[Congressional Bills 106th Congress]
[From the U.S. Government Publishing Office]
[S. 512 Introduced in Senate (IS)]







106th CONGRESS
  1st Session
                                 S. 512

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


_______________________________________________________________________


                   IN THE SENATE OF THE UNITED STATES

                             March 2, 1999

     Mr. Gorton (for himself, Mrs. Feinstein, Mr. Lautenberg, Mr. 
 Torricelli, Mr. Lieberman, and Mr. Edwards) introduced the following 
  bill; which was read twice and referred to the Committee on Health, 
                     Education, Labor, and Pensions

_______________________________________________________________________

                                 A BILL


 
 To amend the Public Health Service Act to provide for the expansion, 
 intensification, and coordination of the activities of the Department 
    of Health and Human Services 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) There is little information on the prevalence of autism 
        and other pervasive developmental disabilities in the United 
        States. There have never been any national prevalence studies 
        in the United States, and the two studies that were conducted 
        in the 1980s examined only selected areas of the country. 
        Recent studies in Canada, Europe, and Japan suggest that the 
        prevalence of classic autism alone may be 300 percent to 400 
        percent higher than previously estimated.
            (4) 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.
            (5) 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.
            (6) 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.
            (7) The discovery of effective treatments and a cure for 
        autism will be greatly enhanced when scientists and 
        epidemiologists have an accurate understanding of the 
        prevalence and incidence of autism.
            (8) Recent research suggests that environmental factors may 
        contribute to autism. As a result, contributing causes of 
        autism, if identified, may be preventable.
            (9) Finding the answers to the causes of autism and related 
        developmental disabilities may help researchers to understand 
        other disorders, ranging from learning problems, to 
        hyperactivity, to communications deficits that affect millions 
        of Americans.
            (10) 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.
            (11) 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 any other agencies that the Director 
        determines 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.--Each center under paragraph (1) shall 
        conduct 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.
            ``(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) 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.
            ``(5) 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.
            ``(6) 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) Facilitation of Research.--The Director shall under 
subsection (a)(1) provide 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.
    ``(d) 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.
    ``(e) Funding.--For the purpose of carrying out this section, there 
are authorized to be appropriated $33,000,000 for fiscal year 2000, and 
such sums as may be necessary for each of the fiscal years 2001 through 
2004. Such authorizations of appropriations are in addition to any 
other authorization of appropriations that is available for such 
purpose.''.

SEC. 4. DEVELOPMENTAL DISABILITIES SURVEILLANCE AND RESEARCH PROGRAMS.

    (a) National Autism and Pervasive Developmental Disabilities 
Surveillance Program.--The Secretary of Health and Human Services (in 
this Act referred to as the ``Secretary''), acting through the Director 
of the Centers for Disease Control and Prevention, may make awards of 
grants and cooperative agreements for the collection, analysis, and 
reporting of data on autism and pervasive developmental disabilities. 
An entity may receive such an award only if the entity is a public or 
nonprofit private entity (including health departments of States and 
political subdivisions of States, and including universities and other 
educational entities). In making such awards, the Secretary may provide 
direct technical assistance in lieu of cash.
    (b) Centers of Excellence in Autism and Pervasive Developmental 
Disabilities Epidemiology.--
            (1) In general.--The Secretary, acting through the Director 
        of the Centers for Disease Control and Prevention, shall 
        (subject to the extent of amounts made available in 
        appropriations Acts) establish not less than 3, and not more 
than 5, regional centers of excellence in autism and pervasive 
developmental disabilities epidemiology for the purpose of collecting 
and analyzing information on the number, incidence, correlates, and 
causes of autism and related developmental disabilities.
            (2) Recipients of awards for establishment of centers.--
        Centers under paragraph (1) shall be established and operated 
        through the awarding of grants or cooperative agreements to 
        public or nonprofit private entities that conduct research, 
        including health departments of States and political 
        subdivisions of States, and including universities and other 
        educational entities.
            (3) Certain requirements.--An award for a center under 
        paragraph (1) may be made only if the entity involved submits 
        to the Secretary an application containing such agreements and 
        information as the Secretary may require, including an 
        agreement that the center involved will operate in accordance 
        with the following:
                    (A) The center will collect, analyze, and report 
                autism and pervasive developmental disabilities data 
                according to guidelines prescribed by the Director, 
                after consultation with relevant State and local public 
                health officials, private sector developmental 
                disability researchers, and advocates for those with 
                developmental disabilities.
                    (B) The center will assist with the development and 
                coordination of State autism and pervasive 
                developmental disabilities surveillance efforts within 
                a region.
                    (C) The center will provide education, training, 
                and clinical skills improvement for health 
                professionals aimed at better understanding and 
                treatment of autism and related developmental 
                disabilities.
                    (D) The center will identify eligible cases and 
                controls through its surveillance systems and conduct 
                research into factors which may cause autism and 
                related developmental disabilities. Each program will 
                develop or extend an area of special research expertise 
                (including genetics, environmental exposure to 
                contaminants, immunology, and other relevant research 
                specialty areas).
    (c) Clearinghouse.--The Secretary, acting through the Director of 
the Centers for Disease Control and Prevention, shall carry out the 
following:
            (1) The Secretary shall establish a clearinghouse within 
        the Centers for Disease Control and Prevention for the 
        collection and storage of data generated from the monitoring 
        programs created by this Act. Through the clearinghouse, such 
        Centers shall serve as the coordinating agency for autism and 
        pervasive developmental disabilities surveillance activities. 
        The functions of such a clearinghouse shall include 
        facilitating the coordination of research and policy 
        development relating to the epidemiology of autism and other 
        pervasive developmental disabilities.
            (2) The Secretary, acting through the Centers for Disease 
        Control and Prevention, shall coordinate the Federal response 
        to requests for assistance from State health department 
        officials regarding potential or alleged autism or 
        developmental disability clusters.
    (d) Definition.--In this Act, the term ``State'' means each of the 
several States, the District of Columbia, the Commonwealth of Puerto 
Rico, American Samoa, Guam, the Commonwealth of the Northern Mariana 
Islands, the Virgin Islands, and the Trust Territory of the Pacific 
Islands.
    (e) Authorization of Appropriations.--To carry out this section, 
there is authorized to be appropriated $7,500,000 for each of the 
fiscal years 2000 through 2004.

SEC. 5. INFORMATION AND EDUCATION.

    (a) In General.--The Secretary shall establish and implement 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 and 
training and continuing education through programs for scientists, 
physicians, and other health professionals who provide care for 
patients with autism.
    (b) Stipends.--The Secretary may use amounts made available under 
this section to provide stipends for health professionals who are 
enrolled in training programs under this section.
    (c) Authorization of Appropriations.--To carry out this section, 
there is authorized to be appropriated $6,000,000 for each of the 
fiscal years 2000 through 2004.

SEC. 6. INTER-AGENCY AUTISM COORDINATING COMMITTEE.

    (a) Establishment.--The Secretary shall establish a committee to be 
known as the ``Autism Coordinating Committee'' (in this section 
referred to as the ``Committee'') to coordinate all efforts within the 
Department of Health and Human Services concerning autism, including 
activities carried out through the National Institutes of Health and 
the Centers for Disease Control and Prevention under this Act (and the 
amendment made by this Act).
    (b) Membership.--
            (1) In general.--The Committee shall be composed of the 
        Directors of such national research institutes, of the Centers 
        for Disease Control and Prevention, and of such other agencies 
        and such other officials as the Secretary determines 
        appropriate.
            (2) Additional members.--If determined appropriate by the 
        Secretary, the Secretary may appoint to the Committee--
                    (A) parents or legal guardians of individuals with 
                autism or other pervasive developmental disorders; and
                    (B) representatives of other governmental agencies 
                that serve children with autism such as the Department 
                of Education.
    (c) Administrative Support; Terms of Service; Other Provisions.--
The following shall apply with respect to the Committee:
            (1) The Committee shall receive necessary and appropriate 
        administrative support from the Department of Health and Human 
        Services.
            (2) Members of the Committee appointed under subsection 
        (b)(2)(A) shall serve for a term of 3 years, and may serve for 
        an unlimited number of terms if reappointed.
            (3) The Committee shall meet not less than 2 times per 
        year.
            (4) Members of the Committee shall not receive additional 
        compensation for their service. Such members may receive 
        reimbursement for appropriate and additional expenses that are 
        incurred through service on the Committee which would not have 
        incurred had they not been a member of the Committee.

SEC. 7. REPORT TO CONGRESS.

    Not later than January 1, 2000, and each January 1 thereafter, the 
Secretary shall prepare and submit to the appropriate committees of 
Congress, a report concerning the implementation of this Act and the 
amendments made by this Act.
                                 <all>