II 117th CONGRESS 2d Session S. 4851 IN THE SENATE OF THE UNITED STATES September 14, 2022 Mrs. Capito (for herself, Mr. Murphy , Ms. Smith , and Mr. Marshall ) introduced the following bill; which was read twice and referred to the Committee on Health, Education, Labor, and Pensions A BILL To direct the Secretary of Health and Human Services to carry out a national project to prevent and cure Parkinson’s, to be known as the National Parkinson’s Project, and for other purposes.

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