[Federal Register Volume 78, Number 51 (Friday, March 15, 2013)]
[Notices]
[Page 16514]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 2013-06042]


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DEPARTMENT OF HEALTH AND HUMAN SERVICES

Health Resources and Services Administration


Secretary's Advisory Committee on Heritable Disorders in Newborns 
and Children; Notice of Meeting

    In accordance with section 10(a)(2) of the Federal Advisory 
Committee Act (Pub. L. 92-463, codified at 5 U.S.C. App. 2), notice is 
hereby given of the following meeting:

    Name: Secretary's Advisory Committee on Heritable Disorders in 
Newborns and Children (SACHDNC).
    Date and Time: April 19, 2013, 9:30 a.m. to 3:00 p.m.
    Place: Virtual via Webinar.
    Status: The meeting is open to the public. Pre-registration is 
required. For more information on registration and webinar details, 
please visit the SACHDNC Web site: http://www.hrsa.gov/advisorycommittees/mchbadvisory/heritabledisorders.
    Purpose: The Secretary's Advisory Committee on Heritable 
Disorders in Newborns and Children (SACHDNC), as authorized by 
Public Law 106-310, which added section 1111 of the Public Health 
Service Act, codified at 42 U.S.C. 300b-10, was established by 
Congress to advise the Secretary of the Department of Health and 
Human Services regarding 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 SACHDNC's 
recommendations regarding additional conditions/inherited disorders 
for screening that have been adopted by the Secretary are included 
in the Recommended Uniform Screening Panel (RUSP) that constitutes 
part of the comprehensive guidelines supported by the Health 
Resources and Services Administration. Pursuant to section 2713 of 
the Public Health Service Act, codified at 42 U.S.C. 300gg-13, non-
grandfathered health plans are required to cover screenings included 
in the comprehensive guidelines without charging a co-payment, co-
insurance, or deductible 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. The SACHDNC also provides 
advice and recommendations concerning grants and projects authorized 
under section 1109 of the Public Health Service Act (42 U.S.C. 300b-
8).
    Agenda: The meeting will include: (1) A policy paper report on 
the impact of recommendations related to sickle cell trait testing; 
(2) a presentation on the Affordable Care Act and the impact on 
individuals with heritable disorders; (3) a presentation by the 
Agency for Healthcare Research and Quality regarding the processes 
behind the U.S. Preventive Services Task Force review process; and 
(4) project reports on screening for Tyrosinemia Type I and Point of 
Care Screening and Lessons Learned.
    Proposed agenda items are subject to change as priorities 
dictate. The agenda, webinar information, Committee Roster, Charter, 
presentations, and meeting materials are located on the Advisory 
Committee's Web site at http://www.hrsa.gov/advisorycommittees/mchbadvisory/heritabledisorders.
    Public Comments: Members of the public can submit written 
comments and/or register to present oral comments. All comments, 
whether oral or written, are part of the official Committee record 
and will be available for public inspection and copying. Individuals 
who wish to make public comments are required to register for the 
webinar and email Lisa Vasquez ([email protected]) by April 10, 
2013. The public comment period is scheduled for the morning of 
April 19, 2013. Written comments should be emailed to Lisa Vasquez 
([email protected]) by April 10, 2013.
    Written comments should identify the individual's name, address, 
email, telephone number, professional or business affiliation, type 
of expertise (i.e., parent, researcher, clinician, public health, 
etc.) and the topic/subject matter of comment. To ensure that all 
individuals who have registered to make oral comments can be 
accommodated, the allocated time may be limited. Individuals who are 
associated with groups or have similar interests may be requested to 
combine their comments and present them through a single 
representative. No audiovisual presentations are permitted.
    Contact Person: Anyone interested in obtaining other relevant 
information should contact the designated federal officer (DFO), 
Debi Sarkar, Maternal and Child Health Bureau, Health Resources and 
Services Administration, Room 18A-19, Parklawn Building, 5600 
Fishers Lane, Rockville, Maryland 20857; telephone: 301-443-1080; 
email: [email protected].
    More information on the Advisory Committee is available at 
http://www.hrsa.gov/advisorycommittees/mchbadvisory/heritabledisorders.

    Dated: March 11, 2013.
Bahar Niakan,
Director, Division of Policy and Information Coordination.
[FR Doc. 2013-06042 Filed 3-14-13; 8:45 am]
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