[Federal Register Volume 78, Number 161 (Tuesday, August 20, 2013)]
[Notices]
[Page 51195]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 2013-20233]



[[Page 51195]]

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DEPARTMENT OF HEALTH AND HUMAN SERVICES

Health Resources and Services Administration


Discretionary 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.), notice is 
hereby given of the following meeting:

    Name: Discretionary Advisory Committee on Heritable Disorders in 
Newborns and Children.
    Dates and Times: September 19, 2013, 10:00 a.m. to 2:15 p.m. 
September 20, 2013, 9:00 a.m. to 3:10 p.m.
    Place: Webinar (Committee members have the option to participate 
in the webinar through in-person attendance at the Health Resources 
and Services Administration (HRSA) Headquarters, 5600 Fishers Lane, 
Rockville, Maryland 20857, but due to space limitations, in-person 
attendance is not available to the public).
    Status: The meeting is open to the public via webinar. 
Individuals are asked to register for the meeting by going to the 
registration Web site at https://www.blsmeetings.net/SACHDNC/index.cfm. The registration deadline is Wednesday, September 11, 
2013. If there are questions/concerns about registration, contact 
Sydney Vranna, Seamon Corporation; telephone: (301) 577-0244, ext. 
2800; email: [email protected].
    Purpose: The Discretionary Advisory Committee on Heritable 
Disorders in Newborns and Children (Committee), as authorized by 
Public Health Service Act (PHS), 42 U.S.C. 217a: Advisory councils 
or committees, was established to advise the Secretary of the 
Department of Health and Human Services about 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. 
Note: The Committee's recommendations regarding additional 
conditions/inherited disorders for screening that have been adopted 
by the Secretary are included in the Recommended Uniform Screening 
Panel and constitute 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 HRSA-supported 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.
    Agenda: The meeting will include: (1) A report on assessing the 
impact of the Committee's recommendations on long-term follow-up on 
state newborn screening programs, (2) a discussion on the policy 
impact of the Committee's previous recommendations regarding sickle 
cell trait screening in athletes, (3) a presentation on genome 
sequencing, (4) a panel on the Affordable Care Act, and (5) updates 
on priority projects from the Committee's Laboratory Standards and 
Procedures, Follow-up and Treatment, and Education and Training 
subcommittees.
    Agenda items may be subject to change as necessary or 
appropriate. The agenda, webinar information, Committee Roster, 
Charter, presentations, and other 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 may register to present 
oral comments and/or submit written comments. All comments, whether 
oral or written, are part of the official Committee record and will 
be available on the Committee's Web site. Advanced registration is 
required to present oral comments. The public comment period is 
scheduled for the morning of September 20, 2013. Written comments 
may be submitted at https://www.blsmeetings.net/SACHDNC/index.cfm. 
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. Individuals who wish 
to make oral comments are required to register for the meeting by 
Wednesday, September 11, 2013, at https://www.blsmeetings.net/SACHDNC/index.cfm. 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. For additional information or questions 
on public comments, please contact Lisa Vasquez, Maternal and Child 
Health Bureau, Health Resources and Services Administration; 
telephone: (301) 443-1080; email: [email protected].
    For More Information Contact: Anyone interested in obtaining 
other relevant information should contact 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: August 14, 2013.
Bahar Niakan,
Director, Division of Policy and Information Coordination.
[FR Doc. 2013-20233 Filed 8-19-13; 8:45 am]
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