[Congressional Bills 106th Congress]
[From the U.S. Government Publishing Office]
[H.R. 5260 Introduced in House (IH)]







106th CONGRESS
  2d Session
                                H. R. 5260

To amend the Public Health Service Act to provide for a national system 
 of screening newborn infants for hereditary disorders, and for other 
                               purposes.


_______________________________________________________________________


                    IN THE HOUSE OF REPRESENTATIVES

                           September 21, 2000

Mr. Pallone (for himself, Mr. Frost, Mr. Brown of Ohio, Ms. Carson, Mr. 
   Murtha, and Mr. Waxman) introduced the following bill; which was 
                 referred to the Committee on Commerce

_______________________________________________________________________

                                 A BILL


 
To amend the Public Health Service Act to provide for a national system 
 of screening newborn infants for hereditary disorders, and for other 
                               purposes.

    Be it enacted by the Senate and House of Representatives of the 
United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

    This Act may be cited as the ``Hereditary Disorders Newborn 
Screening Act of 2000''.

SEC. 2. PROGRAM TO IMPROVE THE ABILITY OF STATES TO PROVIDE NEWBORN AND 
              CHILD SCREENING FOR HERITABLE DISORDERS.

    Part A of title XI of the Public Health Service Act (42 U.S.C. 
300b-1 et seq.) is amended by adding at the end the following:

``SEC. 1108. IMPROVED NEWBORN AND CHILD SCREENING FOR HERITABLE 
              DISORDERS.

    ``(a) In General.--The Secretary, acting through the Administrator 
of the Health Resources and Services Administration, shall award grants 
to eligible entities to enhance, improve or expand the ability of State 
and local public health agencies to provide screening, counseling or 
preventive care services to newborns and children having or at risk for 
heritable disorders.
    ``(b) Use of Funds.--Amounts provided under a grant awarded under 
subsection (a) shall be used to--
            ``(1) establish, expand, or improve systems or programs to 
        provide screening, counseling, testing or specialty services 
        for newborns and children at risk for heritable disorders;
            ``(2) establish, expand, or improve programs or services to 
        reduce mortality or morbidity from heritable disorders;
            ``(3) establish, expand, or improve systems or programs to 
        provide information and counseling on available therapies for 
        newborns and children with heritable disorders;
            ``(4) improve the access of medically underserved 
        populations to screening, counseling, testing and specialty 
        services for newborns and children having or at risk for 
        heritable disorders; or
            ``(5) conduct such other activities as may be necessary to 
        enable newborns and children having or at risk for heritable 
        disorders to receive screening, counseling, testing or 
        specialty services, regardless of income, race, color, 
        religion, sex, national origin, age, or disability.
    ``(c) Eligible Entities.--To be eligible to receive a grant under 
subsection (a) an entity shall--
            ``(1) be a State or political subdivision of a State, or a 
        consortium of 2 or more States or political subdivisions of 
        States; and
            ``(2) prepare and submit to the Secretary an application 
        that includes--
                    ``(A) a plan to use amounts awarded under the grant 
                to meet specific health status goals and objectives 
                relative to heritable disorders, including attention to 
                needs of medically underserved populations;
                    ``(B) a plan for the collection of outcome data or 
                other methods of evaluating the degree to which amounts 
                awarded under this grant will be used to achieve the 
                goals and objectives identified under subparagraph (A);
                    ``(C) a plan for monitoring and ensuring the 
                quality of services provided under the grant;
                    ``(D) an assurance that amounts awarded under the 
                grant will be used only to implement the approved plan 
                for the State;
                    ``(E) an assurance that the provision of services 
                under the plan is coordinated with services provided 
                under programs implemented in the State under titles V, 
                XVIII, XIX, XX, or XXI of the Social Security Act 
                (subject to Federal regulations applicable to such 
                programs) so that the coverage of services under such 
                titles is not substantially diminished by the use of 
                granted funds; and
                    ``(F) such other information determined by the 
                Secretary to be necessary.
    ``(d) Limitation.--An eligible entity may not use amounts received 
under this section to--
            ``(1) provide cash payments to or on behalf of affected 
        individuals;
            ``(2) provide inpatient services;
            ``(3) purchase land or make capital improvements to 
        property; or
            ``(4) provide for proprietary research or training.
    ``(e) Voluntary Participation.--The participation by any individual 
in any program or portion thereof established or operated with funds 
received under this section shall be wholly voluntary and shall not be 
a prerequisite to eligibility for or receipt of any other service or 
assistance from, or to participation in, another Federal or State 
program.
    ``(f) Supplement Not Supplant.--Funds appropriated under this 
section shall be used to supplement and not supplant other Federal, 
State, and local public funds provided for activities of the type 
described in this section.
    ``(g) Publication.
            ``(1) In general.--An application submitted under 
        subsection (c)(2) shall be made public by the State in such a 
        manner as to facilitate comment from any person, including 
        through hearings and other methods used to facilitate comments 
        from the public.
            ``(2) Comments.--Comments received by the State after the 
        publication described in paragraph (1) shall be addressed in 
        the application submitted under subsection (c)(2).
    ``(h) Technical Assistance.--The Secretary shall provide to 
entities receiving grants under subsection (a) such technical 
assistance as may be necessary to ensure the quality of programs 
conducted under this section.
    ``(i) Authorization of Appropriations.--There are authorized to be 
appropriated to carry out this section, such sums as may be necessary 
for each of the fiscal years 2001 through 2011.

``SEC. 1109. EVALUATING THE EFFECTIVENESS OF NEWBORN AND CHILD 
              SCREENING PROGRAMS.

    ``(a) In General.--The Secretary shall award grants to eligible 
entities to provide for the conduct of demonstration programs to 
evaluate the effectiveness of screening, counseling or preventive care 
services in reducing the morbidity and mortality caused by heritable 
disorders in newborns and children.
    ``(b) Demonstration Programs.--A demonstration program conducted 
under a grant under this section shall be designed to evaluate and 
assess, within the jurisdiction of the entity receiving such grant--
            ``(1) the effectiveness of screening, counseling, testing 
        or specialty services for newborns and children at risk for 
        heritable disorders in reducing the morbidity and mortality 
        associated with such disorders;
            ``(2) the effectiveness of screening, counseling, testing 
        or specialty services in accurately and reliably diagnosing 
        heritable disorders in newborns and children; or
            ``(3) the availability of screening, counseling, testing or 
        specialty services for newborns and children at risk for 
        heritable disorders.
    ``(c) Eligible Entities.--To be eligible to receive a grant under 
subsection (a) an entity shall be a State or political subdivision of a 
State, or a consortium of 2 or more States or political subdivisions of 
States.

``SEC. 1110. ADVISORY COMMITTEE ON HERITABLE DISORDERS IN NEWBORNS AND 
              CHILDREN.

    ``(a) Establishment.--The Secretary shall establish an advisory 
committee to be known as the `Advisory Committee on Heritable Disorders 
in Newborns and Children' (referred to in this section as the `Advisory 
Committee').
    ``(b) Duties.--The Advisory Committee shall--
            ``(1) provide advice and recommendations to the Secretary 
        concerning grants and projects awarded or funded under section 
        1108;
            ``(2) provide technical information to the Secretary for 
        the development of policies and priorities for the 
        administration of grants under section 1108; and
            ``(3) provide such recommendations, advice or information 
        as may be necessary to enhance, expand or improve the ability 
        of the Secretary to reduce the mortality or morbidity from 
        heritable disorders.
    ``(c) Membership.--
            ``(1) In general.--The Secretary shall appoint not to 
        exceed 15 members to the Advisory Committee. In appointing such 
        members, the Secretary shall ensure that the total membership 
        of the Advisory Committee is an odd number.
            ``(2) Required members.--The Secretary shall appoint to the 
        Advisory Committee under paragraph (1)--
                    ``(A) the Administrator of the Health Resources and 
                Services Administration;
                    ``(B) the Director of the Centers for Disease 
                Control and Prevention;
                    ``(C) the Director of the National Institutes of 
                Health;
                    ``(D) the Director of the Agency for Healthcare 
                Research and Quality;
                    ``(E) medical or scientific professionals with 
                special expertise in heritable disorders, or in 
                providing screening, counseling, testing or specialty 
                services for newborns and children at risk for 
                heritable disorders;
                    ``(F) members of the public having special 
                expertise about or concern with heritable disorders; 
                and
                    ``(G) representatives from such Federal agencies, 
                public health constituencies, and medical professional 
                societies as determined to be necessary by the 
                Secretary, to fulfill the duties of the Advisory 
                Committee, as established under subsection (b).''.
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