What’s Happened Since the Launch of the National Parkinson’s Project?
A Closer Look at Progress and Politics
In December 2022, Congress passed a bipartisan bill that established the National Parkinson’s Project—a bold, long-overdue initiative aimed at preventing, diagnosing, treating, and ultimately curing Parkinson’s disease. The legislation, inspired in part by the success of the National Alzheimer’s Project Act (NAPA), was welcomed with hope by the millions of Americans affected by Parkinson’s, as well as their families, caregivers, and advocates.
But more than two years later, one has to ask: what tangible steps have been taken since this landmark legislation passed? And how has the ever-shifting political landscape affected the implementation of this ambitious project?
Promising Words, But Where’s the Action?
The National Parkinson’s Project promised a coordinated, whole-of-government approach, including a federal advisory council to oversee and guide progress. This council was meant to bring together scientists, clinicians, government officials, and patient advocates to create a strategic plan with measurable outcomes.
Yet, as of mid-2025, public details about the execution of this plan remain surprisingly scarce. Has the advisory council been fully established? Have funding streams been secured and allocated appropriately? What measurable research milestones have been met, if any? While isolated advances in Parkinson’s research continue—especially in areas like genetic therapies and deep brain stimulation—there’s little visibility into how or whether these efforts are being unified under the National Parkinson’s Project umbrella.
The Political Pendulum and Its Effects on Science
It’s no secret that changes in political leadership can dramatically impact the direction and speed of public health initiatives. Since the project’s passage, shifts in congressional power and priorities have raised concerns about whether Parkinson’s remains a focus for lawmakers.
In times of divided government, or when fiscal austerity becomes a dominant theme, science and health funding often face cuts or delays. While Parkinson’s advocacy groups continue to lobby for progress, the question remains: is there enough political will to treat Parkinson’s like the national health crisis it truly is? Or has it, like so many health promises before it, been quietly sidelined in favor of more politically expedient issues?
Looking Forward: What Needs to Happen Now?
If the National Parkinson’s Project is to succeed, it requires more than words on paper. It demands transparency, consistent funding, accountability, and an unwavering commitment to cross-agency collaboration. Just as importantly, it needs continued advocacy to keep the pressure on elected officials, regardless of who holds power in Congress or the White House.
Parkinson’s doesn’t pause for politics. Neither should progress.
As concerned citizens, researchers, and families touched by this disease, we must keep asking: what’s next? What are the metrics of success? Who is responsible for ensuring this project fulfills its promise?
Until these questions are answered, the fight continues—not just against Parkinson’s, but against complacency.
Public Law 118-66
Statute at Large 138 Stat. 1443 - Public Law No. 118-66 (07/02/2024)
[118th Congress Public Law 66]
[From the U.S. Government Publishing Office]
[[Page 138 STAT. 1443]]
Public Law 118-66
118th Congress
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. <<NOTE: July 2, 2024 - [H.R. 2365]>>
Be it enacted by the Senate and House of Representatives of the
United States of America in Congress assembled, <<NOTE: Dr. Emmanuel
Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson's
Act.>>
SECTION 1. <<NOTE: 42 USC 201 note.>> 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. <<NOTE: 42 USC 280n.>> 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) <<NOTE: Updates. Plan.>> 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) <<NOTE: Estimate.>> 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;
[[Page 138 STAT. 1444]]
``(4) <<NOTE: Coordination.>> 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) <<NOTE: Review.>> 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) <<NOTE: Coordination.>> 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) <<NOTE: Deadline. Recommenda- tions.>> 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) <<NOTE: Establishment.>> 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) <<NOTE: Appointments.>> 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;
[[Page 138 STAT. 1445]]
``(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) <<NOTE: Time periods. Effective date.>>
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) <<NOTE: Deadline.>> 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) <<NOTE: Public information.>> 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) <<NOTE: List.>> 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) <<NOTE: Recommenda- tions.>> recommendations
for priority actions to expand, eliminate, coordinate,
refocus, streamline, or condense Federal programs based
on each program's performance, mission, scope, and
purpose;
[[Page 138 STAT. 1446]]
``(C) <<NOTE: Recommenda- tions.>> 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) <<NOTE: Evaluation.>> 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.''.
Approved July 2, 2024.
LEGISLATIVE HISTORY--H.R. 2365:
---------------------------------------------------------------------------
HOUSE REPORTS: No. 118-313 (Comm. on Energy and Commerce).
CONGRESSIONAL RECORD:
Vol. 169 (2023):
Dec. 13, 14, considered and passed
House.
Vol. 170 (2024):
May 23, considered and passed
Senate.
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