I

103D CONGRESS

2D SESSION H. R. 4789

To amend the Public Health Service Act to provide for the expansion and

coordination of research concerning Parkinson’s disease and related disorders, and to improve care and assistance for its victims and their

family caregivers, and for other purposes.

IN THE HOUSE OF REPRESENTATIVES

JULY 19, 1994

Mr. WAXMAN (for himself, Mr. UPTON, and Mr. RICHARDSON) introduced the

following bill; which was referred to the Committee on Energy and Commerce

A BILL

To amend the Public Health Service Act to provide for

the expansion and coordination of research concerning

Parkinson’s disease and related disorders, and to improve

care and assistance for its victims and their family

caregivers, and for other purposes.

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 ‘‘Morris K. Udall Par5 kinson’s Research, Education, and Assistance Act of

6 1994’’.
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1 SEC. 2. FINDINGS AND PURPOSE.

2 (a) FINDINGS.—Congress finds the following:

3 (1) Parkinson’s disease and related disorders

4 (hereafter referred to in this Act as ‘‘Parkinson’s’’)

5 is a neurological disorder affecting as many as

6 1,500,000 Americans.

7 (2) Approximately 40 percent of persons with

8 Parkinson’s are under the age of 60.

9 (3) While science has yet to determine what

10 causes the disease, research has found that cells that

11 produce a neurochemical called dopamine

12 inexplicably degenerate, causing uncontrollable trem13 ors, muscle stiffness, and loss of motor function.

14 (4) Eventually, Parkinson’s renders its victims

15 incapable of caring for themselves. In addition to

16 causing disability and suffering for its victims, Par17 kinson’s places tremendous and prolonged physical,

18 emotional, and financial strain on family and loved

19 ones.

20 (5) It is estimated that the disease costs society

21 nearly $6,000,000,000 annually.

22 (6) To date, the federally funded research effort

23 has been grossly underfunded. Only $30,000,000 is

24 allocated specifically for research on Parkinson’s, or

25 only about one dollar for every $200 in annual soci26 etal costs.
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1 (7) In order to take full advantage of the tre2 mendous potential for finding a cure or effective

3 treatment, the Federal investment in Parkinson’s

4 must be expanded, as well as the coordination

5 strengthened among the National Institutes of

6 Health research institutes.

7 (b) PURPOSE.—It is the purpose of this Act to pro8 vide for the expansion and coordination of research con9 cerning Parkinson’s, and to improve care and assistance

10 for its victims and their family caregivers.

11 SEC. 3. BIOMEDICAL RESEARCH ON PARKINSON’S DISEASE.

12 Part E of title IV of the Public Health Service Act

13 (42 U.S.C. 287 et seq.) is amended by adding at the end

14 thereof the following new subpart:

15 ‘‘Subpart 4—Parkinson’s Disease Research

16 ‘‘SEC. 485G. PARKINSON’S DISEASE RESEARCH.

17 ‘‘(a) EXPANSION OF BIOMEDICAL RESEARCH.—

18 ‘‘(1) COORDINATION COUNCIL.—The Director

19 of the National Institutes of Health shall establish

20 a council to coordinate Parkinson’s research activi21 ties. Members of the council shall include the Direc22 tor of the National Institutes of Health, the Director

23 of the National Institute of Neurological Disorders

24 and Stroke, the Director of the National Institute on

25 Aging, the Director of the National Institute of En-
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1 vironmental Health Sciences, patient advocates, and

2 representatives of other departments and agencies

3 conducting or supporting research on Parkinson’s.

4 ‘‘(2) NATIONAL CONSENSUS CONFERENCE.—

5 The council established under paragraph (1) shall

6 convene a National Consensus Conference on Par7 kinson’s Disease and Related Neuro-degenerative

8 Disorders to aid in the development of a broad-based

9 strategy for identifying the cause of and treating

10 such disorders.

11 ‘‘(3) RESEARCH AGENDA.—Not later than 180

12 days after the date of enactment of this section, and

13 annually thereafter, the Secretary, in consultation

14 with the council established under paragraph (1),

15 shall develop and submit to the Energy and Com16 merce Committee and the Appropriations Committee

17 of the House of Representatives and the Labor and

18 Human Resources Committee and the Appropria19 tions Committee of the Senate, a coordinated re20 search agenda.

21 ‘‘(4) RESEARCH CENTERS.—The Secretary shall

22 provide for the establishment of 10 Parkinson’s Re23 search Centers. Such centers shall—
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1 ‘‘(A) conduct research into the cause, pre2 vention, treatment, and management of Parkin3 son’s;

4 ‘‘(B) disseminate clinical information con5 cerning Parkinson’s and provide patient care

6 services;

7 ‘‘(C) provide training for health care per8 sonnel concerning Parkinson’s;

9 ‘‘(D) coordinate research with other such

10 Centers and related public and private research

11 institutions;

12 ‘‘(E) develop and maintain, where appro13 priate, a tissue bank to collect specimens relat14 ed to the research and treatment of Parkin15 son’s; and

16 ‘‘(F) enhance community awareness con17 cerning Parkinson’s and promote the involve18 ment of advocate groups.

19 ‘‘(b) MORRIS K. UDALL FEASIBILITY STUDY

20 GRANTS.—The Secretary may award feasibility study

21 grants under this section to support the development of

22 preliminary data sufficient to provide the basis for the

23 submission of applications for independent research sup24 port grants or establishment of a Center under this sec25 tion.
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1 ‘‘(c) MORRIS K. UDALL LEADERSHIP AND EXCEL2 LENCE AWARDS.—The Secretary shall establish a grant

3 program to support scientists who have distinguished

4 themselves in the field of Parkinson’s research. Grants

5 under this subsection shall be utilized to enable established

6 investigators to devote greater time and resources in lab7 oratories to conduct research on Parkinson’s and to en8 courage the development of a new generation of investiga9 tors, with the support and guidance of the most productive

10 and innovative senior researchers.

11 ‘‘(d) PATIENT AND FAMILY REGISTRIES.—The Sec12 retary shall establish a registry for screening and collect13 ing patient and family data that may be useful in deter14 mining incidence and possible risk factors concerning Par15 kinson’s.

16 ‘‘(e) MORRIS K. UDALL HEALTH PROFESSIONS

17 TRAINING GRANTS.—The Secretary may award grants to

18 schools of medicine, nursing, social work, and health serv19 ices administration, and other appropriate institutions, for

20 the provision of training and continuing education con21 cerning health and long-term care of individuals with Par22 kinson’s. In awarding grants under this subsection the

23 Secretary shall ensure appropriate geographic coverage.

24 ‘‘(f) NATIONAL PARKINSON’S DISEASE EDUCATION

25 PROGRAM.—The Secretary shall establish a national edu-
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1 cation program that is designed to foster a national focus

2 on Parkinson’s and the care of those with Parkinson’s.

3 Activities under such program shall include—

4 ‘‘(1) the bringing together of public and private

5 organizations to develop better ways to provide care

6 to individuals with Parkinson’s, and assist the fami7 lies of such individuals;

8 ‘‘(2) the provision of technical assistance to

9 public and private organizations that offer support

10 and aid to families caring for individuals with Par11 kinson’s; and

12 ‘‘(3) the establishment of a clearinghouse that

13 will disseminate the most up-to-date research, treat14 ment, and training information to families, health

15 professionals, and the general public concerning Par16 kinson’s.

17 ‘‘(g) APPLICATION.—To be eligible to receive a grant

18 or other assistance under this section, an individual or en19 tity shall prepare and submit to the Secretary an applica20 tion at such time, in such manner, and containing such

21 information as the Secretary may require.

22 ‘‘(h) AUTHORIZATION OF APPROPRIATIONS.—

23 ‘‘(1) IN GENERAL.—For carrying out the activi24 ties described in this section, there are authorized to

25 be appropriated $75,000,000 for fiscal year 1996,
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1 $100,000,000 for fiscal year 1997, $200,000,000 for

2 fiscal year 1998, and such sums as may be nec3 essary for each of the fiscal years 1999 and 2000.

4 Of amounts so appropriated, the Secretary shall

5 make available—

6 ‘‘(A) $10,000,000 for fiscal year 1996,

7 $20,000,000 for fiscal year 1997, $30,000,000

8 for fiscal year 1998, and such sums as may be

9 necessary for each of the fiscal years 1999 and

10 2000, for establishing centers under subsection

11 (a)(4); and

12 ‘‘(B) $2,000,000 for fiscal year 1996,

13 $4,000,000 for fiscal year 1997, $6,000,000 for

14 fiscal year 1998, and such sums as may be nec15 essary for each of the fiscal years 1999 and

16 2000 for carrying out feasibility study grants

17 under subsection (b).

18 ‘‘(2) LEADERSHIP AND EXCELLENCE

19 AWARDS.—For carrying out activities under sub20 section (c), there are authorized to be appropriated

21 $10,000,000 for fiscal year 1996, $15,000,000 for

22 fiscal year 1997, $20,000,000 for fiscal year 1998,

23 and such sums as may be necessary for each of the

24 fiscal years 1999 and 2000.
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1 ‘‘(3) PATIENT AND FAMILY REGISTRIES.—For

2 carrying out activities under subsection (d), there

3 are authorized to be appropriated $2,000,000 for

4 each of fiscal years 1996, 1997, and 1998, and such

5 sums as may be necessary for each of the fiscal

6 years 1999 and 2000.

7 ‘‘(4) HEALTH PROFESSIONS TRAINING PRO8 GRAMS.—For carrying out activities under sub9 section (e), there are authorized to be appropriated

10 $2,000,000 for fiscal year 1996, $5,000,000 for fis11 cal year 1997, $8,000,000 for fiscal year 1998, and

12 such sums as may be necessary for each of the fiscal

13 years 1999 and 2000.

14 ‘‘(5) NATIONAL PARKINSON’S DISEASE EDU15 CATION PROGRAM.—For carrying out activities

16 under subsection (f), there are authorized to be ap17 propriated $2,000,000 for fiscal year 1996,

18 $3,000,000 for fiscal year 1997, $4,000,000 for fis19 cal year 1998, and such sums as may be necessary

20 for each of the fiscal years 1999 and 2000.’’.

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