[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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