[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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