[Federal Register Volume 87, Number 149 (Thursday, August 4, 2022)]
[Notices]
[Pages 47766-47767]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 2022-16654]


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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).

[[Page 47767]]


ACTION: Notice.

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SUMMARY: In accordance with the Federal Advisory Committee Act and the 
Public Health Service Act, this notice announces a public meeting of 
the Advisory Committee on Heritable Disorders in Newborns and Children 
(ACHDNC or Committee). 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: Tuesday, August 30, 2022, from 10:00 a.m. to 2:00 p.m. Eastern 
Time (ET) and Wednesday, August 31, 2022, from 10:00 a.m. to 1:00 p.m. 
ET.

ADDRESSES: This meeting will be held via webinar. 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 August 29, 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 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 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, 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 August 30-31, 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 one of the Krabbe disease evidence 
review;
    (2) A presentation and Committee discussion on the infant formula 
shortage;
    (3) A presentation and Committee discussion on advancing the 
newborn screening system;
    (4) A presentation on the Long-term Follow-up for Severe Combined 
Immunodeficiency and Other Newborn Screening Conditions Program; and
    (5) Workgroup updates.
    The agenda for this meeting does not include any vote or decision 
to recommend a condition for inclusion in the Recommended Uniform 
Screening Panel. As noted in the agenda items, the Committee will hear 
presentation on evidence review of Krabbe disease, which may lead to 
such a recommendation at a future time.
    Agenda items are subject to change as priorities dictate. 
Information about 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. The Committee will honor oral comments in the order they are 
requested and may be limited as time allows. Participants who wish to 
provide a written statement or make oral comments to ACHDNC must submit 
their request via the registration website by 12:00 p.m. ET on 
Wednesday, August 24, 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.

Maria G. Button,
Director, Executive Secretariat.
[FR Doc. 2022-16654 Filed 8-3-22; 8:45 am]
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