[House Report 118-313]
[From the U.S. Government Publishing Office]


118th Congress }                                          { REPORT 
                        HOUSE OF REPRESENTATIVES
 1st Session   }                                          { 118-313

======================================================================
 
      DR. EMMANUEL BILIRAKIS NATIONAL PLAN TO END PARKINSON'S ACT

                                _______
                                

 December 12, 2023.--Committed to the Committee of the Whole House on 
            the State of the Union and ordered to be printed

                                _______
                                

Mrs. Rodgers of Washington, from the Committee on Energy and Commerce, 
                        submitted the following

                              R E P O R T

                        [To accompany H.R. 2365]

    The Committee on Energy and Commerce, to whom was referred 
the bill (H.R. 2365) 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, having considered the same, 
reports favorably thereon with amendments and recommends that 
the bill as amended do pass.

                                CONTENTS

                                                                   Page
Purpose and Summary..............................................     4
Background and Need for Legislation..............................     4
Committee Action.................................................     5
Committee Votes..................................................     5
Oversight Findings and Recommendations...........................     7
New Budget Authority, Entitlement Authority, and Tax Expenditures     7
Congressional Budget Office Estimate.............................     7
Federal Mandates Statement.......................................     7
Statement of General Performance Goals and Objectives............     7
Duplication of Federal Programs..................................     7
Related Committee and Subcommittee Hearings......................     7
Committee Cost Estimate..........................................     8
Earmark, Limited Tax Benefits, and Limited Tariff Benefits.......     8
Advisory Committee Statement.....................................     8
Applicability to Legislative Branch..............................     8
Section-by-Section Analysis of the Legislation...................     8
Changes in Existing Law Made by the Bill, as Reported............     9

    The amendments are as follows:
  Strike all after the enacting clause and insert the 
following:

SECTION 1. SHORT TITLE.

  This Act may be cited as the ``Dr. Emmanuel Bilirakis 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 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.''.

    Amend the title so as to read:
    A bill 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.

                          Purpose and Summary

    H.R. 2365 requires the Department of Health and Human 
Services (HHS) to carry out a national project to prevent, 
diagnose, treat, and cure Parkinson's disease and other 
neurodegenerative Parkinsonisms and related diseases, to be 
known as the National Parkinson's Project. In carrying out the 
project, the Secretary must provide an annual assessment of the 
nation's progress in preparing for and responding to the 
increased burden of Parkinson's; provide information, 
facilitate collaboration, and encourage development of 
innovative approaches to prevent, diagnose, treat, and cure 
Parkinson's and related diseases; and coordinate and avoid 
duplication of related research activities across involved 
entities; among other things. The bill also establishes an 
Advisory Council, comprised of federal and nonfederal 
stakeholders, to advise HHS on Parkinson's-related issues, 
including providing an annual report outlining current 
activities, recommendations, and priority actions to improve 
efforts related to the prevention, diagnosis, treatment, and 
curing of Parkinson's and related diseases. The provisions of 
the bill terminate at the end of calendar year 2035.

                  Background and Need for Legislation

    It is estimated that Parkinson's disease affects nearly 1 
million people in the United States and more than 6 million 
people worldwide. It is the second most common neurological 
disease globally with nearly 90,000 new cases diagnosed every 
year. The cause of Parkinson's remains largely unknown. While 
there is no cure, treatment options vary and include 
medications, lifestyle adjustments, and surgery.
    The estimated total cost of Parkinson's disease to 
individuals, families, and the United States government is 
estimated to be about $51.9 billion every year, with $25.4 
billion attributable to direct medical costs (e.g., 
hospitalizations, medication) and $26.5 billion in non-medical 
costs like missed work, lost wages, early forced retirement, 
and family caregiver time. According to a recent study, the 
federal government spends nearly $25 billion annually in caring 
for people with Parkinson's. About $2 billion of that is 
shouldered by Social Security, and the remaining $23 billion is 
in Medicare costs.
    H.R. 2365 would establish a National Plan to streamline and 
coordinate efforts to prevent, diagnose, treat, and cure 
Parkinson's and encourage development of innovative approaches 
for treatments and cures.

                            Committee Action

    On June 14, 2023, the Subcommittee on Health held a hearing 
on H.R. 2365. The title of the hearing was ``Examining 
Proposals that Provide Access to Care for Patients and Support 
Research for Rare Diseases.'' The Subcommittee received 
testimony from:
           Dr. Elizabeth Cherot, MD, MBA, Senior Vice 
        President and Chief Medical Health Officer, March of 
        Dimes;
           Dr. Alexis A. Thompson, MD, MPH, Chief of 
        Division of Hematology, Elias Schwartz MD Endowed Chair 
        in Hematology, Children's Hospital of Philadelphia, 
        Professor of Pediatrics, University of Pennsylvania 
        Perelman School of Medicine;
           Dr. Meredithe McNamara, MD, MS, FAAP, 
        Assistant Professor, Yale School of Medicine;
           Dr. Miriam Grossman, MD, Child, Adolescent, 
        and Adult Psychiatrist;
           Mr. George Manahan, Parkinson's Advocate and 
        Patient; and,
           Mr. Kevin O'Connor, Assistant to the General 
        President for Government Affairs and Political Action, 
        International Association of Fire Fighters.
    On July 13, 2023, the Subcommittee on Health met in open 
markup session and forwarded H.R. 2365, without amendment, to 
the full Committee by a voice vote. On December 5 and 6, 2023, 
the full Committee on Energy and Commerce met in open markup 
session and ordered H.R. 2365, as amended, favorably reported 
to the House by a record vote of 47 yeas and 0 nays.

                            Committee Votes

    Clause 3(b) of rule XIII requires the Committee to list the 
record votes on the motion to report legislation and amendments 
thereto. The following reflects the record votes taken during 
the Committee consideration:


                 Oversight Findings and Recommendations

    Pursuant to clause 2(b)(1) of rule X and clause 3(c)(1) of 
rule XIII, the Committee held a hearing and made findings that 
are reflected in this report.

   New Budget Authority, Entitlement Authority, and Tax Expenditures

    Pursuant to clause 3(c)(2) of rule XIII, the Committee 
finds that H.R. 2365 would result in no new or increased budget 
authority, entitlement authority, or tax expenditures or 
revenues.

                  Congressional Budget Office Estimate

    Pursuant to clause 3(c)(3) of rule XIII, at the time this 
report was filed, the cost estimate prepared by the Director of 
the Congressional Budget Office pursuant to section 402 of the 
Congressional Budget Act of 1974 was not available.

                       Federal Mandates Statement

    The Committee adopts as its own the estimate of Federal 
mandates prepared by the Director of the Congressional Budget 
Office pursuant to section 423 of the Unfunded Mandates Reform 
Act.

         Statement of General Performance Goals and Objectives

    Pursuant to clause 3(c)(4) of rule XIII, the general 
performance goal or objective of this legislation is to 
prevent, diagnose, treat, and cure Parkinson's disease and 
other neurodegenerative Parkinsonisms and related diseases.

                    Duplication of Federal Programs

    Pursuant to clause 3(c)(5) of rule XIII, no provision of 
H.R. 2365 is known to be duplicative of another Federal 
program, including any program that was included in a report to 
Congress pursuant to section 21 of Public Law 111-139 or the 
most recent Catalog of Federal Domestic Assistance.

              Related Committee and Subcommittee Hearings

    Pursuant to clause 3(c)(6) of rule XIII, the following 
related hearing was used to develop or consider H.R. 2365:
           On June 14, 2023, the Subcommittee on Health 
        held a hearing on H.R. 2365. The title of the hearing 
        was ``Examining Proposals that Provide Access to Care 
        for Patients and Support Research for Rare Diseases.'' 
        The Subcommittee received testimony from:
                   Dr. Elizabeth Cherot, MD, MBA, 
                Senior Vice President and Chief Medical Health 
                Officer, March of Dimes;
                   Dr. Alexis A. Thompson, MD, MPH, 
                Chief of Division of Hematology, Elias Schwartz 
                MD Endowed Chair in Hematology, Children's 
                Hospital of Philadelphia, Professor of 
                Pediatrics, University of Pennsylvania Perelman 
                School of Medicine;
                   Dr. Meredithe McNamara, MD, MS, 
                FAAP, Assistant Professor, Yale School of 
                Medicine;
                   Dr. Miriam Grossman, MD, Child, 
                Adolescent, and Adult Psychiatrist;
                   Mr. George Manahan, Parkinson's 
                Advocate and Patient; and,
                   Mr. Kevin O'Connor, Assistant to 
                the General President for Government Affairs 
                and Political Action, International Association 
                of Fire Fighters.

                        Committee Cost Estimate

    Pursuant to clause 3(d)(1) of rule XIII, the Committee 
adopts as its own the cost estimate prepared by the Director of 
the Congressional Budget Office pursuant to section 402 of the 
Congressional Budget Act of 1974. At the time this report was 
filed, the estimate was not available.

       Earmark, Limited Tax Benefits, and Limited Tariff Benefits

    Pursuant to clause 9(e), 9(f), and 9(g) of rule XXI, the 
Committee finds that H.R. 2365 contains no earmarks, limited 
tax benefits, or limited tariff benefits.

                      Advisory Committee Statement

    Pursuant to section 5(b) of the Federal Advisory Committee 
Act (FACA), the Committee finds that new subsection 399OO(e) of 
the Public Health Service Act, as provided in section 2 of H.R. 
2365, does establish or authorize the establishment of an 
advisory committee as defined in section 3(2) of FACA. The 
Committee does not find that the functions of the proposed 
advisory committee are being or could be performed by one or 
more agencies or by an advisory committee already in existence, 
or by enlarging the mandate of an existing advisory committee.

                  Applicability to Legislative Branch

    The Committee finds that the legislation does not relate to 
the terms and conditions of employment or access to public 
services or accommodations within the meaning of section 
102(b)(3) of the Congressional Accountability Act.

             Section-by-Section Analysis of the Legislation


Section 1. Short title

    Section 1 provides that the Act may be cited as the ``Dr. 
Emmanuel Bilirakis National Plan to End Parkinson's Act''.

Section 2. National Parkinson's Project

    Section 2 would add a new section (``sec. 399OO. National 
Parkinson's Project'') to the Public Health Service Act 
directing the Secretary of the Department of Health and Human 
Services (HHS) to carry out the National Parkinson's Project.
    Section 2 would define the term ``Parkinson's'' to mean (1) 
Parkinson's disease; and (2) all other neurodegenerative 
Parkinsonisms, including multiple system atrophy, corticobasal 
degeneration, progressive supranuclear palsy, and Parkinson's-
related dementia.''
    New subsection (c) would direct the Secretary to (1) 
create, maintain, and update an integrated national plan to 
prevent, diagnose, treat, and cure Parkinson's, ameliorate 
symptoms, and slow or stop progression; (2) carry out an annual 
assessment; (3) provide specified information; (4) coordinate 
Parkinson's related research and services across all Federal 
agencies; (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 both the early diagnosis 
of Parkinson's and 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) to the extent possible--coordinate with 
international bodies 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.
    New subsection (d) describes the annual assessment that the 
Secretary must carry out within 24 months of the date of 
enactment and annually thereafter. This shall include 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, and (2) a description 
of steps planned or already taken to implement such 
recommendations--including whether such recommendation can be 
implemented under existing law.
    The Committee anticipates that the Secretary will provide 
to the Committee on Energy and Commerce a copy of the 
assessment--both electronically and in paper format--promptly 
upon completion of the assessment and subsequent assessments.
    New subsection (e) would direct the Secretary to establish 
and maintain an Advisory Council on Parkinson's Research, Care, 
and Services to advise the Secretary on Parkinson's-related 
issues. The Advisory Council shall be comprised of federal and 
non-federal stakeholders, and shall convene meetings as 
specified. The Advisory Council shall provide regular reports, 
as specified, including current activities, recommendations, 
priority actions, and implementation steps to improve efforts 
related to the prevention, diagnosis, treatment, and curing of 
Parkinson's and related diseases. The Advisory Council shall 
terminate at the end of calendar year 2035.
    New subsection (f) would direct each Federal department and 
agency that has information relating to Parkinson's to 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 the required annual report to Congress.
    New subsection (g) provides that this new section of the 
Public Health Service Act, regarding the ``National Parkinson's 
Project'' shall cease to be effective at the end of calendar 
year 2035.

         Changes in Existing Law Made by the Bill, as Reported

  In compliance with clause 3(e) of rule XIII of the Rules of 
the House of Representatives, changes in existing law made by 
the bill, as reported, are shown as follows (new matter is 
printed in italics and existing law in which no change is 
proposed is shown in roman):

                       PUBLIC HEALTH SERVICE ACT




           *       *       *       *       *       *       *
TITLE III--GENERAL POWERS AND DUTIES OF PUBLIC HEALTH SERVICE

           *       *       *       *       *       *       *



               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 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.S6602

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