I
105TH CONGRESS
2D SESSION
H. R. 4203
To amend the Public Health Service Act to provide for the expansion, inten-
sification, and coordination of the activities of the National Institutes
of Health with respect to research on autism.
IN THE HOUSE OF REPRESENTATIVES
JULY 14, 1998
Mr. GREENWOOD (for himself, Mr. BOUCHER, Ms. ROS-LEHTINEN, Mr.
COSTELLO, Mr. LAFALCE, Mr. FROST, and Mr. ROTHMAN) 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 re-
spect to research on autism.
Be it enacted by the Senate and House of Representa-
tives of the United States of America in Congress assembled,
SECTION 1. SHORT TITLE.
This Act may be cited as the ‘‘Advancement in Pedi-
atric Autism Research Act’’.
SEC. 2. FINDINGS.
The Congress finds as follows:
(1) Infantile autism and autism spectrum dis-
orders are biologically-based neurodevelopmental dis-
eases that cause severe impairments in language and
communication and generally manifest in young chil-
dren sometime during the first two years of life.
(2) Best estimates indicate that 1 in 500 chil-
dren 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 au-
tism 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 au-
tism and autism spectrum disorder is great, and is
estimated to be $13.3 billion per year solely for di-
rect 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 re-
search.
(6) Specifically, more knowledge is needed con-
cerning—
(A) the underlying causes of autism and
autism spectrum disorders, how to treat the un-
derlying abnormality or abnormalities causing
the severe symptoms of autism, and how to pre-
vent these abnormalities from occurring in the
future;
(B) the epidemiology of, and the identifica-
tion of risk factors for, infantile autism and au-
tism 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 assess-
ment of the subtypes within the autism spec-
trum disorders, for the purpose of monitoring
the course of the disease and developing medi-
cally sound strategies for improving the out-
comes 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 dis-
ease; 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 au-
tism spectrum disorders. A sufficient level of fund-
ing should be made available for carrying out the
program.
SEC. 3. EXPANSION, INTENSIFICATION, AND COORDINA-
TION OF ACTIVITIES OF NATIONAL INSTI-
TUTES OF HEALTH WITH RESPECT TO RE-
SEARCH 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; COLLABO-
RATION AMONG AGENCIES.—The Director shall carry
out this section acting through the Director of the
National Institute of Mental Health and in collabo-
ration 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 Insti-
tute on Deafness and Other Communication Dis-
orders.
‘‘(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 activi-
ties of the national research institutes specified
in paragraph (2); and
‘‘(B) the coordinating committee is com-
posed of the directors of such national research
institutes and such other officials of the Na-
tional Institutes of Health as the Director de-
termines to be appropriate.
‘‘(b) CENTERS OF EXCELLENCE.—
‘‘(1) IN GENERAL.—The Director shall under
subsection (a)(1) make awards of grants and con-
tracts to public or nonprofit private entities to pay
all or part of the cost of planning, establishing, im-
proving, 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 re-
search 
in 
the 
fields 
of 
developmental
neurobiology, 
genetics, 
and
psychopharmacology;
‘‘(B) training programs for physicians, sci-
entists, and other health and allied health pro-
fessionals; 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 in-
dividuals aware of opportunities to participate as
subjects in research conducted by the centers. The
program may provide fees to such subjects. The pro-
gram 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 par-
ticipation of individuals as such subjects.
‘‘(4) STIPENDS FOR TRAINING OF HEALTH PRO-
FESSIONALS.—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 cen-
ter 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 SUP-
PORT.—The Director shall, subject to the extent of
amounts made available in appropriations Acts, pro-
vide for the establishment of not less than five cen-
ters under paragraph (1). Support of such a center
may be for a period not exceeding 5 years. Such pe-
riod may be extended for one or more additional pe-
riods not exceeding 5 years if the operations of such
center have been reviewed by an appropriate tech-
nical 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 pro-
vide information and education on autism to health profes-
sionals 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 pro-
gram under which samples of tissues and genetic materials
that are of use in research on autism are donated, col-
lected, preserved, and made available for such research.
The program shall be carried out in accordance with ac-
cepted scientific and medical standards for the donation,
collection, and preservation of such samples.
‘‘(e) PUBLIC INPUT.—The Director shall under sub-
section (a)(1) provide for means through which the public
can obtain information on the existing and planned pro-
grams 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 pro-
grams 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 nec-
essary 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 appro-
priated under paragraph (1) for a fiscal year, the
Director shall make available not less than 75 per-
cent 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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