II
118th CONGRESS
1st Session
S. 1064
IN THE SENATE OF THE UNITED STATES
March 29, 2023
Mrs. Capito (for herself, Mr. Murphy, Mr. Marshall, Ms. Smith, Mr. Scott of Florida, and Mrs. Gillibrand) introduced the following bill; which was read twice and referred to the Committee on Health, Education, Labor, and Pensions
A BILL
To direct the Secretary of Health and Human Services to carry out a national project to prevent and cure Parkinson's, to be known as the National Parkinson's Project, and for other purposes.
Short title
This Act may be cited as the National Plan to End Parkinson’s Act
.
National Parkinson’s Project
Definition of Parkinson’s
In this section, the term Parkinson’s means—
Parkinson’s disease; and
other neurodegenerative Parkinsonisms, including, but not limited to, multiple system atrophy, Lewy body disease, corticobasal degeneration, progressive supranuclear palsy, and Parkinson’s-related dementia.
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
).
Activities carried out through Project
In carrying out the Project, the Secretary shall—
create, maintain, and periodically update an integrated national plan to prevent and cure Parkinson’s, ameliorate its symptoms, and slow or stop its progression;
carry out the annual assessment under subsection (d);
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;
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;
promote the—
early diagnosis of Parkinson’s; and
coordination of the care and treatment of individuals with Parkinson’s;
review the impact of Parkinson’s on the physical, mental, and social health of those living with Parkinson’s and their care partners;
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
carry out other such activities as the Secretary deems appropriate.
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—
the formulation of recommendations for priority actions based on the assessment;
a description of the steps that have been or should be taken to implement the recommendations; and
such other items as the Secretary deems appropriate.
Advisory Council
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
).
Membership
Federal members
The Advisory Council shall be comprised of diverse and inclusive representatives from—
the Centers for Disease Control and Prevention;
the Administration on Community Living;
the Centers for Medicare & Medicaid Services;
the Office of the Director of the National Institutes of Health;
the National Institute of Neurological Disorders and Stroke;
the National Institute of Environmental Health Sciences;
the Department of Veterans Affairs;
the Food and Drug Administration;
the Department of Defense;
the Environmental Protection Agency;
the Office of Minority Health;
the Indian Health Service; and
other relevant Federal departments and agencies as determined by the Secretary.
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—
2 Parkinson’s patient advocates, at least 1 of whom is living with young-onset Parkinson’s;
1 Parkinson’s family caregiver;
1 health care provider;
2 biomedical researchers with Parkinson’s-related expertise in basic, translational, clinical, or drug development science;
1 movement disorder specialist who treats Parkinson’s patients;
1 dementia specialist who treats Parkinson’s patients; and
2 representatives from nonprofit organizations that have demonstrated experience in Parkinson’s research or Parkinson’s patient care and other services.
Meetings
Quarterly meetings
The Advisory Council shall meet at least once each quarter.
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.
Open meetings
The meetings of the Advisory Council shall be open to the public.
Advice
The Advisory Council shall advise the Secretary on Parkinson’s-related issues.
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—
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;
recommendations for priority actions to expand, eliminate, coordinate, refocus, or condense Federal programs based on each program’s performance, mission, and purpose;
recommendations to—
reduce the financial impact of Parkinson’s on—
the Medicare program and other federally funded programs; and
families living with Parkinson’s;
improve health outcomes and quality of life;
prevent Parkinson’s; and
research the association between environmental triggers and Parkinson’s to help reduce exposure to potential triggers; and
an evaluation of the implementation, including outcomes, of the national plan under subsection (c)(1).
Termination
The Advisory Council shall terminate at the end of calendar year 2035.
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).
Biannual report
The Secretary shall submit to the Congress—
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;
an evaluation of all such programs based on performance, mission, and purpose;
recommendations for—
priority actions based on the evaluation conducted by the Secretary and the Advisory Council to—
reduce the financial impact of Parkinson’s on—
the Medicare program and other federally funded programs; and
families living with Parkinson’s disease;
improve health outcomes and quality of life;
prevent Parkinson’s; and
research the association between environmental triggers and Parkinson’s to help reduce exposure to potential triggers;
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
implementation steps to address priority actions described in subparagraphs (A) and (B); and
an up-to-date version of the national plan under subsection (c)(1).
Sunset
The section shall cease to be effective at the end of calendar year 2035.