I 
117TH CONGRESS 
2D SESSION 
H. R. 8585 
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 
JULY 28, 2022 
Mr. TONKO (for himself, Mr. BILIRAKIS, Mrs. CAROLYN B. MALONEY of New 
York, Mr. UPTON, Mr. HIGGINS of New York, and Mr. MCKINLEY) intro-
duced the following bill; which was referred to the Committee on Energy 
and Commerce 
A BILL 
To direct the Secretary of Health and Human Services to 
carry out a national project to prevent and cure Parkin-
son’s, to be known as the National Parkinson’s Project, 
and for other purposes. 
Be it enacted by the Senate and House of Representa-
tives of the United States of America in Congress assembled, 
SECTION 1. SHORT TITLE. 
This Act may be cited as the ‘‘National Plan to End 
Parkinson’s Act’’. 
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SEC. 2. NATIONAL PARKINSON’S PROJECT. 
(a) DEFINITION OF PARKINSON’S.—In this section, 
the term ‘‘Parkinson’s’’ means— 
(1) Parkinson’s disease; and 
(2) Parkinsonisms, including multiple system 
atrophy, Lewy body disease, corticobasal degenera-
tion, progressive supranuclear palsy, and Parkin-
son’s-related dementia. 
(b) ESTABLISHMENT.—The Secretary of Health and 
Human Services (in this section referred to as the ‘‘Sec-
retary’’) shall carry out a national project to prevent and 
cure Parkinson’s, to be known as the National Parkinson’s 
Project (referred to in this section as the ‘‘Project’’). 
(c) ACTIVITIES CARRIED OUT THROUGH PROJECT.— 
In carrying out the Project, the Secretary shall— 
(1) create, maintain, and periodically update an 
integrated national plan to prevent and cure Parkin-
son’s; 
(2) carry out the annual assessment under sub-
section (d); 
(3) evaluate all Federal programs related to 
Parkinson’s, including budget requests and approv-
als; 
(4) provide information (including an estimate 
of the level of Federal investment necessary to pre-
vent and cure Parkinson’s), and coordination of Par-
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kinson’s research and services, across all Federal 
agencies; 
(5) accelerate the development of treatments 
and other approaches to prevent, halt, or reverse the 
course of, Parkinson’s; 
(6) improve the— 
(A) early diagnosis of Parkinson’s; and 
(B) coordination of the care and treatment 
of individuals with Parkinson’s; 
(7) ensure the inclusion of populations at high-
er risk for Parkinson’s, or least likely to receive a 
diagnosis or care with respect to Parkinson’s, in 
clinical, research, and implement service efforts to 
decrease health disparities with respect to Parkin-
son’s; 
(8) review the impact of Parkinson’s on the 
physical, mental, and social health of those living 
with Parkinson’s and their care partners; 
(9) review social determinants of health, diver-
sity, equity, and inclusion associated with Parkin-
son’s; and 
(10) coordinate with international bodies to in-
tegrate and inform the global mission to prevent and 
cure Parkinson’s. 
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(d) ANNUAL
ASSESSMENT.—Not later than 18 
months after the date of enactment of this Act, and annu-
ally thereafter, the Secretary shall carry out an assess-
ment of the Nation’s progress in preparing for and re-
sponding to the escalating burden of Parkinson’s, includ-
ing— 
(1) the formulation of recommendations for pri-
ority actions based on the assessment; 
(2) a description of the steps that have been or 
should be taken to implement the recommendations; 
and 
(3) such other items as the Secretary deems ap-
propriate. 
(e) ADVISORY COUNCIL.— 
(1) IN GENERAL.—The Secretary shall establish 
and maintain an Advisory Council on Parkinson’s 
Research, Care, and Services (referred to in this sec-
tion as the ‘‘Advisory Council’’). 
(2) MEMBERSHIP.— 
(A) FEDERAL
MEMBERS.—The Advisory 
Council shall be comprised of diverse and inclu-
sive representatives from— 
(i) the Centers for Disease Control 
and Prevention; 
(ii) the Administration on Aging; 
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(iii) the Centers for Medicare & Med-
icaid Services; 
(iv) the Indian Health Service; 
(v) the Office of the Director of the 
National Institutes of Health; 
(vi) the National Institute of Neuro-
logical Disorders and Stroke; 
(vii) the National Institute of Envi-
ronmental Health Sciences; 
(viii) the National Institute on Aging; 
(ix) the National Science Foundation; 
(x) the Department of Veterans Af-
fairs; 
(xi) the Food and Drug Administra-
tion; 
(xii) the Department of Defense; 
(xiii) the Environmental Protection 
Agency; 
(xiv) the Office of Minority Health; 
and 
(xv) other relevant agencies as deter-
mined by the Secretary. 
(B) NON-FEDERAL
MEMBERS.—In addi-
tion to the members listed in subparagraph (A), 
the Advisory Council shall include 17 expert 
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members from outside the Federal Government, 
to be appointed by the Secretary, which mem-
bers shall include— 
(i) 4 Parkinson’s patient advocates, 
one of whom is living with young-onset 
Parkinson’s; 
(ii) 2 Parkinson’s family caregivers; 
(iii) 2 health care providers; 
(iv) 2 representatives of State health 
departments; 
(v) 2 biomedical researchers with Par-
kinson’s-related 
expertise 
in 
basic, 
translational, clinical, or drug development 
science; 
(vi) 1 movement disorder specialist 
who treats Parkinson’s patients; 
(vii) 1 dementia specialist who treats 
Parkinson’s patients; and 
(viii) 3 representatives, one from each 
of 3 nonprofit organizations that have 
demonstrated experience in Parkinson’s re-
search or Parkinson’s patient care and 
other services. 
(3) MEETINGS.— 
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(A) QUARTERLY
MEETINGS.—The Advi-
sory Council shall meet at least once each quar-
ter. 
(B) ANNUAL
RESEARCH
MEETING.—The 
Advisory Council shall convene an annual meet-
ing of Federal and non-Federal organizations to 
discuss Parkinson’s research. 
(C) OPEN
MEETINGS.—The meetings of 
the Advisory Council shall be open to the pub-
lic. 
(4) ADVICE.—The Advisory Council shall advise 
the Secretary on Parkinson’s-related issues. 
(5) ANNUAL
REPORT.—Not later than 15 
months after the date of enactment of this Act and 
annually thereafter, the Advisory Council shall pro-
vide to the Secretary and Congress a report con-
taining— 
(A) an evaluation of all federally funded ef-
forts in Parkinson’s research, prevention, clin-
ical care, and institutional-, home-, and commu-
nity-based programs and the outcomes of such 
efforts; 
(B) recommendations for priority actions 
to expand, eliminate, coordinate, refocus, or 
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condense Federal programs based on each pro-
gram’s performance, mission, and purpose; 
(C) recommendations to— 
(i) reduce the financial impact of Par-
kinson’s on— 
(I) the Medicare program and 
other federally funded programs; and 
(II) families living with Parkin-
son’s; 
(ii) improve health outcomes; 
(iii) prevent Parkinson’s; and 
(iv) eliminate exposure to environ-
mental triggers of Parkinson’s; and 
(D) an evaluation of the implementation, 
including outcomes, of the national plan under 
subsection (c)(1). 
(6) TERMINATION.—The Advisory Council shall 
terminate at the end of calendar year 2035. 
(f) DATA SHARING.—The Secretary may secure di-
rectly from any department or agency of the United States 
information necessary to enable the Secretary to complete 
the report under subsection (g). Upon request of the Sec-
retary, the head of that department or agency shall fur-
nish that information to the Secretary. 
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(g) ANNUAL REPORT.—The Secretary shall submit 
to the Congress— 
(1) an annual report that includes an evalua-
tion of all federally funded efforts in Parkinson’s re-
search, prevention, diagnosis, treatment, clinical 
care, and institutional-, home-, and community- 
based programs and the outcomes of such efforts; 
(2) an evaluation of all such programs based on 
performance, mission, and purpose; 
(3) recommendations for— 
(A) priority actions based on the evalua-
tion conducted by the Secretary and the Advi-
sory Council to— 
(i) reduce the financial impact of Par-
kinson’s on— 
(I) the Medicare program and 
other federally funded programs; and 
(II) families living with Parkin-
son’s disease; 
(ii) improve health outcomes; 
(iii) prevent Parkinson’s; and 
(iv) eliminate exposure to environ-
mental triggers of Parkinson’s; 
(B) priority actions to improve all federally 
funded efforts in Parkinson’s research, preven-
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tion, diagnosis, treatment, clinical care, and in-
stitutional-, home-, and community-based pro-
grams; and 
(C) implementation steps to address pri-
ority actions described in subparagraphs (A) 
and (B); and 
(4) an up-to-date version of the national plan 
under subsection (c)(1). 
(h) SUNSET.—The section shall cease to be effective 
at the end of calendar year 2035. 
Æ 
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