I

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.

VELA ́ZQUEZ) 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.

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled,

3 SECTION 1. SHORT TITLE.

4 This Act may be cited as the ‘‘Advancement in Pedi5 atric Autism Research Act’’.
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1 SEC. 2. FINDINGS.

2 The Congress finds as follows:

3 (1) Infantile autism and autism spectrum dis4 orders are biologically-based neurodevelopmental dis5 eases that cause severe impairments in language and

6 communication and generally manifest in young chil7 dren sometime during the first two years of life.

8 (2) Best estimates indicate that 1 in 500 chil9 dren born today will be diagnosed with an autism

10 spectrum disorder and that 400,000 Americans have

11 autism or an autism spectrum disorder.

12 (3) There is little information on the prevalence

13 of autism and other pervasive developmental disabil14 ities in the United States. There have never been

15 any national prevalence studies in the United States,

16 and the two studies that were conducted in the

17 1980s examined only selected areas of the country.

18 Recent studies in Canada, Europe, and Japan sug19 gest that the prevalence of classic autism alone may

20 be 300 percent to 400 percent higher than pre21 viously estimated.

22 (4) Three-quarters of those with infantile au23 tism spend their adult lives in institutions or group

24 homes, and usually enter institutions by the age of

25 13.
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1 (5) The cost of caring for individuals with au2 tism and autism spectrum disorder is great, and is

3 estimated to be $13.3 billion per year solely for di4 rect costs.

5 (6) The rapid advancements in biomedical

6 science suggest that effective treatments and a cure

7 for autism are attainable if—

8 (A) there is appropriate coordination of the

9 efforts of the various agencies of the Federal

10 Government involved in biomedical research on

11 autism and autism spectrum disorders;

12 (B) there is an increased understanding of

13 autism and autism spectrum disorders by the

14 scientific and medical communities involved in

15 autism research and treatment; and

16 (C) sufficient funds are allocated to re17 search.

18 (7) The discovery of effective treatments and a

19 cure for autism will be greatly enhanced when sci20 entists and epidemiologists have an accurate under21 standing of the prevalence and incidence of autism.

22 (8) Recent research suggests that environ23 mental factors may contribute to autism. As a re24 sult, contributing causes of autism, if identified, may

25 be preventable.
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1 (9) Finding the answers to the causes of autism

2 and related developmental disabilities may help re3 searchers to understand other disorders, ranging

4 from learning problems, to hyperactivity, to commu5 nications deficits that affect millions of Americans.

6 (10) Specifically, more knowledge is needed

7 concerning—

8 (A) the underlying causes of autism and

9 autism spectrum disorders, how to treat the un10 derlying abnormality or abnormalities causing

11 the severe symptoms of autism, and how to pre12 vent these abnormalities from occurring in the

13 future;

14 (B) the epidemiology of, and the identifica15 tion of risk factors for, infantile autism and au16 tism spectrum disorders;

17 (C) the development of methods for early

18 medical diagnosis and functional assessment of

19 individuals with autism and autism spectrum

20 disorders, including identification and assess21 ment of the subtypes within the autism spec22 trum disorders, for the purpose of monitoring

23 the course of the disease and developing medi24 cally sound strategies for improving the out25 comes of such individuals;
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1 (D) existing biomedical and diagnostic

2 data that are relevant to autism and autism

3 spectrum disorders for dissemination to medical

4 personnel, particularly pediatricians, to aid in

5 the early diagnosis and treatment of this dis6 ease; and

7 (E) the costs incurred in educating and

8 caring for individuals with autism and autism

9 spectrum disorders.

10 (11) In 1998, the National Institutes of Health

11 announced a program of research on autism and au12 tism spectrum disorders. A sufficient level of fund13 ing should be made available for carrying out the

14 program.

15 SEC. 3. EXPANSION, INTENSIFICATION, AND COORDINA16 TION OF ACTIVITIES OF NATIONAL INSTI17 TUTES OF HEALTH WITH RESPECT TO RE18 SEARCH ON AUTISM.

19 Part B of title IV of the Public Health Service Act

20 (42 U.S.C. 284 et seq.) is amended by adding at the end

21 the following section:

22 ‘‘AUTISM

23 ‘‘SEC. 409C. (a) IN GENERAL.—

24 ‘‘(1) EXPANSION OF ACTIVITIES.—The Director

25 of NIH (in this section referred to as the ‘Director’)

26 shall expand, intensify, and coordinate the activities
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1 of the National Institutes of Health with respect to

2 research on autism.

3 ‘‘(2) ADMINISTRATION OF PROGRAM; COLLABO4 RATION AMONG AGENCIES.—The Director shall carry

5 out this section acting through the Director of the

6 National Institute of Mental Health and in collabo7 ration with any other agencies that the Director de8 termines appropriate.

9 ‘‘(b) CENTERS OF EXCELLENCE.—

10 ‘‘(1) IN GENERAL.—The Director shall under

11 subsection (a)(1) make awards of grants and con12 tracts to public or nonprofit private entities to pay

13 all or part of the cost of planning, establishing, im14 proving, and providing basic operating support for

15 centers of excellence regarding research on autism.

16 ‘‘(2) RESEARCH.—Each center under para17 graph (1) shall conduct basic and clinical research

18 into the cause, diagnosis, early detection, prevention,

19 control, and treatment of autism, including research

20 in the fields of developmental neurobiology, genetics,

21 and psychopharmacology.

22 ‘‘(3) SERVICES FOR PATIENTS.—A center under

23 paragraph (1) may expend amounts provided under

24 such paragraph to carry out a program to make in25 dividuals aware of opportunities to participate as
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1 subjects in research conducted by the centers. The

2 program may provide fees to such subjects. The pro3 gram may, in accordance with such criteria as the

4 Director may establish, provide to such subjects

5 health care, referrals for health and other services,

6 and such incidental services as will facilitate the par7 ticipation of individuals as such subjects.

8 ‘‘(4) COORDINATION OF CENTERS; REPORTS.—

9 The Director shall, as appropriate, provide for the

10 coordination of information among centers under

11 paragraph (1) and ensure regular communication

12 between such centers, and may require the periodic

13 preparation of reports on the activities of the centers

14 and the submission of the reports to the Director.

15 ‘‘(5) ORGANIZATION OF CENTERS.—Each cen16 ter under paragraph (1) shall use the facilities of a

17 single institution, or be formed from a consortium of

18 cooperating institutions, meeting such requirements

19 as may be prescribed by the Director.

20 ‘‘(6) NUMBER OF CENTERS; DURATION OF SUP21 PORT.—The Director shall, subject to the extent of

22 amounts made available in appropriations Acts, pro23 vide for the establishment of not less than five cen24 ters under paragraph (1). Support of such a center

25 may be for a period not exceeding 5 years. Such pe-
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1 riod may be extended for one or more additional pe2 riods not exceeding 5 years if the operations of such

3 center have been reviewed by an appropriate tech4 nical and scientific peer review group established by

5 the Director and if such group has recommended to

6 the Director that such period should be extended.

7 ‘‘(c) FACILITATION OF RESEARCH.—The Director

8 shall under subsection (a)(1) provide for a program under

9 which samples of tissues and genetic materials that are

10 of use in research on autism are donated, collected, pre11 served, and made available for such research. The pro12 gram shall be carried out in accordance with accepted sci13 entific and medical standards for the donation, collection,

14 and preservation of such samples.

15 ‘‘(d) PUBLIC INPUT.—The Director shall under sub16 section (a)(1) provide for means through which the public

17 can obtain information on the existing and planned pro18 grams and activities of the National Institutes of Health

19 with respect to autism and through which the Director can

20 receive comments from the public regarding such pro21 grams and activities.

22 ‘‘(e) FUNDING.—For the purpose of carrying out this

23 section, there are authorized to be appropriated

24 $33,000,000 for fiscal year 2000, and such sums as may

25 be necessary for each of the fiscal years 2001 through
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1 2004. Such authorizations of appropriations are in addi2 tion to any other authorization of appropriations that is

3 available for such purpose.’’.

4 SEC. 4. INFORMATION AND EDUCATION.

5 (a) IN GENERAL.—The Secretary shall establish and

6 implement a program to provide information and edu7 cation on autism to health professionals and the general

8 public, including information and education on advances

9 in the diagnosis and treatment of autism and training and

10 continuing education through programs for scientists, phy11 sicians, and other health professionals who provide care

12 for patients with autism.

13 (b) STIPENDS.—The Secretary may use amounts

14 made available under this section to provide stipends for

15 health professionals who are enrolled in training programs

16 under this section.

17 (c) AUTHORIZATION OF APPROPRIATIONS.—To carry

18 out this section, there is authorized to be appropriated

19 $6,000,000 for each of the fiscal years 2000 through

20 2004.

21 SEC. 5. AUTISM COORDINATING COMMITTEE.

22 (a) ESTABLISHMENT.—The Secretary shall establish

23 a committee to be known as the ‘‘Autism Coordinating

24 Committee’’ (in this section referred to as the ‘‘Commit25 tee’’) to coordinate all efforts within the Department of
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1 Health and Human Services concerning autism, including

2 activities carried out through the National Institutes of

3 Health and the Centers for Disease Control and Preven4 tion under this Act (and the amendment made by this

5 Act).

6 (b) MEMBERSHIP.—

7 (1) IN GENERAL.—The Committee shall be

8 composed of ex officio members in accordance with

9 paragraph (2) and 11 appointed members in accord10 ance with paragraph (3).

11 (2) EX OFFICIO MEMBERS.—The following offi12 cials shall serve as ex officio members of the Com13 mittee:

14 (A) The Director of the National Institutes

15 of Health.

16 (B) The Director of the National Institute

17 on Mental Health.

18 (C) The Director of the Centers for Dis19 ease Control and Prevention.

20 (D) The Administrator of the Health Re21 sources and Services Administration.

22 (3) APPOINTED MEMBERS.—Appointments to

23 the Committee shall be made in accordance with the

24 following:
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1 (A) Two members shall be research sci2 entists with demonstrated achievements in re3 search related to autism and related develop4 mental disabilities. The scientists shall be ap5 pointed by the Secretary in consultation with

6 the National Academy of Sciences.

7 (B) Five members shall be representatives

8 of the 5 national organizations whose primary

9 emphasis is on research into autism and other

10 pervasive developmental disabilities. One rep11 resentative from each of such organizations

12 shall be appointed by the Secretary in consulta13 tion with the National Academy of Sciences.

14 (C) Two members shall be clinicians whose

15 practice is primarily devoted to the treatment of

16 individuals with autism and other pervasive de17 velopmental disabilities. The clinicians shall be

18 appointed by the Secretary in consultation with

19 the Institute of Medicine and the National

20 Academy of Sciences.

21 (D) Two members shall be individuals who

22 are the parents or legal guardians of a person

23 or persons with autism or other pervasive devel24 opmental disabilities. The individuals shall be

25 appointed by the Secretary in consultation with
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1 the ex officio members under paragraph (1) and

2 the 5 national organizations referred to in sub3 paragraph (B).

4 (c) ADMINISTRATIVE SUPPORT; TERMS OF SERVICE;

5 OTHER PROVISIONS.—The following shall apply with re6 spect to the Committee:

7 (1) The Committee shall receive necessary and

8 appropriate administrative support from the Depart9 ment of Health and Human Services.

10 (2) Members of the Committee shall be ap11 pointed for a term of 3 years, and may serve for an

12 unlimited number of terms if reappointed.

13 (3) The Committee shall meet not less than 2

14 times per year.

15 (4) Members of the Committee shall not receive

16 additional compensation for their service. Such

17 members may receive reimbursement for appropriate

18 and additional expenses that are incurred through

19 service on the Committee which would not have in20 curred had they not been a member of the Commit21 tee.

22 SEC. 6. REPORT TO CONGRESS.

23 Not later than January 1, 2000, and each January

24 1 thereafter, the Secretary shall prepare and submit to

25 the appropriate committees of Congress, a report concern-
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1 ing the implementation of this Act and the amendments

2 made by this Act.

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