Sec. 4. ADVISORY COMMITTEE ON HERITABLE DISORDERS IN NEWBORNS AND CHILDREN
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## SEC. 4 ADVISORY COMMITTEE ON HERITABLE DISORDERS IN NEWBORNS AND CHILDREN Section 1111 of the Public Health Service Act (42 U.S.C. 300b-10) is amended— ####
(1)in subsection (b)— #####
(A)by redesignating paragraphs
(4)through
(6)as paragraphs
(6)through (8), respectively; #####
(B)by inserting after paragraph (3), the following: > > #### “(4) > > provide technical assistance, as appropriate, to individuals and organizations regarding the submission of nominations to the uniform screening panel, including prior to the submission of such nominations; > > > #### “(5) > > take appropriate steps, at its discretion, to prepare for the review of nominations prior to their submission, including for conditions for which a screening method has been validated but other nomination criteria are not yet met, in order to facilitate timely action by the Advisory Committee once such submission has been received by the Committee;” > ; #####
(C)in paragraph
(6)(as so redesignated), by inserting “, including the cost” after “public health impact”; and #####
(D)in paragraph
(8)(as so redesignated)— ######
(i)in subparagraph (A), by striking “achieve rapid diagnosis” and inserting “achieve best practices in rapid diagnosis and appropriate treatment”; ######
(ii)in subparagraph (D), by inserting before the semicolon “, including information on cost and incidence”; ######
(iii)in subparagraph (J), by striking “and” at the end; ######
(iv)in subparagraph (K), by striking the period and inserting “; and”; and ######
(v)by adding at the end the following: > > ##### “(L) > > the timeliness of collection, delivery, receipt, and screening of specimens to be tested for heritable disorders in newborns in order to ensure rapid diagnosis and followup.” > ; ####
(2)in subsection (d)— #####
(A)in paragraph (1)— ######
(i)by striking “180” and inserting “120”; and ######
(ii)by adding at the end the following: “If the Secretary is unable to make a determination to adopt or reject such recommendation within such 120-day period, the Secretary shall notify the Advisory Committee and the appropriate committees of Congress of such determination together with an explanation for why the Secretary was unable to comply within such 120-day period, as well as a plan of action for consideration of such pending recommendation.”; #####
(B)by striking paragraph (2); #####
(C)by redesignating paragraph
(3)as paragraph (2); and #####
(D)by adding at the end the following: > > #### “(3) Deadline for review > > For each condition nominated to be added to the recommended uniform screening panel in accordance with the requirements of this section, the Advisory Committee shall review and vote on the nominated condition within 9 months of the date on which the Advisory Committee referred the nominated condition to the condition review workgroup.” > ; ####
(3)by redesignating subsections
(f)and
(g)as subsections
(g)and (h), respectively; ####
(4)by inserting after subsection
(e)the following new subsection: > > ### “(f) Meetings > > The Advisory Committee shall meet at least 4 times each calendar year, or at the discretion of the Designated Federal Officer in consultation with the Chair.” > ; ####
(5)by amending subsection
(g)(as so redesignated) to read as follows: > > ### “(g) Continuation of Operation of Committee > > > #### “(1) In General > > Notwithstanding section 14 of the Federal Advisory Committee Act, the Advisory Committee shall continue to operate through the end of fiscal year 2019. > > > #### “(2) Continuation if not reauthorized > > If at the end of fiscal year 2019 the duration of the Advisory Committee has not been extended by statute, the Advisory Committee may be deemed, for purposes of the Federal Advisory Committee Act, an advisory committee established by the President or an officer of the Federal Government under section 9(a) of such Act.” > ; and ####
(6)by striking subsection
(h)(relating to authorization of appropriations), as redesignated by paragraph (3).
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Sec. 4
ADVISORY COMMITTEE ON HERITABLE DISORDERS IN NEWBORNS AND CHILDREN
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