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

submitted 82 years ago by Pub. L. 118-66 to r/title-42-THE-PUBLIC-HEALTH-AND-WELFARE · 1,153 words · no verdicts yet

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The Secretary must run a national project to prevent, treat, and cure Parkinson's disease. This includes yearly progress assessments and an advisory council of federal and outside experts. Both the council and this section end in 2035.

(a) Definition of Parkinson's. In this section, "Parkinson's" means (1) Parkinson's disease, and (2) all other Parkinsonism-type brain diseases, including multiple system atrophy, corticobasal degeneration, progressive supranuclear palsy, and Parkinson's-related dementia. (b) Establishment. The Secretary must run a national project, the National Parkinson's Project, to prevent, diagnose, treat, and cure Parkinson's. (c) Activities carried out through Project. Running the Project, the Secretary must: (1) build and update an integrated national plan to prevent, diagnose, treat, and cure Parkinson's, ease symptoms, and slow or stop it getting worse; (2) do the annual assessment described in subsection (d); (3) provide information, including (A) an estimate of current federal spending on Parkinson's, and (B) if possible, an estimate of the spending needed; (4) coordinate Parkinson's-related research and services across all federal agencies; (5) encourage safe, effective new treatments and approaches; (6) improve (A) early diagnosis and (B) coordinated care and treatment; (7) study how Parkinson's affects the physical, mental, and social health of patients, caregivers, and families; (8) coordinate with international groups where possible; and (9) work with other groups, where practical, to avoid repeating existing research on related disorders. (d) Annual assessment. Starting no later than 24 months after July 2, 2024, and every year after, the Secretary must assess the nation's progress on Parkinson's, including (1) recommended priority actions; (2) a description of steps already taken or planned to carry out those recommendations, including whether they can happen under existing law; and (3) any other items the Secretary decides are appropriate. (e) Advisory Council. (1) In general — The Secretary must set up and run an Advisory Council on Parkinson's Research, Care, and Services to advise on Parkinson's issues. (2) Membership — (A) Federal members: the Council must include at least one expert appointed by the Secretary from each of 14 listed federal agencies, including the CDC, the Administration on Community Living, the Centers for Medicare & Medicaid Services, the National Institutes of Health, and others the Secretary picks. (B) Non-federal members: the Council must also include 10 outside expert members appointed by the Secretary, representing minority and underrepresented communities, made up of 2 patient advocates (at least 1 living with young-onset Parkinson's), 1 family caregiver, 1 health care provider, 2 biomedical researchers, 1 movement disorder specialist, 1 dementia specialist, and 2 representatives of nonprofits with Parkinson's research or patient care experience. (C) Representation — The Secretary must make sure Council members, together, represent the agencies, professions, and people affected by this section. (3) Meetings — (A) Frequency: the Council must meet at least once a quarter for its first 2 years, and after that at the Secretary's discretion. (B) Annual research meeting: within 24 months of July 2, 2024, and every year after, the Council must hold a meeting of federal and non-federal groups to discuss Parkinson's research. (C) Open meetings: all these meetings must be open to the public. (4) Annual report — Within 18 months of July 2, 2024, and every year after, the Council must give the Secretary and Congress a report listing (A) all federally funded Parkinson's efforts and their results; (B) recommended priority actions to expand, cut, coordinate, refocus, streamline, or condense federal programs based on their performance; (C) recommendations to reduce Parkinson's financial impact on families, improve health outcomes and quality of life, prevent Parkinson's and slow its progress, improve care quality under Medicare and Medicaid, research environmental triggers, and better understand what causes Parkinson's; (D) priority actions to improve all federally funded Parkinson's efforts; (E) an evaluation of how the national plan from subsection (c)(1) is working; and (F) steps to carry out the recommendations in (B), (C), and (D). (5) Termination — The Advisory Council ends at the close of 2035. (f) Information sharing. Every federal department or agency with Parkinson's-related information must share it with the Secretary, following its own rules on disclosing information, so the Secretary can complete the report required under subsection (e)(4). (g) Sunset. This section stops being in effect at the end of 2035.

the actual law source: uscode.house.gov ↗public domain

(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.

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)

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.

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.

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.

Source credit: (July 1, 1944, ch. 373, title III, § 399OO, as added Pub. L. 118–66, § 2, July 2, 2024, 138 Stat. 1443.)

history & why it existsrecord from the source credit

1944Enacted · Pub. L. 118-66 · 138 Stat. 1443

A history note hasn’t been published yet. The record shows enactment by Pub. L. 118-66 on 1944-07-01.

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