Title: National Plan to End Parkinson’s Act
Policy area: Health

Summary:
National Plan to End Parkinson's Act
This bill requires the Department of Health and Human Services (HHS) to carry out a project to prevent and cure Parkinson's disease (a progressive brain disorder that causes unintended or uncontrollable movements) and related conditions.
Among other components of the project, HHS must (1) implement and periodically update a national plan to coordinate and guide efforts to prevent and cure the disease; (2) improve diagnosis, treatment, and care of those with the disease; and (3) address health and other disparities related to the disease. HHS must also conduct annual assessments on the preparation for and response to the increased burden of Parkinson's disease.
In addition, the bill establishes a council, comprised of federal and nonfederal stakeholders, to advise HHS on and make recommendations concerning the prevention and cure of Parkinson's disease.
The bill's provisions terminate at the end of calendar year 2035.

[Congressional Bills 117th Congress]
[From the U.S. Government Publishing Office]
[S. 4851 Introduced in Senate (IS)]

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117th CONGRESS
  2d Session
                                S. 4851

  To direct the Secretary of Health and Human Services to carry out a 
 national project to prevent and cure Parkinson's, to be known as the 
         National Parkinson's Project, and for other purposes.


_______________________________________________________________________


                   IN THE SENATE OF THE UNITED STATES

                           September 14, 2022

  Mrs. Capito (for herself, Mr. Murphy, Ms. Smith, and Mr. Marshall) 
introduced the following bill; which was read twice and referred to the 
          Committee on Health, Education, Labor, and Pensions

_______________________________________________________________________

                                 A BILL


 
  To direct the Secretary of Health and Human Services to carry out a 
 national project to prevent 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 ``National Plan to End Parkinson's 
Act''.

SEC. 2. NATIONAL PARKINSON'S PROJECT.

    (a) Definition of Parkinson's.--In this section, the term 
``Parkinson's'' means--
            (1) Parkinson's disease; and
            (2) Parkinsonisms, including multiple system atrophy, Lewy 
        body disease, corticobasal degeneration, progressive 
        supranuclear palsy, and Parkinson's-related dementia.
    (b) Establishment.--The Secretary of Health and Human Services (in 
this section referred to as the ``Secretary'') shall carry out a 
national project to prevent and cure Parkinson's, to be known as the 
National Parkinson's Project (referred to in this section as the 
``Project'').
    (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 and cure Parkinson's;
            (2) carry out the annual assessment under subsection (d);
            (3) evaluate all Federal programs related to Parkinson's, 
        including budget requests and approvals;
            (4) provide information (including an estimate of the level 
        of Federal investment necessary to prevent and cure 
        Parkinson's), and coordination of Parkinson's research and 
        services, across all Federal agencies;
            (5) accelerate the development of treatments and other 
        approaches to prevent, halt, or reverse the course of, 
        Parkinson's;
            (6) improve the--
                    (A) early diagnosis of Parkinson's; and
                    (B) coordination of the care and treatment of 
                individuals with Parkinson's;
            (7) ensure the inclusion of populations at higher risk for 
        Parkinson's--or least likely to receive a diagnosis or care 
        with respect to Parkinson's--in clinical research, and 
        implement service efforts to decrease health disparities with 
        respect to Parkinson's;
            (8) review the impact of Parkinson's on the physical, 
        mental, and social health of those living with Parkinson's and 
        their care partners;
            (9) review social determinants of health, diversity, 
        equity, and inclusion associated with Parkinson's; and
            (10) coordinate with international bodies to integrate and 
        inform the global mission to prevent and cure Parkinson's.
    (d) Annual Assessment.--Not later than 24 months after the date of 
enactment of this Act, 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) the formulation of recommendations for priority actions 
        based on the assessment;
            (2) a description of the steps that have been or should be 
        taken to implement the recommendations; and
            (3) such other items as the Secretary deems 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'').
            (2) Membership.--
                    (A) Federal members.--The Advisory Council shall be 
                comprised of diverse and inclusive representatives 
                from--
                            (i) the Centers for Disease Control and 
                        Prevention;
                            (ii) the Administration on Aging;
                            (iii) the Centers for Medicare & Medicaid 
                        Services;
                            (iv) the Indian Health Service;
                            (v) the Office of the Director of the 
                        National Institutes of Health;
                            (vi) the National Institute of Neurological 
                        Disorders and Stroke;
                            (vii) the National Institute of 
                        Environmental Health Sciences;
                            (viii) the National Institute on Aging;
                            (ix) the National Science Foundation;
                            (x) the Department of Veterans Affairs;
                            (xi) the Food and Drug Administration;
                            (xii) the Department of Defense;
                            (xiii) the Environmental Protection Agency;
                            (xiv) the Office of Minority Health; and
                            (xv) 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 17 expert members from outside 
                the Federal Government, to be appointed by the 
                Secretary, which members shall include--
                            (i) 4 Parkinson's patient advocates, one of 
                        whom is living with young-onset Parkinson's;
                            (ii) 2 Parkinson's family caregivers;
                            (iii) 2 health care providers;
                            (iv) 2 representatives of State health 
                        departments;
                            (v) 2 biomedical researchers with 
                        Parkinson's-related expertise in basic, 
                        translational, clinical, or drug development 
                        science;
                            (vi) 1 movement disorder specialist who 
                        treats Parkinson's patients;
                            (vii) 1 dementia specialist who treats 
                        Parkinson's patients; and
                            (viii) 3 representatives, one from each of 
                        3 nonprofit organizations that have 
                        demonstrated experience in Parkinson's research 
                        or Parkinson's patient care and other services.
            (3) Meetings.--
                    (A) Quarterly meetings.--The Advisory Council shall 
                meet at least once each quarter.
                    (B) Annual research meeting.--The Advisory Council 
                shall convene an annual meeting of Federal and non-
                Federal organizations to discuss Parkinson's research.
                    (C) Open meetings.--The meetings of the Advisory 
                Council shall be open to the public.
            (4) Advice.--The Advisory Council shall advise the 
        Secretary on Parkinson's-related issues.
            (5) Annual report.--Not later than 18 months after the date 
        of enactment of this Act and annually thereafter, the Advisory 
        Council shall provide to the Secretary and Congress a report 
        containing--
                    (A) an evaluation of all federally funded efforts 
                in Parkinson's research, prevention, 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, or condense Federal 
                programs based on each program's performance, mission, 
                and purpose;
                    (C) recommendations to--
                            (i) reduce the financial impact of 
                        Parkinson's on--
                                    (I) the Medicare program and other 
                                federally funded programs; and
                                    (II) families living with 
                                Parkinson's;
                            (ii) improve health outcomes;
                            (iii) prevent Parkinson's; and
                            (iv) eliminate exposure to environmental 
                        triggers of Parkinson's; and
                    (D) an evaluation of the implementation, including 
                outcomes, of the national plan under subsection (c)(1).
            (6) Termination.--The Advisory Council shall terminate at 
        the end of calendar year 2035.
    (f) Data Sharing.--Agencies both within the Department of Health 
and Human Services and outside of the Department that have data 
relating to Parkinson's shall share such data with the Secretary of 
Health and Human Services, or the Secretary's designee, to enable the 
Secretary, or the Secretary's designee, to complete the report 
described in subsection (g).
    (g) Annual Report.--The Secretary shall submit to the Congress--
            (1) an annual report that includes an evaluation 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;
            (2) an evaluation of all such programs based on 
        performance, mission, and purpose;
            (3) recommendations for--
                    (A) priority actions based on the evaluation 
                conducted by the Secretary and the Advisory Council 
                to--
                            (i) reduce the financial impact of 
                        Parkinson's on--
                                    (I) the Medicare program and other 
                                federally funded programs; and
                                    (II) families living with 
                                Parkinson's disease;
                            (ii) improve health outcomes;
                            (iii) prevent Parkinson's; and
                            (iv) eliminate exposure to environmental 
                        triggers of Parkinson's;
                    (B) priority actions to improve all federally 
                funded efforts in Parkinson's research, prevention, 
                diagnosis, treatment, clinical care, and institutional-
                , home-, and community-based programs; and
                    (C) implementation steps to address priority 
                actions described in subparagraphs (A) and (B); and
            (4) an up-to-date version of the national plan under 
        subsection (c)(1).
    (h) Sunset.--The section shall cease to be effective at the end of 
calendar year 2035.
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