42 U.S. Code § 11225 - The National Alzheimer’s Project

§ 11225.
The National Alzheimer’s Project
(a) Definition of Alzheimer’s

In this Act, the term “Alzheimer’s” means Alzheimer’s disease and related dementias.

(b) Establishment

There is established in the Office of the Secretary of Health and Human Services the National Alzheimer’s Project (referred to in this Act as the “Project”).

(c) Purpose of the ProjectThe Secretary of Health and Human Services, or the Secretary’s designee, shall—
(1)
be responsible for the creation and maintenance of an integrated national plan to overcome Alzheimer’s;
(2)
provide information and coordination of Alzheimer’s research and services across all Federal agencies;
(3)
accelerate the development of treatments that would prevent, halt, or reverse the course of Alzheimer’s;
(4) improve the—
(A)
early diagnosis of Alzheimer’s disease; and
(B)
coordination of the care and treatment of citizens with Alzheimer’s;
(5)
ensure the inclusion of ethnic and racial populations at higher risk for Alzheimer’s or least likely to receive care, in clinical, research, and service efforts with the purpose of decreasing health disparities in Alzheimer’s; and
(6)
coordinate with international bodies to integrate and inform the fight against Alzheimer’s globally.
(d) Duties of the Secretary
(1) In generalThe Secretary of Health and Human Services, or the Secretary’s designee, shall—
(A)
oversee the creation and updating of the national plan described in paragraph (2); and
(B)
use discretionary authority to evaluate all Federal programs around Alzheimer’s, including budget requests and approvals.
(2) National plan

The Secretary of Health and Human Services, or the Secretary’s designee, shall carry out an annual assessment of the Nation’s progress in preparing for the escalating burden of Alzheimer’s, including both implementation steps and recommendations for priority actions based on the assessment.

(e) Advisory Council
(1) In general

There is established an Advisory Council on Alzheimer’s Research, Care, and Services (referred to in this Act as the “Advisory Council”).

(2) Membership
(A) Federal membersThe Advisory Council shall be comprised of the following experts:
(i)
A designee of the Centers for Disease Control and Prevention.
(ii)
A designee of the Administration on Aging.
(iii)
A designee of the Centers for Medicare & Medicaid Services.
(iv)
A designee of the Indian Health Service.
(v)
A designee of the Office of the Director of the National Institutes of Health.
(vi)
The Surgeon General.
(vii)
A designee of the National Science Foundation.
(viii)
A designee of the Department of Veterans Affairs.
(ix)
A designee of the Food and Drug Administration.
(x)
A designee of the Agency for Healthcare Research and Quality.
(B) Non-Federal membersIn addition to the members outlined in subparagraph (A), the Advisory Council shall include 12 expert members from outside the Federal Government, which shall include—
(i)
2 Alzheimer’s patient advocates;
(ii)
2 Alzheimer’s caregivers;
(iii)
2 health care providers;
(iv)
2 representatives of State health departments;
(v)
2 researchers with Alzheimer’s-related expertise in basic, translational, clinical, or drug development science; and
(vi)
2 voluntary health association representatives, including a national Alzheimer’s disease organization that has demonstrated experience in research, care, and patient services, and a State-based advocacy organization that provides services to families and professionals, including information and referral, support groups, care consultation, education, and safety services.
(3) Meetings

The Advisory Council shall meet quarterly and such meetings shall be open to the public.

(4) Advice

The Advisory Council shall advise the Secretary of Health and Human Services, or the Secretary’s designee.

(5) Annual reportThe Advisory Council shall provide to the Secretary of Health and Human Services, or the Secretary’s designee and Congress—
(A)
an initial evaluation of all federally funded efforts in Alzheimer’s research, clinical care, and institutional-, home-, and community-based programs and their outcomes;
(B)
initial recommendations for priority actions to expand, eliminate, coordinate, or condense programs based on the program’s performance, mission, and purpose;
(C) initial recommendations to—
(i) reduce the financial impact of Alzheimer’s on—
(I)
Medicare and other federally funded programs; and
(II)
families living with Alzheimer’s disease; and
(ii)
improve health outcomes; and
(D)
annually thereafter, an evaluation of the implementation, including outcomes, of the recommendations, including priorities if necessary, through an updated national plan under subsection (d)(2).
(6) Termination

The Advisory Council shall terminate on December 31, 2025.

(f) Data sharing

Agencies both within the Department of Health and Human Services and outside of the Department that have data relating to Alzheimer’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 reportThe Secretary of Health and Human Services, or the Secretary’s designee, shall submit to Congress—
(1)
an annual report that includes an evaluation of all federally funded efforts in Alzheimer’s research, clinical care, and institutional-, home-, and community-based programs and their outcomes;
(2)
an evaluation of all federally funded programs based on program performance, mission, and purpose related to Alzheimer’s disease;
(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 Alzheimer’s on—
(I)
Medicare and other federally funded programs; and
(II)
families living with Alzheimer’s disease; and
(ii)
improve health outcomes;
(B)
implementation steps; and
(C)
priority actions to improve the prevention, diagnosis, treatment, care, institutional-, home-, and community-based programs of Alzheimer’s disease for individuals with Alzheimer’s disease and their caregivers; and
(4)
an annually updated national plan.
(h) Sunset

The Project shall expire on December 31, 2025.

References in Text

This Act, referred to in subsecs. (a), (b), and (e)(1), is Pub. L. 111–375, Jan. 4, 2011, 124 Stat. 4100, known as the National Alzheimer’s Project Act, which enacted this subchapter and provisions set out as a note under section 11201 of this title. For complete classification of this Act to the Code, see Short Title of 2010 Amendment note set out under section 11201 of this title and Tables.

Codification

Section was enacted as part of the National Alzheimer’s Project Act, and not as part of the Alzheimer’s Disease and Related Dementias Research Act of 1992 which comprises this chapter.

Annual Budget Estimate

Pub. L. 113–235, div. G, title II, § 230, Dec. 16, 2014, 128 Stat. 2492, provided that:

“Hereafter, for each fiscal year through fiscal year 2025, the Director of the National Institutes of Health shall prepare and submit directly to the President for review and transmittal to Congress, after reasonable opportunity for comment, but without change, by the Secretary of Health and Human Services and the Advisory Council on Alzheimer’s Research, Care, and Services, an annual budget estimate (including an estimate of the number and type of personnel needs for the Institutes) for the initiatives of the National Institutes of Health pursuant to the National Alzheimer’s Plan, as required under section 2(d)(2) of Public Law 111–375 [42 U.S.C. 11225(d)(2)].”

 

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