[Congressional Bills 118th Congress]
[From the U.S. Government Publishing Office]
[H.R. 2365 Enrolled Bill (ENR)]
H.R.2365
One Hundred Eighteenth Congress
of the
United States of America
AT THE SECOND SESSION
Begun and held at the City of Washington on Wednesday,
the third day of January, two thousand and twenty-four
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.''.
Speaker of the House of Representatives.
Vice President of the United States and
President of the Senate.