[Federal Register Volume 80, Number 71 (Tuesday, April 14, 2015)]
[Notices]
[Pages 19992-19993]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 2015-08484]


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DEPARTMENT OF HEALTH AND HUMAN SERVICES

Health Resources and Services Administration


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: Advisory Committee on Heritable Disorders in Newborns and 
Children.
    Dates and Times: May 11, 2015, 8:30 a.m. to 5 p.m., May 12, 2015, 
8:30 a.m. to 4 p.m.
    Place: Webinar.
    Status: The meeting will be open to the public. For more 
information on registration and webinar details, please visit the 
Advisory Committee's Web site: http://www.hrsa.gov/advisorycommittees/mchbadvisory/heritabledisorders. The registration deadline is Monday, 
April 27, 2015, 11:59 p.m. Eastern Time.
    Purpose: The Advisory Committee on Heritable Disorders in Newborns 
and Children (Committee), as authorized by the Public Health Service 
Act (PHS), Title XI, Sec.  1111 (42 U.S.C. 300b-10), 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. In addition, 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 (RUSP) and constitute part of the comprehensive 
guidelines supported by the Health Resources and Services 
Administration (HRSA). 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

[[Page 19993]]

deductible for plan years (i.e., policy years) beginning on or after 
the date that is 1 year from the Secretary's adoption of the condition 
for screening.
    Agenda: The meeting will include: (1) Overview of the Committee's 
authorizing legislation, (2) nomination process for prospective new 
committee members, (3) discussion of the newborn screening informed 
consent amendment in the Newborn Screening Saves Lives Reauthorization 
Act of 2014, (4) update from the Pilot Study Workgroup, (5) 
presentation on the Assistant Secretary for Planning and Evaluation 
funded project on the Affordable Care Act's coverage mandate for 
conditions on the RUSP and the overall costs of screening for state 
newborn screening programs, (6) presentation by the Newborn Screening 
Translational Research Network Long-term Follow-up Project, (7) update 
on the condition review of Adrenoleukodystrophy, and (8) discussion of 
projects for the Committee's workgroups and subcommittees on Laboratory 
Standards and Procedures, Follow-up and Treatment, and Education and 
Training. Tentatively, the Committee is expected to receive comments 
from states and discuss potential implications of the new legislation, 
and perhaps to vote on providing such information and/or associated 
recommendations to the Secretary for consideration regarding the 
newborn screening informed consent amendment in the Newborn Screening 
Saves Lives Reauthorization Act of 2014. This tentative vote does not 
involve any proposed addition of a condition to the RUSP.
    Agenda items are subject to change as necessary or appropriate. The 
agenda, webinar information, Committee Roster, Charter, presentations, 
and other meeting materials will be located on the Advisory Committee's 
Web site at http://www.hrsa.gov/advisorycommittees/mchbadvisory/heritabledisorders.
    Public Comments: Members of the public may present oral comments 
and/or submit written comments. Comments are part of the official 
Committee record. The public comment period is tentatively scheduled 
for May 11, 2015. Advance registration is required to present oral 
comments and/or submit written comments. Registration information will 
be on the Committee Web site at http://www.hrsa.gov/advisorycommittees/mchbadvisory/heritabledisorders. The registration deadline is Monday, 
April 27, 2015, 11:59 p.m. Eastern Time. Written comments must be 
received by the deadline in order to be included in the May meeting 
briefing book. 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 comments. 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, HRSA; email: 
<a href="/cdn-cgi/l/email-protection#204c5641535155455a60485253410e474f56"><span class="__cf_email__" data-cfemail="15796374666460706f557d6766743b727a63">[email protected]</span></a>.
    Contact Person: Anyone interested in obtaining other relevant 
information should contact Debi Sarkar, Maternal and Child Health 
Bureau, HRSA, Room 18W68, Parklawn Building, 5600 Fishers Lane, 
Rockville, Maryland 20857; email: <a href="/cdn-cgi/l/email-protection#bbdfc8dac9d0dac9fbd3c9c8da95dcd4cd"><span class="__cf_email__" data-cfemail="a8ccdbc9dac3c9dae8c0dadbc986cfc7de">[email protected]</span></a>.
    More information on the Advisory Committee is available at http://www.hrsa.gov/advisorycommittees/mchbadvisory/heritabledisorders.

Jackie Painter,
Director, Division of the Executive Secretariat.
[FR Doc. 2015-08484 Filed 4-13-15; 8:45 am]
 BILLING CODE 4165-15-P


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