[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.