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 (HHS).

ACTION:

Notice.

SUMMARY:

The Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) 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:

April 23, 2019, 9:00 a.m. to 5:00 p.m. Eastern Time (ET) and April 24, 2019, from 9:00 a.m. to 3:00 p.m. ET.

ADDRESSES:

This meeting will be held in-person and will be webcast. The address for the meeting is 5600 Fishers Lane, Rockville, Maryland 20857. 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. The deadline for online registration is 12:00 p.m. ET on April 19, 2019. Instructions on how to access the meeting via webcast will be provided upon registration.

FOR FURTHER INFORMATION CONTACT:

Alaina Harris, Maternal and Child Health Bureau (MCHB), HRSA, 5600 Fishers Lane, Room 18W66, Rockville, Maryland 20857; 301-443-0721; or AHarris@hrsa.gov.

SUPPLEMENTARY INFORMATION:

ACHDNC provides advice and recommendations to the Secretary of HHS (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's recommendations regarding inclusion of additional conditions for screening, following adoption by the Secretary, are evidence-informed preventive health services provided for in the comprehensive guidelines supported by HRSA through the Recommended Uniform Screening Panel (RUSP) 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 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 April 2019 meeting, ACHDNC will hear from experts in the fields of public health, medicine, heritable disorders, rare disorders, and newborn screening. Agenda items include: (1) Assessing state readiness to implement screening for conditions added to the RUSP; (2) discussing newborn screening pilot studies; (3) reviewing rare disease registries; (4) reviewing spinal muscular atrophy (SMA) implementation; and (5) receiving workgroup updates. Agenda items are subject to changes as priorities dictate and the final meeting agenda will be available on ACHDNC's website at https://www.hrsa.gov/advisory-committees/heritable-disorders/index.html. Information about the ACHDNC, a roster of members, as well as past meeting summaries are also available on the ACHDNC website.

Members of the public will have the opportunity to provide comments. Public participants 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. To submit written comments or request time for an oral comment at the meeting, please register online by 12:00 p.m. ET on April 17, 2019. Visit the ACHDNC website for information on registration, https://www.hrsa.gov/advisory-committees/heritable-disorders/index.html. Individuals associated with groups or who plan to provide comments on similar topics may be asked to combine their comments and present them through a single representative. No audiovisual presentations are permitted. Written comments should identify the individual's name, address, email, telephone number, professional or organization affiliation, background or area of expertise (e.g., parent, family member, researcher, clinician, public health, etc.), and the topic/subject matter.

Individuals who plan to attend and need special assistance or another reasonable accommodation should notify Alaina Harris at the contact information 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-U.S. Citizen attendees must notify HRSA of their planned attendance at least 20 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.