II 

117TH CONGRESS 

2D SESSION S. 4851 

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 

SEPTEMBER 14, 2022 

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

6 SEC. 2. NATIONAL PARKINSON’S PROJECT. 

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

8 the term ‘‘Parkinson’s’’ means— 


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1 (1) Parkinson’s disease; and 

2 (2) Parkinsonisms, including multiple system 

3 atrophy, Lewy body disease, corticobasal degenera4 tion, progressive supranuclear palsy, and Parkin5 son’s-related dementia. 

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

7 Human Services (in this section referred to as the ‘‘Sec8 retary’’) shall carry out a national project to prevent and 

9 cure Parkinson’s, to be known as the National Parkinson’s 

10 Project (referred to in this section as the ‘‘Project’’). 

11 (c) ACTIVITIES CARRIED OUT THROUGH PROJECT.— 

12 In carrying out the Project, the Secretary shall— 

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

14 integrated national plan to prevent and cure Parkin15 son’s; 

16 (2) carry out the annual assessment under sub17 section (d); 

18 (3) evaluate all Federal programs related to 

19 Parkinson’s, including budget requests and approv20 als; 

21 (4) provide information (including an estimate 

22 of the level of Federal investment necessary to pre23 vent and cure Parkinson’s), and coordination of Par24 kinson’s research and services, across all Federal 

25 agencies; 


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1 (5) accelerate the development of treatments 

2 and other approaches to prevent, halt, or reverse the 

3 course of, Parkinson’s; 

4 (6) improve the— 

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

6 (B) coordination of the care and treatment 

7 of individuals with Parkinson’s; 

8 (7) ensure the inclusion of populations at high9 er risk for Parkinson’s—or least likely to receive a 

10 diagnosis or care with respect to Parkinson’s—in 

11 clinical research, and implement service efforts to 

12 decrease health disparities with respect to Parkin13 son’s; 

14 (8) review the impact of Parkinson’s on the 

15 physical, mental, and social health of those living 

16 with Parkinson’s and their care partners; 

17 (9) review social determinants of health, diver18 sity, equity, and inclusion associated with Parkin19 son’s; and 

20 (10) coordinate with international bodies to in21 tegrate and inform the global mission to prevent and 

22 cure Parkinson’s. 

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

24 months after the date of enactment of this Act, and annu25 ally thereafter, the Secretary shall carry out an assessVerDate Sep 11 2014 23:08 Sep 15, 2022 Jkt 029200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\S4851.IS S4851

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1 ment of the Nation’s progress in preparing for and re2 sponding to the escalating burden of Parkinson’s, includ3 ing— 

4 (1) the formulation of recommendations for pri5 ority actions based on the assessment; 

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

7 should be taken to implement the recommendations; 

8 and 

9 (3) such other items as the Secretary deems ap10 propriate. 

11 (e) ADVISORY COUNCIL.— 

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

13 and maintain an Advisory Council on Parkinson’s 

14 Research, Care, and Services (referred to in this sec15 tion as the ‘‘Advisory Council’’). 

16 (2) MEMBERSHIP.— 

17 (A) FEDERAL MEMBERS.—The Advisory 

18 Council shall be comprised of diverse and inclu19 sive representatives from— 

20 (i) the Centers for Disease Control 

21 and Prevention; 

22 (ii) the Administration on Aging; 

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

25 (iv) the Indian Health Service; 


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1 (v) the Office of the Director of the 

2 National Institutes of Health; 

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

5 (vii) the National Institute of Envi6 ronmental Health Sciences; 

7 (viii) the National Institute on Aging; 

8 (ix) the National Science Foundation; 

9 (x) the Department of Veterans Af10 fairs; 

11 (xi) the Food and Drug Administra12 tion; 

13 (xii) the Department of Defense; 

14 (xiii) the Environmental Protection 

15 Agency; 

16 (xiv) the Office of Minority Health; 

17 and 

18 (xv) other relevant Federal depart19 ments and agencies as determined by the 

20 Secretary. 

21 (B) NON-FEDERAL MEMBERS.—In addi22 tion to the members listed in subparagraph (A), 

23 the Advisory Council shall include 17 expert 

24 members from outside the Federal Government, 


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1 to be appointed by the Secretary, which mem2 bers shall include— 

3 (i) 4 Parkinson’s patient advocates, 

4 one of whom is living with young-onset 

5 Parkinson’s; 

6 (ii) 2 Parkinson’s family caregivers; 

7 (iii) 2 health care providers; 

8 (iv) 2 representatives of State health 

9 departments; 

10 (v) 2 biomedical researchers with Par11 kinson’s-related expertise in basic, 

12 translational, clinical, or drug development 

13 science; 

14 (vi) 1 movement disorder specialist 

15 who treats Parkinson’s patients; 

16 (vii) 1 dementia specialist who treats 

17 Parkinson’s patients; and 

18 (viii) 3 representatives, one from each 

19 of 3 nonprofit organizations that have 

20 demonstrated experience in Parkinson’s re21 search or Parkinson’s patient care and 

22 other services. 

23 (3) MEETINGS.— 


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1 (A) QUARTERLY MEETINGS.—The Advi2 sory Council shall meet at least once each quar3 ter. 

4 (B) ANNUAL RESEARCH MEETING.—The 

5 Advisory Council shall convene an annual meet6 ing of Federal and non-Federal organizations to 

7 discuss Parkinson’s research. 

8 (C) OPEN MEETINGS.—The meetings of 

9 the Advisory Council shall be open to the pub10 lic. 

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

12 the Secretary on Parkinson’s-related issues. 

13 (5) ANNUAL REPORT.—Not later than 18 

14 months after the date of enactment of this Act and 

15 annually thereafter, the Advisory Council shall pro16 vide to the Secretary and Congress a report con17 taining— 

18 (A) an evaluation of all federally funded ef19 forts in Parkinson’s research, prevention, clin20 ical care, and institutional-, home-, and commu21 nity-based programs and the outcomes of such 

22 efforts; 

23 (B) recommendations for priority actions 

24 to expand, eliminate, coordinate, refocus, or 


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1 condense Federal programs based on each pro2 gram’s performance, mission, and purpose; 

3 (C) recommendations to— 

4 (i) reduce the financial impact of Par5 kinson’s on— 

6 (I) the Medicare program and 

7 other federally funded programs; and 

8 (II) families living with Parkin9 son’s; 

10 (ii) improve health outcomes; 

11 (iii) prevent Parkinson’s; and 

12 (iv) eliminate exposure to environ13 mental triggers of Parkinson’s; and 

14 (D) an evaluation of the implementation, 

15 including outcomes, of the national plan under 

16 subsection (c)(1). 

17 (6) TERMINATION.—The Advisory Council shall 

18 terminate at the end of calendar year 2035. 

19 (f) DATA SHARING.—Agencies both within the De20 partment of Health and Human Services and outside of 

21 the Department that have data relating to Parkinson’s 

22 shall share such data with the Secretary of Health and 

23 Human Services, or the Secretary’s designee, 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) ANNUAL REPORT.—The Secretary shall submit 

2 to the Congress— 

3 (1) an annual 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; 

21 (iii) prevent Parkinson’s; and 

22 (iv) eliminate exposure to environ23 mental triggers of Parkinson’s; 

24 (B) priority actions to improve all federally 

25 funded efforts in Parkinson’s research, prevenVerDate Sep 11 2014 23:08 Sep 15, 2022 Jkt 029200 PO 00000 Frm 00009 Fmt 6652 Sfmt 6201 E:\BILLS\S4851.IS S4851

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1 tion, diagnosis, treatment, clinical care, and in2 stitutional-, home-, and community-based pro3 grams; and 

4 (C) implementation steps to address pri5 ority actions described in subparagraphs (A) 

6 and (B); and 

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

8 under subsection (c)(1). 

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

10 at the end of calendar year 2035. 

Æ 


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