```

[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.
```