I
107TH CONGRESS
2D SESSION
H. R. 4606
To amend the Public Health Service Act to provide for Alzheimer’s disease
research and demonstration grants.
IN THE HOUSE OF REPRESENTATIVES
APRIL 25, 2002
Mr. MARKEY (for himself, Mr. DINGELL, and Mr. SMITH of New Jersey) in-
troduced the following bill; which was referred to the Committee on En-
ergy and Commerce
A BILL
To amend the Public Health Service Act to provide for
Alzheimer’s disease research and demonstration grants.
Be it enacted by the Senate and House of Representa-
tives of the United States of America in Congress assembled,
SECTION 1. SHORT TITLE.
This Act may be cited as the ‘‘Alzheimer’s Disease
Research, Prevention, and Care Act of 2002’’.
SEC. 2. FINDINGS.
Congress makes the following findings:
(1) Alzheimer’s disease is a disorder that de-
stroys cells in the brain. The disease is the leading
cause of dementia, a condition that involves gradual
memory loss, decline in the ability to perform rou-
tine tasks, disorientation, difficulty in learning, loss
of language skills, impairment of judgment, and per-
sonality changes. As the disease progresses, people
with Alzheimer’s disease become unable to care for
themselves. The loss of brain cells eventually leads
to the failure of other systems in the body.
(2) In the United States, 4,000,000 people have
Alzheimer’s disease and 19,000,000 people say that
they have a family member with the disease. By
2050, 14,000,000 people in the United States will
have Alzheimer’s disease unless science finds a way
to prevent or cure the disease.
(3) One in 10 people over the age of 65, and
nearly half of those over the age of 85 have Alz-
heimer’s disease. Younger people also get the dis-
ease.
(4) The Alzheimer’s disease process may begin
in the brain as many as 20 years before the symp-
toms of Alzheimer’s disease appear. A person will
live an average of 8 years and as many as 20 once
the symptoms of Alzheimer’s disease appear.
(5) The average lifetime cost of Alzheimer’s dis-
ease, per person, is $174,000. The total annual cost
of Alzheimer’s disease care in the United States
today is not less than $100,000,000,000.
(6) 
In 
2000, 
medicare 
alone 
spent
$31,900,000,000 for the care of individuals with
Alzheimer’s disease and this amount is projected to
increase to $49,300,000,000 in 2010.
(7) Forty-nine percent of medicare beneficiaries
who have Alzheimer’s disease also receive medicaid.
Of the total population dually eligible for medicare
and medicaid, 22 percent have Alzheimer’s disease.
(8) Seven in 10 people with Alzheimer’s disease
live at home. While almost 75 percent of home care
is provided by family and friends, the average an-
nual cost of paid care for people with Alzheimer’s
disease at home is $12,500.
(9) At least half of all nursing home residents
have Alzheimer’s disease or another dementia. The
average annual cost of Alzheimer’s disease nursing
home care is $42,000 but exceeds $70,000 in some
areas. Medicaid pays nearly half of the total nursing
home bill and helps 2 out of 3 residents pay for
their care. Medicaid expenditures for nursing home
care for people with Alzheimer’s disease are esti-
mated to increase from $18,200,000,000 in 2000 to
$33,000,000,000 in 2010.
(10) In fiscal year 2002, the Federal Govern-
ment will spend an estimated $585,000,000 on Alz-
heimer’s disease research, a modest investment when
compared with the annual $100,000,000,000 cost of
the disease. If science can find a way to delay the
onset of Alzheimer’s disease symptoms for even 5
years, our Nation will save at least $50,000,000,000
in annual health and long term care costs.
(11) Seventy percent of people with Alzheimer’s
disease live at home where families provide at least
75 percent of their care.
(12) A study commissioned by the United Hos-
pital Fund estimated that the annual value of this
informal care system is $196,000,000,000. Family
caregiving comes at enormous physical, emotional,
and financial sacrifice, putting the whole system at
risk.
(13) One in 8 Alzheimer’s disease caregivers be-
comes ill or injured as a direct result of caregiving.
One in 3 uses medication for problems related to
caregiving. Older caregivers are 3 times more likely
to become clinically depressed than others in their
age group.
(14) Elderly spouses strained by caregiving are
63 percent more likely to die during a given 4-year
period than other spouses their age.
(15) Three of 4 caregivers are women. One in
3 has children or grandchildren under the age of 18
living at home. Caregiving leaves them less time for
other family members and they are much more likely
to report family conflicts because of their caregiving
role.
(16) Most Alzheimer’s disease caregivers work
outside the home before beginning their caregiving
careers, but caregiving forces them to miss work, cut
back to part-time, take less demanding jobs, choose
early retirement, or give up work altogether. As a
result, in 2002, Alzheimer’s disease will cost Amer-
ican business an estimated $36,500,000,000 in lost
productivity, 
as 
well 
as 
an 
additional
$24,600,000,000 in business contributions to the
total cost of care.
SEC. 3. PURPOSE OF THE NATIONAL INSTITUTE ON AGING.
Section 443 of the Public Health Service Act (42
U.S.C. 285e) is amended by inserting ‘‘, Alzheimer’s dis-
ease and related disorders,’’ after ‘‘aging process’’.
SEC. 4. ALZHEIMER’S DISEASE PREVENTION INITIATIVE.
Section 444 of the Public Health Service Act (42
U.S.C. 285e–1) is amended—
(1) in subsection (d), by inserting ‘‘and train-
ing’’ after ‘‘conduct research’’; and
(2) by adding at the end the following:
‘‘(e) The Director of the Institute shall, in collabora-
tion with the directors of the other relevant institutes and
centers of the National Institutes of Health, and with vol-
unteer organizations and other stakeholders, undertake an
Alzheimer’s Disease Prevention Initiative to—
‘‘(1) accelerate the discovery of new risk and
protective factors for Alzheimer’s disease;
‘‘(2) rapidly identify candidate diagnostics,
therapies, or preventive interventions or agents for
clinical investigation and trials relating to Alz-
heimer’s disease;
‘‘(3) support or undertake such investigations
and trials; and
‘‘(4) implement effective prevention and treat-
ment strategies, including strategies to improve pa-
tient care and alleviate caregiver burdens relating to
Alzheimer’s disease.’’.
SEC. 5. ALZHEIMER’S DISEASE CLINICAL RESEARCH.
(a) CLINICAL RESEARCH.—Section 445F of the Pub-
lic Health Service Act (42 U.S.C. 285e–8) is amended to
read as follows:
‘‘SEC. 445F. ALZHEIMER’S DISEASE COOPERATIVE STUDY
GROUP.
‘‘(a) IN GENERAL.—The Director of the Institute,
pursuant to subsections (d) and (e) of section 444, shall
establish and support a national consortium for coopera-
tive clinical research regarding Alzheimer’s disease. Such
a consortium shall—
‘‘(1) investigate therapies, interventions, and
agents to detect, treat, slow the progression of, or
prevent Alzheimer’s disease;
‘‘(2) enhance the national infrastructure for the
conduct of clinical trials;
‘‘(3) develop and test novel approaches to the
design and analysis of such trials;
‘‘(4) facilitate the enrollment of, and expand
the range of, patients for such trials, including pa-
tients from diverse populations;
‘‘(5) develop improved diagnostics and means of
patient assessment for Alzheimer’s disease; and
‘‘(6) include, as determined appropriate by the
Director of the Institute, the Alzheimer’s Disease
Centers and Alzheimer’s Disease Research Centers
established under section 445.
‘‘(b) EARLY
DIAGNOSIS
AND
DETECTION
RE-
SEARCH.—
‘‘(1) IN GENERAL.—The Director of the Insti-
tute, in consultation with the directors of other rel-
evant institutes and centers of the National Insti-
tutes of Health, shall conduct, or make grants for
the conduct of, research related to the early detec-
tion and diagnosis of Alzheimer’s disease and of
mild cognitive impairment or other potential precur-
sors to Alzheimer’s disease.
‘‘(2) EVALUATION.—The research described in
paragraph (1) may include the evaluation of diag-
nostic tests and imaging techniques.
‘‘(c) VASCULAR DISEASE.—The Director of the Insti-
tute, in consultation with the directors of other relevant
institutes and centers of the National Institutes of Health,
shall, conduct or make grants for the conduct of, research
related to the relationship of vascular disease and Alz-
heimer’s disease, including clinical trials to determine
whether drugs developed to prevent cerebrovascular dis-
ease can prevent the onset or progression of Alzheimer’s
disease.
‘‘(d) NATIONAL ALZHEIMER’S COORDINATING CEN-
TER.—The Director of the Institute may establish a Na-
tional Alzheimer’s Coordinating Center to facilitate col-
laborative research among the Alzheimer’s Disease Cen-
ters and Alzheimer’s Disease Research Centers established
under section 445.’’.
(b) 
ALZHEIMER’S
DISEASE
CENTERS.—Section
445(a)(1) of the Public Health Service Act (42 U.S.C.
285e–2(a)(1)) is amended by inserting ‘‘, and outcome
measures and disease management’’ after ‘‘treatment
methods’’.
SEC. 6. RESEARCH ON ALZHEIMER’S DISEASE CAREGIVING.
Section 445C of the Public Health Service Act (42
U.S.C. 285e–5) is amended—
(1) by striking ‘‘SEC. 445C. (a)’’ and inserting
the following:
‘‘SEC. 445C. RESEARCH ON ALZHEIMER’S DISEASE SERV-
ICES AND CAREGIVING.
‘‘(a) SERVICES RESEARCH.—’’;
(2) by striking subsections (b), (c), and (e);
(3) by inserting after subsection (a) the fol-
lowing:
‘‘(b) INTERVENTIONS
RESEARCH.—The Director
shall, in collaboration with the directors of the other rel-
evant institutes and centers of the National Institutes of
Health, conduct, or make grants for the conduct of, clin-
ical, social, and behavioral research related to interven-
tions designed to help caregivers of patients with Alz-
heimer’s disease and related disorders.’’; and
(4) in subsection (d) by striking ‘‘(d) the Direc-
tor’’ and inserting ‘‘(c) MODEL CURRICULA
AND
TECHNIQUES.—The Director’’.
SEC. 7. AUTHORIZATION OF APPROPRIATIONS.
(a) IN GENERAL.—Section 445J of the Public Health
Service Act (42 U.S.C. 285e–11) is amended by striking
‘‘$500,000,000 for fiscal year 1994, and such sums as
may be necessary for each of the fiscal years 1995 and
1996.’’ and inserting ‘‘$1,500,000,000 for fiscal year
2003, and such sums as may be necessary for each of the
fiscal years 2004 through 2007.’’.
(b) AGING PROCESS REGARDING WOMEN.—Section
445H(b) of the Public Health Service Act (42 U.S.C.
285e–10(b)) is amended by striking ‘‘2003’’ and inserting
‘‘2007’’.
(c) CLINICAL RESEARCH AND TRAINING AWARDS.—
Section 445I(d) of the Public Health Service Act (42
U.S.C. 285e–10a(d)) is amended by striking ‘‘2005’’ and
inserting ‘‘2007’’.
SEC. 8. ALZHEIMER’S DISEASE DEMONSTRATION GRANTS.
Section 398B(e) of the Public Health Service Act (42
U.S.C. 280c–5(e)) is amended—
(1) by striking ‘‘and such’’ and inserting
‘‘such’’; and
(2) 
by 
inserting 
before 
the 
period 
‘‘,
$25,000,000 for fiscal year 2003, and such sums as
may be necessary for each of the fiscal years 2004
through 2007’’.
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