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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.
Advancement in Pediatric Autism Research Act - Amends the Public Health Service Act to direct the Director of the National Institutes of Health (NIH) to expand, intensify, and coordinate the activities of NIH with respect to autism. Requires the Director, among other things, to make awards of grants and contracts to public or nonprofit entities for centers of excellence regarding research on autism. Authorizes appropriations.
Requires the Secretary of Health and Human Services (HHS) to establish a program to provide information and education on autism to health professionals and the general public. Authorizes appropriations.
Directs the Secretary to establish an Autism Coordinating Committee to coordinate HHS efforts concerning autism.