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S.512 – Advancement in Pediatric Autism Research Act 106th Congress (1999-2000)
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Introduced in Senate (03/02/1999)
Advancement in Pediatric Autism Research Act – Amends the Public Health Service Act to require 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.
Directs the Secretary of Health and Human Services (HHS), acting through the Director of the Centers for Disease Control and Prevention, to: (1) make awards of grants and cooperative agreements for the collection, analysis, and reporting of data on autism and pervasive developmental disabilities to public or nonprofit private entities; (2) establish up to five regional centers of excellence in autism and pervasive developmental disabilities epidemiology, through grants or cooperative agreements, for purposes of collecting and analyzing information on autism and developmental disabilities; (3) establish a clearinghouse within the Center for the collection and storage of data generated from the monitoring programs created by this Act; and (4) coordinate the Federal response to requests for assistance from State health department officials regarding potential or alleged autism or developmental disability clusters.
Authorizes appropriations.
Requires the Secretary 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.
| Sponsor: | Sen. Gorton, Slade [R-WA] (Introduced 03/02/1999) |
|---|---|
| Committees: | Senate – Health, Education, Labor, and Pensions |
| Latest Action: | Senate – 03/02/1999 Read twice and referred to the Committee on HELP. |
Introduced in Senate (03/02/1999)
[Congressional Bills 106th Congress]
[From the U.S. Government Printing 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.
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