I 
108TH CONGRESS 
1ST SESSION H. R. 1138
To amend the Public Health Service Act to provide for Alzheimer’s disease 
research and demonstration grants. 
IN THE HOUSE OF REPRESENTATIVES 
MARCH 6, 2003
Mr. MARKEY (for himself and Mr. SMITH of New Jersey) introduced the 
following bill; which was referred to the Committee on Energy 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 2003’’. 
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.
(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 $19,000. 
(9) Nearly 60 percent of all nursing home resi-
dents have Alzheimer’s disease or another dementia. 
The average annual cost of Alzheimer’s disease nurs-
ing home care is nearly $64,000. Medicaid pays 
nearly half of the total nursing home bill and helps 
2 out of 3 residents pay for their care. Medicaid ex-
penditures for nursing home care for people with 
Alzheimer’s disease are estimated 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 spent an estimated $598,900,000 on Alz-
heimer’s disease research. If our Nation achieves its 
research goals (preventing the onset of Alzheimer’s 
disease in those at risk and treating and delaying 
progression of the disease in those who have symp-
toms), the projected number of cases of Alzheimer’s 
disease can be reduced by more than one-third by 
the middle of the century and the number of baby 
boomers with moderate to severe Alzheimer’s disease 
can be reduced by 60 percent. 
(11) A study commissioned by the United Hos-
pital Fund estimated that the annual value of this 
informal care system is $257,000,000,000. Family 
caregiving comes at enormous physical, emotional, 
and financial sacrifice, putting the whole system at 
risk. 
(12) 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. 
(13) Elderly spouses strained by caregiving are 
63 percent more likely to die during a given 4-year 
period than other spouses their age.
(14) 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. 
(15) 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 cost American 
business an estimated $36,500,000,000 in lost pro-
ductivity, as well as an additional $24,600,000,000 
in business contributions to the total cost of care. 
SEC. 3. PRIORITY TO ALZHEIMER’S DISEASE RESEARCH. 
Section 443 of the Public Health Service Act (42 
U.S.C. 285e) is amended—
(1) by striking ‘‘The general’’ and inserting 
‘‘(a) IN GENERAL.—The general’’; and 
(2) by adding at the end the following: 
‘‘(b) PRIORITIES.—The Director of the Institute 
shall, in expending amounts appropriated under this sub-
part, give priority to conducting and supporting Alz-
heimer’s disease research.’’.
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 National Institutes of 
Health shall, in collaboration with the Director of the In-
stitute, the directors of other relevant institutes, and with 
volunteer 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 investigations 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 CLINICAL RESEARCH. 
‘‘(a) IN GENERAL.—The Director of the Institute, 
pursuant to subsections (d) and (e) of section 444, shall 
conduct and support cooperative clinical research regard-
ing Alzheimer’s disease. Such research shall include—
‘‘(1) investigating therapies, interventions, and 
agents to detect, treat, slow the progression of, or 
prevent Alzheimer’s disease; 
‘‘(2) enhancing the national infrastructure for 
the conduct of clinical trials; 
‘‘(3) developing and testing novel approaches to 
the design and analysis of such trials; 
‘‘(4) facilitating the enrollment of patients for 
such trials, including patients from diverse popu-
lations; 
‘‘(5) developing improved diagnostics and 
means of patient assessment for Alzheimer’s disease; 
and 
‘‘(6) as determined appropriate by the Director 
of the Institute, the Alzheimer’s Disease Centers 
and Alzheimer’s Disease Research Centers estab-
lished 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 improve patient 
outcomes.’’; 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 ‘‘$1,100,000,000 for fiscal year 
2004, 
$1,200,000,000 
for 
fiscal 
year 
2005, 
$1,300,000,000 for fiscal year 2006, $1,400,000,000 for 
fiscal year 2007, and $1,500,000,000 for fiscal year 
2008.’’. 
(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 
‘‘2008’’. 
(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 ‘‘2008’’.
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 
‘‘, 
$20,000,000 for fiscal year 2004, and such sums as 
may be necessary for each of the fiscal years 2005 
through 2008’’.
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