8:45 am]
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