1.This Act may be cited as the
National Alzheimer's Project
Act
.
2.The National Alzheimer's Project
(a)Definition of Alzheimer'sIn this Act, the term
Alzheimer's
means Alzheimer's disease and related
dementias.
(b)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)The 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)
(1)The 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)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)
(1)There is established an Advisory Council on
Alzheimer's Research, Care, and Services (referred to in this Act as the
Advisory Council
).
(2)
(A)The 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)In 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)The Advisory Council shall meet quarterly
and such meetings shall be open to the public.
(4)The Advisory Council shall advise the
Secretary of Health and Human Services, or the Secretary's designee.
(5)The 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)The Advisory Council shall terminate on
December 31, 2025.
(f)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)The 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)The Project shall expire on December 31,
2025.
Speaker of the House of Representatives
Vice President of the United States and President of the
Senate