42 U.S.C. § 280n: National Parkinson’s Project

Summary

Creates a National Parkinson’s Project to prevent, diagnose, treat, and cure Parkinson’s. Parkinson’s here means Parkinson’s disease and similar brain disorders (like multiple system atrophy, corticobasal degeneration, progressive supranuclear palsy, and Parkinson’s-related dementia). The Project must make and update a single national plan that covers prevention, diagnosis, treatment, cures, symptom relief, and slowing disease progression. It must coordinate research and services across federal agencies, share how much the federal government spends (and, if possible, how much more is needed), encourage new safe treatments, improve early diagnosis and care coordination, study the effects on patients and caregivers, work with international partners, and try to avoid repeating existing research. The Secretary must do an assessment of the nation’s progress not later than 24 months after July 2, 2024 and every year after that, including priority recommendations and steps planned or done to carry them out. The Secretary must create an Advisory Council to advise on research, care, and services. The Council will include federal agency representatives (for example CDC, ACL, CMS, NIH, AHRQ, VA, FDA, NSF, DOD, EPA, Office of Minority Health, Indian Health Service, and the Surgeon General) and 10 non‑federal experts from affected or underrepresented communities. The non‑federal members must include 2 patient advocates (one with young‑onset Parkinson’s), 1 family caregiver, 1 health care provider, 2 biomedical researchers, 1 movement disorder specialist, 1 dementia specialist, and 2 nonprofit representatives. The Council must meet at least quarterly for the first 2 years, hold an annual public research meeting within 24 months after July 2, 2024 and each year after, and provide an annual public report to the Secretary and Congress starting 18 months after July 2, 2024 with lists of federal efforts, outcomes, and prioritized recommendations. Federal agencies must share Parkinson’s information as allowed by law. The Council and the Project end at the close of calendar year 2035, when the section also stops being effective.

Title 42, §280n

The Public Health and Welfare, Source: USLM XML via OLRC

(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 July 2, 2024, 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)

(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 July 2, 2024, 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 July 2, 2024, 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 [42 U.S.C. 1395 et seq.] or the Medicaid program under title XIX of such Act [42 U.S.C. 1396 et seq.];

(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.

Notes & Related Subsidiaries

Editorial Notes

References in Text

The Social Security Act, referred to in subsec. (e)(4)(C)(iv), is act Aug. 14, 1935, ch. 531, 49 Stat. 620. Titles XVIII and XIX of the Act are classified generally to subchapters XVIII (§ 1395 et seq.) and XIX (§ 1396 et seq.), respectively, of chapter 7 of this title. For complete classification of this Act to the Code, see section 1305 of this title and Tables.

§280n National Parkinson’s Project

Summary

Title 42, §280n

Notes & Related Subsidiaries

Editorial Notes

References in Text

Citations & Metadata