II 

118TH CONGRESS 

1ST SESSION S. 1064 

To direct the Secretary of Health and Human Services to carry out a 

national project to prevent and cure Parkinson’s, to be known as the 

National Parkinson’s Project, and for other purposes. 

IN THE SENATE OF THE UNITED STATES 

MARCH 29, 2023 

Mrs. CAPITO (for herself, Mr. MURPHY, Mr. MARSHALL, Ms. SMITH, Mr. 

SCOTT of Florida, and Mrs. GILLIBRAND) introduced the following bill; 

which was read twice and referred to the Committee on Health, Education, Labor, and Pensions 

A BILL 

To direct the Secretary of Health and Human Services to 

carry out a national project to prevent and cure Parkinson’s, to be known as the National Parkinson’s Project, 

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 ‘‘National Plan to End 

5 Parkinson’s Act’’. 


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1 SEC. 2. NATIONAL PARKINSON’S PROJECT. 

2 (a) DEFINITION OF PARKINSON’S.—In this section, 

3 the term ‘‘Parkinson’s’’ means— 

4 (1) Parkinson’s disease; and 

5 (2) other neurodegenerative Parkinsonisms, in6 cluding, but not limited to, multiple system atrophy, 

7 Lewy body disease, corticobasal degeneration, pro8 gressive supranuclear palsy, and Parkinson’s-related 

9 dementia. 

10 (b) ESTABLISHMENT.—The Secretary of Health and 

11 Human Services (in this section referred to as the ‘‘Sec12 retary’’) shall carry out a national project to prevent and 

13 cure Parkinson’s, ameliorate its symptoms, and slow or 

14 stop its progression, to be known as the National Parkin15 son’s Project (referred to in this section as the ‘‘Project’’). 

16 (c) ACTIVITIES CARRIED OUT THROUGH PROJECT.— 

17 In carrying out the Project, the Secretary shall— 

18 (1) create, maintain, and periodically update an 

19 integrated national plan to prevent and cure Parkin20 son’s, ameliorate its symptoms, and slow or stop its 

21 progression; 

22 (2) carry out the annual assessment under sub23 section (d); 

24 (3) provide information (including an estimate 

25 of the level of Federal investment necessary to pre26 vent and cure Parkinson’s, ameliorate its symptoms, 


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1 and slow or stop its progression), and coordination 

2 of Parkinson’s research and services, across all Fed3 eral agencies; 

4 (4) encourage the development of safe and ef5 fective treatments, strategies, and other approaches 

6 to prevent, halt, or slow the course of Parkinson’s or 

7 to enhance functioning and improve quality of life; 

8 (5) promote the— 

9 (A) early diagnosis of Parkinson’s; and 

10 (B) coordination of the care and treatment 

11 of individuals with Parkinson’s; 

12 (6) review the impact of Parkinson’s on the 

13 physical, mental, and social health of those living 

14 with Parkinson’s and their care partners; 

15 (7) coordinate with international bodies, to the 

16 degree possible, to integrate and inform the global 

17 mission to prevent and cure Parkinson’s, ameliorate 

18 its symptoms, and slow or stop its progression; and 

19 (8) carry out other such activities as the Sec20 retary deems appropriate. 

21 (d) ANNUAL ASSESSMENT.—Not later than 24 

22 months after the date of enactment of this Act, and annu23 ally thereafter, the Secretary shall carry out an assess24 ment of the Nation’s progress in preparing for and reVerDate Sep 11 2014 00:49 Apr 08, 2023 Jkt 039200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\S1064.IS S1064

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1 sponding to the escalating burden of Parkinson’s, includ2 ing— 

3 (1) the formulation of recommendations for pri4 ority actions based on the assessment; 

5 (2) a description of the steps that have been or 

6 should be taken to implement the recommendations; 

7 and 

8 (3) such other items as the Secretary deems ap9 propriate. 

10 (e) ADVISORY COUNCIL.— 

11 (1) IN GENERAL.—The Secretary shall establish 

12 and maintain an Advisory Council on Parkinson’s 

13 Research, Care, and Services (referred to in this sec14 tion as the ‘‘Advisory Council’’). 

15 (2) MEMBERSHIP.— 

16 (A) FEDERAL MEMBERS.—The Advisory 

17 Council shall be comprised of diverse and inclu18 sive representatives from— 

19 (i) the Centers for Disease Control 

20 and Prevention; 

21 (ii) the Administration on Community 

22 Living; 

23 (iii) the Centers for Medicare & Med24 icaid Services; 


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1 (iv) the Office of the Director of the 

2 National Institutes of Health; 

3 (v) the National Institute of Neuro4 logical Disorders and Stroke; 

5 (vi) the National Institute of Environ6 mental Health Sciences; 

7 (vii) the Department of Veterans Af8 fairs; 

9 (viii) the Food and Drug Administra10 tion; 

11 (ix) the Department of Defense; 

12 (x) the Environmental Protection 

13 Agency; 

14 (xi) the Office of Minority Health; 

15 (xii) the Indian Health Service; and 

16 (xiii) other relevant Federal depart17 ments and agencies as determined by the 

18 Secretary. 

19 (B) NON-FEDERAL MEMBERS.—In addi20 tion to the members listed in subparagraph (A), 

21 the Advisory Council shall include 10 expert 

22 members from outside the Federal Government, 

23 to be appointed by the Secretary, which mem24 bers shall include— 


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1 (i) 2 Parkinson’s patient advocates, at 

2 least 1 of whom is living with young-onset 

3 Parkinson’s; 

4 (ii) 1 Parkinson’s family caregiver; 

5 (iii) 1 health care provider; 

6 (iv) 2 biomedical researchers with 

7 Parkinson’s-related expertise in basic, 

8 translational, clinical, or drug development 

9 science; 

10 (v) 1 movement disorder specialist 

11 who treats Parkinson’s patients; 

12 (vi) 1 dementia specialist who treats 

13 Parkinson’s patients; and 

14 (vii) 2 representatives from nonprofit 

15 organizations that have demonstrated ex16 perience in Parkinson’s research or Par17 kinson’s patient care and other services. 

18 (3) MEETINGS.— 

19 (A) QUARTERLY MEETINGS.—The Advi20 sory Council shall meet at least once each quar21 ter. 

22 (B) BIANNUAL RESEARCH MEETING.—Not 

23 later than 24 months after the date of enact24 ment of this Act, and every 2 years thereafter, 

25 the Advisory Council shall convene a meeting of 


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1 Federal and non-Federal organizations to dis2 cuss Parkinson’s research. 

3 (C) OPEN MEETINGS.—The meetings of 

4 the Advisory Council shall be open to the pub5 lic. 

6 (4) ADVICE.—The Advisory Council shall advise 

7 the Secretary on Parkinson’s-related issues. 

8 (5) BIANNUAL REPORT.—Not later than 18 

9 months after the date of enactment of this Act, and 

10 every 2 years thereafter, the Advisory Council shall 

11 provide to the Secretary and Congress a report con12 taining— 

13 (A) an evaluation of all federally funded ef14 forts in Parkinson’s research, prevention, clin15 ical care, and institutional-, home-, and commu16 nity-based programs and the outcomes of such 

17 efforts; 

18 (B) recommendations for priority actions 

19 to expand, eliminate, coordinate, refocus, or 

20 condense Federal programs based on each pro21 gram’s performance, mission, and purpose; 

22 (C) recommendations to— 

23 (i) reduce the financial impact of Par24 kinson’s on— 


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1 (I) the Medicare program and 

2 other federally funded programs; and 

3 (II) families living with Parkin4 son’s; 

5 (ii) improve health outcomes and 

6 quality of life; 

7 (iii) prevent Parkinson’s; and 

8 (iv) research the association between 

9 environmental triggers and Parkinson’s to 

10 help reduce exposure to potential triggers; 

11 and 

12 (D) an evaluation of the implementation, 

13 including outcomes, of the national plan under 

14 subsection (c)(1). 

15 (6) TERMINATION.—The Advisory Council shall 

16 terminate at the end of calendar year 2035. 

17 (f) DATA SHARING.—Agencies both within the De18 partment of Health and Human Services and outside of 

19 the Department that have data relating to Parkinson’s 

20 shall share such data with the Secretary of Health and 

21 Human Services, or the Secretary’s designee, consistent 

22 with the statutory obligations regrading disclosure of in23 formation for that department or agency, to enable the 

24 Secretary, or the Secretary’s designee, to complete the re25 port described in subsection (g). 


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1 (g) BIANNUAL REPORT.—The Secretary shall submit 

2 to the Congress— 

3 (1) a Biannual report that includes an evalua4 tion of all federally funded efforts in Parkinson’s re5 search, prevention, diagnosis, treatment, clinical 

6 care, and institutional-, home-, and community7 based programs and the outcomes of such efforts; 

8 (2) an evaluation of all such programs based on 

9 performance, mission, and purpose; 

10 (3) recommendations for— 

11 (A) priority actions based on the evalua12 tion conducted by the Secretary and the Advi13 sory Council to— 

14 (i) reduce the financial impact of Par15 kinson’s on— 

16 (I) the Medicare program and 

17 other federally funded programs; and 

18 (II) families living with Parkin19 son’s disease; 

20 (ii) improve health outcomes and 

21 quality of life; 

22 (iii) prevent Parkinson’s; and 

23 (iv) research the association between 

24 environmental triggers and Parkinson’s to 

25 help reduce exposure to potential triggers; 


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1 (B) priority actions to improve all federally 

2 funded efforts in Parkinson’s research, preven3 tion, diagnosis, treatment, clinical care, and in4 stitutional-, home-, and community-based pro5 grams; and 

6 (C) implementation steps to address pri7 ority actions described in subparagraphs (A) 

8 and (B); and 

9 (4) an up-to-date version of the national plan 

10 under subsection (c)(1). 

11 (h) SUNSET.—The section shall cease to be effective 

12 at the end of calendar year 2035. 

Æ 


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