[House Report 108-14]
[From the U.S. Government Publishing Office]



108th Congress                                                   Report
                        HOUSE OF REPRESENTATIVES
 1st Session                                                     108-14

======================================================================



 
  BIRTH DEFECTS AND DEVELOPMENTAL DISABILITIES PREVENTION ACT OF 2003

                                _______
                                

 February 13, 2003.--Committed to the Committee of the Whole House on 
            the State of the Union and ordered to be printed

                                _______
                                

 Mr. Tauzin, from the Committee on Energy and Commerce, submitted the 
                               following

                              R E P O R T

                        [To accompany H.R. 398]

      [Including cost estimate of the Congressional Budget Office]

    The Committee on Energy and Commerce, to whom was referred 
the bill (H.R. 398) to revise and extend the Birth Defects 
Prevention Act of 1998, having considered the same, report 
favorably thereon with a technical amendment and recommend that 
the bill as amended do pass.

                                CONTENTS

                                                                   Page
Purpose and Summary..............................................     2
Background and Need for Legislation..............................     2
Hearings.........................................................     2
Committee Consideration..........................................     2
Committee Votes..................................................     2
Committee Oversight Findings.....................................     2
Statement of General Performance Goals and Objectives............     3
New Budget Authority, Entitlement Authority, and Tax Expenditures     3
Committee Cost Estimate..........................................     3
Congressional Budget Office Estimate.............................     3
Federal Mandates Statement.......................................     5
Advisory Committee Statement.....................................     5
Constitutional Authority Statement...............................     5
Applicability to Legislative Branch..............................     5
Section-by-Section Analysis of the Legislation...................     5
Changes in Existing Law Made by the Bill, as Reported............     6

    The amendment (stated in terms of the page and line number 
of the introduced bill) is as follows:
    Page 4, line 9, insert ``at the end of the second 
sentence'' after ``before the period''.

                          Purpose and Summary

    H.R. 398, the Birth Defects and Developmental Disabilities 
Act, reauthorizes the National Center on Birth Defects and 
Disabilities at the Centers for Disease Control and Prevention 
(CDC) and expands its programmatic activities. The legislation 
also amends the Developmental Disabilities Act with regard to 
the funding of state developmental disabilities councils.

                  Background and Need for Legislation

    Birth defects are the leading cause of infant mortality in 
the United States, accounting for more than 20% of all infant 
deaths. Of about 120,000 U.S. babies born each year with a 
birth defect, 8,000 die during their first year of life. In 
addition, birth defects are the fifth-leading cause of years of 
potential life lost and contribute substantially to childhood 
morbidity and long-term disability. Tragically, the causes of 
about 70% of all birth defects are unknown.
    Developmental disabilities are a diverse group of physical, 
cognitive, psychological, sensory, and speech impairments that 
begin anytime during development up to 18 years of age. 
Approximately 2% of school-aged children in the United States 
have a serious developmental disability. Like birth defects, in 
most instances, the cause of the disability is not known.
    In 1998, Congress passed the Birth Defects Prevention Act 
(P.L. 105-168) to authorize the CDC to provide surveillance, 
research, and services aimed at prevention of birth defects and 
developmental disabilities. Authorization of appropriations for 
the National Center for Birth Defects and Developmental 
Disabilities expired in fiscal year 2002.

                                Hearings

    The Committee on Energy and Commerce has not held hearings 
on the legislation.

                        Committee Consideration

    On Wednesday, January 29, 2003, the Full Committee on 
Energy and Commerce met in open markup session and ordered H.R. 
398 favorably reported to the House, without amendment, by a 
voice vote, a quorum being present.

                            Committee Votes

    There were no record votes taken in connection with 
ordering H.R. 398 reported. A motion by Mr. Tauzin to order 
H.R. 398 reported to the House, without amendment, was agreed 
to by a voice vote.

                      Committee Oversight Findings

    Pursuant to clause 3(c)(1) of rule XIII of the Rules of the 
House of Representatives, the Committee has not held oversight 
or legislative hearings on this legislation.

         Statement of General Performance Goals and Objectives

    The goal of H.R. 398, the Birth Defects and Developmental 
Disabilities Act of 2003 is to reauthorize the programmatic 
activities at the National Center on Birth Defects and 
Disabilities at the Centers for Disease Control and Prevention.

   New Budget Authority, Entitlement Authority, and Tax Expenditures

    In compliance with clause 3(c)(2) of rule XIII of the Rules 
of the House of Representatives, the Committee finds that H.R. 
398, the ``Birth Defects and Developmental Disabilities 
Prevention Act of 2003'', would result in no new or increased 
budget authority, entitlement authority, or tax expenditures or 
revenues.

                        Committee Cost Estimate

    The Committee adopts as its own the cost estimate prepared 
by the Director of the Congressional Budget Office pursuant to 
section 402 of the Congressional Budget Act of 1974.

                  Congressional Budget Office Estimate

    Pursuant to clause 3(c)(3) of rule XIII of the Rules of the 
House of Representatives, the following is the cost estimate 
provided by the Congressional Budget Office pursuant to section 
402 of the Congressional Budget Act of 1974:

                                     U.S. Congress,
                               Congressional Budget Office,
                                 Washington, DC, February 11, 2003.
Hon. W.J. ``Billy'' Tauzin,
Chairman, Committee on Energy and Commerce,
House of Representatives, Washington, DC.
    Dear Mr. Chairman: The Congressional Budget Office has 
prepared the enclosed cost estimate for H.R. 398, the Birth 
Defects and Developmental Disabilities Prevention Act of 2003.
    If you wish further details on the estimate, we will be 
pleased to provide them. The CBO staff contact is Jeanne De Sa.
            Sincerely,
                                     Douglas Holtz-Eakin, Director.
    Enclosure.

H.R. 398--Birth Defects and Developmental Disabilities Prevention Act 
        of 2003

    Summary: H.R. 398 would amend the Public Health Service Act 
to reauthorize and clarify activities conducted by the National 
Center on Birth Defects and Developmental Disabilities of the 
Centers for Disease Control and Prevention (CDC). The bill 
would authorize the appropriation of such sums as may be 
necessary for fiscal years 2003 through 2007 for that purpose. 
(The previous authorization for the National Center on Birth 
Defects and Developmental Disabilities expired at the end of 
fiscal year 2002.) Additionally, the bill would change the 
allotment formula for grants to State Councils on Developmental 
Disabilities.
    Assuming appropriation of the necessary amounts (including 
annual adjustments for anticipated inflation), CBO estimates 
that implementing H.R. 398 would cost $29 million in 2004 and 
$350 million over the 2004-2008 period. (Without such inflation 
adjustments, the change in outlays would total $340 million 
over the 2004-2008 period.) Enacting this legislation would not 
affect direct spending or revenues.
    H.R. 398 contains no intergovernmental or private-sector 
mandates as defined in the Unfunded Mandates Reform Act (UMRA) 
and would impose no costs on state, local, or tribal 
governments.
    Estimated cost to the Federal Government: The estimated 
budgetary impact of H.R. 398 is shown in the following table. 
The costs of this legislation fall within budget function 550 
(health).

----------------------------------------------------------------------------------------------------------------
                                                                By fiscal year, in millions of dollars
                                                     -----------------------------------------------------------
                                                        2003      2004      2005      2006      2007      2008
----------------------------------------------------------------------------------------------------------------
                                        SPENDING SUBJECT TO APPROPRIATION

CDC Spending Under Current Law for Birth Defects and
 Developmental Disabilities
    Estimated Budget Authority \1\..................        91         0         0         0         0         0
    Estimated Outlays...............................        29        40        16         3         2         0
Proposed Changes \2\
    Estimated Authorization Level...................         0        93        95        97       100         0
    Estimated Outlays...............................         0        29        71        89        95        66
CDC Spending Under H.R. 398 for Birth Defects and
 Developmental Disabilities
    Estimated Authorization Level \1\...............        91        93        95        97       100         0
    Estimated Outlays...............................        29        69        87        93        96        66
----------------------------------------------------------------------------------------------------------------
\1\ Since no full-year appropriation has been enacted for 2003, the CDC is operating under a continuing
  resolution. Therefore, the 2003 level equals the amount appropriated for 2002 under CDC's National Center for
  Birth Defects and Developmental Disabilities program.
\2\ The amounts shown reflect adjustments for anticipated inflation for those activities for which the bill
  would authorize such sums as necessary. Without such inflation adjustments, the five-year changes in
  authorization levels would total $372 million (instead of $385 million) and the changes in outlays would total
  $340 million (instead of $350 million).

    Basis of estimate: For this estimate, CBO assumes H.R. 398 
will be enacted by the end of this fiscal year, and that the 
necessary amounts will be appropriated for each year.
    CDC's National Center on Birth Defects and Developmental 
Disabilities conducts a range of data collection and research 
activities related to the prevention of birth defects and 
developmental disabilities. Those activities include 
surveillance and monitoring of birth defects and developmental 
disabilities such as mental retardation, cerebral palsy, and 
autism, research on the causes of birth defects, and an 
educational campaign to increase the consumption of folic acid 
to prevent spina bifida and anencephaly. Other activities focus 
on surveillance and prevention of Fetal Alcohol Syndrome and 
identification of ways to address the public health needs of 
persons with disabilities. In fiscal year 2002, the center's 
appropriation was $91 million.
    H.R. 398 would reauthorize the center's activities for the 
2003-2007 period and would provide such sums as may be 
necessary for that purpose. Additionally, the bill would 
clarify that the center's activities should encompass data 
collection on disabilities and health, research on the 
prevention of birth defects and disabilities and the prevention 
of secondary health conditions among people with disabilities, 
and support for a National Spina Bifida program. According to 
CDC, the center currently conducts those activities. Therefore, 
the clarifications in H.R. 398 would not result in a broader 
set of authorized activities, and this estimate assumes full-
year funding for 2003 at the continuing resolution level of $91 
million.
    Based on the amount appropriated for the center in fiscal 
year 2002 and taking into account anticipated inflation, CBO 
estimates that the center would require $385 million for fiscal 
years 2004 through 2007. Assuming appropriation of the 
necessary amounts and spending consistent with historical 
outlay rates, CBO estimates that implementing the bill would 
cost $29 million in 2004 and $350 million over the 2004-2008 
period.
    H.R. 398 also would make a technical change to the 
allotment formula for grants to State Councils on Developmental 
Disabilities, a program in which states use federal grant funds 
to provide services to individuals with disabilities. CBO 
estimates this change would have no effect on federal spending.
    Intergovernmental and private-sector impact: H.R. 398 
contains no intergovernmental or private-sector mandates as 
defined in UMRA and would impose no costs on state, local, or 
tribal governments.
    Estimate prepared by: Federal Costs: Jeanne De Sa. Impact 
on State, Local, and Tribal Governments: Leo Lex. Impact on the 
Private Sector: Samuel Kina.
    Estimate approved by: Peter H. Fontaine, Deputy Assistant 
Director for Budget Analysis.

                       Federal Mandates Statement

    The Committee adopts as its own the estimate of Federal 
mandates prepared by the Director of the Congressional Budget 
Office pursuant to section 423 of the Unfunded Mandates Reform 
Act

                      Advisory Committee Statement

    No advisory committees within the meaning of section 5(b) 
of the Federal Advisory Committee Act were created by this 
legislation.

                   Constitutional Authority Statement

    Pursuant to clause 3(d)(1) of rule XIII of the Rules of the 
House of Representatives, the Committee finds that the 
Constitutional authority for this legislation is provided in 
Article I, section 8, clause 3, which grants Congress the power 
to regulate commerce with foreign nations, among the several 
States, and with the Indian tribes.

                  Applicability to Legislative Branch

    The Committee finds that the legislation does not relate to 
the terms and conditions of employment or access to public 
services or accommodations within the meaning of section 
102(b)(3) of the Congressional Accountability Act.

             Section-by-Section Analysis of the Legislation


Section 1. Short title

    This section provides the short title of the bill, the 
Birth Defects and Developmental Disabilities Prevention Act of 
2003.

Section 2. National Center on Birth Defects and Developmental 
        Disabilities

    Section 2 amends section 317C of the Public Health Service 
Act to authorize the CDC National Center on Birth Defects and 
Developmental Disabilities (NCBDD) to collect, analyze, and 
make data available on birth defects, developmental 
disabilities, and disabilities and health. In addition, NCBDD 
will conduct research and programs on the prevention of 
secondary conditions and the promotion of health and wellness 
in individuals living with disabilities. NCBDD will also 
support a National Spina Bifida Program to prevent and reduce 
suffering from the nation's most common permanently disabling 
birth defect. This section strikes the additional statutory 
requirement for the NCBDD to collect and analyze data. This 
section also replaces existing requirements to be included in a 
biennial report to relevant congressional committees on the 
activities of the NCBDD with new requirements, including 
greater information on the incidence and prevalence of birth 
defects, developmental disabilities, and the health status of 
individuals with disabilities. Finally, this section formally 
establishes an Advisory Committee, with members appointed by 
the Director of the National Center for Environmental Health 
with expertise in birth defects, developmental disabilities, 
and disabilities, to advise the NCBDD. Authorization of 
appropriations for the NCBDD is permitted at a level of such 
sums as may be necessary for each of fiscal years 2003 through 
2007.

Section 3. Technical corrections for State Councils on Developmental 
        Disabilities

    This section amends section 122(a) of the Developmental 
Disabilities Assistance and Bill of Rights Act of 2000 to 
insert an additional consideration in the allotment for 
appropriations to States for funding Developmental Disabilities 
Councils. When appropriating dollars to states, this section 
states that the allotment may not be less than $400,000, the 
amount received by the state for the previous year, or the 
amount of Federal appropriations received in fiscal year 2000, 
2001, or 2002, whichever is greater if the amount appropriated 
in a fiscal year is less than $70,000,000. If the amount 
appropriated in a fiscal year is more than $70,000,000, then 
state allotments may not be less than $450,000, the amount 
received by the state for the previous year, or the amount of 
Federal appropriations received in fiscal year 2000, 2001, or 
2002, whichever is greater.

         Changes in Existing Law Made by the Bill, as Reported

  In compliance with clause 3(e) of rule XIII of the Rules of 
the House of Representatives, changes in existing law made by 
the bill, as reported, are shown as follows (existing law 
proposed to be omitted is enclosed in black brackets, new 
matter is printed in italic, existing law in which no change is 
proposed is shown in roman):

             SECTION 317C OF THE PUBLIC HEALTH SERVICE ACT


    NATIONAL CENTER ON BIRTH DEFECTS AND DEVELOPMENTAL DISABILITIES

  Sec. 317C. (a) In General.--
          (1) * * *
          (2) General duties.--The Secretary shall carry out 
        programs--
                  (A) to collect, analyze, and make available 
                data on birth defects [and developmental 
                disabilities], developmental disabilities, and 
                disabilities and health (in a manner that 
                facilitates compliance with [subsection (d)(2)] 
                subsection (c)(2)), including data on the 
                causes of such defects and disabilities and on 
                the incidence and prevalence of such defects 
                and disabilities;
                  (B) to operate regional centers for the 
                conduct of applied epidemiological research on 
                the prevention of such defects and 
                disabilities; [and]
                  (C) to provide information and education to 
                the public on the prevention of such defects 
                and disabilities[.];
                  (D) to conduct research on and to promote the 
                prevention of such defects and disabilities, 
                and secondary health conditions among 
                individuals with disabilities; and
                  (E) to support a National Spina Bifida 
                Program to prevent and reduce suffering from 
                the Nation's most common permanently disabling 
                birth defect.

           *       *       *       *       *       *       *

  [(b) Additional Provisions Regarding Collection of Data.--
          [(1) In general.--In carrying out subsection 
        (a)(2)(A), the Secretary--
                  [(A) shall collect and analyze data by gender 
                and by racial and ethnic group, including 
                Hispanics, non-Hispanic whites, Blacks, Native 
                Americans, Asian Americans, and Pacific 
                Islanders;
                  [(B) shall collect data under subparagraph 
                (A) from birth certificates, death 
                certificates, hospital records, and such other 
                sources as the Secretary determines to be 
                appropriate; and
                  [(C) shall encourage States to establish or 
                improve programs for the collection and 
                analysis of epidemiological data on birth 
                defects, and to make the data available.
          [(2) National clearinghouse.--In carrying out 
        subsection (a)(1), the Secretary shall establish and 
        maintain a National Information Clearinghouse on Birth 
        Defects to collect and disseminate to health 
        professionals and the general public information on 
        birth defects, including the prevention of such 
        defects.]
  [(c)] (b) Grants and Contracts.--
          (1) * * *

           *       *       *       *       *       *       *

  [(d)] (c) Biennial Report.--Not later than February 1 of 
fiscal year 1999 and of every second such year thereafter, the 
Secretary shall submit to the Committee on Commerce of the 
House of Representatives, and the Committee on Labor and Human 
Resources of the Senate, a report that, with respect to the 
preceding 2 fiscal years--
          [(1) contains information regarding the incidence and 
        prevalence of birth defects and the extent to which 
        birth defects have contributed to the incidence and 
        prevalence of infant mortality;]
          (1) contains information regarding the incidence and 
        prevalence of birth defects, developmental 
        disabilities, and the health status of individuals with 
        disabilities and the extent to which these conditions 
        have contributed to the incidence and prevalence of 
        infant mortality and affected quality of life;

           *       *       *       *       *       *       *

          (3) contains an assessment of the extent to which 
        various approaches of preventing birth defects, 
        developmental disabilities, and secondary health 
        conditions among individuals with disabilities have 
        been effective;
          (4) describes the activities carried out under this 
        section; [and]
          (5) contains information on the incidence and 
        prevalence of individuals living with birth defects and 
        disabilities or developmental disabilities, information 
        on the health status of individuals with disabilities, 
        information on any health disparities experienced by 
        such individuals, and recommendations for improving the 
        health and wellness and quality of life of such 
        individuals;
          (6) contains a summary of recommendations from all 
        birth defects research conferences sponsored by the 
        Centers for Disease Control and Prevention, including 
        conferences related to spina bifida; and
          [(5)] (7) contains any recommendations of the 
        Secretary regarding this section.
  [(e)] (d) Applicability of Privacy Laws.--The provisions of 
this section shall be subject to the requirements of section 
552a of title 5, United States Code. All Federal laws relating 
to the privacy of information, including section 444 of the 
General Education Provisions Act, shall apply to the data and 
information that is collected under this section, except that 
the Centers for Disease Control and Prevention shall have 
access to information under section 444(b)(1)(F) of such Act 
solely for purposes of carrying out subsection (a)(2) of this 
section and shall otherwise comply with all other requirements 
of such section 444.
  (e) Advisory Committee.--Notwithstanding any other provision 
of law, the members of the advisory committee appointed by the 
Director of the National Center for Environmental Health that 
have expertise in birth defects, developmental disabilities, 
and disabilities and health shall be transferred to and shall 
advise the National Center on Birth Defects and Developmental 
Disabilities effective on the date of enactment of the Birth 
Defects and Developmental Disabilities Prevention Act of 2003.
  (f) Authorization of Appropriations.--For the purpose of 
carrying out this section, there are authorized to be 
appropriated [$30,000,000 for fiscal year 1999, $40,000,000 for 
fiscal year 2000, and such sums as may be necessary for each of 
the fiscal years 2001 and 2002.] such sums as may be necessary 
for each of fiscal years 2003 through 2007.
                              ----------                              


 SECTION 122 OF THE DEVELOPMENTAL DISABILITIES ASSISTANCE AND BILL OF 
                           RIGHTS ACT OF 2000

SEC. 122. STATE ALLOTMENTS.

  (a) Allotments.--
          (1) * * *

           *       *       *       *       *       *       *

          (3) Minimum allotment for appropriations less than or 
        equal to $70,000,000.--
                  (A) In general.--Except as provided in 
                paragraph (4), for any fiscal year the 
                allotment under this section--
                          (i) * * *
                          (ii) to any State not described in 
                        clause (i) may not be less than 
                        $400,000, the amount received by the 
                        State for the previous year, or the 
                        amount of Federal appropriations 
                        received in fiscal year 2000, 2001, or 
                        2002, whichever is greater.

           *       *       *       *       *       *       *

          (4) Minimum allotment for appropriations in excess of 
        $70,000,000.--
                  (A) In general.--In any case in which the 
                total amount appropriated under section 129 for 
                a fiscal year is more than $70,000,000, the 
                allotment under this section for such fiscal 
                year--
                          (i) * * *
                          (ii) to any State not described in 
                        clause (i) may not be less than 
                        $450,000, the amount received by the 
                        State for the previous year, or the 
                        amount of Federal appropriations 
                        received in fiscal year 2000, 2001, or 
                        2002, whichever is greater.

           *       *       *       *       *       *       *


                                
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