2013-20233. 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: [phone], ext. 2800; email: [e-mail].

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: [phone]; email: [e-mail].

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: [phone]; email: [e-mail].

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.