IIB 

118TH CONGRESS 

1ST SESSION H. R. 2365 

IN THE SENATE OF THE UNITED STATES 

DECEMBER 14, 2023 

Received; read twice and referred to the Committee on Health, Education, 

Labor, and Pensions 

AN ACT 

To direct the Secretary of Health and Human Services to 

carry out a national project to prevent, diagnose, treat, 

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, 


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1 SECTION 1. SHORT TITLE. 

2 This Act may be cited as the ‘‘Dr. Emmanuel Bili3 rakis and Honorable Jennifer Wexton National Plan to 

4 End Parkinson’s Act’’. 

5 SEC. 2. NATIONAL PARKINSON’S PROJECT. 

6 Title III of the Public Health Service Act (42 U.S.C. 

7 241 et seq.) is amended by adding at the end: 

8 ‘‘PART W—PARKINSON’S AND RELATED 

9 DISORDERS 

10 ‘‘SEC. 399OO. NATIONAL PARKINSON’S PROJECT. 

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

12 the term ‘Parkinson’s’ means— 

13 ‘‘(1) Parkinson’s disease; and 

14 ‘‘(2) all other neurodegenerative Parkinsonisms, 

15 including multiple system atrophy, corticobasal de16 generation, progressive supranuclear palsy, and Par17 kinson’s-related dementia. 

18 ‘‘(b) ESTABLISHMENT.—The Secretary shall carry 

19 out a national project, to be known as the National Par20 kinson’s Project (referred to in this section as the 

21 ‘Project’), to prevent, diagnose, treat, and cure Parkin22 son’s. 

23 ‘‘(c) ACTIVITIES CARRIED OUT THROUGH

24 PROJECT.—In carrying out the Project, the Secretary 

25 shall— 


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1 ‘‘(1) create, maintain, and periodically update 

2 an integrated national plan to prevent, diagnose, 

3 treat, and cure Parkinson’s, ameliorate symptoms, 

4 and slow or stop progression; 

5 ‘‘(2) carry out the annual assessment under 

6 subsection (d); 

7 ‘‘(3) provide information, including— 

8 ‘‘(A) an estimate of the level of current 

9 Federal investment in preventing, diagnosing, 

10 treating, and curing Parkinson’s, ameliorating 

11 symptoms, and slowing or stopping progression; 

12 and 

13 ‘‘(B) if applicable, an estimate of the in14 vestment necessary to prevent, diagnose, treat, 

15 and cure Parkinson’s, ameliorate symptoms, 

16 and slow or stop progression; 

17 ‘‘(4) coordinate research and services across all 

18 Federal agencies related to Parkinson’s; 

19 ‘‘(5) encourage the development of safe and ef20 fective treatments, strategies, and other approaches 

21 to prevent, diagnose, treat, and cure Parkinson’s, 

22 ameliorate symptoms, and slow or stop progression; 

23 ‘‘(6) improve the— 

24 ‘‘(A) early diagnosis of Parkinson’s; and 


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1 ‘‘(B) coordination of the care and treat2 ment of individuals with Parkinson’s; 

3 ‘‘(7) review the impact of Parkinson’s on the 

4 physical, mental, and social health of individuals liv5 ing with Parkinson’s and their caregivers and fami6 lies; 

7 ‘‘(8) coordinate with international bodies, to the 

8 extent possible, to integrate and inform the mission 

9 to prevent, diagnose, treat, and cure Parkinson’s, 

10 ameliorate symptoms, and slow or stop progression 

11 globally; and 

12 ‘‘(9) to the extent practicable, collaborate with 

13 other entities to prevent duplication of existing re14 search activities for related disorders. 

15 ‘‘(d) ANNUAL ASSESSMENT.—Not later than 24 

16 months after the date of enactment of this section, and 

17 annually thereafter, the Secretary shall carry out an as18 sessment of the Nation’s progress in preparing for, and 

19 responding to, the escalating burden of Parkinson’s, in20 cluding— 

21 ‘‘(1) recommendations for priority actions based 

22 on the assessment; 

23 ‘‘(2) a description of any steps that are planned 

24 or have already been taken to implement such recVerDate Sep 11 2014 00:27 Dec 15, 2023 Jkt 049200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6201 E:\BILLS\H2365.RFS H2365

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1 ommendations, including whether such recommenda2 tions can be implemented under existing law; and 

3 ‘‘(3) such other items as the Secretary deter4 mines appropriate. 

5 ‘‘(e) ADVISORY COUNCIL.— 

6 ‘‘(1) IN GENERAL.—The Secretary shall estab7 lish and maintain an Advisory Council on Parkin8 son’s Research, Care, and Services (referred to in 

9 this section as the ‘Advisory Council’) to advise the 

10 Secretary on Parkinson’s-related issues. 

11 ‘‘(2) MEMBERSHIP.— 

12 ‘‘(A) FEDERAL MEMBERS.—The Advisory 

13 Council shall be comprised of experts, to be ap14 pointed by the Secretary, who collectively are 

15 from various backgrounds and perspectives, in16 cluding at least one member from each of— 

17 ‘‘(i) the Centers for Disease Control 

18 and Prevention; 

19 ‘‘(ii) the Administration on Commu20 nity Living; 

21 ‘‘(iii) the Centers for Medicare & Med22 icaid Services; 

23 ‘‘(iv) the National Institutes of 

24 Health; 


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1 ‘‘(v) the Agency for Healthcare Re2 search and Quality; 

3 ‘‘(vi) the Department of Veterans Af4 fairs; 

5 ‘‘(vii) the Food and Drug Administra6 tion; 

7 ‘‘(viii) the National Science Founda8 tion; 

9 ‘‘(ix) the Department of Defense; 

10 ‘‘(x) the Environmental Protection 

11 Agency; 

12 ‘‘(xi) the Office of Minority Health; 

13 ‘‘(xii) the Indian Health Service; 

14 ‘‘(xiii) the Office of the Surgeon Gen15 eral of the Public Health Service; and 

16 ‘‘(xiv) 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, to be appointed by the Secretary, who 

23 shall include representatives of minority com24 munities, communities disproportionately af25 fected by Parkinson’s, and communities underVerDate Sep 11 2014 00:27 Dec 15, 2023 Jkt 049200 PO 00000 Frm 00006 Fmt 6652 Sfmt 6201 E:\BILLS\H2365.RFS H2365

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1 represented in Parkinson’s research, who shall 

2 each be from outside the Federal Government, 

3 and who shall include— 

4 ‘‘(i) 2 Parkinson’s patient advocates, 

5 at least 1 of whom is living with young6 onset Parkinson’s; 

7 ‘‘(ii) 1 Parkinson’s family caregiver; 

8 ‘‘(iii) 1 health care provider; 

9 ‘‘(iv) 2 biomedical researchers with 

10 Parkinson’s-related expertise in basic, 

11 translational, clinical, or drug development 

12 science; 

13 ‘‘(v) 1 movement disorder specialist 

14 who treats Parkinson’s patients; 

15 ‘‘(vi) 1 dementia specialist who treats 

16 Parkinson’s patients; and 

17 ‘‘(vii) 2 representatives from nonprofit 

18 organizations that have demonstrated ex19 perience in Parkinson’s-related research or 

20 Parkinson’s-related patient care and other 

21 services. 

22 ‘‘(C) REPRESENTATION.—The Secretary 

23 shall ensure that the members of the Advisory 

24 Council are collectively representative of agen25 cies, professions, individuals, and entities conVerDate Sep 11 2014 00:27 Dec 15, 2023 Jkt 049200 PO 00000 Frm 00007 Fmt 6652 Sfmt 6201 E:\BILLS\H2365.RFS H2365

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1 cerned with, or affected by, activities under this 

2 section. 

3 ‘‘(3) MEETINGS.— 

4 ‘‘(A) FREQUENCY.—The Advisory Council 

5 shall meet— 

6 ‘‘(i) at least once each quarter during 

7 the 2-year period beginning on the date on 

8 which the Advisory Council is established; 

9 and 

10 ‘‘(ii) at the Secretary’s discretion 

11 after such period. 

12 ‘‘(B) ANNUAL RESEARCH MEETING.—Not 

13 later than 24 months after the date of enact14 ment of this section, and every year thereafter, 

15 the Advisory Council shall convene a meeting of 

16 Federal and non-Federal organizations to dis17 cuss Parkinson’s research. 

18 ‘‘(C) OPEN MEETINGS.—The meetings 

19 under subparagraphs (A) and (B) shall be open 

20 to the public. 

21 ‘‘(4) ANNUAL REPORT.—Not later than 18 

22 months after the date of enactment of this section, 

23 and every year thereafter, the Advisory Council shall 

24 provide to the Secretary and Congress a report con25 taining— 


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1 ‘‘(A) a list of all federally-funded efforts in 

2 Parkinson’s research, prevention, diagnosis, 

3 treatment, clinical care, and institutional-, 

4 home-, and community-based programs and the 

5 outcomes of such efforts; 

6 ‘‘(B) recommendations for priority actions 

7 to expand, eliminate, coordinate, refocus, 

8 streamline, or condense Federal programs based 

9 on each program’s performance, mission, scope, 

10 and purpose; 

11 ‘‘(C) recommendations to— 

12 ‘‘(i) reduce the financial impact of 

13 Parkinson’s on families living with Parkin14 son’s; 

15 ‘‘(ii) improve health outcomes for, and 

16 the quality of life of, individuals living with 

17 Parkinson’s; 

18 ‘‘(iii) prevent Parkinson’s, ameliorate 

19 symptoms, and slow or stop progression; 

20 ‘‘(iv) improve the quality of care pro21 vided to beneficiaries with Parkinson’s who 

22 receive coverage through a federally-funded 

23 health care program, such as the Medicare 

24 program under title XVIII of the Social 


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1 Security Act or the Medicaid program 

2 under title XIX of such Act; 

3 ‘‘(v) research the association between 

4 environmental triggers and Parkinson’s to 

5 help reduce exposure to potential triggers; 

6 and 

7 ‘‘(vi) research and better understand 

8 the underlying factors contributing to Par9 kinson’s; 

10 ‘‘(D) priority actions to improve all feder11 ally-funded efforts in Parkinson’s research, pre12 vention, diagnosis, treatment, clinical care, and 

13 institutional-, home-, and community-based pro14 grams; 

15 ‘‘(E) an evaluation of the implementation, 

16 including outcomes, of the national plan under 

17 subsection (c)(1); and 

18 ‘‘(F) implementation steps to address the 

19 recommendations and priority actions under 

20 subparagraphs (B), (C), and (D), based in part 

21 on the evaluation under subparagraph (E). 

22 ‘‘(5) TERMINATION.—The Advisory Council 

23 shall terminate at the end of calendar year 2035. 

24 ‘‘(f) INFORMATION SHARING.—Each Federal depart25 ment and agency that has information relating to ParkinVerDate Sep 11 2014 00:27 Dec 15, 2023 Jkt 049200 PO 00000 Frm 00010 Fmt 6652 Sfmt 6201 E:\BILLS\H2365.RFS H2365

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1 son’s shall share such information with the Secretary con2 sistent with the statutory obligations of such department 

3 or agency regarding disclosure of information, as nec4 essary to enable the Secretary to complete a report under 

5 subsection (e)(4). 

6 ‘‘(g) SUNSET.—The section shall cease to be effective 

7 at the end of calendar year 2035.’’. 

Passed the House of Representatives December 14, 

2023. 

Attest: KEVIN F. MCCUMBER, 

Clerk. 


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