National Plan to End Parkinson's Act
This bill requires the Department of Health and Human Services (HHS) to carry out a project to prevent and cure Parkinson's disease (a progressive brain disorder that causes unintended or uncontrollable movements) and related conditions.
Among other components of the project, HHS must (1) implement and periodically update a national plan to coordinate and guide efforts to prevent and cure the disease; (2) improve diagnosis, treatment, and care of those with the disease; and (3) address health and other disparities related to the disease. HHS must also conduct annual assessments on the preparation for and response to the increased burden of Parkinson's disease.
In addition, the bill establishes a council, comprised of federal and nonfederal stakeholders, to advise HHS on and make recommendations concerning the prevention and cure of Parkinson's disease.
The bill's provisions terminate at the end of calendar year 2035.
[Congressional Bills 117th Congress]
[From the U.S. Government Publishing Office]
[H.R. 8585 Introduced in House (IH)]
<DOC>
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) introduced
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 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) Parkinsonisms, including 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, 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;
(2) carry out the annual assessment under subsection (d);
(3) evaluate all Federal programs related to Parkinson's,
including budget requests and approvals;
(4) provide information (including an estimate of the level
of Federal investment necessary to prevent and cure
Parkinson's), and coordination of Parkinson'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 higher 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 Parkinson'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, diversity,
equity, and inclusion associated with Parkinson's; and
(10) coordinate with international bodies to integrate and
inform the global mission to prevent and cure Parkinson's.
(d) Annual Assessment.--Not later than 18 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 Aging;
(iii) the Centers for Medicare & Medicaid
Services;
(iv) the Indian Health Service;
(v) the Office of the Director of the
National Institutes of Health;
(vi) the National Institute of Neurological
Disorders and Stroke;
(vii) the National Institute of
Environmental Health Sciences;
(viii) the National Institute on Aging;
(ix) the National Science Foundation;
(x) the Department of Veterans Affairs;
(xi) the Food and Drug Administration;
(xii) the Department of Defense;
(xiii) the Environmental Protection Agency;
(xiv) the Office of Minority Health; and
(xv) other relevant agencies as determined
by the Secretary.
(B) Non-federal members.--In addition to the
members listed in subparagraph (A), the Advisory
Council shall include 17 expert members from outside
the Federal Government, to be appointed by the
Secretary, which members 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
Parkinson'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 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) Annual research meeting.--The Advisory Council
shall convene an annual 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) Annual report.--Not later than 15 months after the date
of enactment of this Act and annually 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;
(iii) prevent Parkinson's; and
(iv) eliminate exposure to environmental
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 directly 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 Secretary, the head of that department or agency shall
furnish that information to the Secretary.
(g) Annual Report.--The Secretary shall submit to the Congress--
(1) an annual 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;
(iii) prevent Parkinson's; and
(iv) eliminate exposure to environmental
triggers of Parkinson's;
(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.
<all>
Introduced in House
Introduced in House
Referred to the House Committee on Energy and Commerce.
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