[Congressional Bills 118th Congress]
[From the U.S. Government Publishing Office]
[H.R. 2365 Engrossed in House (EH)]
<DOC>
118th CONGRESS
1st Session
H. R. 2365
_______________________________________________________________________
AN ACT
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.
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 ``Dr. Emmanuel Bilirakis and Honorable
Jennifer Wexton National Plan to End Parkinson's Act''.
SEC. 2. NATIONAL PARKINSON'S PROJECT.
Title III of the Public Health Service Act (42 U.S.C. 241 et seq.)
is amended by adding at the end:
``PART W--PARKINSON'S AND RELATED DISORDERS
``SEC. 399OO. NATIONAL PARKINSON'S PROJECT.
``(a) Definition of Parkinson's.--In this section, the term
`Parkinson's' means--
``(1) Parkinson's disease; and
``(2) all other neurodegenerative Parkinsonisms, including
multiple system atrophy, corticobasal degeneration, progressive
supranuclear palsy, and Parkinson's-related dementia.
``(b) Establishment.--The Secretary shall carry out a national
project, to be known as the National Parkinson's Project (referred to
in this section as the `Project'), to prevent, diagnose, treat, and
cure Parkinson's.
``(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, diagnose, treat, and cure
Parkinson's, ameliorate symptoms, and slow or stop progression;
``(2) carry out the annual assessment under subsection (d);
``(3) provide information, including--
``(A) an estimate of the level of current Federal
investment in preventing, diagnosing, treating, and
curing Parkinson's, ameliorating symptoms, and slowing
or stopping progression; and
``(B) if applicable, an estimate of the investment
necessary to prevent, diagnose, treat, and cure
Parkinson's, ameliorate symptoms, and slow or stop
progression;
``(4) coordinate research and services across all Federal
agencies related to Parkinson's;
``(5) encourage the development of safe and effective
treatments, strategies, and other approaches to prevent,
diagnose, treat, and cure Parkinson's, ameliorate symptoms, and
slow or stop progression;
``(6) improve the--
``(A) early diagnosis of Parkinson's; and
``(B) coordination of the care and treatment of
individuals with Parkinson's;
``(7) review the impact of Parkinson's on the physical,
mental, and social health of individuals living with
Parkinson's and their caregivers and families;
``(8) coordinate with international bodies, to the extent
possible, to integrate and inform the mission to prevent,
diagnose, treat, and cure Parkinson's, ameliorate symptoms, and
slow or stop progression globally; and
``(9) to the extent practicable, collaborate with other
entities to prevent duplication of existing research activities
for related disorders.
``(d) Annual Assessment.--Not later than 24 months after the date
of enactment of this section, 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) recommendations for priority actions based on the
assessment;
``(2) a description of any steps that are planned or have
already been taken to implement such recommendations, including
whether such recommendations can be implemented under existing
law; and
``(3) such other items as the Secretary determines
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') to advise the Secretary on Parkinson's-related
issues.
``(2) Membership.--
``(A) Federal members.--The Advisory Council shall
be comprised of experts, to be appointed by the
Secretary, who collectively are from various
backgrounds and perspectives, including at least one
member from each of--
``(i) the Centers for Disease Control and
Prevention;
``(ii) the Administration on Community
Living;
``(iii) the Centers for Medicare & Medicaid
Services;
``(iv) the National Institutes of Health;
``(v) the Agency for Healthcare Research
and Quality;
``(vi) the Department of Veterans Affairs;
``(vii) the Food and Drug Administration;
``(viii) the National Science Foundation;
``(ix) the Department of Defense;
``(x) the Environmental Protection Agency;
``(xi) the Office of Minority Health;
``(xii) the Indian Health Service;
``(xiii) the Office of the Surgeon General
of the Public Health Service; and
``(xiv) 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, to be
appointed by the Secretary, who shall include
representatives of minority communities, communities
disproportionately affected by Parkinson's, and
communities underrepresented in Parkinson's research,
who shall each be from outside the Federal Government,
and who 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-related research or Parkinson's-
related patient care and other services.
``(C) Representation.--The Secretary shall ensure
that the members of the Advisory Council are
collectively representative of agencies, professions,
individuals, and entities concerned with, or affected
by, activities under this section.
``(3) Meetings.--
``(A) Frequency.--The Advisory Council shall meet--
``(i) at least once each quarter during the
2-year period beginning on the date on which
the Advisory Council is established; and
``(ii) at the Secretary's discretion after
such period.
``(B) Annual research meeting.--Not later than 24
months after the date of enactment of this section, and
every year thereafter, the Advisory Council shall
convene a meeting of Federal and non-Federal
organizations to discuss Parkinson's research.
``(C) Open meetings.--The meetings under
subparagraphs (A) and (B) shall be open to the public.
``(4) Annual report.--Not later than 18 months after the
date of enactment of this section, and every year thereafter,
the Advisory Council shall provide to the Secretary and
Congress a report containing--
``(A) a list 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;
``(B) recommendations for priority actions to
expand, eliminate, coordinate, refocus, streamline, or
condense Federal programs based on each program's
performance, mission, scope, and purpose;
``(C) recommendations to--
``(i) reduce the financial impact of
Parkinson's on families living with
Parkinson's;
``(ii) improve health outcomes for, and the
quality of life of, individuals living with
Parkinson's;
``(iii) prevent Parkinson's, ameliorate
symptoms, and slow or stop progression;
``(iv) improve the quality of care provided
to beneficiaries with Parkinson's who receive
coverage through a federally-funded health care
program, such as the Medicare program under
title XVIII of the Social Security Act or the
Medicaid program under title XIX of such Act;
``(v) research the association between
environmental triggers and Parkinson's to help
reduce exposure to potential triggers; and
``(vi) research and better understand the
underlying factors contributing to Parkinson's;
``(D) priority actions to improve all federally-
funded efforts in Parkinson's research, prevention,
diagnosis, treatment, clinical care, and institutional-
, home-, and community-based programs;
``(E) an evaluation of the implementation,
including outcomes, of the national plan under
subsection (c)(1); and
``(F) implementation steps to address the
recommendations and priority actions under
subparagraphs (B), (C), and (D), based in part on the
evaluation under subparagraph (E).
``(5) Termination.--The Advisory Council shall terminate at
the end of calendar year 2035.
``(f) Information Sharing.--Each Federal department and agency that
has information relating to Parkinson's shall share such information
with the Secretary consistent with the statutory obligations of such
department or agency regarding disclosure of information, as necessary
to enable the Secretary to complete a report under subsection (e)(4).
``(g) Sunset.--The section shall cease to be effective at the end
of calendar year 2035.''.
Passed the House of Representatives December 14, 2023.
Attest:
Clerk.
118th CONGRESS
1st Session
H. R. 2365
_______________________________________________________________________
AN ACT
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.