[Congressional Bills 106th Congress]
[From the U.S. Government Publishing Office]
[S. 1131 Introduced in Senate (IS)]







106th CONGRESS
  1st Session
                                S. 1131

To promote research into, and the development of an ultimate cure for, 
                    the disease known as Fragile X.


_______________________________________________________________________


                   IN THE SENATE OF THE UNITED STATES

                              May 26, 1999

Mr. Edwards (for himself and Mr. Hagel) introduced the following bill; 
     which was read twice and referred to the Committee on Health, 
                     Education, Labor, and Pensions

_______________________________________________________________________

                                 A BILL


 
To promote research into, and the development of an ultimate cure for, 
                    the disease known as Fragile X.

    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 ``Fragile X Research Breakthrough Act 
of 1999''.

SEC. 2. FINDINGS.

    Congress makes the following findings:
            (1) Fragile X is the most common inherited cause of mental 
        retardation. It affects 1 in every 2,000 boys and 1 in every 
        4,000 girls. One in 260 women is a carrier.
            (2) Most children with Fragile X require a lifetime of 
        special care at a cost of over $2,000,000 per child.
            (3) Relatively newly-discovered and relatively unknown, 
        even in the medical profession, Fragile X is caused by the 
        absence of a single protein that can be produced synthetically 
        but that cannot yet be effectively assimilated.
            (4) Fragile X research, both basic and applied, is vastly 
        underfunded in view of its prevalence, the potential for the 
        development of a cure, the established benefits of currently 
        available interventions, and the significance that Fragile X 
        research has for related disorders.
            (5) Fragile X is a powerful research model for other forms 
        of X-linked mental retardation, as well as neuropsychiatric 
        disorders, including autism, schizophrenia, mood disorders, and 
        pervasive developmental disorder. Individuals with Fragile X 
        are a homogeneous study population for advancing understanding 
        of these disorders.

SEC. 3. NATIONAL INSTITUTE OF CHILD HEALTH AND HUMAN DEVELOPMENT; 
              RESEARCH ON FRAGILE X.

    Subpart 7 of part C of title IV of the Public Health Service Act 
(42 U.S.C. 285g et seq.) is amended by adding at the end the following:

``SEC. 452E. FRAGILE X.

    ``(a) Expansion and Coordination of Research Activities.--The 
Director of the Institute, after consultation with the advisory council 
for the Institute, shall expand, intensify, and coordinate the 
activities of the Institute with respect to research on the disease 
known as Fragile X.
    ``(b) Research Centers.--
            ``(1) In general.--The Director of the Institute, after 
        consultation with the advisory council for the Institute, shall 
        make grants to, or enter into contracts with, public or 
        nonprofit private entities for the development and operation of 
        centers to conduct research for the purposes of improving the 
        diagnosis and treatment of, and finding the cure for, Fragile 
        X.
            ``(2) Number of centers.--In carrying out paragraph (1), 
        the Director of the Institute shall, to the extent that amounts 
        are appropriated, provide for the establishment of at least 3 
        Fragile X research centers.
            ``(3) Activities.--
                    ``(A) In general.--Each center assisted under 
                paragraph (1) shall, with respect to Fragile X--
                            ``(i) conduct basic and clinical research, 
                        which may include clinical trials of--
                                    ``(I) new or improved diagnostic 
                                methods; and
                                    ``(II) drugs or other treatment 
                                approaches; and
                            ``(ii) conduct research to find a cure.
                    ``(B) Fees.--A center may use funds provided under 
                paragraph (1) to provide fees to individuals serving as 
                subjects in clinical trials conducted under 
                subparagraph (A).
            ``(4) Coordination among centers.--The Director of the 
        Institute shall, as appropriate, provide for the coordination 
        of the activities of the centers assisted under this section, 
        including providing for the exchange of information among the 
        centers.
            ``(5) Certain administrative requirements.--Each center 
        assisted under paragraph (1) shall use the facilities of a 
single institution, or be formed from a consortium of cooperating 
institutions, meeting such requirements as may be prescribed by the 
Director of the Institute.
            ``(6) Duration of support.--Support may be provided to a 
        center under paragraph (1) for a period of not to exceed 5 
        years. Such period may be extended for 1 or more additional 
        periods, each of which may not exceed 5 years, if the 
        operations of such center have been reviewed by an appropriate 
        technical and scientific peer review group established by the 
        Director and if such group has recommended to the Director that 
        such period be extended.
            ``(7) Authorization of appropriations.--For the purpose of 
        carrying out this subsection, there are authorized to be 
        appropriated $10,000,000 for fiscal year 2000, and such sums as 
        may be necessary for each subsequent fiscal year.''.

SEC. 4. NATIONAL INSTITUTE OF CHILD HEALTH AND HUMAN DEVELOPMENT; LOAN 
              REPAYMENT PROGRAM REGARDING RESEARCH ON FRAGILE X.

    Part G of title IV of the Public Health Service Act (42 U.S.C. 288 
et seq.) is amended by inserting after section 487E the following:

``SEC. 487F. LOAN REPAYMENT PROGRAM REGARDING RESEARCH ON FRAGILE X.

    ``(a) In General.--The Secretary, in consultation with the Director 
of the National Institute of Child Health and Human Development, shall 
establish a program under which the Federal Government enters into 
contracts with qualified health professionals (including graduate 
students) who agree to conduct research regarding Fragile X in 
consideration of the Federal Government's agreement to repay, for each 
year of such service, not more than $35,000 of the principal and 
interest of the educational loans owed by such health professionals.
    ``(b) Applicability of Certain Provisions.--With respect to the 
National Health Service Corps Loan Repayment Program established in 
subpart III of part D of title III, the provisions of such subpart 
(including section 338B(g)(3)) shall, except as inconsistent with 
subsection (a) of this section, apply to the program established in 
such subsection in the same manner and to the same extent as such 
provisions apply to the National Health Service Corps Loan Repayment 
Program established in such subpart.
    ``(c) Authorization of Appropriations.--For the purpose of carrying 
out this section, there are authorized to be appropriated $2,000,000 
for fiscal year 2000, and such sums as may be necessary for each 
subsequent fiscal year. Amounts appropriated for a fiscal year under 
the preceding sentence shall remain available until the expiration of 
the second fiscal year beginning after the fiscal year for which the 
amounts were appropriated.''.
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