[Congressional Bills 118th Congress]
[From the U.S. Government Publishing Office]
[S. 1064 Introduced in Senate (IS)]
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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,
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.
Be it enacted by the Senate and House of Representatives 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''.
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) other neurodegenerative Parkinsonisms, including, but
not limited to, multiple system atrophy, Lewy body disease,
corticobasal degeneration, progressive supranuclear palsy, and
Parkinson's-related dementia.
(b) Establishment.--The Secretary of Health and Human Services (in
this section referred to as the ``Secretary'') shall carry out a
national project to prevent and cure Parkinson's, ameliorate its
symptoms, and slow or stop its progression, 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 Parkinson's, ameliorate its
symptoms, and slow or stop its progression;
(2) carry out the annual assessment under subsection (d);
(3) provide information (including an estimate of the level
of Federal investment necessary to prevent and cure
Parkinson's, ameliorate its symptoms, and slow or stop its
progression), and coordination of Parkinson's research and
services, across all Federal agencies;
(4) encourage the development of safe and effective
treatments, strategies, and other approaches to prevent, halt,
or slow the course of Parkinson's or to enhance functioning and
improve quality of life;
(5) promote the--
(A) early diagnosis of Parkinson's; and
(B) coordination of the care and treatment of
individuals with Parkinson's;
(6) review the impact of Parkinson's on the physical,
mental, and social health of those living with Parkinson's and
their care partners;
(7) coordinate with international bodies, to the degree
possible, to integrate and inform the global mission to prevent
and cure Parkinson's, ameliorate its symptoms, and slow or stop
its progression; and
(8) carry out other such activities as the Secretary deems
appropriate.
(d) Annual Assessment.--Not later than 24 months after the date of
enactment of this Act, and annually thereafter, the Secretary shall
carry out an assessment of the Nation's progress in preparing for and
responding to the escalating burden of Parkinson's, including--
(1) the formulation of recommendations for priority 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 appropriate.
(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 section as the ``Advisory Council'').
(2) Membership.--
(A) Federal members.--The Advisory Council shall be
comprised of diverse and inclusive representatives
from--
(i) the Centers for Disease Control and
Prevention;
(ii) the Administration on Community
Living;
(iii) the Centers for Medicare & Medicaid
Services;
(iv) the Office of the Director of the
National Institutes of Health;
(v) the National Institute of Neurological
Disorders and Stroke;
(vi) the National Institute of
Environmental Health Sciences;
(vii) the Department of Veterans Affairs;
(viii) the Food and Drug Administration;
(ix) the Department of Defense;
(x) the Environmental Protection Agency;
(xi) the Office of Minority Health;
(xii) the Indian Health Service; and
(xiii) other relevant Federal departments
and agencies as determined by the Secretary.
(B) Non-federal members.--In addition to the
members listed in subparagraph (A), the Advisory
Council shall include 10 expert members from outside
the Federal Government, to be appointed by the
Secretary, which members shall include--
(i) 2 Parkinson's patient advocates, at
least 1 of whom is living with young-onset
Parkinson's;
(ii) 1 Parkinson's family caregiver;
(iii) 1 health care provider;
(iv) 2 biomedical researchers with
Parkinson's-related expertise in basic,
translational, clinical, or drug development
science;
(v) 1 movement disorder specialist who
treats Parkinson's patients;
(vi) 1 dementia specialist who treats
Parkinson's patients; and
(vii) 2 representatives from nonprofit
organizations that have demonstrated experience
in Parkinson's research or Parkinson's patient
care and other services.
(3) Meetings.--
(A) Quarterly meetings.--The Advisory Council shall
meet at least once each quarter.
(B) Biannual research meeting.--Not later than 24
months after the date of enactment of this Act, and
every 2 years thereafter, the Advisory Council shall
convene a meeting 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 public.
(4) Advice.--The Advisory Council shall advise the
Secretary on Parkinson's-related issues.
(5) Biannual report.--Not later than 18 months after the
date of enactment of this Act, and every 2 years thereafter,
the Advisory Council shall provide to the Secretary and
Congress a report containing--
(A) an evaluation of all federally funded efforts
in Parkinson's research, prevention, clinical care, and
institutional-, home-, and community-based programs and
the outcomes of such efforts;
(B) recommendations for priority actions to expand,
eliminate, coordinate, refocus, or condense Federal
programs based on each program's performance, mission,
and purpose;
(C) recommendations to--
(i) reduce the financial impact of
Parkinson's on--
(I) the Medicare program and other
federally funded programs; and
(II) families living with
Parkinson's;
(ii) improve health outcomes and quality of
life;
(iii) prevent Parkinson's; and
(iv) research the association between
environmental triggers and Parkinson's to help
reduce exposure to potential triggers; 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.--Agencies both within the Department of Health
and Human Services and outside of the Department that have data
relating to Parkinson's shall share such data with the Secretary of
Health and Human Services, or the Secretary's designee, consistent with
the statutory obligations regrading disclosure of information for that
department or agency, to enable the Secretary, or the Secretary's
designee, to complete the report described in subsection (g).
(g) Biannual Report.--The Secretary shall submit to the Congress--
(1) a Biannual report that includes an evaluation of all
federally funded efforts in Parkinson's research, 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 evaluation
conducted by the Secretary and the Advisory Council
to--
(i) reduce the financial impact of
Parkinson's on--
(I) the Medicare program and other
federally funded programs; and
(II) families living with
Parkinson's disease;
(ii) improve health outcomes and quality of
life;
(iii) prevent Parkinson's; and
(iv) research the association between
environmental triggers and Parkinson's to help
reduce exposure to potential triggers;
(B) priority actions to improve all federally
funded efforts in Parkinson's research, prevention,
diagnosis, treatment, clinical care, and institutional-
, home-, and community-based programs; and
(C) implementation steps to address priority
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.
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