[Congressional Bills 105th Congress]
[From the U.S. Government Publishing Office]
[S. 2263 Introduced in Senate (IS)]







105th CONGRESS
  2d Session
                                S. 2263

 To amend the Public Health Service Act to provide for the expansion, 
  intensification, and coordination of the activities of the National 
        Institutes of Health with respect to research on autism.


_______________________________________________________________________


                   IN THE SENATE OF THE UNITED STATES

                              July 6, 1998

Mr. Gorton (for himself, Mr. Lieberman, Mr. Faircloth, Mr. Harkin, and 
  Mrs. Boxer) introduced the following bill; which was read twice and 
         referred to the Committee on Labor and Human Resources

_______________________________________________________________________

                                 A BILL


 
 To amend the Public Health Service Act to provide for the expansion, 
  intensification, and coordination of the activities of the National 
        Institutes of Health with respect to research on autism.

    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 ``Advancement in Pediatric Autism 
Research Act''.

SEC. 2. FINDINGS.

    The Congress finds as follows:
            (1) Infantile autism and autism spectrum disorders are 
        biologically-based neurodevelopmental diseases that cause 
        severe impairments in language and communication and generally 
        manifest in young children sometime during the first two years 
        of life.
            (2) Best estimates indicate that 1 in 500 children born 
        today will be diagnosed with an autism spectrum disorder and 
        that 400,000 Americans have autism or an autism spectrum 
        disorder.
            (3) Three quarters of those with infantile autism spend 
        their adult lives in institutions or group homes, and usually 
        enter institutions by the age of 13.
            (4) The cost of caring for individuals with autism and 
        autism spectrum disorder is great, and is estimated to be $13.3 
        billion per year solely for direct costs.
            (5) The rapid advancements in biomedical science suggest 
        that effective treatments and a cure for autism are attainable 
        if--
                    (A) there is appropriate coordination of the 
                efforts of the various agencies of the Federal 
                Government involved in biomedical research on autism 
                and autism spectrum disorders;
                    (B) there is an increased understanding of autism 
                and autism spectrum disorders by the scientific and 
                medical communities involved in autism research and 
                treatment; and
                    (C) sufficient funds are allocated to research.
            (6) Specifically, more knowledge is needed concerning--
                    (A) the underlying causes of autism and autism 
                spectrum disorders, how to treat the underlying 
                abnormality or abnormalities causing the severe 
                symptoms of autism, and how to prevent these 
                abnormalities from occurring in the future;
                    (B) the epidemiology of, and the identification of 
                risk factors for, infantile autism and autism spectrum 
                disorders;
                    (C) the development of methods for early medical 
                diagnosis and functional assessment of individuals with 
                autism and autism spectrum disorders, including 
                identification and assessment of the subtypes within 
                the autism spectrum disorders, for the purpose of 
                monitoring the course of the disease and developing 
                medically sound strategies for improving the outcomes 
                of such individuals;
                    (D) existing biomedical and diagnostic data that 
                are relevant to autism and autism spectrum disorders 
                for dissemination to medical personnel, particularly 
                pediatricians, to aid in the early diagnosis and 
                treatment of this disease; and
                    (E) the costs incurred in educating and caring for 
                individuals with autism and autism spectrum disorders.
            (7) In 1998, the National Institutes of Health announced a 
        program of research on autism and autism spectrum disorders. A 
        sufficient level of funding should be made available for 
        carrying out the program.

SEC. 3. EXPANSION, INTENSIFICATION, AND COORDINATION OF ACTIVITIES OF 
              NATIONAL INSTITUTES OF HEALTH WITH RESPECT TO RESEARCH ON 
              AUTISM.

    Part B of title IV of the Public Health Service Act (42 U.S.C. 284 
et seq.) is amended by adding at the end the following section:

                                ``autism

    ``Sec. 409C. (a) In General.--
            ``(1) Expansion of activities.--The Director of NIH (in 
        this section referred to as the `Director') shall expand, 
        intensify, and coordinate the activities of the National 
        Institutes of Health with respect to research on autism.
            ``(2) Administration of program; collaboration among 
        agencies.--The Director shall carry out this section acting 
        through the Director of the National Institute of Mental Health 
        and in collaboration with the Director of the National 
        Institute of Child Health and Human Development, the Director 
        of the National Institute of Neurological Disorders and Stroke, 
        and the Director of the National Institute on Deafness and 
        Other Communication Disorders.
            ``(3) Autism coordinating committee.--The Director shall 
        ensure that--
                    ``(A) there is in operation at the National 
                Institutes of Health a committee to coordinate, with 
                respect to research on autism, the activities of the 
                national research institutes specified in paragraph 
                (2); and
                    ``(B) the coordinating committee is composed of the 
                directors of such national research institutes and such 
                other officials of the National Institutes of Health as 
                the Director determines to be appropriate.
    ``(b) Centers of Excellence.--
            ``(1) In general.--The Director shall under subsection 
        (a)(1) make awards of grants and contracts to public or 
        nonprofit private entities to pay all or part of the cost of 
        planning, establishing, improving, and providing basic 
        operating support for centers of excellence regarding research 
        on autism.
            ``(2) Research, training, and information and education.--
        Each center under paragraph (1) shall conduct--
                    ``(A) basic and clinical research into the cause, 
                diagnosis, early detection, prevention, control, and 
                treatment of autism, including research in the fields 
                of developmental neurobiology, genetics, and 
                psychopharmacology;
                    ``(B) training programs for physicians, scientists, 
                and other health and allied health professionals; and
                    ``(C) information and continuing education programs 
                for physicians and other health and allied health 
                professionals who provide care for patients with 
                autism.
            ``(3) Services for patients.--A center under paragraph (1) 
        may expend amounts provided under such paragraph to carry out a 
        program to make individuals aware of opportunities to 
        participate as subjects in research conducted by the centers. 
        The program may provide fees to such subjects. The program may, 
        in accordance with such criteria as the Director may establish, 
        provide to such subjects health care, referrals for health and 
        other services, and such incidental services as will facilitate 
        the participation of individuals as such subjects.
            ``(4) Stipends for training of health professionals.--A 
        center under paragraph (1) may expend amounts provided under 
        such paragraph to provide stipends for health professionals 
        enrolled in training programs under paragraph (2)(B).
            ``(5) Coordination of centers; reports.--The Director 
        shall, as appropriate, provide for the coordination of 
        information among centers under paragraph (1) and ensure 
        regular communication between such centers, and may require the 
        periodic preparation of reports on the activities of the 
        centers and the submission of the reports to the Director and 
        the coordinating committee under subsection (a)(3).
            ``(6) Organization of centers.--Each center 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.
            ``(7) Number of centers; duration of support.--The Director 
        shall, subject to the extent of amounts made available in 
        appropriations Acts, provide for the establishment of not less 
        than five centers under paragraph (1). Support of such a center 
        may be for a period not exceeding 5 years. Such period may be 
        extended for one or more additional periods not exceeding 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 should be extended.
    ``(c) Information and Education.--The Director shall under 
subsection (a)(1) carry out a program to provide information and 
education on autism to health professionals and the general public, 
including information and education on advances in the diagnosis and 
treatment of autism.
    ``(d) Facilitation of Research.--The Director shall under 
subsection (a)(1) provide by contract for a program under which samples 
of tissues and genetic materials that are of use in research on autism 
are donated, collected, preserved, and made available for such 
research. The program shall be carried out in accordance with accepted 
scientific and medical standards for the donation, collection, and 
preservation of such samples.
    ``(e) Public Input.--The Director shall under subsection (a)(1) 
provide for means through which the public can obtain information on 
the existing and planned programs and activities of the National 
Institutes of Health with respect to autism and through which the 
Director can receive comments from the public regarding such programs 
and activities.
    ``(f) Autism Spectrum Disorders.--For purposes of this section, the 
term `autism' includes autism spectrum disorders to the extent 
determined by the Director to be appropriate.
    ``(g) Funding.--
            ``(1) Authorization of appropriations.--For the purpose of 
        carrying out this section, there are authorized to be 
        appropriated $40,000,000 for fiscal year 1999, and such sums as 
        may be necessary for each of the fiscal years 2000 through 
        2003. Such authorizations of appropriations are in addition to 
        any other authorization of appropriations that is available for 
        such purpose.
            ``(2) Allocations.--Of the amounts appropriated under 
        paragraph (1) for a fiscal year, the Director shall make 
        available not less than 75 percent for carrying out subsection 
        (b), not less than 6 percent for carrying out subsection (c), 
        and not less than 4 percent for carrying out subsection (d).''.
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