[Federal Register Volume 89, Number 6 (Tuesday, January 9, 2024)]
[Notices]
[Pages 1105-1106]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 2024-00264]


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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 section 1111(g) of the Public Health 
Service Act, and 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: Monday, January 29, 2024, from 10 a.m. to 5 p.m. Eastern Time 
(ET) and Tuesday, January 30, 2024, from 10 a.m. to 3 p.m. ET.

ADDRESSES: This meeting will be held in person with webcast options. 
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, by the deadline of 12 p.m. ET on Friday, January 
26, 2024. Instructions on how to access the meeting via webcast will be 
provided upon registration. If you are a non-United States citizen who 
would like to attend the January meeting in-person, please contact 
[email protected] by January 11, 2024.

FOR FURTHER INFORMATION CONTACT: Kim Morrison, Maternal and Child 
Health Bureau, HRSA, 5600 Fishers Lane, Room, Rockville, Maryland 
20857; 301-822-4978; or [email protected].

SUPPLEMENTARY INFORMATION: ACHDNC provides advice and recommendations 
to the Secretary 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. 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 January 29-30, 2024, 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 topics:
    (1) A possible presentation on qualitative research that focuses on 
family perspectives;
    (2) Updates from Committee ad hoc topic groups. Potential topics 
include: the nomination process and revisions to the decision matrix;
    (3) An update on the evidence review of Duchenne muscular dystrophy 
nomination; and
    (4) Presentation of the final evidence-based review report on the 
Krabbe disease condition nomination for possible inclusion on the RUSP. 
Following this report presentation, the ACHDNC expects to vote on the 
second meeting day, on January 30, 2024, whether to recommend to the 
Secretary adding Krabbe disease to the RUSP (with potential 
implications under section 2713 of the Public Health Service Act, as 
noted above).
    The agenda for this meeting includes a potential vote to recommend 
a nominated condition (Krabbe disease) be added by the Secretary to the 
RUSP. 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 on any or all of the above agenda items. 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. Subject to change: members of the public registered to submit 
oral public comments on Krabbe disease are tentatively scheduled to 
provide their statements on Tuesday, January 30, 2024. Members of the 
public registered to provide oral public comments on all other newborn 
screening related topics are tentatively scheduled to provide

[[Page 1106]]

their statements on Monday, January 29, 2024. Requests to provide a 
written statement or make oral comments to ACHDNC must be submitted via 
the registration website by 12 p.m. ET on Tuesday, January 17, 2024. 
Written comments will be shared with the Committee prior to the meeting 
so that they have an opportunity to consider them in advance of the 
meeting. Individuals who need special assistance or another reasonable 
accommodation should notify Kim Morrison 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-
United States Citizen attendees must notify HRSA of their planned 
attendance at least 15 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, Executive Secretariat.
[FR Doc. 2024-00264 Filed 1-8-24; 8:45 am]
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