[Congressional Bills 106th Congress]
[From the U.S. Government Publishing Office]
[H.R. 997 Introduced in House (IH)]







106th CONGRESS
  1st Session
                                H. R. 997

 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 HOUSE OF REPRESENTATIVES

                             March 4, 1999

Mr. Greenwood (for himself, Mr. Smith of New Jersey, Mr. Ackerman, Mr. 
 Baldacci, Mr. Borski, Mr. Boucher, Mr. Costello, Mr. Frost, Mr. Green 
 of Texas, Mr. Hinchey, Ms. Kilpatrick, Mr. LaFalce, Mr. LoBiondo, Mr. 
   McNulty, Mr. Payne, Ms. Ros-Lehtinen, Mr. Rothman, Mr. Shays, Mr. 
Shows, Mrs. Tauscher, and Ms. Velazquez) introduced the following bill; 
            which was referred to the Committee on Commerce

_______________________________________________________________________

                                 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) 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. 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. 5. 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 ex 
        officio members in accordance with paragraph (2) and 11 
        appointed members in accordance with paragraph (3).
            (2) Ex officio members.--The following officials shall 
        serve as ex officio members of the Committee:
                    (A) The Director of the National Institutes of 
                Health.
                    (B) The Director of the National Institute on 
                Mental Health.
                    (C) The Director of the Centers for Disease Control 
                and Prevention.
                    (D) The Administrator of the Health Resources and 
                Services Administration.
            (3) Appointed members.--Appointments to the Committee shall 
        be made in accordance with the following:
                    (A) Two members shall be research scientists with 
                demonstrated achievements in research related to autism 
                and related developmental disabilities. The scientists 
                shall be appointed by the Secretary in consultation 
                with the National Academy of Sciences.
                    (B) Five members shall be representatives of the 5 
                national organizations whose primary emphasis is on 
                research into autism and other pervasive developmental 
                disabilities. One representative from each of such 
                organizations shall be appointed by the Secretary in 
                consultation with the National Academy of Sciences.
                    (C) Two members shall be clinicians whose practice 
                is primarily devoted to the treatment of individuals 
                with autism and other pervasive developmental 
                disabilities. The clinicians shall be appointed by the 
                Secretary in consultation with the Institute of 
                Medicine and the National Academy of Sciences.
                    (D) Two members shall be individuals who are the 
                parents or legal guardians of a person or persons with 
                autism or other pervasive developmental disabilities. 
                The individuals shall be appointed by the Secretary in 
                consultation with the ex officio members under 
                paragraph (1) and the 5 national organizations referred 
                to in subparagraph (B).
    (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 shall be appointed 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. 6. 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>