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HR 274 IH

To provide surveillance and research to better understand the prevalence and pattern of autism and other pervasive developmental disabilities so that effective treatment and prevention strategies can be implemented.

January 6, 1999

Mr. SMITH of New Jersey (for himself and Mr. GREENWOOD) introduced the following bill; which was referred to the Committee on Commerce

To provide surveillance and research to better understand the prevalence and pattern of autism and other pervasive developmental disabilities so that effective treatment and prevention strategies can be implemented.

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 `Autism Statistics, Surveillance, Research, and Epidemiology Act of 1999 (ASSURE)'.

SEC. 2. FINDINGS.

The Congress makes the following findings:

(1) Autism and other pervasive developmental disabilities (fragile X syndrome, Rett's syndrome, childhood disintegrative disorder, Landau-Kleffner syndrome, and pervasive developmental disorders not otherwise specified) are biologically based neurodevelopmental diseases which cause severe impairment in cognition, language, and affective abilities.

(2) Autism and pervasive developmental disabilities are not rare; they may affect as many as one in every 500 children, and more than 500,000 Americans.

(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) The cost of caring for individuals with autism and pervasive developmental disabilities is estimated at more than $13,000,000,000 per year for direct costs only.

(5) Autism is considered by many scientists to be one of the most heritable of all the developmental disorders, and the most likely to yield to the latest scientific advancements in genetics and neurology.

(6) 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.

(7) Recent research suggests that environmental factors may contribute to autism. As a result, contributing causes of autism, if identified, may be preventable.

(8) 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.

SEC. 3. 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 three, and not more than five, 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 award 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; and

(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, but not limited to, genetics, environmental exposure to contaminants, immunology, and other relevant research specialty areas).

SEC. 4. CLEARINGHOUSE.

The Secretary, acting through the Director of the Centers for Disease Control and Prevention, shall carry out the following:

(1) The Centers for Disease Control and Prevention shall serve as the coordinating agency for autism and pervasive developmental disabilities surveillance activities through the establishment of a clearinghouse for the collection and storage of data generated from the monitoring programs created by this Act. 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.

SEC. 5. ADVISORY COMMITTEE.

(a) IN GENERAL- The Secretary shall establish an Advisory Committee for Autism and Pervasive Developmental Disabilities Epidemiology Research (in this section referred to as the `Committee'). The Committee shall provide advice and recommendations to the Director of the Centers for Disease Control and Prevention on--

(1) the establishment of a national autism and pervasive developmental disabilities surveillance program;

(2) the establishment of centers of excellence in autism and pervasive developmental disabilities epidemiology;

(3) methods and procedures to more effectively coordinate government and non-government programs and research on autism and pervasive developmental disabilities epidemiology; and

(4) the effective operation of autism and pervasive developmental disabilities epidemiology research activities.

(b) COMPOSITION-

(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 Center for Environmental Health.

(B) The Assistant Administrator of the Agency for Toxic Substances and Disease Registry.

(C) The Director of the National Institute of Child Health and Human Development.

(D) The Director of the National Institute of Neurological Disorders and Stroke.

(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 five 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 five national organizations referred to in subparagraph (B).

(c) ADMINISTRATIVE SUPPORT; TERMS OF SERVICE; OTHER PROVISIONS- The following 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 three years, and may serve for an unlimited number of terms if reappointed.

(3) The Committee shall meet no less than two 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.

The Secretary shall prepare and submit to the Congress, after consultation and comment by the Advisory Committee, an annual report regarding the prevalence and incidence of autism and other pervasive developmental disorders, the results of research into the etiology of autism and other pervasive developmental disorders, public health responses to known or preventable causes of autism and other pervasive developmental disorders, and the need for additional research into promising lines of scientific inquiry.

SEC. 7. DEFINITION.

For purposes of 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.

SEC. 8. AUTHORIZATION OF APPROPRIATIONS.

For the purpose of carrying out this Act, there is authorized to be appropriated $7,500,000 for each of the fiscal years 2000 through 2004.

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