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Union Calendar No. 253 

118TH CONGRESS 

1ST SESSION H. R. 2365 

[Report No. 118–313] 

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 HOUSE OF REPRESENTATIVES 

MARCH 29, 2023 

Mr. BILIRAKIS (for himself, Mr. TONKO, Mrs. HARSHBARGER, Ms. SCHAKOWSKY, Mr. FITZPATRICK, Ms. KUSTER, Mrs. KIM of California, Ms. 

BARRAGA ́N, Mr. VALADAO, and Mr. HIGGINS of New York) introduced 

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

Commerce 

DECEMBER 12, 2023 

Additional sponsors: Ms. BONAMICI, Mrs. TRAHAN, Mr. QUIGLEY, Mr. 

CARBAJAL, Mrs. BICE, Ms. MATSUI, Mr. NORCROSS, Ms. LOIS FRANKEL

of Florida, Ms. CHU, Mr. GRIJALVA, Ms. DEAN of Pennsylvania, Mr. 

SCOTT FRANKLIN of Florida, Mr. SMITH of Washington, Mr. GOMEZ, Mr. 

SWALWELL, Mr. PAPPAS, Ms. WEXTON, Mr. BACON, Mr. NADLER, Mrs. 

NAPOLITANO, Mr. KIM of New Jersey, Ms. SEWELL, Mrs. DINGELL, Mr. 

EVANS, Mr. GARCI ́A of Illinois, Mr. CONNOLLY, Ms. NORTON, Mr. 

MORELLE, Mrs. CHERFILUS-MCCORMICK, Mr. CORREA, Mr. KILMER, 

Ms. DELBENE, Mr. SCHNEIDER, Ms. PORTER, Mr. SMUCKER, Mr. 

MCGOVERN, Ms. MACE, Mr. MOONEY, Mr. DAVIS of North Carolina, Mr. 

RUTHERFORD, Mr. CA ́RDENAS, Ms. TITUS, Mr. MULLIN, Mr. CAREY, Mr. 

JOHNSON of Georgia, Ms. BLUNT ROCHESTER, Mr. VAN DREW, Mr. 

FLEISCHMANN, Ms. MALLIOTAKIS, Mrs. PELTOLA, Ms. WILD, Mr. 

BURCHETT, Mr. GRAVES of Louisiana, Mr. LUETKEMEYER, Mr. 

LAHOOD, Mr. RASKIN, Mr. PANETTA, Mr. LYNCH, Mr. EDWARDS, Mr. 

HIMES, Ms. CLARKE of New York, Mr. WILSON of South Carolina, Mr. 

DUNN of Florida, Mrs. HOUCHIN, Ms. CRAIG, Mr. LIEU, Mr. PETERS, 

Mrs. MILLER of West Virginia, Mr. TIMMONS, Mr. NEGUSE, Mr. CRENSHAW, Mrs. FLETCHER, Mr. ALLRED, Mr. FROST, Mr. PASCRELL, Ms. 

SHERRILL, Ms. MENG, Ms. LEE of Nevada, Mrs. SYKES, Mr. COSTA, Mr. 

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TURNER, Mr. MCGARVEY, Mr. AUSTIN SCOTT of Georgia, Ms. HOYLE of 

Oregon, Mr. LANDSMAN, Ms. TLAIB, Mr. STANTON, Mr. GOTTHEIMER, 

Mr. SHERMAN, Mr. WALBERG, Mr. EZELL, Mr. BLUMENAUER, Ms. LEE

of California, Mr. KILDEE, Ms. SCANLON, Mr. LEVIN, Mr. BALDERSON, 

Ms. CARAVEO, Ms. SALINAS, Mr. LARSEN of Washington, Mr. MAGAZINER, Mr. TRONE, Mr. CLEAVER, Ms. BROWNLEY, Ms. LEGER

FERNANDEZ, Mr. VEASEY, Mr. GARAMENDI, Mr. THOMPSON of Pennsylvania, Mr. JACKSON of North Carolina, Mr. LATURNER, Ms. HOULAHAN, 

Mr. HUIZENGA, Mr. CARL, Mr. MENENDEZ, Mr. MANN, Mr. 

MOOLENAAR, Ms. PETTERSEN, Ms. MCCLELLAN, Ms. PEREZ, Mr. CROW, 

Ms. DAVIDS of Kansas, Ms. STRICKLAND, Ms. STEVENS, Ms. ADAMS, Mr. 

TAKANO, Ms. LOFGREN, Ms. SLOTKIN, Mr. BEAN of Florida, Mr. 

CISCOMANI, Mr. CASTRO of Texas, Ms. MANNING, Mr. FINSTAD, Mrs. 

SPARTZ, Ms. HAGEMAN, Mr. KELLY of Pennsylvania, Mr. LAWLER, Mr. 

GARBARINO, Mr. PENCE, Mr. LAMALFA, Mr. KUSTOFF, Mr. MEEKS, Ms. 

MOORE of Wisconsin, Mr. SCOTT of Virginia, Mr. KRISHNAMOORTHI, Mr. 

BOWMAN, Ms. OMAR, Ms. DE LA CRUZ, Ms. STANSBURY, Ms. ESCOBAR, 

Ms. CROCKETT, Ms. TOKUDA, Mr. JOHNSON of Ohio, Mr. CASTEN, Ms. 

SALAZAR, Mrs. STEEL, Mr. MRVAN, Mr. LANGWORTHY, Mr. KEAN of 

New Jersey, Mr. ROUZER, Mr. POCAN, Mr. MCCAUL, Mrs. CAMMACK, 

and Mr. RYAN

DECEMBER 12, 2023 

Reported with amendments, committed to the Committee of the Whole House 

on the State of the Union, and ordered to be printed 

[Strike out all after the enacting clause and insert the part printed in italic] 

[For text of introduced bill, see copy of bill as introduced on March 29, 2023] 

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. 

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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 ‘‘Dr. Emmanuel Bilirakis 

5 National Plan to End Parkinson’s Act’’. 

6 SEC. 2. NATIONAL PARKINSON’S PROJECT. 

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

8 241 et seq.) is amended by adding at the end: 

9 ‘‘PART W—PARKINSON’S AND RELATED 

10 DISORDERS 

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

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

13 the term ‘Parkinson’s’ means— 

14 ‘‘(1) Parkinson’s disease; and 

15 ‘‘(2) all other neurodegenerative Parkinsonisms, 

16 including multiple system atrophy, corticobasal de17 generation, progressive supranuclear palsy, and Par18 kinson’s-related dementia. 

19 ‘‘(b) ESTABLISHMENT.—The Secretary shall carry out 

20 a national project, to be known as the National Parkinson’s 

21 Project (referred to in this section as the ‘Project’), to pre22 vent, diagnose, treat, and cure Parkinson’s. 

23 ‘‘(c) ACTIVITIES CARRIED OUT THROUGH PROJECT.— 

24 In carrying out the Project, the Secretary 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 sub6 section (d); 

7 ‘‘(3) provide information, including— 

8 ‘‘(A) an estimate of the level of current Fed9 eral investment in preventing, diagnosing, treat10 ing, and curing Parkinson’s, ameliorating symp11 toms, and slowing or stopping progression; and 

12 ‘‘(B) if applicable, an estimate of the invest13 ment necessary to prevent, diagnose, treat, and 

14 cure Parkinson’s, ameliorate symptoms, and slow 

15 or stop progression; 

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

17 Federal agencies related to Parkinson’s; 

18 ‘‘(5) encourage the development of safe and effec19 tive treatments, strategies, and other approaches to 

20 prevent, diagnose, treat, and cure Parkinson’s, ame21 liorate symptoms, and slow or stop progression; 

22 ‘‘(6) improve the— 

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

24 ‘‘(B) coordination of the care and treatment 

25 of individuals with Parkinson’s; 

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

2 physical, mental, and social health of individuals liv3 ing with Parkinson’s and their caregivers and fami4 lies; 

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

6 extent possible, to integrate and inform the mission to 

7 prevent, diagnose, treat, and cure Parkinson’s, ame8 liorate symptoms, and slow or stop progression glob9 ally; and 

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

11 other entities to prevent duplication of existing re12 search activities for related disorders. 

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

14 months after the date of enactment of this section, and an15 nually thereafter, the Secretary shall carry out an assess16 ment of the Nation’s progress in preparing for, and re17 sponding to, the escalating burden of Parkinson’s, includ18 ing— 

19 ‘‘(1) recommendations for priority actions based 

20 on the assessment; 

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

22 or have already been taken to implement such rec23 ommendations, including whether such recommenda24 tions can be implemented under existing law; and 

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1 ‘‘(3) such other items as the Secretary determines 

2 appropriate. 

3 ‘‘(e) ADVISORY COUNCIL.— 

4 ‘‘(1) IN GENERAL.—The Secretary shall establish 

5 and maintain an Advisory Council on Parkinson’s 

6 Research, Care, and Services (referred to in this sec7 tion as the ‘Advisory Council’) to advise the Secretary 

8 on Parkinson’s-related issues. 

9 ‘‘(2) MEMBERSHIP.— 

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

11 Council shall be comprised of experts, to be ap12 pointed by the Secretary, who collectively are 

13 from various backgrounds and perspectives, in14 cluding at least one member from each of— 

15 ‘‘(i) the Centers for Disease Control 

16 and Prevention; 

17 ‘‘(ii) the Administration on Commu18 nity Living; 

19 ‘‘(iii) the Centers for Medicare & Med20 icaid Services; 

21 ‘‘(iv) the National Institutes of Health; 

22 ‘‘(v) the Agency for Healthcare Re23 search and Quality; 

24 ‘‘(vi) the Department of Veterans Af25 fairs; 

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1 ‘‘(vii) the Food and Drug Administra2 tion; 

3 ‘‘(viii) the National Science Founda4 tion; 

5 ‘‘(ix) the Department of Defense; 

6 ‘‘(x) the Environmental Protection 

7 Agency; 

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

9 ‘‘(xii) the Indian Health Service; 

10 ‘‘(xiii) the Surgeon General of the Pub11 lic Health Service; and 

12 ‘‘(xiv) other relevant Federal depart13 ments and agencies as determined by the 

14 Secretary. 

15 ‘‘(B) NON-FEDERAL MEMBERS.—In addi16 tion to the members listed in subparagraph (A), 

17 the Advisory Council shall include 10 expert 

18 members, to be appointed by the Secretary, who 

19 shall include representatives of minority commu20 nities, communities disproportionately affected 

21 by Parkinson’s, and communities underrep22 resented in Parkinson’s research, who shall each 

23 be from outside the Federal Government, and 

24 who shall include— 

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

2 at least 1 of whom is living with young3 onset 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 expe16 rience in Parkinson’s-related research or 

17 Parkinson’s-related patient care and other 

18 services. 

19 ‘‘(C) REPRESENTATION.—The Secretary 

20 shall ensure that the members of the Advisory 

21 Council are collectively representative of agen22 cies, professions, individuals, and entities con23 cerned with, or affected by, activities under this 

24 section. 

25 ‘‘(3) MEETINGS.— 

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

2 shall meet— 

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

4 the 2-year period beginning on the date on 

5 which the Advisory Council is established; 

6 and 

7 ‘‘(ii) at the Secretary’s discretion after 

8 such period. 

9 ‘‘(B) ANNUAL RESEARCH MEETING.—Not 

10 later than 24 months after the date of enactment 

11 of this section, and every year thereafter, the Ad12 visory Council shall convene a meeting of Fed13 eral and non-Federal organizations to discuss 

14 Parkinson’s research. 

15 ‘‘(C) OPEN MEETINGS.—The meetings under 

16 subparagraphs (A) and (B) shall be open to the 

17 public. 

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

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

20 every year thereafter, the Advisory Council shall pro21 vide to the Secretary and Congress a report con22 taining— 

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

24 Parkinson’s research, prevention, diagnosis, 

25 treatment, clinical care, and institutional-, 

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1 home-, and community-based programs and the 

2 outcomes of such efforts; 

3 ‘‘(B) recommendations for priority actions 

4 to expand, eliminate, coordinate, refocus, stream5 line, or condense Federal programs based on each 

6 program’s performance, mission, scope, and pur7 pose; 

8 ‘‘(C) recommendations to— 

9 ‘‘(i) reduce the financial impact of 

10 Parkinson’s on families living with Parkin11 son’s; 

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

13 the quality of life of, individuals living with 

14 Parkinson’s; 

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

16 symptoms, and slow or stop progression; 

17 ‘‘(iv) improve the quality of care pro18 vided to beneficiaries with Parkinson’s who 

19 receive coverage through a federally-funded 

20 health care program, such as the Medicare 

21 program under title XVIII of the Social Se22 curity Act or the Medicaid program under 

23 title XIX of such Act; 

24 ‘‘(v) research the association between 

25 environmental triggers and Parkinson’s to 

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1 help reduce exposure to potential triggers; 

2 and 

3 ‘‘(vi) research and better understand 

4 the underlying factors contributing to Par5 kinson’s; 

6 ‘‘(D) priority actions to improve all feder7 ally-funded efforts in Parkinson’s research, pre8 vention, diagnosis, treatment, clinical care, and 

9 institutional-, home-, and community-based pro10 grams; 

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

12 including outcomes, of the national plan under 

13 subsection (c)(1); and 

14 ‘‘(F) implementation steps to address the 

15 recommendations and priority actions under 

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

17 on the evaluation under subparagraph (E). 

18 ‘‘(5) TERMINATION.—The Advisory Council shall 

19 terminate at the end of calendar year 2035. 

20 ‘‘(f) INFORMATION SHARING.—Each Federal depart21 ment and agency that has information relating to Parkin22 son’s shall share such information with the Secretary con23 sistent with the statutory obligations of such department 

24 or agency regarding disclosure of information, as necessary 

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1 to enable the Secretary to complete a report under sub2 section (e)(4). 

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

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

Amend the title so as to read: ‘‘A bill 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.’’. 

Union Calendar No. 253 

118TH CONGRESS 

1ST SESSION H. R. 2365 

[Report No. 118–313] 

A BILL 

To direct the Secretary of Health and Human 

poses. National Parkinson’s Project, and for other purvent and cure Parkinson’s, to be known as the Services to carry out a national project to preDECEMBER 12, 2023 

Reported with amendments, committed to the Committee 

dered to be printed of the Whole House on the State of the Union, and orVerDate Sep 11 2014 00:27 Dec 13, 2023 Jkt 049200 PO 00000 Frm 00014 Fmt 6651 Sfmt 6651 E:\BILLS\H2365.RH H2365