National Plan to End Parkinson’s Act

Subjects: Health


<html><body><pre>[Congressional Bills 118th Congress]
[From the U.S. Government Publishing Office]
[S. 1064 Introduced in Senate (IS)]

&lt;DOC&gt;






118th CONGRESS
  1st Session
                                S. 1064

  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

                             March 29, 2023

  Mrs. Capito (for herself, Mr. Murphy, Mr. Marshall, Ms. Smith, Mr. 
 Scott of Florida, and Mrs. Gillibrand) 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) other neurodegenerative Parkinsonisms, including, but 
        not limited to, 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, ameliorate its 
symptoms, and slow or stop its progression, 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, ameliorate its 
        symptoms, and slow or stop its progression;
            (2) carry out the annual assessment under subsection (d);
            (3) provide information (including an estimate of the level 
        of Federal investment necessary to prevent and cure 
        Parkinson's, ameliorate its symptoms, and slow or stop its 
        progression), and coordination of Parkinson's research and 
        services, across all Federal agencies;
            (4) encourage the development of safe and effective 
        treatments, strategies, and other approaches to prevent, halt, 
        or slow the course of Parkinson's or to enhance functioning and 
        improve quality of life;
            (5) promote the--
                    (A) early diagnosis of Parkinson's; and
                    (B) coordination of the care and treatment of 
                individuals with Parkinson's;
            (6) review the impact of Parkinson's on the physical, 
        mental, and social health of those living with Parkinson's and 
        their care partners;
            (7) coordinate with international bodies, to the degree 
        possible, to integrate and inform the global mission to prevent 
        and cure Parkinson's, ameliorate its symptoms, and slow or stop 
        its progression; and
            (8) carry out other such activities as the Secretary deems 
        appropriate.
    (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 Community 
                        Living;
                            (iii) the Centers for Medicare & Medicaid 
                        Services;
                            (iv) the Office of the Director of the 
                        National Institutes of Health;
                            (v) the National Institute of Neurological 
                        Disorders and Stroke;
                            (vi) the National Institute of 
                        Environmental Health Sciences;
                            (vii) the Department of Veterans Affairs;
                            (viii) the Food and Drug Administration;
                            (ix) the Department of Defense;
                            (x) the Environmental Protection Agency;
                            (xi) the Office of Minority Health;
                            (xii) the Indian Health Service; and
                            (xiii) 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 from outside 
                the Federal Government, to be appointed by the 
                Secretary, which members 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 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) Biannual research meeting.--Not later than 24 
                months after the date of enactment of this Act, and 
                every 2 years thereafter, the Advisory Council shall 
                convene a 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) Biannual report.--Not later than 18 months after the 
        date of enactment of this Act, and every 2 years 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 and quality of 
                        life;
                            (iii) prevent Parkinson's; and
                            (iv) research the association between 
                        environmental triggers and Parkinson's to help 
                        reduce exposure to potential triggers; 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, consistent with 
the statutory obligations regrading disclosure of information for that 
department or agency, to enable the Secretary, or the Secretary's 
designee, to complete the report described in subsection (g).
    (g) Biannual Report.--The Secretary shall submit to the Congress--
            (1) a Biannual 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 and quality of 
                        life;
                            (iii) prevent Parkinson's; and
                            (iv) research the association between 
                        environmental triggers and Parkinson's to help 
                        reduce exposure to potential triggers;
                    (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.
                                 &lt;all&gt;
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