What This Bill Does
This bill directs the Secretary of Health and Human Services to create and carry out a national project called the National Parkinson's Project. The project aims to prevent and cure Parkinson's disease and related conditions, reduce symptoms, and slow or stop disease progression. The bill also establishes an advisory council and requires regular reports to Congress about progress and spending on Parkinson's research and services.
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Who It Affects
The bill directly affects:
- The Secretary of Health and Human Services and federal health agencies
- People living with Parkinson's disease and related neurodegenerative conditions
- Family caregivers of people with Parkinson's
- Biomedical researchers studying Parkinson's
- Healthcare providers treating Parkinson's patients
- Federal agencies involved in disease research and prevention
- Congress (which receives required reports)
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Key Provisions
- The Secretary must create, maintain and periodically update a national plan to prevent and cure Parkinson's and slow or stop its progression (Sec. 2(c)(1))
- The Secretary must carry out an annual assessment of the nation's progress in addressing Parkinson's, starting no later than 24 months after the bill becomes law (Sec. 2(d))
- The Secretary must establish an Advisory Council on Parkinson's Research, Care, and Services with federal members from multiple agencies and 10 non-federal expert members including patients, caregivers, researchers and healthcare providers (Sec. 2(e))
- The Advisory Council must meet at least once every three months and must provide reports to the Secretary and Congress every two years evaluating all federally funded Parkinson's efforts and recommending priority actions (Sec. 2(e)(3) and 2(e)(5))
- Federal agencies must share Parkinson's-related data with the Secretary to help complete required reports (Sec. 2(f))
- The Secretary must submit biannual reports to Congress evaluating all federally funded Parkinson's research, prevention, diagnosis, treatment and care programs (Sec. 2(g))
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What Changes
If this bill becomes law, the federal government will formally establish and coordinate a national effort specifically focused on Parkinson's disease prevention and treatment. Multiple federal agencies will work together through an advisory council. The government will regularly assess progress, identify gaps and report findings to Congress every two years. Federal agencies will share Parkinson's data to improve coordination of research and services.
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Important Definitions
The bill defines "Parkinson's" to include Parkinson's disease and other neurodegenerative Parkinsonisms such as multiple system atrophy, Lewy body disease, corticobasal degeneration, progressive supranuclear palsy and Parkinson's-related dementia (Sec. 2(a)).
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Effective Date
The National Parkinson's Project and the Advisory Council will cease to be effective at the end of calendar year 2035 (Sec. 2(h)).
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, Edu-
cation, Labor, and Pensions
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-
1
tives of the United States of America in Congress assembled,
2
SECTION 1. SHORT TITLE.
3
This Act may be cited as the ‘‘National Plan to End
4
Parkinson’s Act’’.
5
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•S 1064 IS
SEC. 2. NATIONAL PARKINSON’S PROJECT.
1
(a) DEFINITION OF PARKINSON’S.—In this section,
2
the term ‘‘Parkinson’s’’ means—
3
(1) Parkinson’s disease; and
4
(2) other neurodegenerative Parkinsonisms, in-
5
cluding, but not limited to, multiple system atrophy,
6
Lewy body disease, corticobasal degeneration, pro-
7
gressive supranuclear palsy, and Parkinson’s-related
8
dementia.
9
(b) ESTABLISHMENT.—The Secretary of Health and
10
Human Services (in this section referred to as the ‘‘Sec-
11
retary’’) shall carry out a national project to prevent and
12
cure Parkinson’s, ameliorate its symptoms, and slow or
13
stop its progression, to be known as the National Parkin-
14
son’s Project (referred to in this section as the ‘‘Project’’).
15
(c) ACTIVITIES CARRIED OUT THROUGH PROJECT.—
16
In carrying out the Project, the Secretary shall—
17
(1) create, maintain, and periodically update an
18
integrated national plan to prevent and cure Parkin-
19
son’s, ameliorate its symptoms, and slow or stop its
20
progression;
21
(2) carry out the annual assessment under sub-
22
section (d);
23
(3) provide information (including an estimate
24
of the level of Federal investment necessary to pre-
25
vent and cure Parkinson’s, ameliorate its symptoms,
26
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•S 1064 IS
and slow or stop its progression), and coordination
1
of Parkinson’s research and services, across all Fed-
2
eral agencies;
3
(4) encourage the development of safe and ef-
4
fective treatments, strategies, and other approaches
5
to prevent, halt, or slow the course of Parkinson’s or
6
to enhance functioning and improve quality of life;
7
(5) promote the—
8
(A) early diagnosis of Parkinson’s; and
9
(B) coordination of the care and treatment
10
of individuals with Parkinson’s;
11
(6) review the impact of Parkinson’s on the
12
physical, mental, and social health of those living
13
with Parkinson’s and their care partners;
14
(7) coordinate with international bodies, to the
15
degree possible, to integrate and inform the global
16
mission to prevent and cure Parkinson’s, ameliorate
17
its symptoms, and slow or stop its progression; and
18
(8) carry out other such activities as the Sec-
19
retary deems appropriate.
20
(d) ANNUAL
ASSESSMENT.—Not later than 24
21
months after the date of enactment of this Act, and annu-
22
ally thereafter, the Secretary shall carry out an assess-
23
ment of the Nation’s progress in preparing for and re-
24
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•S 1064 IS
sponding to the escalating burden of Parkinson’s, includ-
1
ing—
2
(1) the formulation of recommendations for pri-
3
ority actions based on the assessment;
4
(2) a description of the steps that have been or
5
should be taken to implement the recommendations;
6
and
7
(3) such other items as the Secretary deems ap-
8
propriate.
9
(e) ADVISORY COUNCIL.—
10
(1) IN GENERAL.—The Secretary shall establish
11
and maintain an Advisory Council on Parkinson’s
12
Research, Care, and Services (referred to in this sec-
13
tion as the ‘‘Advisory Council’’).
14
(2) MEMBERSHIP.—
15
(A) FEDERAL
MEMBERS.—The Advisory
16
Council shall be comprised of diverse and inclu-
17
sive representatives from—
18
(i) the Centers for Disease Control
19
and Prevention;
20
(ii) the Administration on Community
21
Living;
22
(iii) the Centers for Medicare & Med-
23
icaid Services;
24
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•S 1064 IS
(iv) the Office of the Director of the
1
National Institutes of Health;
2
(v) the National Institute of Neuro-
3
logical Disorders and Stroke;
4
(vi) the National Institute of Environ-
5
mental Health Sciences;
6
(vii) the Department of Veterans Af-
7
fairs;
8
(viii) the Food and Drug Administra-
9
tion;
10
(ix) the Department of Defense;
11
(x)
the
Environmental
Protection
12
Agency;
13
(xi) the Office of Minority Health;
14
(xii) the Indian Health Service; and
15
(xiii) other relevant Federal depart-
16
ments and agencies as determined by the
17
Secretary.
18
(B) NON-FEDERAL
MEMBERS.—In addi-
19
tion to the members listed in subparagraph (A),
20
the Advisory Council shall include 10 expert
21
members from outside the Federal Government,
22
to be appointed by the Secretary, which mem-
23
bers shall include—
24
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•S 1064 IS
(i) 2 Parkinson’s patient advocates, at
1
least 1 of whom is living with young-onset
2
Parkinson’s;
3
(ii) 1 Parkinson’s family caregiver;
4
(iii) 1 health care provider;
5
(iv) 2 biomedical researchers with
6
Parkinson’s-related
expertise
in
basic,
7
translational, clinical, or drug development
8
science;
9
(v) 1 movement disorder specialist
10
who treats Parkinson’s patients;
11
(vi) 1 dementia specialist who treats
12
Parkinson’s patients; and
13
(vii) 2 representatives from nonprofit
14
organizations that have demonstrated ex-
15
perience in Parkinson’s research or Par-
16
kinson’s patient care and other services.
17
(3) MEETINGS.—
18
(A) QUARTERLY
MEETINGS.—The Advi-
19
sory Council shall meet at least once each quar-
20
ter.
21
(B) BIANNUAL RESEARCH MEETING.—Not
22
later than 24 months after the date of enact-
23
ment of this Act, and every 2 years thereafter,
24
the Advisory Council shall convene a meeting of
25
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•S 1064 IS
Federal and non-Federal organizations to dis-
1
cuss Parkinson’s research.
2
(C) OPEN
MEETINGS.—The meetings of
3
the Advisory Council shall be open to the pub-
4
lic.
5
(4) ADVICE.—The Advisory Council shall advise
6
the Secretary on Parkinson’s-related issues.
7
(5) BIANNUAL
REPORT.—Not later than 18
8
months after the date of enactment of this Act, and
9
every 2 years thereafter, the Advisory Council shall
10
provide to the Secretary and Congress a report con-
11
taining—
12
(A) an evaluation of all federally funded ef-
13
forts in Parkinson’s research, prevention, clin-
14
ical care, and institutional-, home-, and commu-
15
nity-based programs and the outcomes of such
16
efforts;
17
(B) recommendations for priority actions
18
to expand, eliminate, coordinate, refocus, or
19
condense Federal programs based on each pro-
20
gram’s performance, mission, and purpose;
21
(C) recommendations to—
22
(i) reduce the financial impact of Par-
23
kinson’s on—
24
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•S 1064 IS
(I) the Medicare program and
1
other federally funded programs; and
2
(II) families living with Parkin-
3
son’s;
4
(ii) improve health outcomes and
5
quality of life;
6
(iii) prevent Parkinson’s; and
7
(iv) research the association between
8
environmental triggers and Parkinson’s to
9
help reduce exposure to potential triggers;
10
and
11
(D) an evaluation of the implementation,
12
including outcomes, of the national plan under
13
subsection (c)(1).
14
(6) TERMINATION.—The Advisory Council shall
15
terminate at the end of calendar year 2035.
16
(f) DATA SHARING.—Agencies both within the De-
17
partment of Health and Human Services and outside of
18
the Department that have data relating to Parkinson’s
19
shall share such data with the Secretary of Health and
20
Human Services, or the Secretary’s designee, consistent
21
with the statutory obligations regrading disclosure of in-
22
formation for that department or agency, to enable the
23
Secretary, or the Secretary’s designee, to complete the re-
24
port described in subsection (g).
25
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•S 1064 IS
(g) BIANNUAL REPORT.—The Secretary shall submit
1
to the Congress—
2
(1) a Biannual report that includes an evalua-
3
tion of all federally funded efforts in Parkinson’s re-
4
search, prevention, diagnosis, treatment, clinical
5
care, and institutional-, home-, and community-
6
based programs and the outcomes of such efforts;
7
(2) an evaluation of all such programs based on
8
performance, mission, and purpose;
9
(3) recommendations for—
10
(A) priority actions based on the evalua-
11
tion conducted by the Secretary and the Advi-
12
sory Council to—
13
(i) reduce the financial impact of Par-
14
kinson’s on—
15
(I) the Medicare program and
16
other federally funded programs; and
17
(II) families living with Parkin-
18
son’s disease;
19
(ii) improve health outcomes and
20
quality of life;
21
(iii) prevent Parkinson’s; and
22
(iv) research the association between
23
environmental triggers and Parkinson’s to
24
help reduce exposure to potential triggers;
25
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•S 1064 IS
(B) priority actions to improve all federally
1
funded efforts in Parkinson’s research, preven-
2
tion, diagnosis, treatment, clinical care, and in-
3
stitutional-, home-, and community-based pro-
4
grams; and
5
(C) implementation steps to address pri-
6
ority actions described in subparagraphs (A)
7
and (B); and
8
(4) an up-to-date version of the national plan
9
under subsection (c)(1).
10
(h) SUNSET.—The section shall cease to be effective
11
at the end of calendar year 2035.
12
Æ
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