Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson’s Act

Bill: 118-hr-2365
Sponsor: full_name: Rep. Bilirakis, Gus M. [R-FL-12]
Introduced: 2023-03-29
Policy area: Health
Subjects: Advisory bodies

Congressional oversight

Government information and archives

Health promotion and preventive care

Neurological disorders
Latest action: action_date: 2024-07-02
text: Became Public Law No: 118-66.

Summaries:
action_date: 2023-03-29
action_desc: Introduced in House
text: <p><strong>National Plan to End Parkinson's Act</strong></p> <p>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.</p> <p>Among other components of the project, HHS must (1) implement and periodically update a national plan to coordinate and guide efforts to prevent, slow the progression of, and cure the disease; and (2) improve diagnosis, treatment, and care of those with the disease. HHS must also annually assess the preparations for and response to the increased burden of Parkinson's disease.</p> <p>In addition, the bill establishes a council, comprised of federal and nonfederal stakeholders, to advise HHS on and make recommendations concerning the prevention and treatment of Parkinson's disease.</p> <p>The provisions of the bill terminate at the end of calendar year 2035.</p>

action_date: 2023-12-12
action_desc: Reported to House
text: <p><strong>Dr. Emmanuel Bilirakis National Plan to End Parkinson's Act</strong></p> <p>This bill requires the Department of Health and Human Services (HHS) to carry out a project to address Parkinson's disease (a progressive brain disorder that causes unintended or uncontrollable movements) and related conditions.</p> <p>Among other components of the project, HHS must (1) implement and periodically update a national plan to coordinate and guide efforts to prevent, diagnose, treat, and cure the disease; and (2) improve the care of those with the disease. HHS must also annually assess the preparations for and response to the increased burden of Parkinson's disease.</p> <p>In addition, the bill establishes a council, comprised of federal and nonfederal stakeholders, to advise HHS on and make recommendations concerning the prevention and treatment of Parkinson's disease.</p> <p>The provisions of the bill terminate at the end of calendar year 2035.</p>

action_date: 2023-12-14
action_desc: Passed House
text: <p><strong>Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson's Act</strong></p> <p>This bill requires the Department of Health and Human Services (HHS) to carry out a project to address Parkinson's disease (a progressive brain disorder that causes unintended or uncontrollable movements) and related conditions.</p> <p>Among other components of the project, HHS must (1) implement and periodically update a national plan to coordinate and guide efforts to prevent, diagnose, treat, and cure the disease; and (2) improve the care of those with the disease. HHS must also annually assess the preparations for and response to the increased burden of Parkinson's disease.</p> <p>In addition, the bill establishes a council, comprised of federal and nonfederal stakeholders, to advise HHS on and make recommendations concerning the prevention and treatment of Parkinson's disease.</p> <p>The provisions of the bill terminate at the end of calendar year 2035.</p>

action_date: 2024-05-23
action_desc: Passed Senate
text: <p><strong>Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson's Act</strong></p><p>This bill requires the Department of Health and Human Services (HHS) to carry out a project to address Parkinson's disease (a progressive brain disorder that causes unintended or uncontrollable movements) and related conditions.</p><p>Among other components of the project, HHS must (1) implement and periodically update a national plan to coordinate and guide efforts to prevent, diagnose, treat, and cure the disease; and (2) improve the care of those with the disease. HHS must also annually assess the preparations for and response to the increased burden of Parkinson's disease.</p><p>In addition, the bill establishes a council, comprised of federal and nonfederal stakeholders, to advise HHS on and make recommendations concerning the prevention and treatment of Parkinson's disease.</p><p>The provisions of the bill terminate at the end of calendar year 2035.</p>

action_date: 2024-07-02
action_desc: Public Law
text: <p><strong>Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson's Act</strong></p><p>This act requires the Department of Health and Human Services (HHS) to carry out a project to address Parkinson's disease (a progressive brain disorder that causes unintended or uncontrollable movements) and related conditions.</p><p>Among other components of the project, HHS must (1) implement and periodically update a national plan to coordinate and guide efforts to prevent, diagnose, treat, and cure the disease; and (2) improve the care of those with the disease. HHS must also annually assess the preparations for and response to the increased burden of Parkinson's disease.</p><p>In addition, the act establishes a council, comprised of federal and nonfederal stakeholders, to advise HHS on and make recommendations concerning the prevention and treatment of Parkinson's disease.</p><p>The provisions of the act terminate at the end of calendar year 2035.</p>

tv_txt: I 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 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.

1. Short title This Act may be cited as the Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson’s Act . 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: W Parkinson’s and Related Disorders 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.

tv_txt: IIB 118th CONGRESS 1st Session H. R. 2365 IN THE SENATE OF THE UNITED STATES December 14, 2023 Received; read twice and referred to the Committee on Health, Education, Labor, and Pensions 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.

1. Short title This Act may be cited as the Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson’s Act . 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: W Parkinson’s and Related Disorders 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. Kevin F. McCumber, Clerk.

tv_txt: I 118th CONGRESS 1st Session H. R. 2365 IN THE HOUSE OF REPRESENTATIVES 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.

1. Short title This Act may be cited as the Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson’s Act . 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: W Parkinson’s and Related Disorders 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. Cheryl L. Johnson, Clerk.

tv_txt: IB Union Calendar No. 253 118th CONGRESS 1st Session H. R. 2365 [Report No. 118–313] IN THE HOUSE OF REPRESENTATIVES March 29, 2023 Mr. Bilirakis (for himself, Mr. Tonko , Mrs. Harshbarger , Ms. Schakowsky , Mr. Fitzpatrick , Ms. Kuster , Mrs. Kim of California , Ms. Barragán , Mr. Valadao , and Mr. Higgins of New York ) introduced the following bill; which was referred to the Committee on Energy and Commerce December 12, 2023 Additional sponsors: Ms. Bonamici , Mrs. Trahan , Mr. Quigley , Mr. Carbajal , Mrs. Bice , Ms. Matsui , Mr. Norcross , Ms. Lois Frankel of Florida , Ms. Chu , Mr. Grijalva , Ms. Dean of Pennsylvania , Mr. Scott Franklin of Florida , Mr. Smith of Washington , Mr. Gomez , Mr. Swalwell , Mr. Pappas , Ms. Wexton , Mr. Bacon , Mr. Nadler , Mrs. Napolitano , Mr. Kim of New Jersey , Ms. Sewell , Mrs. Dingell , Mr. Evans , Mr. García of Illinois , Mr. Connolly , Ms. Norton , Mr. Morelle , Mrs. Cherfilus-McCormick , Mr. Correa , Mr. Kilmer , Ms. DelBene , Mr. Schneider , Ms. Porter , Mr. Smucker , Mr. McGovern , Ms. Mace , Mr. Mooney , Mr. Davis of North Carolina , Mr. Rutherford , Mr. Cárdenas , Ms. Titus , Mr. Mullin , Mr. Carey , Mr. Johnson of Georgia , Ms. Blunt Rochester , Mr. Van Drew , Mr. Fleischmann , Ms. Malliotakis , Mrs. Peltola , Ms. Wild , Mr. Burchett , Mr. Graves of Louisiana , Mr. Luetkemeyer , Mr. LaHood , Mr. Raskin , Mr. Panetta , Mr. Lynch , Mr. Edwards , Mr. Himes , Ms. Clarke of New York , Mr. Wilson of South Carolina , Mr. Dunn of Florida , Mrs. Houchin , Ms. Craig , Mr. Lieu , Mr. Peters , Mrs. Miller of West Virginia , Mr. Timmons , Mr. Neguse , Mr. Crenshaw , Mrs. Fletcher , Mr. Allred , Mr. Frost , Mr. Pascrell , Ms. Sherrill , Ms. Meng , Ms. Lee of Nevada , Mrs. Sykes , Mr. Costa , Mr. Turner , Mr. McGarvey , Mr. Austin Scott of Georgia , Ms. Hoyle of Oregon , Mr. Landsman , Ms. Tlaib , Mr. Stanton , Mr. Gottheimer , Mr. Sherman , Mr. Walberg , Mr. Ezell , Mr. Blumenauer , Ms. Lee of California , Mr. Kildee , Ms. Scanlon , Mr. Levin , Mr. Balderson , Ms. Caraveo , Ms. Salinas , Mr. Larsen of Washington , Mr. Magaziner , Mr. Trone , Mr. Cleaver , Ms. Brownley , Ms. Leger Fernandez , Mr. Veasey , Mr. Garamendi , Mr. Thompson of Pennsylvania , Mr. Jackson of North Carolina , Mr. LaTurner , Ms. Houlahan , Mr. Huizenga , Mr. Carl , Mr. Menendez , Mr. Mann , Mr. Moolenaar , Ms. Pettersen , Ms. McClellan , Ms. Perez , Mr. Crow , Ms. Davids of Kansas , Ms. Strickland , Ms. Stevens , Ms. Adams , Mr. Takano , Ms. Lofgren , Ms. Slotkin , Mr. Bean of Florida , Mr. Ciscomani , Mr. Castro of Texas , Ms. Manning , Mr. Finstad , Mrs. Spartz , Ms. Hageman , Mr. Kelly of Pennsylvania , Mr. Lawler , Mr. Garbarino , Mr. Pence , Mr. LaMalfa , Mr. Kustoff , Mr. Meeks , Ms. Moore of Wisconsin , Mr. Scott of Virginia , Mr. Krishnamoorthi , Mr. Bowman , Ms. Omar , Ms. De La Cruz , Ms. Stansbury , Ms. Escobar , Ms. Crockett , Ms. Tokuda , Mr. Johnson of Ohio , Mr. Casten , Ms. Salazar , Mrs. Steel , Mr. Mrvan , Mr. Langworthy , Mr. Kean of New Jersey , Mr. Rouzer , Mr. Pocan , Mr. McCaul , Mrs. Cammack , and Mr. Ryan December 12, 2023 Reported with amendments, committed to the Committee of the Whole House on the State of the Union, and ordered to be printed Strike out all after the enacting clause and insert the part printed in italic For text of introduced bill, see copy of bill as introduced on March 29, 2023 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.

1. Short title This Act may be cited as the Dr. Emmanuel Bilirakis National Plan to End Parkinson’s Act . 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: W Parkinson’s and Related Disorders 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. .

December 12, 2023 Reported with amendments, committed to the Committee of the Whole House on the State of the Union, and ordered to be printed

tv_txt: I 118th CONGRESS 1st Session H. R. 2365 IN THE HOUSE OF REPRESENTATIVES March 29, 2023 Mr. Bilirakis (for himself, Mr. Tonko , Mrs. Harshbarger , Ms. Schakowsky , Mr. Fitzpatrick , Ms. Kuster , Mrs. Kim of California , Ms. Barragán , Mr. Valadao , and Mr. Higgins of New York ) introduced the following bill; which was referred to the Committee on Energy and Commerce 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.

1. Short title This Act may be cited as the National Plan to End Parkinson’s Act . 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.