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104TH CONGRESS

1ST SESSION S. 684

To amend the Public Health Service Act to provide for programs of research

regarding Parkinson’s disease, and for other purposes.

IN THE SENATE OF THE UNITED STATES

APRIL 6 (legislative day, APRIL 5), 1995

Mr. HATFIELD (for himself, Mr. SIMPSON, Mr. SIMON, Mr. STEVENS, Mr.

INOUYE, Mr. WELLSTONE, Mr. KERREY, Mrs. BOXER, and Mr. COCHRAN) introduced the following bill; which was read twice and referred to

the Committee on Labor and Human Resources

A BILL

To amend the Public Health Service Act to provide for

programs of research regarding Parkinson’s disease, 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, Assistance, and Education Act of

6 1995’’.

7 SEC. 2. FINDINGS AND PURPOSE.

8 (a) FINDINGS.—Congress finds the following:
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1 (1) Parkinson’s disease and related disorders

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

3 is a neurological disorder affecting as many as

4 1,500,000 Americans.

5 (2) Approximately 40 percent of persons with

6 Parkinson’s are under the age of 60.

7 (3) While science has yet to determine what

8 causes the disease, research has found that cells that

9 produce a neurochemical called dopamine

10 inexplicably degenerate, causing uncontrollable trem11 ors, muscle stiffness, and loss of motor function.

12 (4) Eventually, Parkinson’s renders the af13 flicted individuals incapable of caring for themselves.

14 In addition to causing disability and suffering for

15 the afflicted individuals, Parkinson’s places tremen16 dous and prolonged physical, emotional, and finan17 cial strain on family and loved ones.

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

19 nearly $6,000,000,000 annually.

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

21 has been grossly underfunded. Only $26,000,000 is

22 allocated specifically for research on Parkinson’s, or

23 only about one dollar for every $200 in annual soci24 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 afflicted individuals and their family caregivers.

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

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

13 (42 U.S.C. 284 et seq.) is amended by adding at the end

14 the following section:

15 ‘‘PARKINSON’S DISEASE

16 ‘‘SEC. 409B. (a) IN GENERAL.—The Director of

17 NIH shall establish a program for the conduct and sup18 port of research and training, the dissemination of health

19 information, and other programs with respect to Parkin20 son’s disease.

21 ‘‘(b) INTERAGENCY COORDINATING COMMITTEE.—

22 ‘‘(1) IN GENERAL.—The Director of NIH shall

23 establish a committee to be known as the Inter24 agency Coordinating Committee on Parkinson’s Dis25 ease (in this subsection referred to as the ‘Coordi26 nating Committee’).
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1 ‘‘(2) DUTIES.—With respect to Parkinson’s, the

2 Coordinating Committee shall—

3 ‘‘(A) provide for the coordination of the ac4 tivities of the national research institutes; and

5 ‘‘(B) coordinate the aspects of all Federal

6 health programs and activities relating to Par7 kinson’s in order to assure the adequacy, effec8 tiveness, and technical soundness of such pro9 grams and activities and in order to provide for

10 the full communication and exchange of infor11 mation necessary to maintain adequate coordi12 nation of such programs and activities.

13 ‘‘(3) COMPOSITION.—The Coordinating Com14 mittee shall be composed of—

15 ‘‘(A) the directors of each of the national

16 research institutes and other agencies involved

17 in research with respect to Parkinson’s;

18 ‘‘(B) one representative of the relevant

19 Federal departments and agencies whose pro20 grams involve health functions or responsibil21 ities relevant to such disease;

22 ‘‘(C) individuals with the disease and indi23 viduals who have a family history with the dis24 ease; and
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1 ‘‘(D) health professionals or allied health

2 professionals.

3 ‘‘(4) CHAIR.—The Coordinating Committee

4 shall be chaired by the Director of NIH (or the des5 ignee of the Director). The Committee shall meet at

6 the call of the chair, but not less often than once

7 each year.

8 ‘‘(5) ANNUAL REPORT.—Not later than 120

9 days after the end of each fiscal year, the Coordinat10 ing Committee shall prepare and submit to the Sec11 retary, the Director of NIH, and the directors speci12 fied in paragraph (3)(A) a report detailing the ac13 tivities of the Committee in such fiscal year in carry14 ing out paragraph (2).

15 ‘‘(c) MORRIS K. UDALL RESEARCH CENTERS.—

16 ‘‘(1) IN GENERAL.—The Director of NIH shall

17 award Core Center Grants to encourage the develop18 ment of innovative multidisciplinary research and

19 provide training concerning Parkinson’s. The Direc20 tor shall award not more than 10 Core Center

21 Grants and designate each center funded under such

22 grants as a Morris K. Udall Center for Research on

23 Parkinson’s Disease.

24 ‘‘(2) REQUIREMENTS.—
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1 ‘‘(A) IN GENERAL.—With respect to Par2 kinson’s, each center assisted under this sub3 section shall—

4 ‘‘(i) use the facilities of a single insti5 tution or a consortium of cooperating insti6 tutions, and meet such qualifications as

7 may be prescribed by the Director of the

8 NIH; and

9 ‘‘(ii) conduct basic and clinical re10 search and provide patient care services.

11 ‘‘(B) DISCRETIONARY REQUIREMENTS.—

12 With respect to Parkinson’s, each center as13 sisted under this subsection may—

14 ‘‘(i) conduct training programs for

15 scientists and health professionals;

16 ‘‘(ii) conduct programs to provide in17 formation and continuing education to

18 health professionals;

19 ‘‘(iii) conduct programs for the dis20 semination of information to the public;

21 and

22 ‘‘(iv) develop and maintain, where ap23 propriate, a brain bank to collect speci24 mens related to the research and treatment

25 of Parkinson’s.
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1 ‘‘(3) STIPENDS REGARDING TRAINING PRO2 GRAMS.—A center may use funds provided under

3 paragraph (1) to provide stipends for scientists and

4 health professionals enrolled in training programs

5 under paragraph (2)(C).

6 ‘‘(4) DURATION OF SUPPORT.—Support of a

7 center under this subsection may be for a period not

8 exceeding five years. Such period may be extended

9 by the Director of NIH for one or more additional

10 periods of not more than five years if the operations

11 of such center have been reviewed by an appropriate

12 technical and scientific peer review group established

13 by the Director and if such group has recommended

14 to the Director that such period should be extended.

15 ‘‘(d) DATA SYSTEM; INFORMATION CLEARING16 HOUSE.—

17 ‘‘(1) DATA SYSTEM.—The Director of NIH

18 shall establish the National Parkinson’s Disease

19 Data System for the collection, storage, analysis, re20 trieval, and dissemination of data derived from pa21 tient populations with such disease, including, where

22 possible, data involving general populations for the

23 purpose of detection of individuals with a risk of de24 veloping the disease.
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1 ‘‘(2) INFORMATION CLEARINGHOUSE.—The Di2 rector of NIH shall establish the National Parkin3 son’s Disease Information Clearinghouse to facilitate

4 and enhance knowledge and understanding of such

5 disease on the part of health professionals, patients,

6 and the public through the effective dissemination of

7 information.

8 ‘‘(e) MORRIS K. UDALL LEADERSHIP AND EXCEL9 LENCE AWARDS.—The Director of NIH shall establish a

10 grant program to support scientists who have distin11 guished themselves in the field of Parkinson’s research.

12 Grants under this subsection shall be utilized to enable

13 established investigators to devote greater time and re14 sources in laboratories to conduct research on Parkinson’s

15 and to encourage the development of a new generation of

16 investigators, with the support and guidance of the most

17 productive and innovative senior researchers.

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

19 PROGRAM.—The Director of NIH shall establish a na20 tional education program that is designed to foster a na21 tional focus on Parkinson’s and the care of those with Par22 kinson’s. Activities under such program shall include—

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

24 organizations to develop better ways to provide care
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1 to individuals with Parkinson’s, and assist the fami2 lies of such individuals; and

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

4 public and private organizations that offer support

5 and aid to individuals with Parkinson’s and their

6 families.

7 ‘‘(g) AUTHORIZATION OF APPROPRIATIONS.—

8 ‘‘(1) IN GENERAL.—For the purpose of carry9 ing out this section, there are authorized to be ap10 propriated $100,000,000 for fiscal year 1996, and

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

12 years 1997 through 2000.

13 ‘‘(2) AVAILABILITY.—Of the amount appro14 priated under paragraph (1), the Secretary shall

15 make available not to exceed $10,000,000 for fiscal

16 year 1996, and such sums as may be necessary for

17 each of the fiscal years 1997 through 2000, to es18 tablish Morris K. Udall Centers under subsection

19 (c).’’.

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