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[Senate Hearing 108-130]
[From the U.S. Government Publishing Office]

                                                        S. Hrg. 108-130
 
                       ALZHEIMER'S DISEASE, 2003
=======================================================================

                                HEARING

                                before a

                          SUBCOMMITTEE OF THE

            COMMITTEE ON APPROPRIATIONS UNITED STATES SENATE

                      ONE HUNDRED EIGHTH CONGRESS

                             FIRST SESSION

                               __________

                            SPECIAL HEARING

                     APRIL 1, 2003--WASHINGTON, DC

                               __________

         Printed for the use of the Committee on Appropriations

 Available via the World Wide Web: http://www.access.gpo.gov/congress/
                                 senate

                                 ______

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                      COMMITTEE ON APPROPRIATIONS

                     TED STEVENS, Alaska, Chairman
THAD COCHRAN, Mississippi            ROBERT C. BYRD, West Virginia
ARLEN SPECTER, Pennsylvania          DANIEL K. INOUYE, Hawaii
PETE V. DOMENICI, New Mexico         ERNEST F. HOLLINGS, South Carolina
CHRISTOPHER S. BOND, Missouri        PATRICK J. LEAHY, Vermont
MITCH McCONNELL, Kentucky            TOM HARKIN, Iowa
CONRAD BURNS, Montana                BARBARA A. MIKULSKI, Maryland
RICHARD C. SHELBY, Alabama           HARRY REID, Nevada
JUDD GREGG, New Hampshire            HERB KOHL, Wisconsin
ROBERT F. BENNETT, Utah              PATTY MURRAY, Washington
BEN NIGHTHORSE CAMPBELL, Colorado    BYRON L. DORGAN, North Dakota
LARRY CRAIG, Idaho                   DIANNE FEINSTEIN, California
KAY BAILEY HUTCHISON, Texas          RICHARD J. DURBIN, Illinois
MIKE DeWINE, Ohio                    TIM JOHNSON, South Dakota
SAM BROWNBACK, Kansas                MARY L. LANDRIEU, Louisiana
                    James W. Morhard, Staff Director
                 Lisa Sutherland, Deputy Staff Director
              Terrence E. Sauvain, Minority Staff Director
                                 ------                                

 Subcommittee on Departments of Labor, Health and Human Services, and 
                    Education, and Related Agencies

                 ARLEN SPECTER, Pennsylvania, Chairman
THAD COCHRAN, Mississippi            TOM HARKIN, Iowa
JUDD GREGG, New Hampshire            ERNEST F. HOLLINGS, South Carolina
LARRY CRAIG, Idaho                   DANIEL K. INOUYE, Hawaii
KAY BAILEY HUTCHISON, Texas          HARRY REID, Nevada
TED STEVENS, Alaska                  HERB KOHL, Wisconsin
MIKE DeWINE, Ohio                    PATTY MURRAY, Washington
RICHARD C. SHELBY, Alabama           MARY L. LANDRIEU, Louisiana
                           Professional Staff
                            Bettilou Taylor
                              Jim Sourwine
                              Mark Laisch
                         Sudip Shrikant Parikh
                             Candice Rogers
                        Ellen Murray (Minority)
                         Erik Fatemi (Minority)
                      Adrienne Hallett (Minority)

                         Administrative Support
                             Carole Geagley

                            C O N T E N T S

                              ----------                              
                                                                   Page

Opening statement of Senator Arlen Specter.......................     1
Opening statement of Senator Larry E. Craig......................     2
Statement of Richard J. Hodes, M.D., Director, National Institute 
  on Aging, National Institutes of Health, Department of Health 
  and Human Services.............................................     3
    Prepared statement...........................................     5
Statement of Marilyn A. Albert, Ph.D., director, Division of 
  Cognitive Neuroscience, Department of Neurology; co-director of 
  the Alzheimer's Disease Center, Johns Hopkins University School 
  of Medicine; and Chair, Medical and Scientific Advisory 
  committee, Alzheimer's Association.............................     8
    Prepared statement...........................................    10
Opening statement of Senator Tom Harkin..........................    12
Statement of Sheldon Goldberg, president and CEO, Alzheimer's 
  Associa- 
  tion...........................................................    13
    Prepared statement...........................................    15
Opening statement of Senator Patty Murray........................    23
Statement of Mary Jean and Dwayne Uptegraph, Dubuque, IA.........    26
    Prepared statement...........................................    28
Statement of Donald Kurtz, Blue Bell, PA.........................    29
    Prepared statement...........................................    31
Statement of Mike Martz, coach, St. Louis Rams...................    32
    Prepared statement of Mike Martz.............................    35
Statement of Terrell Owens, wide receiver, San Francisco 49ers...    36
    Prepared statement...........................................    37
Prepared statement of the Center for Senior Health, Jefferson 
  College of Health Professions, Thomas Jefferson University.....    40

                       ALZHEIMER'S DISEASE, 2003

                              ----------                              

                         TUESDAY, APRIL 1, 2003

                           U.S. Senate,    
    Subcommittee on Labor, Health and Human
     Services, and Education, and Related Agencies,
                               Committee on Appropriations,
                                                    Washington, DC.
    The subcommittee met at 9:35 a.m., in room SH-216, Hart 
Senate Office Building, Hon. Arlen Specter (chairman) 
presiding.
    Present: Senators Specter, Craig, Harkin, and Murray.

               opening statement of senator arlen specter

    Senator Specter. Good morning, ladies and gentlemen. The 
Appropriations Subcommittee on Labor, Health and Human 
Services, and Education will now proceed. This hearing 
coincides with the 15th Alzheimer's Association Public Policy 
Forum, and we will kick off the organization's Capitol Hill day 
today. An estimated 400 family caregivers and volunteers will 
attend.
    The subcommittee began hearings on Alzheimer's back in 
1980, and it has been virtually an annual affair since 1998. 
There are approximately 4 million Americans with Alzheimer's 
disease, costing the economy over $100 billion annually. As the 
baby boom generation ages, scientists predict the number of 
individuals with Alzheimer's will jump to 6 million by the end 
of this decade and as high as 14 million by mid-century, when 
the annual cost will be some $375 million a year.
    The ravages of Alzheimer's are known only too well by the 
families of those who suffer from Alzheimer's. The illness came 
into sharp national focus when President Reagan was diagnosed 
with Alzheimer's and then made a public disclosure, and we have 
all watched what has happened with President Reagan since he 
left the White House in 1989, and we have seen the loving care 
from Mrs. Reagan, and that has brought a national awareness as 
to the enormous problems with Alzheimer's.
    The funding for Alzheimer's has increased very, very 
materially from $308 million in fiscal year 1996 to $663 
million, which is our request for this year. This increase in 
funding has been facilitated by an enormous increase in the 
funding for the National Institutes of Health generally. 
Senator Tom Harkin, Democrat of Iowa, and I have chaired this 
committee alternatively. You might not have noticed this, but 
we change parties every now and then in Washington.
    We have passed the gavel in what we call a seamless 
exchange. Our view is that there is too much partisan politics 
in Washington generally. People are sick and tired in America 
of political bickering, and it absolutely has no place when you 
are dealing with the funding of health care, so that in the 
recent years the funding for the National Institutes of Health 
has been increased from $12 billion to more than $27 billion. 
We have more than doubled the NIH funding, and that has had the 
effect of providing tremendous research assistance for ravaging 
diseases like Parkinson's and heart disease and cancer, 
Alzheimer's, and many, many others.
    We are facing certain controversies on the issue of stem 
cells, for example, which burst upon the scene in late 1998. 
Stem cells come from embryos, and have proved to have enormous 
potential to combat ailments like Alzheimer's. Recently, there 
has been a charge of cloning, so-called therapeutic cloning, or 
what is really nuclear transplantation.
    Without getting too deeply involved in that subject, 
suffice it to say today that it is very important for the 128 
million people who are afflicted with ailments either 
themselves or by their families should be aware of the need for 
public support for funding for the National Institutes of 
Health, and for public support for research on stem cells and 
nuclear transplantation.
    The House of Representatives has passed legislation which 
criminalizes medical research in what I consider to be very 
ill-advised legislation. More than 40 Nobel laureates have come 
forward asking that there be freedom for medical research, and 
it is important for you, ladies and gentlemen--you have first-
hand knowledge of this debilitating disease--to be aware of 
this so that you can be activists in your communities, and you 
can advise your Members of the Senate and House of 
Representatives on a national basis what you would like to see 
done. That is the essence of representative democracy.
    We have been joined by our distinguished colleague, Senator 
Larry Craig from Idaho. Senator Craig, would you care to make 
an opening comment?

              opening statement of senator larry e. craig

    Senator Craig. Mr. Chairman, I will be brief. You have an 
outstanding group of panelists this morning, and let me thank 
you for holding the hearing and your advocacy for some of these 
issues that are so critically important.
    I am here today as a member of the subcommittee. I am also 
here as chairman of the Special Committee on Aging in the 
Senate, and I am the adult child of aging parents, and I feel 
very fortunate that I have not had to face Alzheimer's 
directly, but indirectly, certainly with other members of my 
family, with friends and associates. It is very real, and all 
that you said, Mr. Chairman, is certainly true.
    Alzheimer's disease can exhaust the human resources, cause 
physical and emotional hardships for caregivers and is a 
tremendous financial burden on families, and the tragic story 
goes on and on. That is why we are here today, to take the 
testimony of these experts and to see what we can do to 
continue to add to the research that is going on.
    Funding for biomedical research for all diseases is a high 
priority, and this chairman has made it his priority, and Mr. 
Chairman, I thank you for doing so, because it is making a 
difference, and all of these advocates who are here today are 
making a difference, along with that research.
    New discoveries obviously return values to the patient and 
their families, and the story goes on and on. This is a 
challenge that we are facing. It is a challenge that we will 
meet. It is a crisis in our community that we hope to solve 
with the necessary research and work, so thank you very much 
this morning, Mr. Chairman. I look forward to the testimony of 
these experts.
    Senator Specter. Thank you very much, Senator Craig.
STATEMENT OF RICHARD J. HODES, M.D., DIRECTOR, NATIONAL 
            INSTITUTE ON AGING, NATIONAL INSTITUTES OF 
            HEALTH, DEPARTMENT OF HEALTH AND HUMAN 
            SERVICES
    Senator Specter. Our first witness is Dr. Richard J. Hodes, 
who has served as the Director of the National Institute on 
Aging since 1993. He has held several other key posts at NIH, 
including clinical investigator at the National Cancer 
Institute, program coordinator for the U.S.-Japan cooperative 
cancer research program, and deputy chief of the Cancer 
Institute's Immunology Branch, a graduate of Yale, M.D. from 
Harvard Medical School.
    Thank you for joining us, Dr. Hodes, and we look forward to 
your testimony. Our practice is to limit the testimony of each 
witness to 5 minutes. I think it is worth noting that there was 
a memorial service for Ambassador Annenberg recently, and our 
speakers included former President Gerald Ford and Secretary of 
State Colin Powell. Every speaker was limited to 3 minutes, 
including myself.
    So I want you to know at the outset how generous 5 minutes 
is.
    Dr. Hodes, we look forward to your testimony.
    Dr. Hodes. Thank you, Senator Specter, members of the 
committee, and thank you for this opportunity to share with you 
some of the progress being made to understand, diagnose, and 
treat Alzheimer's disease.
    As noted, Alzheimer's disease is a tragic condition that 
affects those with the disease as well as family members, loved 
ones, the health care system, and in fact, the entire society. 
It is a burden that threatens to increase as the American 
population ages over the coming decades. Although this remains 
a critical public health issue, it does so in the context of 
dramatic improvements in our understanding of the disease, some 
of which I would like to share with you today.
    Remarkably, as recently as 15 years ago, we knew nothing 
about the genes that can predispose to Alzheimer's disease, and 
very little about the underlying mechanisms. As recently as 10 
years ago, we had no animal models in which to study the 
disease, 5 years ago there were no ongoing prevention studies 
and very little ability to identify individuals at high risk 
for the disease. As recently as 2 years ago there was no 
effective way in which to study the interactions of the plaques 
and tangles, the brain lesions that are characteristic of the 
disease.
    All of these advances have occurred. We now, over the past 
year alone, have seen dramatic new progress. One of the basic 
underpinnings in our understanding of the disease is our 
ability to understand risk factors, both environmental and 
genetic. It is notable that we have now identified three genes 
which can cause Alzheimer's in early onset familial disease, as 
well as identifying, ApoE, an important risk factor gene for 
the more common late onset disease.
    Notably, investigators are now closing in on identification 
of several additional genes, including those which appear on 
chromosomes 9, 10, and 12. To accelerate progress in this area 
we are now initiating an Alzheimer's disease genetics 
initiative collaboratively among institutes at NIH which will 
accumulate the contributions of genetic materials and 
contributions from centers across the country and around the 
world from population-based studies, and family studies, as 
well as case control studies. We will accumulate these in a 
database which importantly will be available to all 
investigators so that the power of studies to identify genes 
and targets for intervention will be increased dramatically.
    In addition, new refinements and advances in neuroimaging 
have been extraordinary of late. There have been studies with 
techniques such as magnetic resonance imaging (MRI), which have 
now shown the ability to detect defects in the brains before 
the lesions of plaques and tangles can be seen. This is 
important because now we have the ability to detect changes 
before symptoms occur, at a time when intervention may be most 
effective.
    New techniques, which not only can study structure but also 
function of areas of the brain, such as positron emission 
tomography (PET), show promise not only for early diagnosis, 
but being able to track the cause and progression of disease 
and most importantly, perhaps, to be able to track the 
effectiveness of interventions by neuroimaging methodologies, 
and to facilitate and accelerate developments in this area. We 
are currently coordinating the development of a neuroimaging 
initiative which notably will involve collaboration not only 
with NIA and multiple NIH institutes, but with the FDA, with 
the Alzheimer's Association, and with pharmaceutical as well as 
imaging industries to try to develop those techniques which can 
best monitor disease and our future assessment of therapies for 
prevention as well as treatment.
    From imaging and laboratory studies, we are rapidly 
accumulating new strategies, new strategies for attacking the 
underlying processes that are responsible for Alzheimer's 
disease. These include immune approaches. These include the 
identification of new molecules that bind specifically to the 
lesions of Alzheimer's disease and can help to eradicate them. 
As noted, they involve the promise of stem cell research, which 
does have the capability and concept of providing neurons to 
replace those damaged or destroyed during the disease.

                           prepared statement

    We are currently supporting 18 clinical trials of 
Alzheimer's disease, seven of which are large scale prevention 
studies. The unprecedented advances that we have had in 
understanding the underlying mechanism of the disease will in 
the next generation create new opportunities, new targets, and 
new strategies for interventions.
    I thank you for the opportunity to share this progress with 
you. I will be happy to address any questions that you may 
have.
    [The statement follows:]

               Prepared Statement of Dr. Richard J. Hodes

    Senator Specter and Members of the Committee: Thank you for 
inviting me to appear before you today to discuss Alzheimer's disease 
(AD), an issue of interest and concern to us all. I am Dr. Richard 
Hodes, Director of the National Institute on Aging (NIA), the lead 
federal agency for Alzheimer's disease research. I am delighted to be 
here this morning to tell you about the progress we are making toward 
understanding, treating, and preventing AD.
    As you know, AD is a devastating condition with a profound impact 
on individuals, families, the health care system, and society as a 
whole. According to data from the Alzheimer's Association, 
approximately 4 million Americans are currently battling AD, with 
annual costs estimated to exceed $100 billion. Moreover, the rapid 
aging of the American population threatens to increase this burden 
significantly in the coming decades: Demographic studies suggest that 
if current trends hold, the annual number of incident cases of AD will 
begin a sharp increase around the year 2030, when all the baby boomers 
(born between 1946 and 1964) will be over age 65. By the year 2050, the 
number of Americans with AD could double.\1\
---------------------------------------------------------------------------
    \1\ Hebert LE, Beckett LA, Scherr PA, and Evans DA. Annual 
Incidence of Alzheimer Disease in the United States Projected to the 
Years 2000 Through 2050. Alzheimer Dis. Assoc. Disord. 15: 169-173, 
2001.
---------------------------------------------------------------------------
    But these numbers, however stark, do not tell the whole story. 
Although AD remains a major public health issue for the United States, 
we have made, and are continuing to make, dramatic gains in our ability 
to understand and diagnose AD that offer us the hope of preventing and 
treating the disease, reversing the current trends.
    Fifteen years ago, we did not know any of the genes that cause AD, 
and we had only a limited understanding of the biological pathways that 
are involved in the development of brain pathology. Ten years ago, we 
could not model the disease in animals. Five years ago, we were not 
funding any prevention trials and had no way of identifying persons at 
high risk for the disease. And as recently as two years ago, we did not 
understand anything about how AD's characteristic amyloid plaques and 
neurofibrillary tangles in the brain relate to each other.
    Today, we have accomplished all of these things through a far-
ranging and innovative program of scientific endeavor. And in the past 
year alone, we have made a number of important discoveries.
    A crucial underpinning of our efforts to develop interventions that 
delay or even prevent clinical manifestation of AD is the understanding 
of the events leading up to the disease's appearance, including risk 
factors. Through laboratory and population-based research, we have 
identified a number of risk factors for AD, including genetic and 
lifestyle factors. We already know three major genes for early-onset 
disease and have identified a major risk factor gene for late onset 
disease, ApoE4. Recent findings are enabling us to close in on several 
others, thought to be on chromosomes 9, 10, and 12.
    In order to move the field of Alzheimer's disease genetics forward 
more rapidly, the NIA has developed an Alzheimer's Disease Genetics 
Initiative. A major component of this initiative is the collection of 
family-based, population-based, and case-control sample sets. To 
facilitate collection of the family-based sample set, administrative 
supplements were awarded last year to ten Alzheimer's Centers to 
identify families with two or more affected members and to collect 
blood and information from them for archiving in the National Cell 
Repository for Alzheimer's Disease (NCRAD). DNA and information on 
these individuals will be made available, with appropriate controls to 
ensure participant confidentiality, to the research community. The 
information gained through this initiative will be invaluable to the 
discovery of AD-related genes, which will in turn help us identify 
pathways affecting AD development or progression.
    In addition to genetic and molecular risk factors, studies funded 
by a number of NIH Institutes are revealing the possible impact of 
diseases such as cardiovascular disease and diabetes on AD-related 
dementia in later life. Researchers in one study found that persons in 
a Latino population had a 7-8 fold increased risk of dementia if they 
had both type 2 diabetes and stroke compared to persons who had 
neither, suggesting that improved interventions to prevent diabetes and 
stroke may prevent dementia in substantial numbers of people. Results 
from the ongoing Cardiovascular Health Cognition Study demonstrated 
that measures of cognition, ApoE4 status, and certain results on 
magnetic resonance imaging (MRI) of the brain are together strongly 
predictive of both dementia and AD.
    In fact, the development and refinement of powerful imaging 
techniques that target anatomical, molecular, and functional processes 
in the brain is giving us an improved ability to identify people who 
are at very high risk for AD, as well as a greater understanding of the 
disease's pathology. For example, in a recent mouse study, researchers 
found that changes in brain structure can be detected by magnetic 
resonance microscopy before amyloid plaques appear in the brain, 
suggesting that subtle pathologic changes are occurring long before 
signs and symptoms of the disease appear. Other investigators have 
found that metabolic changes in certain parts of the brain, as detected 
through positron emission tomography, show potential for predicting 
future decline in cognitively normal adults. Researchers are also 
working to improve our ability to image plaques and tangles in vivo, 
which will allow us to diagnose the disease with greater accuracy and 
more closely follow its progression and response to therapies.
    These techniques, along with improved neuropsychological tests, are 
enabling us to diagnose AD early, while the patient can still take an 
active role in decision-making. This knowledge, in turn, may allow 
early intervention long before the disease affects the patient's level 
of functioning.
    An Alzheimer's Disease (AD) Neuroimaging Initiative is under 
development as a study of normal aging, mild cognitive impairment 
(frequently a precursor of AD), and early AD, using serial magnetic 
resonance imaging and positron emission tomography scans, clinical and 
neuropsychological data, and collections of biological fluids and cells 
for other potential biomarkers. The Initiative is being planned with 
participation by NIA/NIH, the Food and Drug Administration, academic 
investigators, the pharmaceutical industry, the imaging equipment 
industry, the Alzheimer's Association, and the Institute for the Study 
of Aging. It is anticipated that information gained from this 
initiative will help us identify potential uses of imaging and other 
surrogate markers for following progression of cognitive decline and 
dementia, and for assessing the effectiveness of interventions to 
prevent or treat AD.
    As we learn more about AD's pathology through imaging and 
laboratory studies, we are identifying a number of novel molecular 
characteristics that may prove to be targets for treating the disease 
or preventing it altogether. In this endeavor, animal models--
particularly transgenic mice, but also worms, dogs, and even non-human 
primates--are invaluable research resources for studying age-related 
and disease-related changes in the brain and for testing promising 
interventions.
    Two new research findings suggest that boosting normal, protective 
processes in the brain might help degrade or prevent the development of 
amyloid plaques. In one study, researchers found that gene transfer 
into mice of the enzyme neprilysin may help clear the protein that 
forms amyloid plaques in humans. In the other, researchers found that 
brain cells called astrocytes can degrade the beta amyloid peptide in 
cell cultures, suggesting that harnessing the protective function of 
these cells may be a strategy for AD prevention and treatment.
    Another potential preventive strategy involves enhancing the 
function of chaperone proteins, which aid in proper protein folding. In 
various cellular models, researchers have noted an inverse relationship 
between levels of a heat shock protein (a chaperone) and 
neurofibrillary tangles in the brain, suggesting that up-regulation of 
molecular chaperones may suppress formation of neurofibrillary tangles. 
More research is needed to assess the clinical significance of these 
findings.
    Researchers are also exploring immune approaches that target AD. In 
collaboration with the National Institute of Neurological Disorders and 
Stroke, NIA has issued a Request for Applications (RFA) and funded a 
number of studies to better understand the science underlying 
immunologic approaches. An encouraging outcome of this research is the 
observation that antibodies in the blood may draw soluble amyloid out 
of the brain, perhaps even reducing the size of plaques as well. The 
newest results suggest that other compounds that bind to amyloid may 
have the same effect. Whether these results in animal studies can be 
successfully applied to humans has not yet been evaluated.
    Human stem cells, with their unique capacity to regenerate and give 
rise to many tissue types, are of particular interest in AD research 
because of their potential ability to generate new cells that could 
renew damaged brain tissue, replace dying neurons, or enhance the 
ability of the brain to respond to age-related impairments. Recent 
findings suggest that both human embryonic stem cells (hES), which can 
give rise to many cell types, and ``adult'' stem cells, which develop 
into specific cell types, show promise for the eventual treatment of AD 
and other neurodegenerative conditions. Researchers have recently 
developed a method for inducing hES cells to differentiate into 
neurons. These newly-derived cells exhibit the properties of cells 
ordinarily found in the brain and central nervous system, suggesting 
that hES cells could provide a source for neural progenitor cells and 
mature neurons for therapeutic use. Investigators have also found that 
in the adult hippocampus, neural stem cells can give rise to functional 
neurons that can integrate effectively into existing neural circuits.
    In addition to interventions at the molecular level, scientists are 
increasingly enthusiastic about the role of behavioral variables, such 
as mentally stimulating activities throughout life, as a factor capable 
of maintaining cognitive health or even reducing the risk of cognitive 
decline or AD. Through its Advanced Cognitive Training for Independent 
and Vital Elderly (ACTIVE) study, NIA explored whether three specific 
interventions (on memory, reasoning, and speed of processing) could 
maintain or improve functioning in unimpaired, community-dwelling older 
adults. The investigators found that the interventions helped the 
participants to perform better on multiple measures of the specific 
cognitive ability for which they were trained, and that these 
improvements persisted for two years after training. Additional follow-
up of participants is planned.
    Research has also suggested that the use of several common, over-
the-counter compounds may be associated with reduced risk of AD and 
dementia. For example, epidemiologic studies show a correlation between 
long-term use of non-steroidal anti-inflammatory drugs (NSAIDs) such as 
ibuprofen and a reduced risk of developing AD, and recent findings in 
animal models suggest the possibility that some newer anti-
inflammatories may reduce inflammation as well as directly reduce the 
formation of amyloid. Likewise, researchers are developing and testing 
new antioxidant drugs that ameliorate or prevent brain cell damage or 
death caused by oxidative stress, a form of cell damage caused by 
molecules generated during normal energy metabolism. Chronic oxidative 
stress may be a contributing factor in neurodegenerative disorders, 
including AD. In studies of dogs and rats, diets rich in antioxidants 
resulted in a significant improvement in the ability of older animals 
to acquire progressively more difficult learning tasks. These results 
suggest that oxidative damage impairs cognitive function and that 
antioxidant treatment can result in significant improvements.
    NIA is currently supporting 18 AD clinical trials, seven of which 
are large-scale prevention trials. These trials are testing agents such 
as estrogen, anti-inflammatory drugs, and anti-oxidants for their 
effects on slowing progress of the disease, delaying AD's onset, or 
preventing the disease altogether. Other intervention trials are 
assessing the effects of various compounds on the behavioral symptoms 
(agitation, aggression, and sleep disorders) of people with AD. The 
design and implementation of all of these clinical trials will be 
carried out in the context of the NIH Roadmap initiative to enhance 
clinical research infrastructure and methodology.
    Another very important area of research involves easing the burden 
on caregivers of AD patients. Most Americans with AD are cared for at 
home by an adult child or in-law, a spouse, another relative, or a 
friend. For this reason, the AD ``patient'' is, in a sense, not only 
the person with the disease, but the entire family unit. The NIA's 
REACH Project (Resources for Enhancing Alzheimer's Caregiver Health), a 
large, multi-site intervention study aimed at family caregivers of AD 
patients, was designed to characterize and test promising interventions 
for enhancing family caregiving. Nine different social and behavioral 
interventions were tested, and investigators found that the combined 
effect of interventions alleviated caregiver burden, and that 
interventions that enhanced caregiver behavioral skills reduced 
depression. The second phase of the study, REACH II, combines elements 
of the diverse interventions tested in REACH into a single multi-
component psychosocial behavioral intervention and is ongoing.
    The goal of AD research is ultimately to identify the most 
effective strategies for preventing and treating AD in diverse 
populations. Recent research findings have provided an unprecedented 
base of knowledge upon which to design these strategies. Research on AD 
genetics, on the basic cellular biology of AD-related pathways, the 
changes taking place in the brains of persons with mild cognitive 
impairment and early AD, animal models, and hints of possible risk and 
protective factors from epidemiology studies, have all contributed to 
identification of new clinical opportunities. These diverse and 
productive research approaches will continue to drive the design of 
innovative pilot studies and full scale clinical trials that are most 
likely to yield effective strategies for preventing and treating AD.
    It is difficult to predict the pace of science or to know with 
certainty what the future will bring. However, the progress we have 
already made will help us speed the pace of discovery, unravel the 
mysteries of AD's pathology, and develop safe, effective preventions 
and treatments, to the benefit of older Americans.
    Thank you for giving me this opportunity to share with you our 
progress on Alzheimer's disease. I would be happy to answer any 
questions you may have.

    Senator Specter. Thank you very much, Dr. Hodes. Before 
proceeding to the first round of questions, I would like to 
call two members of the second panel. Mr. Sheldon Goldberg, if 
you will step forward, and also Dr. Marilyn Albert.
STATEMENT OF MARILYN A. ALBERT, Ph.D., DIRECTOR, 
            DIVISION OF COGNITIVE NEUROSCIENCE, 
            DEPARTMENT OF NEUROLOGY; CO-DIRECTOR OF THE 
            ALZHEIMER'S DISEASE CENTER, JOHNS HOPKINS 
            UNIVERSITY SCHOOL OF MEDICINE; AND CHAIR, 
            MEDICAL AND SCIENTIFIC ADVISORY COMMITTEE, 
            ALZHEIMER'S ASSOCIATION
    Senator Specter. Dr. Albert is the director of the Division 
of Cognitive Neuroscience at the Department of Neurology, and 
co-director of the Alzheimer's Disease Center at the Johns 
Hopkins School of Medicine, and also the chair of the Medical 
and Scientific Advisory Committee of the Alzheimer's 
Association, receiving her doctorate from McGill University.
    Thank you for joining us, Dr. Albert, and we look forward 
to your testimony.
    Dr. Albert. It is a great pleasure to be here today, and 
thank you for inviting me back to talk to you about the 
progress and the promise of Alzheimer's disease research.
    I've submitted in writing a document outlining five points 
related to strategy that we think will enable us to achieve 
effective treatments and prevention of Alzheimer's disease in 
the future, but in the short time that I have this morning I 
wanted to emphasize just a few points.
    First, I wanted to say that I believe my colleagues and I 
in the scientific community in the United States and around the 
world really believe that we are at a crossroads with respect 
to the treatment of Alzheimer's disease. Because of previous 
investment in Alzheimer's disease research there is now a 
consensus about the mechanism of the underlying causes of the 
disease. Because of previous investment in research there is 
now the technological capability to attack the problem with a 
wide range of tools, and because of previous investment there 
is a cadre of clinical and basic scientists around the world 
who are willing to devote their careers to solving the problem.
    If funding remains stable, which seems a real possibility, 
we believe that this will limit our ability to solve the 
problems that we see before us. As it now turns out, 
Alzheimer's disease is a much more complex problem than any of 
us ever anticipated, requiring novel approaches, and in 
particular what now seems to be clear is that there is a need 
for interdisciplinary, collaborative, large-scale efforts in 
solving several areas of problems, in addition to the funding 
that already exists, for providing funding to individual 
scientists and individual laboratories, and I would like to 
just give you a few brief examples.
    The first has to do with the animal models that Dr. Hodes 
just referred to. As you know, we need good animal models to 
understand the disease better and to test prospective 
treatments, and it is clear that the animal models we have are 
not sufficient. We need to have better animal models. They need 
to be more widely available, because many are now protected by 
patents, and so limited in their distribution.
    There has already been a consortium that has been developed 
with the Alzheimer's Association, several foundations and, in 
fact, pharmaceutical companies in an effort to develop better 
animal models, to raise them, to distribute them, but it is 
clear that we need more funding for this effort.
    With respect to the genetic studies that Dr. Hodes just 
mentioned, it is now clear that Alzheimer's disease is 
genetically very complex. As you heard, there are now four 
genes that have been identified with respect to Alzheimer's 
disease. We believe that there are at least an additional four 
to seven more to be found.
    Years ago, when it was clear that this was a complex 
disease genetically, there was a consortium established of 
three medical centers. They created a database that was 
nationally available. There were 500 subjects in the database 
with clinical information and DNA, and it is now clear that 
that is not enough, so we need considerable more funding in 
this area.
    With respect to clinical trials, as Dr. Hodes just 
mentioned, there are many promising agents available. The 
pharmaceutical companies, of course, are testing the drugs that 
they developed, but we need more testing of drugs that are 
under patent protection, and particularly with regard to 
prevention of Alzheimer's disease.
    Finally, with respect to disease markers that Dr. Hodes 
just mentioned, it seems very clear that in order to be better 
in conducting the clinical trials that we need to conduct, we 
need better markers of disease and of disease progression.
    The real fear right now among the scientists is that when 
we have effective treatments it might, in fact, take too long 
to find out that they are in our possession, that the standard 
methods that we have now for identifying improvement are not 
going to show us that there are changes that are really taking 
place, and that is why we need these new imaging methods and 
other biomarkers to better identify that we have effective 
treatments, and to monitor those treatments over time, and the 
imaging initiative that Dr. Hodes referred to is the method 
that we think will help the effort along, but of course it is 
very costly.
    So from just these four examples, I think that you can see 
why so many of us believe that a collaborative, integrated, 
large-scale model of science is needed now, in addition to the 
usual effort that we are accustomed to of funding individual 
scientists and individual laboratories. I am sure you know that 
scientists tend to be individualists, so many of them have 
taken a long time to recognize that this is, in fact, what is 
needed, but recognize it they do, and as I have just mentioned, 
we are talking about a lot of money, $25 million for each 
clinical trial, $60 million for the imaging initiative.

                           prepared statement

    I know, however, that this pales in comparison to the $60 
billion that we spend on Medicare and Medicaid each year in 
taking care of Alzheimer patients, and I also know that if we 
have that money we could use it wisely, so we are asking you to 
increase the funding for Alzheimer's disease research. We are 
promising you that if you give it to us we will get the job 
done.
    Thank you very much.
    [The statement follows:]
              Prepared Statement of Dr. Marilyn A. Albert
    Thank you Senators Spector and Harkin for inviting me back to talk 
with you about the excitement and the promise of Alzheimer's research. 
Your consistent support of funding for Alzheimer research, and your 
endorsement of the $1 billion goal, is an indication of your own 
confidence in the Alzheimer research community. I am pleased to appear 
before you to report that your confidence is well placed.
    Those of us in the scientific community who have been working on 
the problem of Alzheimer's disease for a long time are astounded at the 
extraordinary progress that has been made in the past two decades, and 
especially the tremendous leaps forward in just these past few years. 
That is the result of the investment you have already made and we thank 
you for your leadership and your persistence.
    We know that you are under enormous budget pressures--with the 
economic slowdown, rising budget deficits, and the costs associated 
with the conflict in Iraq. We understand that Congress will have to 
make very hard choices among compelling needs and competing priorities. 
And, we understand that with the completion of the effort to double 
funding for the National Institutes of Health, requests for additional 
support for medical research will receive extra scrutiny.
    Other witnesses this morning are providing compelling personal and 
economic evidence of the urgent need to find answers to Alzheimer's 
disease. I can tell you that the scientific reasons for investing more 
in Alzheimer research now are equally compelling. And I can assure you 
that every additional dollar you can direct to that research will be 
well spent as part of a carefully constructed strategy designed to get 
us to the answers faster, better, and in the long run, cheaper.
    Our strategy for conquering Alzheimer's has shifted over the years 
and has become more ambitious, as we have learned more about the basic 
mechanisms of the disease and as new scientific tools like imaging and 
genetics have become available to us. We now think about Alzheimer's 
disease in three distinct stages.
    When I started my work on Alzheimer's disease more than 20 years 
ago, and until fairly recently, we were focused on what we now consider 
to be the third stage--actual clinical dementia. At this point, the 
symptoms of Alzheimer's disease are clear and the disease is already 
taking its toll on the person's ability to function independently. Our 
goal at this stage is to treat those symptoms and slow decline, to help 
people live and function well in the community as long as possible. 
That is still part of our strategy. But it is probably not the way we 
are going to get the disease under control and avoid the huge costs to 
Medicare and Medicaid.
    We now recognize that we need to attack Alzheimer's disease at much 
earlier stages, and we are pushing the science back to these stages 
now. There is middle prodromal stage, what some refer to as mild 
cognitive impairment, or ``MCI.'' At this stage, there are early signs 
that the disease is evolving, but the patient does not meet clinical 
critieria for dementia. Our goal here is to slow the progression of the 
disease process--to postpone and hopefully to prevent full-blown 
Alzheimer's disease.
    Ultimately, our goal is to reach back to an even earlier point--
normal aging--to prevent the disease process from ever starting.
    There are five critical components to this Alzheimer prevention 
strategy, all of which will require your additional financial support.
    First, we have to maintain the pipeline of basic scientific 
discovery to develop the potential targets for treatment and 
prevention. At current funding levels, the NIH can support only about 
one in four qualified proposals that have been successfully peer-
reviewed. It would take an additional $29 million for the National 
Institute on Aging to fund another 10 percent of the most promising 
proposals it receives.
    Second, we need to develop better animal models of Alzheimer's that 
will more closely parallel the disease in humans. Right now, basic 
science is developing targets for potential treatment and prevention 
faster than we can possibly test them in full-scale clinical trials. 
Animal models allow us to screen for the most promising targets. It is 
expensive to develop and maintain these animal models and to put them 
in the hands of the general scientific community--it could take as much 
as $50 million to do that. But once the models are available, we will 
be able to test a potential new treatment at a fraction of the cost of 
human trials--a faster, cheaper way to narrow the targets for 
prevention and to speed effective drugs to market.
    Third, we must test the most promising potential targets for 
prevention in large-scale clinical trials, in persons who are 
cognitively normal and in those in the prodromal stage. That is the 
only way to figure out whether early use of any of these compounds can 
have a protective effect. In the absence of a way to detect disease and 
follow its progress at these early stages, the only way to determine 
whether a compound works is to enroll large numbers of people in these 
trials and to follow them for a long enough period of time, three to 
five years, to see what happens. Each of these prevention trials will 
cost $25 to $30 million, and we need to start them as rapidly as 
targets are identified.
    The National Institute on Aging is leading efforts to try to find a 
way to do these prevention trials faster and at less cost. Which brings 
me to the fourth part of the strategy--the search for biomarkers that 
may allow us to see evidence of disease and to monitor its progress 
without having to wait for evidence from cognitive testing. That is the 
goal of NIA's proposed imaging initiative. It would serve two purposes: 
first, to find better treatments faster and second, to provide accurate 
earlier diagnosis. It is the first of these that holds the most 
immediate and exciting promise. In current prevention trials, we have 
to follow people for years until cognitive testing can demonstrate 
whether the compound being tested is actually having any preventive 
effect. If we can use imaging techniques to monitor changes in the 
brain that indicate progression of disease, then we will be able to 
determine whether a compound is having a preventive effect within a 
matter of months. This will substantially reduce the size, the length 
and the cost of prevention trials. And it will make an enormous 
difference in the speed with which companies can bring effective 
treatments to the market place--which is why they are so interested in 
partnering with NIA on this initiative. A second potential outcome of 
this imaging initiative will be development of effective techniques 
that will allow accurate early diagnosis of Alzheimer's so that, once 
we have effective preventions, they can be started in patients who need 
them soon enough to make a difference. The imaging initiative will cost 
an estimated $60 million. While NIA is working hard to enlist industry 
as investors in this initiative, it will take additional funds from 
Congress to implement it fully.
    Fifth, we need to identify additional risk factors for Alzheimer's 
so that once we find the compounds that will work to prevent disease, 
we can target them to those who need and will benefit from them. We are 
now quite certain that Alzheimer's disease is caused by some 
combination of genetic and environmental risk factors. We have 
discovered some of those genetic risk factors, but there are 
undoubtedly more. NIA has developed a ground-breaking genetics 
initiative that is designed to speed the search for the remaining genes 
by creating a central pool of data and tissue that would be widely 
available to investigators in both academic and industry settings. The 
infrastructure for that initiative is in place and the Alzheimer's 
Association is working closely with NIA both to recruit families to 
participate in the initiative and to assure that issues of privacy and 
informed consent are fully met. The full cost of that initiative is 
estimated at $60 million.
    This genetics initiative is just the latest chapter in the unique 
story of collaboration and cooperation that NIA has written.
  --Through the Alzheimer's Disease Centers, NIA has brought 
        researchers together across disciplines to bring their multiple 
        lines of scientific inquiry together to tackle Alzheimer's 
        disease.
  --Through mechanisms like the Alzheimer's Disease Cooperative Study 
        and the Alzheimer's Research Coordinating Center, NIA has 
        encouraged, prodded, and occasionally compelled scientists to 
        collaborate among laboratories and academic institutions--so 
        that today, sharing of data and information and collaboration 
        have become the standard way of doing business in the Alzheimer 
        research community.
  --Under Dr. Hodes' leadership, NIA has fostered cooperation and 
        collaboration on Alzheimer research across institutes at NIH.
  --And for more than 20 years, the Alzheimer's Association and the NIA 
        have collaborated to maximize our public and private resources 
        to attract new scientists to the field of Alzheimer research, 
        to encourage novel lines of inquiry, and to bring researchers 
        from academic institutions and industry together to develop 
        strategies to move the entire field forward.
    This unprecedented collaboration is the unsung story of Alzheimer 
research--and it should be a model for the future of all scientific 
research. You can be assured that any money you appropriate for 
Alzheimer research will be spent wisely, efficiently, and effectively.
    $25 million, $29 million, $50 million, $60 million. Senators, these 
are big numbers and they come on top of the estimated $650 million that 
NIH is already spending on Alzheimer research. But they pale in 
comparison with the $50 billion that Medicare and Medicaid are already 
spending on this disease. With an additional $200 million this year, 
and a total $1 billion commitment as soon as possible, we have a very 
good shot at reversing the course of Alzheimer's disease before it is 
too late to save Medicare and Medicaid and the 14 million baby boomers 
who are at risk.

    Senator Specter. Thank you very much, Dr. Albert. I think 
Senator Harkin may have heard the complimentary comments I was 
making about him and rushed down so that I would not change any 
of my statements, but I said before you arrived, Senator 
Harkin, about our collaboration over the years, the seamless 
change of the gavel, knowing that if you want to get something 
done in Washington you have to cross party lines, and I now 
yield to you.

                OPENING STATEMENT OF SENATOR TOM HARKIN

    Senator Harkin. Senator Specter, thank you very much, and I 
return the compliments. This is the fourth year in a row that 
we have had a specific hearing on Alzheimer's. I have chaired 
it, and Senator Specter has chaired it, which again is 
illustrative of what Senator Specter said. When it comes to 
these issues, health issues, and when it comes to Alzheimer's 
research in particular, there are no party lines around here. 
We are all in this together, and I just want to thank my 
chairman and my good friend Arlen Specter for all of his 
diligent work and his leadership in leading this subcommittee 
on appropriations and leading the obligations we have across a 
broad spectrum of health research in this country. But I can 
tell you from my own personal conversations with Senator 
Specter to all of you in this room, there is nothing that 
concerns him more, and to which he has dedicated more time and 
effort, than his focus on getting at the root causes of 
Alzheimer's, to making sure we fund this program, and to make 
sure we move ahead very aggressively in finding those early 
markers that you were talking about and those early stages so 
that we can have early interventions, and hopefully at some 
point reach some form of a preventive measure to cover everyone 
in this country.
    The clock is ticking right now. Maybe someone mentioned 
this. There may be 4 million people now with Alzheimer's, 
costing our economy $100 billion a year. By 2050 they tell me 
there could be as many as 14 million Americans with 
Alzheimer's, costing us over $375 billion a year. If we could 
just delay the onset of Alzheimer's by 5 years we would save 
over $50 billion a year.
    So again, that argues for us to really make sure that we 
fund this larger clinical trials and get on with it. Again, I 
talk about the money, but that does not begin to describe the 
emotional and physical toll that this disease takes on families 
and loved ones all over the country.
    So I want to thank all of you who are here with the 
Alzheimer's Association, your Capitol Hill Day, please do your 
best in getting to the offices here in the Senate and in the 
House of Representatives to make sure that your story gets out, 
and to make sure that we get the kind of support that we are 
going to need later on, because we are just two, three, four, 
five on this committee. We need broad help from the House and 
the Senate in order to get through our funding, to make sure we 
get the amount of money we need to really tackle this job.
    So again, Mr. Chairman, I thank you for your leadership. I 
thank you for being here. Dr. Hodes, thank you for your great 
leadership at the Institute of Aging, and thank you all for 
being here. I do not want to go on too long. I have got people 
standing there. We want to get you out of here and get you to 
the offices so you can do your job today convincing Senators 
and Congressmen to support our budget.
    Senator Specter. Thank you very much, Senator Harkin. We do 
have quite a few people standing. There are some seats on the 
front row, and you are welcome to come and sit with the 
Senators. You will not get to question, though.
    But there are empty seats, and you are welcome to take 
them.
    Senator Harkin. Mr. Chairman, I am sorry. I was remiss, I 
wanted to recognize Dwayne and Mary Jean Uptegraph from 
Dubuque, who took the time to travel, and they are testifying 
here later on, and I wanted to just recognize and thank them 
and other Iowans who are here today.
    Senator Specter. Thank you, Senator Harkin.
STATEMENT OF SHELDON GOLDBERG, PRESIDENT AND CEO, 
            ALZHEIMER'S ASSOCIATION
    Senator Specter. We now turn to Mr. Sheldon Goldberg, who 
joined the Alzheimer's Association as president and chief 
executive officer on December 1 of last year. Previously, he 
was president and CEO of the Jewish Home and Hospital in New 
York. He holds a bachelor of science degree in educational 
psychology from the University of Wisconsin. Thank you for 
joining us, Mr. Goldberg, and the floor is yours.
    Mr. Goldberg. Thank you very much, Senator. I am honored 
and it's a delight for me to appear before this committee and 
to join both you, Senator Specter and Senator Harkin in the 
long fight that you have had with this horrible disease, and to 
express our appreciation, and it is my honor to join you in 
that fight.
    I have spent most of my career involved with long-term 
care, providing health care for people who suffer from this 
disease, and it is an honor to get on the other side of this 
issue to advocate for its eradication, to do the research and 
advocate for the services that are so critically needed. You 
have provided this leadership, and we have brought a number of 
our people from around the country to participate in this 
hearing and we thank you for that, as well as to persuade the 
Congress, to persuade the President, and persuade the American 
people that this is a fight and it is an issue that needs to be 
conquered, and that it is an urgent national priority.
    Many are here to join me, and many will go about the 
business of helping to convey and convey a very compelling 
story about the need for research and eradication of this 
disease, and many will share their stories with you today, but 
there are millions of people across this country who have 
stories to tell that are heartfelt stories, who suffer from 
this disease.
    Their stories are compelling in themselves in terms of 
going after this disease, of trying to aggressively cure, or 
treat, or finally eradicate this disease, but my approach is 
slightly different. I want to speak to you about the economic, 
the practical, the political reasons why we need to attack this 
disease, and why we need to eradicate this disease now.
    Congress is confronted with budget deficits, and I do not 
envy you all the tough decisions you have to make, but one of 
the major areas you have to confront is the areas of Medicare 
and Medicaid, and very simply you will not be able to solve the 
issues surrounding Medicare and Medicaid unless we resolve the 
issues and the uncertainty around Alzheimer's disease. That is 
the essence of my presentation and my point.
    We will not solve the problem with Medicare and Medicaid 
until we solve and eradicate this disease. We will not be able 
to balance the Federal budget, especially when it comes to 
health care, especially in the future until we come to the 
conclusion that we need to eradicate and do something about 
this horrible disease.
    Now, it is interesting, I want to just provide a few bits 
of information if I can. Literally, I believe Alzheimer's 
disease is driving the Medicare cost. For an individual who 
suffers from Alzheimer's disease, it costs three times as much 
money to provide Medicare services for that individual, and 
simply looking at the cost that will increase over the next 10 
years, we are looking at at least a 55 percent increase just 
for those individuals who suffer from Alzheimer's disease.
    I would note that us baby boomers have not arrived at the 
age to get Medicare benefits at that point, and at that moment 
it begins to take off. It does not take much to imagine, when 
the baby boomers arrive and suffer from this disease, if it is 
not eradicated, there are supposed to be 14 million baby 
boomers who suffer from this disease. It is almost a four 
times, 400 percent increase in the level of needs and the level 
of cost to meet their needs.
    Medicaid is just as grim. At both the Federal and the State 
level, and I know you receive tremendous pressure. My 
background is representing the nursing home industry and long 
term care in this country. Prior to coming to this position I 
ran the largest and the oldest long term care system in this 
country serving literally tens of thousands in New York City, 
and I have to tell you our institutions and our services were 
filled. At least 60 percent of the people were there suffering 
from Alzheimer's disease, and it is literally the issues that 
are driving the system.
    I cannot tell you how it bankrupts families. Everyone 
strives to keep their loved ones at home. They try to do the 
best they can and get the best resources they can, and 
literally families do go bankrupt from this disease, but I also 
have to tell you that they are bankrupting the Medicaid system, 
and if you simply look over the next 10 years, the numbers, we 
will be looking at an 80-percent increase just for Alzheimer's 
disease, for people who suffer from this disease in the 
Medicaid program.
    If I were a Governor and I was appearing before this 
committee, I would be demanding funds for research to have 
launched an assault on this disease, because Medicaid programs 
are driving the State budgets across this country. We need to 
find the cure and eradicate this disease.
    If I was a corporate CEO coming from one of our Fortune 500 
companies in this country, I would be asking for research 
dollars, because simply it is one of the largest areas of 
productivity decreases because of individuals who have to meet 
family members' needs across this country. It is estimated it 
costs corporations $61 billion a year in just lost productivity 
because of the needs for Alzheimer's patients.
    So there is much to be done. Now, there is a game plan, and 
they are able to present the game plan to the committee. Some 
of it goes in terms of how we modify the Medicare program to 
focus more on a chronic care benefit. That will help somewhat, 
but it is not going to solve the problem. The problem will not 
go away. It may provide some minimal or modest relief.
    Research we believe is the only answer, and is the only way 
of getting control of Medicare and Medicaid costs, and this is 
why we are calling on the Congress and asking for your 
assistance for approximately $200 million additional research 
dollars to continue the research that started and take on 
additionally critical cases and critical issues of research 
that have to go on. Now, I am not a scientist, but I understand 
the only solution to finding a solution to Alzheimer's disease 
is going to come through science.
    Now, let me end, if I can, we know some things about 
Alzheimer's, and I am learning much more, that if you are going 
to get, you or I, Alzheimer's disease, the disease starts long 
before the manifestation of symptoms. It starts 10 years, maybe 
20 years beforehand, and if you as Senators or I as an 
individual is destined to get Alzheimer's disease, it is 
vitally important that these changes that are going on in our 
brains at this time before we see the symptoms, it is vitally 
important we initiate the research to find the solutions to 
these problems.

                           prepared statement

    I cannot tell you how honored I am to come before you. I 
cannot express the deepest appreciation we hold for you for 
your commitment to helping us eradicate this disease, and I can 
only speak for the people who across this country suffer from 
the disease and the many who fear it, and thank you very much 
for your support and your responsiveness.
    [The statement follows:]
                 Prepared Statement of Sheldon Goldberg
    I am delighted to be back before Congress this morning in my new 
role as CEO and President of the Alzheimer's Association. My entire 
career has been in long term health care, but this is the most 
important job I have ever held. Senator Spector and Senator Harkin, you 
have been leaders for many years in the fight against Alzheimer's 
disease--it is an honor for me to join you.
    Two years ago, you put the Senate on record in support of $1 
billion for Alzheimer research, and thanks to your leadership, we are 
almost two-thirds of the way to that goal. The Alzheimer's Association 
is committed to helping you get the rest of the way--to reach that goal 
as rapidly as possible. Today's hearing is just the beginning of our 
redoubled effort to persuade Congress, the President, and the American 
people that the fight to conquer Alzheimer's disease must be an urgent 
national priority.
    Sitting behind me in this room today are hundreds of women and men 
with heart wrenching stories of the devastating personal impact of 
Alzheimer's disease. They are people who have Alzheimer's, their 
families, and their care partners. You will hear from some of them this 
morning. The rest will leave here to go tell their stories to your 
colleagues, their own representatives in Congress. There are tens of 
thousands more like them, across the country, who will be following up 
with Congress in the weeks and months ahead.
    These personal stories are compelling and should be sufficient 
cause for Congress to act, immediately and aggressively. But there are 
also very practical political and budgetary reasons for an all out 
assault on Alzheimer's now--and that is what I want to discuss with 
you.
    This is a Congress that must confront growing budget deficits and a 
looming crisis in Medicare and Medicaid. My message is simple. You will 
not--you cannot--save Medicare and Medicaid unless you get Alzheimer's 
disease under control. You will not--you cannot--balance federal and 
state budgets if you let Alzheimer's disease continue on its present 
course.
    Let me paint the picture for you.
            the cost of alzheimer's disease is unsustainable
    Alzheimer's disease is already driving up Medicare costs. The 
program pays 3 times more for basic health care for persons with 
dementia than it pays for other beneficiaries. That holds true across 
age groups and medical conditions. Within 10 years, annual Medicare 
costs for beneficiaries with Alzheimer's will increase by 55 percent--
from $32 billion to almost $50 billion. And that is before the baby 
boomers enter the age of risk. Imagine what will happen to Medicare 
when 14 million baby boomers have Alzheimer's disease.
    The outlook for Medicaid is just as grim. For 16 years, I 
represented long term care providers here in Washington. More recently, 
I ran one of the oldest and largest long term health care systems in 
the country. I can tell you that these systems are already full of 
people with Alzheimer's disease. Nearly 60 percent of residents of our 
nursing homes--and perhaps as many in assisted living--have dementia. 
They are already straining capacity to the breaking point.
    We need to work as hard as we can to provide more options for 
people to stay at home with their families as long as they can. But 
eventually most people with Alzheimer's disease will need full time 
care that is beyond the ability of families to manage on their own. If 
we let 14 million babyboomers get to that point in Alzheimer's disease, 
we will be building nursing homes on virtually every street corner in 
America.
     The cost of that long term will bankrupt families first. And then 
it will bankrupt Medicaid. Within 10 years, Medicaid's share of the 
annual nursing home bill for people with Alzheimer's will increase by 
80 percent--from $18 billion to $33 billion. If I were a Governor, I 
would be beating down the doors of Congress demanding the funds for an 
all-out assault on Alzheimer's disease.
     If I were a corporate CEO, I would be here urging you to act, 
because Alzheimer's disease is extracting heavy costs from American 
business as well. In 2002, that cost was $61 billion--the majority of 
it the result of lost productivity of workers caring for people with 
the disease. That was the equivalent of the profits in 2002 of the top 
10 Fortune 500 companies. And it was almost twice as much as the 1998 
estimate of a $33 billion cost to business.
       there is a clear game plan to conquer alzheimer's disease
    We still have time to mount a successful offensive against 
Alzheimer's disease. The Alzheimer's Association has laid out a clear 
game plan in this National Program to Conquer Alzheimer's Disease, 
which I would like to offer for the record.
    Part of that game plan calls for changes in Medicare to focus a 
chronic care benefit that will keep people out of hospitals, emergency 
rooms, and nursing homes. This will help hold down increases in 
Medicare and Medicaid costs somewhat, and we are discussing this with 
the appropriate Committees of jurisdiction. But the only real way to 
save Medicare and Medicaid, and to get health care spending under 
control, is by reducing the numbers of people who need expensive care--
and that will come only through research.
    That is why we are calling on Congress to provide an immediate 
increase in appropriations for Alzheimer research of at least $200 
million. With such an increase, Dr. Hodes and his colleagues at the 
National Institutes of Health will have the resources they need to 
maintain the momentum of Alzheimer research--to find effective ways to 
prevent and treat Alzheimer's disease while there is still time to make 
a difference. That level of funding will keep research flowing rapidly 
through the pipeline from basic science through clinical trials. It 
will also provide funds for the imaging and genetics initiatives that 
will get us to prevention and treatments faster, better, and in the 
long run, cheaper.
    Dr. Hodes and Dr. Albert are here to explain the science to you. I 
want to underscore the cost. Each new clinical trial of a potential 
prevention will cost at least $25 million--but those trials are the 
only way to get discoveries out of the lab and into the practice of 
medicine. The imaging and genetics initiatives will each cost an 
estimated $60 million. It will take another $29 million to fund just 10 
percent more of the most promising peer reviewed investigator initiated 
projects. The National Institute on Aging is aggressively recruiting 
private industry as full collaborators, and the Alzheimer's Association 
will commit all of the funds we can. But there is no way to solve the 
puzzle of Alzheimer's disease without the leadership, the influence, 
and the resources of the federal government, through the National 
Institutes of Health.
                      this is a race against time
     Budget procedures and politics encourage Congress to think one or 
two years at a time. So why the rush about Alzheimer's, some might ask? 
If the real explosion of people with the disease is still at least 10 
years away, can't we put this off for a while and focus on other urgent 
priorities now?
    Wrong! We know now that the damage to the brain that causes 
Alzheimer's starts 10, maybe 20, years before clinical symptoms appear. 
That means, Senators, that if you or I or any of your colleagues is 
destined to get Alzheimer's, something is already going on in our 
brains. The disease is already at work. That means we have to find the 
answers now. Ten years from now, it may be too late to save another 
generation. Ten years from now, it may be too late to save our health 
care system.
    Our nation is facing huge challenges today--rising budget deficits, 
the war in Iraq, continued threats to our homeland security. We 
understand that this is a time when Congress has to make tough choices 
and set clear priorities. It is a time that demands personal sacrifice 
and postponed agendas.
    It is also a time that requires leadership--leadership to make sure 
that we confront our most urgent domestic problems. In his State of the 
Union message, President Bush issued a challenge to Congress and the 
nation:

    ``We will not deny, we will not ignore, we will not pass along our 
problems to other congresses, to other presidents and to other 
generations . . .'' he said.

    Yet that is exactly what we will do if we do not find a way to stop 
Alzheimer's disease now. If we fail, then our health care system will 
implode, and Alzheimer's will be the detonator. We pay now, or we leave 
other congresses, other presidents, other generations to pay much more 
later.

    Senator Specter. We will now begin the rounds of Senators' 
questioning, 5 minutes.
    Dr. Hodes, you have emphasized in both your written and 
oral testimony the impact of stem cell research. Focusing for 
just a minute on nuclear transplantation, which is the effort 
to be sure that the donor receives stem cells which are 
consistent with his own DNA, to what extent is that 
experimentation important on conquering Alzheimer's?
    Dr. Hodes. Well, I think at this point, until experiments 
are done in additional related areas we do not know the final 
answer. The point you make is an important one, that it may be 
critical to derive a source of stem cells that are genetically 
identical to the individual being treated and, as we know, 
there are a number of potential sources for that.
    One of them is adult stem cells which show certain 
potential for differentiation. We do not know, as yet, whether 
this will completely satisfy all the requirements, ultimately, 
for optimal intervention or not. An alternative is to use a 
technique such as nuclear transplantation to generate such 
cells from each individual, and until we have experimented with 
the alternative approaches, we do not know which will be 
successful, we do not know which will be preferable.
    Senator Specter. But you want to maintain the open door for 
experimentation with all the available alternatives.
    Dr. Hodes. I think that the more alternatives we are able 
to pursue, the greater the probability of our finding a 
successful strategy.
    Senator Specter. Dr. Albert, you make a comment about 
patents impeding research. Protection of patents is obviously 
important for those who invest substantial money, but I am 
concerned about patents impeding research, and the thought goes 
through my mind that it is contrary to public policy to have 
property interests which are impeding research where people 
with those patents are not cooperative, especially with NIH, or 
really with others, on a research line in some way where 
profits could be protected, investment property interests could 
be protected.
    Do you have any suggestion as to what might be done to 
facilitate research and still respect patent interests?
    Dr. Albert. The animal model consortium that I mentioned is 
one way in which we can go about this. This represents a group 
of individuals from foundations, from the Alzheimer's 
Association, from the pharmaceutical companies who have formed 
a company, and the company is the one that is going to 
underwrite the development of these animal models.
    Senator Specter. Are there some patent holders who are 
recalcitrant and unwilling to enter into cooperative ventures 
to promote research?
    Dr. Albert. I think it is more related to the institutions 
that they are at. In some ways, these were problems that we did 
not foresee a few years ago, and when some of the animal models 
were developed the patents were obtained by their institutions 
and they feel very strongly about not releasing them.
    Senator Specter. I would appreciate--and I do not mean to 
interrupt you, but I want to cover some questions, and each of 
us is limited to 5 minutes, including the chairman, and I 
intend to observe the rules meticulously. I would appreciate it 
if you would supplement your oral testimony by particularizing 
what is happening in the patent field and where we ought to 
look further. Congress can legislate on this subject, and we 
want to respect property interests, but we also do not want 
research to be impeded, so if you would supplement your oral 
testimony, we would appreciate that, because we would like to 
clear the way for this important research.
    Dr. Albert. I would be happy to do that, Senator.
    [The information follows:]

    Question. How do patents get in the way of research on Alzheimer's 
disease?
    Answer. The patent process is an important motivator for the 
development of new products and treatments for Alzheimer's disease. 
That is not what we are talking about here. The real issue is whether 
patents or other mechanisms prevent access by researchers to the 
fundamental knowledge necessary to advance our understanding of 
Alzheimer's disease. For example, when animal models or tissue samples 
containing genetic information are protected by intellectual property 
rights or subject to complicated material transfer agreements, the 
material may be available to other researchers only at prohibitive cost 
that drives up the cost of research and delays discovery.
    Progress in Alzheimer's disease demands the rapid and unimpeded 
transfer of information and research tools among investigators and 
institutions. The National Institute on Aging has led efforts to 
stimulate and encourage cooperation, collaboration, and sharing among 
researchers and academic centers that has become the standard for 
Alzheimer research and a model for the larger scientific community. 
Here are two examples of efforts now in the early stages of 
implementation that are designed to assure that key information and 
research tools are broadly available to the Alzheimer research 
community without patents, claims of intellectual property rights or 
other mechanisms that would restrict or delay access.
    The first is the Genetics Initiative now underway under the 
leadership of NIA. We are quite certain that there are a number of 
genes implicated in Alzheimer's disease that have yet to be identified. 
The goal of this initiative is to identify the remaining risk factor 
genes, associated environmental factors, and the interactions of genes 
and the environment. Finding those genes requires large numbers of 
samples for genetic analysis, more than can be collected at any one 
research site. The NIA has established and is funding a National Cell 
Repository for Alzheimer's Disease and has awarded grants to at least 
seven academic centers to recruit families, collect clinical data and 
blood samples, and provide DNA and cell lines along with phenotypic 
data to the Cell Repository. No intellectual property rights will 
attach to any of the data and tissue collected. These sample sets will 
be freely available to qualified researchers and will serve as the 
``gold standard'' against which researchers could test their findings. 
The full cost of this Genetics Initiative is estimated at $60 million 
and will require additional support from Congress.
    A second area of interest is the development of animal models--key 
to speeding the search for effective clinical treatments. Basic science 
and results from epidemiological studies are identifying many 
candidates for potential treatments--more than we can afford to study 
in large scale human trials. A single prevention trial in humans takes 
at least 3 to 5 years and easily costs $25 to $30 million. By 
developing more effective animal models of Alzheimer's disease, it will 
be possible to test potential treatments faster and to identify the 
most promising candidates for human trials. All of that will get us to 
treatments faster, better, and cheaper. This strategy involves more, 
though, than just the development of animal models. It requires that 
the models, once developed, be broadly available to the Alzheimer 
research community. In the past, Material Transfer Agreements 
established by academic institutions where animal models originated 
have created administrative and financial barriers to broad 
utilization. The Alzheimer's Association is embarked on a very 
significant effort, with other private non-profit and industry 
interests, to establish a non-profit organization that is serving as a 
catalyst to bring together investigators working on animal models and 
to stimulate and support development of new models that would be freely 
available to the research community. This effort is undertaken in close 
coordination with the NIA. While the partners in this new organization 
will commit their own resources to support animal model research, it 
will take additional resources from Congress to the NIH to realize 
fully and rapidly the potential of this critical area of research.

    Senator Specter. Mr. Goldberg, you make a comment about 
Medicare and Medicaid being key expenditures, which I agree 
with you about. What I would like you to do--you have asked for 
$200 million more in research. I would like you to supplement 
your oral testimony by giving us a projection as to what $200 
million more would do by way of solving the Alzheimer's problem 
and how that would impact on Medicare and Medicaid 
expenditures. Now, that is very frequently an incentive for 
Congress to do things if you can save money at the end of the 
rainbow, and there is certainly a bigger avenue for saving.
    [The information follows:]

    Question. How soon will we have a cure for Alzheimer's Disease?
    Answer. The target of Alzheimer research is not so much a ``cure'' 
but rather effective prevention and treatments that can delay onset and 
progression of the disease. Those are targets that most scientists 
believe are well within reach within the next 10 years if we maintain 
the current momentum of Alzheimer research. Of particular note is the 
very exciting work now underway to test, in clinical trials, the 
amyloid hypothesis of Alzheimer's disease. This includes the well 
publicized trial of a potential vaccine against the production of 
amyloid--a trial that is still underway as investigators are working to 
modulate the adverse effects of the first configuration of the vaccine. 
The trials are already showing promising signs of the production of 
antibodies to amyloid and of the actual reduction in the formation of 
amyloid plaques. Another important trial is underway, testing 
inhibitors of the enzymes that make amyloid--the toxin in the brain 
that causes cell death.
    Other promising work continues on a wide range of compounds testing 
theories of inflammation, hormones, and cardiovascular risk factors as 
factors in the development and progression of Alzheimer's disease. All 
of this work is made possible by the continued advance in basic science 
funded by NIH.
    Scientists have modeled the impact of the two most likely products 
of this current research--the first, a compound that would delay onset 
of Alzheimer's for an average of 6.7 years; the second, a compound that 
would delay progression from mild to moderate/severe disease. (Right 
now, progression occurs at a rate of 28 percent annually; this model 
would slow progression to an annual rate of 10 percent.)
    If we can accomplish these dual objectives, then under this model, 
by 2050 we would see a nearly 36 percent reduction in the total number 
of cases of Alzheimer's disease. But of even greater significance--both 
for quality of life and cost to the health care system--the majority of 
cases--56 percent--would be mild Alzheimer's disease. This compares 
with current projections that, without such treatments, 63 percent of 
cases would be moderate to severe and require full time care.
    Question. If we provide an additional $200 million for Alzheimer 
research, how much can we save Medicare?
    Answer. The real cost of Alzheimer's disease to Medicare comes when 
dementia is overlaid on other common comorbid conditions among the 
elderly. For Medicare beneficiaries at any age, costs are three times 
higher among those who have cognitive impairments. But the difference 
in cost is most dramatic among those in the younger (65-74) age group--
4.2 times higher. As shown in the answer to the previous question, 
development of effective treatments to prevent onset and delay 
progression of Alzheimer's disease will significantly reduce the 
numbers with the disease and, of those who have the disease, the 
percentage with moderate to severe dementia. If we can accomplish this, 
then we may be able to reduce the adverse impact of dementia on the 
cost of treatment of other medical conditions.

    Senator Specter. A final question for you, Dr. Hodes. To 
the extent that you can specify, how close are we to a cure for 
Alzheimer's?
    For $663 million, ladies and gentlemen. I think that is a 
fair question.
    Dr. Hodes. And the fairest answer I can give, Senator, is 
that we are a good bit closer than we were only a short time 
ago. I do not mean to be difficult in not responding, but the 
ability to answer with precision just when we will arrive at a 
final solution is elusive. The course of science and the 
complexity of the disease makes it impossible to know, but as 
Dr. Albert has expressed, the overwhelming consensus in the 
field, in the research field, which I certainly share, is that 
the pace of progress over these past years has been dramatic. 
It is bringing us closer than any of us dared hope we would be 
only a few years ago.
    Senator Specter. My red light is on, so I will not ask any 
further questions, but to the extent the three of you could 
give us a projection on when we might cure Alzheimer's--and I 
know you cannot give us an absolute date, subject to increases 
in funding, that could motivate additional funding from the 
Congress.
    Senator Harkin.
    Senator Harkin. Thank you, Mr. Chairman.
    Dr. Albert, you spoke about the, now we know there is three 
different stages. At least you have broken it down into 
basically three different stages, and Dr. Hodes, you said that 
NIH is now supporting 18 clinical trials on Alzheimer's, seven 
of which are large-scale prevention trials. How long have these 
large-scale prevention trials been going on, and do you have 
any preliminary data from those that you might at least tell 
people they might do to prevent it now?
    Now, for example, a lot of people are doing things like, 
they are taking statins, ibuprofen, ginko biloba, vitamin E, 
doing daily crossword puzzles, all kinds of things that people 
are doing now to try to ward off dementia. Have you gotten 
anything from these trials yet that you could tell what people 
might want to think about doing that at least would not be 
harmful to them and might be helpful?
    Dr. Hodes. As I mentioned, Senator, the prevention trials 
really began less than 5 years ago, and by their nature will 
take in general 5 to 7 years to complete, so we do not have 
results from any of them as yet. There is as yet no positive 
result demonstrating conclusively the ability of any of the 
interventions which you mentioned which are under study to 
delay or prevent the development of disease.
    The very important question that you bring up concerning 
things which people ought to do because they help but cannot do 
any harm is a very important and reasonable question but a very 
difficult one to answer until research is completed. As long as 
we do not know the outcome of these trials, not only do we not 
know whether they will be successful, we also cannot be certain 
that they will not actually have adverse effects, and I think 
we have learned some disappointing lessons in that regard. For 
example, from the very widely publicized results of the women's 
health initiative, researchers are looking at the complexity of 
hormone replacement.
    So we would project by the nature and timing of the studies 
that over the next 3 to 4 years we will begin to see results 
from some of these prevention trials and whether they are 
effective or not. From that point, we will be able to plan 
subsequent studies in that direction.
    Senator Harkin. Have you done any kind of investigations 
into families where maybe one person had come down with 
Alzheimer's but a sibling had not, or a couple of siblings had 
not, and looked at variations in diet, how they lived, what 
they did, that type of thing? Have you looked at anything like 
that?
    Dr. Hodes. Yes. That is a very important kind of study to 
be done, to try to dissect both the genetic and the 
environmental risk factors for Alzheimer's disease, and family 
studies of this kind have been carried out. Some have led to 
the identification of genetic risk factors, others have shown 
environmental correlates or risk factors based on epidemiologic 
studies, and you have alluded to some of them. We do know that 
in general individuals who have more education are less likely 
to have disease and that individuals who have a history of 
certain drug exposures are less likely to have disease. We know 
that individuals with a history of head trauma are more likely 
to have disease. These are providing, then, clues as to the 
kinds of clinical trials and studies that can be done to see 
whether any of these correlations actually translate into true 
cause-and-effect relationships, and that can be done most 
conclusively only by clinical trials.
    Senator Harkin. I want to join with the chairman and just 
say that if you could give us a better idea of what that extra 
$200 million you are asking for will specifically go for, and 
how it might help shorten the time frame to find some of these 
answers, that would be very helpful.
    Dr. Hodes. Absolutely. Just to elaborate briefly on some of 
the questions and agents you have mentioned, in terms of diet, 
we know recently that risk factors for Alzheimer's disease 
include such things as high levels of homocysteine, untreated 
high levels of cholesterol. We know that there are drugs such 
as the statins, or folic acid and B-vitamins, that can correct 
these abnormal blood values.
    We know they have been studied rather extensively, for 
example, for the cardiovascular risk factors which they 
present, and studies which are now being initiated will 
similarly ask whether those very same interventions can delay 
onset and/or treat people already with symptoms.
    Senator Harkin. Thank you, Dr. Hodes. Thank you, Mr. 
Chairman.
    Senator Specter. Thank you very much, Senator Harkin. 
Senator Craig.
    Senator Craig. Well, to all of you, thank you very much. 
You bring us valuable information, and you make the case so 
dramatically well, and that is important for all of us to 
understand.
    Dr. Albert, talk to me about the kind of teaming you see 
that needs to come about that does not necessarily come about 
in an individualized community of interest. How do you 
accomplish that, and what do you expect it to yield?
    Dr. Albert. I think we already have examples of how to 
accomplish it, because in some respects the National Institute 
on Aging has established the infrastructure for this, so for 
example, for clinical trials there is a large infrastructure 
that involves 20 to 30 centers around the country that are 
collaborating on an individual clinical trial. It involves 
neurologists, psychiatrists, statisticians, neuropsychologists, 
and what makes it so costly is that it is very difficult to 
work across disciplines. You have to learn the language of the 
other person and, of course, just meeting and coordinating 
everything is very time-consuming and costly.
    It is clear that it is paying off, because the little that 
we do know about how to more effectively treat Alzheimer's 
disease comes from such clinical trials where there is this 
kind of integration, and that is the model that we are hoping 
for for the imaging initiative that both Dr. Hodes and I 
mentioned whereby radiologists and neurologists and 
statisticians and experts in just image acquisition would all 
work together and would share a common database, collect 
information collaboratively and then analyze it 
collaboratively.
    The unique aspect to that is that the plan is to have it be 
funded both jointly by industry and government, and so the 
pharmaceutical companies are also involved in helping to plan 
it so that they can get the kind of data that they think they 
most dearly need in order to evaluate drugs.
    Senator Craig. That only comes with increased dollars, or 
can you now and are you now doing that?
    Dr. Albert. It absolutely requires increased dollars. The 
estimated cost for the imaging initiative alone is $60 million, 
and my guess is that that is an underestimate, because we are 
talking about 20 to 30 centers around the country. We are 
talking about acquiring sophisticated imaging data on a large 
number of people, figuring out how to do it in a standardized 
way, evaluating it collaboratively across sites, so it is going 
to be very costly.
    Senator Craig. Thank you.
    Mr. Goldberg, your dramatic analysis of the impact on 
Medicare and, of course, Medicaid and States is real in all 
regards. I am spending a good deal of time looking at Medicaid 
now and prescription drugs, and how we adjust it to a dynamic 
health care system of the kind that we are obviously into, and 
one that is demonstrated by what you are here doing, and asking 
for today and doing.
    We are driving health care costs dramatically because we 
now can approach so many other things that we were unable to 
do. I had Alan Greenspan recently before the Committee on Aging 
simply because he looks at global aging as an impact on our 
culture, and cultures around the country, and he said, Social 
Security is easy to fix. It is relatively static and 
adjustable. Medicare is impossible for you to fix because you 
are trying to deal with a very dynamic industry.
    Now, having said that, your appeal is important, and 
obviously to arrive at a cure or a managed environment to 
disallow the impact of Alzheimer's on our more senior community 
would help a great deal, but I am also struck with the reality 
of trying to deal with other dynamics in that.
    If we only took those who are currently in Medicare and 
could discipline them to manage their health in a way, and I am 
talking about those with chronic illnesses, managed chronic 
illnesses, or those that can be managed and sustained and 
project life, we would reduce the cost of Medicare today by 
nearly 50 percent, and we could give them all of their health 
care free if they would comply simply with the protocol. We 
cannot do that. People won't do that. It is part of Senator 
Harkin's and my frustration about nutrition and health care and 
all of those kinds of things.
    I mean, there are some very interesting dynamics out there, 
but you do put your finger on an important one, and we are 
driving toward that. You are competing with a lot of other 
interests. We will do the best we can, but the reality of 
trying to adjust this payment system, if you will, to this very 
dynamic health care economy is one that I do not think we are 
up to the task as of yet because we cannot shape it in a way 
that we can control the cost, and that is something that 
Congress asked us to do.
    Thank you. Thank you, Mr. Chairman.
    Senator Specter. Thank you very much, Senator Craig.
    Senator Murray.

               OPENING STATEMENT OF SENATOR PATTY MURRAY

    Senator Murray. Thank you, Mr. Chairman, and thank you to 
you and Senator Harkin for your tremendous bipartisan work on 
funding research at NIH. It has made a tremendous difference, 
and I really appreciate your having this hearing and your 
continued advocacy for that.
    I would like to thank everyone who is here today to remind 
all of us with all of what is going on in the world today there 
are people who are dealing with this serious illness in their 
families every single day, and how important it is for us to 
continue to fund the research.
    I did want to ask the panelists, because all of you have 
mentioned genetic work on this, and one of the most promising 
breakthroughs in understanding the disease and seeking 
treatment options has been the discovery of a possible genetic 
link that could lead to early diagnosis and treatment, but I am 
concerned that the development of genetic testing could be 
hindered by a lack of protection against discrimination in 
employment and insurance.
    If an employer knows that a worker could be predisposed to 
Alzheimer's disease they could use that information to deny 
future employment or advances or exclude them for insurance 
coverage, and we are going to be marking up a tough bill on 
genetic discrimination in the Health, Education and Labor 
Committee sometime here in the near future, and I wondered if 
any of you wanted to comment on how important genetic 
nondiscrimination legislation is for your research.
    Dr. Albert. Well, there is no question that everybody who 
is involved with genetic research is very concerned about 
confidentiality. At all the medical centers that I know there 
are special consent forms that need to be signed if anyone is 
in a genetic study that is separate from the consent form for 
the rest of the study.
    We lay out for individuals how concerned we are about 
confidentiality, and how careful we are, but we also point out 
to them that right now there are concerns that there would be 
discrimination in the workplace, and we are very grateful for 
the legislation that you are proposing.
    Senator Murray. Dr. Hodes.
    Dr. Hodes. I would certainly reinforce what Dr. Albert has 
said. In particular with genetic disease, the issues of even 
informed consent take on a special meaning in that a given 
individual may consent to studies regarding his or her own 
genetics, but family members who may not be giving their own 
consent, are in the end unavoidably affected by the informed 
consent of any other family member. So in the end, I think it 
is only the kind of legal protection that you are working so 
hard to develop that really can be functional and will go 
beyond the ability of any single individual to make a decision 
about his or her own confidentiality.
    Senator Murray. Well, I hope we get your help and support 
in getting that through. It has been a long road, but I think 
it needs to be done, so I appreciate that. We have had a lot of 
conversation today about the amount of money needed for 
research, and Mr. Goldberg was very clear that we need to find 
an answer to this disease because of the cost on Medicare and 
Medicaid, but at the same time there are thousands if not 
millions of families who are dealing with it every single day.
    Alzheimer's is not a disease that just affects one person. 
It affects everyone around them and their ability to be able to 
be productive in their own lives, and Senator Mikulski, who is 
the ranking member on the Aging Subcommittee of the HELP 
Committee, has been really working hard to expand efforts on 
family caregiver support as part of the Older Americans Act, 
and I wanted to, just because I think it is so important, if 
you would comment on how important these kinds of services are 
to patients and families, and is there anything else we should 
be doing to help support families?
    Mr. Goldberg. Maybe I could comment. I think there is a 
tremendous amount of things that could help support families. 
We have a plan, obviously, to look at the Medicare program and 
to provide as much support to provide services in the community 
and in the home. Much of our programs of funding are really 
much more geared towards hospitals and nursing homes and other 
types of institutional environments. We need to structure 
everything possible to keep people as independent in their own 
homes as long as possible. The act of providing care on the 
caregiver is an exhausting task, so anything that can be 
created to provide relief, some respite care, fund day care 
programs, alternative types of services to people is vitally, 
vitally important, and so we would urge you, everything you can 
possibly do to do this.
    My issue with the issues of Medicare and Medicaid is that I 
believe, I as a provider, that it is Alzheimer's which is 
driving the cost, especially for long term care. Our 
institutions are filled with people who suffer from 
Alzheimer's. Many people with multiple chronic disabilities 
remain in their own home much easier, but once the Alzheimer's 
really reaches a severe stage, they really lose that 
opportunity. That is why I would argue so strongly for the need 
for research to eradicate this disease, but I would argue also 
that we need to find every possible way to support people in 
their own homes.
    Senator Murray. Not at the expense of helping the families 
who deal with this----
    Dr. Hodes. That is correct. I would only add that as much 
as we emphasize the research, epidemiologic, biologic, 
molecular, that's important to understand and approach the 
causes of Alzheimer's disease, so just as you note, research 
must be directed at present to identifying the stress upon 
caregivers. It is important to look at ways to reduce that 
stress and so to increase the quality of life for those 
afflicted and their families. Indeed, there are clinical trials 
ongoing to look particularly at novel and innovative mechanisms 
for reducing caregiver stress and providing environments that 
enable people to live the life----
    Senator Murray. Such as? Can you give us an example?
    Dr. Hodes. Well, the first phase of a study called REACH, 
which was a multicenter study designed to look at nine 
different intervention components for reduction of stress has 
now been completed, and on the basis of that first study has 
led to a second generation, if you will, REACH II, which has 
taken the most promising components of these several studies 
into a clinical trial. It includes such things as providing 
respite care and looking at the new communications modalities 
such as the World Wide Web to provide resources, information 
and support for individuals.
    Senator Specter. Dr. Hodes, would you complete your answer 
in writing? We have six more witnesses, and we are going to 
have to conclude this hearing by 11.
    Senator Murray. Thank you, Mr. Chairman. I know my time is 
out, and I would love to hear more, because I think we have to 
pay attention to the families who are taking care of these 
people as well. Thank you.
    Senator Specter. I quite agree, Senator Murray. If you 
would supplement your oral answers in writing, we would 
appreciate that.
    [The information follows:]

    The multi-site Resources for Enhancing Alzheimer's Caregiver Health 
program (REACH II) was funded in September 2001. It is designed to test 
a single multi-component intervention to enable care-givers to learn 
and use cognitive and behavioral strategies, to impact both care 
recipient behaviors (e.g. wandering) and their own behaviors (e.g., 
managing stress). It will (1) identify and reduce modifiable risk 
factors among caregivers, (2) enhance the quality of care, and (3) 
enhance the well-being of caregivers. This 3-year renewal builds on the 
results of REACH I, a multi-site feasibility study. The ultimate 
objective is to translate findings into materials and programs that are 
readily useable in the community of caregivers. The study will also 
evaluate the cost effectiveness and public health significance of the 
intervention.

    Senator Specter. I would like to call our next panel now, 
Mr. Dwayne and Ms. Mary Jean Uptegraph, Mr. Donald Kurtz, Mr. 
Mike Martz, and Mr. Terrell Owens.
STATEMENT OF MARY JEAN AND DWAYNE UPTEGRAPH, DUBUQUE, 
            IA
    Senator Specter. We begin with Mr. Dwayne Uptegraph, who 
was diagnosed with Alzheimer's disease in December 1999, 1 week 
before his 53rd birthday. Prior to that diagnosis, he was an 
art teacher for 31 years and coached football and basketball at 
Jefferson Junior High School in Dubuque, Iowa, a graduate of 
Upper Iowa University.
    Mrs. Uptegraph recently retired from her job at a 
radiologist's office to spend more time with her husband. They 
have been married for 35 years and have three children and four 
grandchildren. Thank you for joining us, Mr. and Mrs. 
Uptegraph, and Mrs. Uptegraph, the floor is yours, and we look 
forward to your testimony.
    Ms. Uptegraph. Thank you very much, Senator Harkin, Senator 
Specter, for giving us the opportunity to testify this morning. 
We are truly honored to be here this morning representing the 
Greater Iowa Chapter of the Alzheimer's Association.
    As you stated, my name is Mary Jean Uptegraph, and I am 
here today with my husband, Dwayne, our daughter, and our 5-
year-old granddaughter. The four of us have traveled to 
Washington from Dubuque to ask you to please do everything you 
can to increase the funding for Alzheimer's research so that a 
cure or prevention can be found as soon as possible.
    Our plea for increased research funding comes from the 
heart. Dwayne has Alzheimer's disease. He was diagnosed in 
December of 1999, 1 week before his 53rd birthday.
    Dwayne graduated from Upper Iowa University in 1969 and we 
moved to Dubuque shortly after that so he could start his 
teaching career. He taught art at Jefferson Junior High for 31 
years, and for 26 of those years he coached football, 
basketball, and track. Together, we raised three wonderful 
children, Todd, Kristine, who is here with us today, and 
Gretchen. Our children have blessed us with four amazing 
grandchildren who range in age from 6 months to 6 years, and we 
are looking forward to the arrival of our fifth grandchild in 
May.
    Our story starts like many others have. Dwayne started to 
misplace things around the house, and one day he got lost while 
driving the 5 miles between our house and the school he taught 
at, the same route he had driven for 30 years. He also started 
misplacing things such as the art supplies and student 
assignments in his classroom.
    After talking with the principal at the school, we went to 
the local internist, who performed several tests. Dwayne was 
then sent to a neurologist, where he underwent an MRI, a spinal 
tap, which there confirmed the presence of the ApoE gene that 
has been linked to Alzheimer's. He also went through a full 
battery of verbal and psychological testing.
    Dwayne's neurologist immediately started him on the 
medication for his anxiety and large doses of vitamin E, in 
addition to one of the four available Alzheimer drugs. He has 
since added B6, B12, folic acid, and aspirin to see if this 
does help. We informed Dwayne's principal, and the decision was 
made to let him finish out the remainder of the school year. 
The principal and Dwayne's coworkers were very supportive and 
understanding. He retired from teaching in June 2000 after 31 
years.
    I continued to work in the local radiology office, and we 
did a lot of planning for the future. We wrote our wills, 
signed a power of attorney, and we attended a few of the 
Alzheimer Association conferences and educational programs. We 
participated in the Memory Walk to help raise money for local 
programs and services.
    Dwayne began volunteering in the art department at our 
neighborhood elementary school. It helps keep him both mentally 
and physically active. While he really enjoys his time in the 
classroom, there are moments that are frustrating for him. 
Dwayne spent his entire career as an educator. Today, he cannot 
provide the right answer when a fourth grader asks him to help 
with the spelling of a common word.
    We have made additional changes in the last few months to 
spend more time together as a family and to accommodate 
Dwayne's needs. In December, I retired after 19 years of work. 
It had just become too difficult for me to hold down a full-
time job and give Dwayne the support he needed. Dwayne sees his 
neurologist every 6 months, and he also visits a memory 
therapist once a month who helps him with his recall and 
thought process.
    Senator Harkin, we are here today to ask you and Senator 
Specter for your understanding leadership in the fight against 
Alzheimer's disease, and to support your efforts to increase 
the funding. We need to stop this disease while we still have 
the chance. Dwayne's father died with Alzheimer's. Dwayne and I 
are worried that we have passed this disease on to our children 
and grandchildren.
    We know that the scientists are on the verge of finding 
ways to prevent and treat Alzheimer's, and the actions Congress 
takes today may save future generations from this terrible 
thief that steals memories, disrupts careers, and affects 
millions of families. We are scared for the future, but 
grateful for our supportive family and the good life we have 
had so far. We want to do everything we can to raise the 
awareness about the disease and the need for research funding. 
On behalf of our entire family, we thank you for giving us the 
opportunity to share how Alzheimer's disease has affected our 
lives.
    In closing, we would like to read a short letter that our 
grandson, Noah, has written to Senator Harkin. We brought this 
letter with us today and ask that it be entered into the 
congressional record as a part of the testimony:
    Dear Senator Harkin, I hope my grandpa can get better. He 
is an artist and we draw pictures together. I hope you can help 
him. Love, Noah Goebel.
    Dwayne has just a short couple of phrases he would like to 
express today.

                           prepared statement

    Mr. Uptegraph. I have a hard time expressing myself, but I 
am here today to ask you for your help. I pray that a drug will 
soon be found to help me and everybody else who has this 
disease. Thank you.
    [The statement follows:]
          Prepared Statement of Mary Jean and Dwayne Uptegraph
    Thank you very much Senator Harkin and Senator Specter for giving 
us the opportunity to testify this morning. We are truly honored to be 
here, representing the Greater Iowa Chapter of the Alzheimer's 
Association.
    My name is Mary Jean Uptegraph and I am here today with my husband 
of 35 years, Dwayne, our daughter and five-year old granddaughter. The 
four of us have traveled to Washington from Dubuque to ask you to 
please do everything you can to increase funding for Alzheimer research 
so that a cure or prevention can be found as soon as possible. Our plea 
for increased research funding comes from the heart--Dwayne has 
Alzheimer's disease. He was diagnosed in December 1999, one week before 
his 53rd birthday.
    Dwayne graduated from Upper Iowa University in 1969 and we moved to 
Dubuque shortly after that so he could start his teaching career. He 
taught art at Jefferson Junior High for 31 years. For 26 of those years 
he coached football, basketball and track. Together we raised three 
wonderful children, Todd, Kristine (who is here with us today) and 
Gretchen. Our children have blessed us with four amazing grandchildren 
who range in age from 6 months to 6 years. We're looking forward to the 
arrival of our 5th grandchild in May.
    Our story starts like many others. There were signs and symptoms 
that I overlooked for about 18 months before we finally sought help 
from a doctor. Dwayne started misplacing things around the house and a 
few times he got lost driving to familiar places in Dubuque. One day he 
got lost while driving the five miles between our house and his 
school--the same route he had driven for 30 years. During that episode, 
he pulled over to call me for directions but couldn't remember how to 
dial the phone. He had also started misplacing things, such as art 
supplies and student's assignments, in his classroom. His principal 
called me because Dwayne was starting to have anxiety attacks at 
school. He would get very upset and agitated every time he misplaced 
something in his classroom. The principal also told me that Dwayne was 
having a lot of trouble learning the school's new computerized grading 
system. Around the same time, we went on a family vacation to France. 
Dwayne became very anxious and confused when we visited some of the 
main attractions that were crowded with large groups of tourists.
    After returning to Iowa, we went to a local internist who performed 
a lot of tests. Dwayne went through a full battery of verbal and 
psychological testing. He saw a neurologist and underwent an MRI and a 
spinal tap which confirmed the presence of the ApoE gene that has been 
linked to Alzheimer's. He underwent more tests . . . I honestly think 
he went through every medical test in the book! About six weeks after 
we started all of the tests he received the diagnosis of Alzheimer's. 
We were in total shock. Dwayne's neurologist immediately started him on 
medications for his anxiety and large dose of Vitamin E and Vitamin B6, 
in addition to one of the four available Alzheimer drugs.
    We told Dwayne's principal and the decision was made to let Dwayne 
finish the remainder of the school year. The principal and Dwayne's 
coworkers were very supportive and understanding. At the time, Dwayne 
had a student teacher who provided day-to-day help. Dwayne retired from 
teaching that June after 31 years in the classroom, several years 
earlier than he had originally planned.
    We slowly began to adjust to our changed lives. I continued to work 
as a billing specialist in a local radiologists office. We did a lot of 
planning for the future. We wrote our wills and signed a Power of 
Attorney so that I can make health care and legal decisions for Dwayne 
as the disease progresses. We saw an advertisement for the Alzheimer's 
Association in the local newspaper and went to a few of their 
conferences and educational programs. We participated in the 
Alzheimer's Memory Walk to help raise money for local programs and 
services. Dwayne began volunteering in the Art Department at the local 
elementary school. He still volunteers every day from 8:00 a.m. to 3:00 
p.m. It helps keep him both mentally and physically active. While he 
really enjoys his time in the classroom there are moments that are 
frustrating for him. Dwayne spent his entire career as an educator. 
Today he can't provide the right answer when a fourth-grader asks for 
help spelling a common word.
    We've made additional changes in the last few months to spend more 
time together as a family and to accommodate Dwayne's needs. In 
December, I retired after 19 years at my job in the radiologist's 
office. The decision to retire was tough but it had become too 
difficult for me to hold down a full time job and give Dwayne the 
support he needed. Dwayne sees his neurologist every six months. During 
these visits, Dwayne undergoes verbal and mental testing to track how 
quickly his Alzheimer's is progressing. He also visits a memory 
therapist once a month who helps him with his recall and thought 
processes. Dwayne needed to be driven to all of his appointments 
because he had given up his car keys about 18 months after being 
diagnosed. In addition, I had begun to worry about Dwayne's safety. He 
was still able to use the stove but no longer mowed the lawn. And I was 
very concerned about what Dwayne would do once the school year, and his 
volunteer commitment, ended. He would be home alone while I was at work 
all day. Retirement seemed to be the best option for both of us.
    Senator Harkin, we're here today to thank you and Senator Specter 
for your outstanding leadership in the fight against Alzheimer's 
disease and to support your efforts to increase research funding. We 
need to stop this disease while we still have the chance. Dwayne's 
father died of Alzheimer's. My grandmother and an aunt both suffered 
from dementia. Dwayne and I worry that we have passed this disease on 
to our children and grandchildren.
    We know that scientists are on the verge of finding ways to prevent 
and treat Alzheimer's and that the actions Congress takes today may 
save future generations from this terrible thief that steals memories, 
disrupts careers and affects millions of families. We're scared for the 
future but grateful for our supportive family and the good life we've 
had so far. We want to do everything we can to raise awareness about 
the disease and the need for research funding. We've asked about 
getting Dwayne into several research trials but he has a kidney disease 
and the doctors say he's not a good candidate for most of the studies.
    On behalf of our entire family, we thank you for giving us the 
opportunity to share how Alzheimer's disease has affected our lives.

    Senator Specter. Thank you very much, Mr. and Mrs. 
Uptegraph. Thank you, Mr. Uptegraph for sharing those thoughts 
with us. We know it is not easy for you in any respect, and 
thank you, Mrs. Uptegraph for your testimony and for your care 
for your husband, and for the model which you are setting for 
so many million Americans. Thank you.
STATEMENT OF DONALD KURTZ, BLUE BELL, PA
    Senator Specter. We now turn to Mr. Donald Kurtz, who was 
diagnosed with early onset Alzheimer's disease in August 2001 
at the age of 57. He had spent over 30 years in the financial 
services industry, currently volunteers at a local 
rehabilitation center, and is active at the local Alzheimer's 
chapter early onset support group, graduate of West Point, 
served as an air observer in the Vietnam War, four children, 
two of whom are still in college. He resides in Blue Bell, 
Pennsylvania. Thank you for joining us, Mr. Kurtz, and we look 
forward to your testimony.
    Mr. Kurtz. Thank you, Senator Specter. Good morning, 
Senator Specter and Senator Harkin. I am honored to be here 
today representing the great State of Pennsylvania and the 
Delaware Valley Chapter of the Alzheimer's Association. My name 
is Donald Kurtz. I sit before you as a devoted father of four 
children, a proud graduate of West Point, and as a 59-year-old 
man with Alzheimer's disease.
    I am aware that on the outside it does not appear that 
there is anything wrong with me. Maybe I remind you of someone, 
a friend, a neighbor, perhaps even a colleague. Twenty months 
ago I was a lot like you and your colleagues. I was at the top 
of my professional career at a leading financial services firm, 
supporting my family and awaiting hefty tuition bills for 
talented children who were about to attend two of this 
country's top universities.
    Then a neurologist delivered the news that changed my 
life--Alzheimer's disease. It was August 2001. I was 57 years 
old. While the diagnosis itself was a shock, it did provide an 
explanation for the memory problems I had been experiencing for 
approximately 2 years. When I was in my midfifties I started 
losing my keys and then my glasses on a regular basis. I came 
home from work one night, pulled my car into the garage, and 
left the engine running. I was constantly leaving my keys in 
our front door or in the mailbox.
    My family started to notice my behavioral changes, and my 
daughter suggested seeing a neurologist. The neurologist 
examined me and we discussed the possibility of Alzheimer's 
disease, but the neurologist concluded that I was not in the 
right age group for my symptoms to be explained by Alzheimer's. 
However, after a battery of tests, an interview with the 
psychiatrist, and an MRI, the neurologist concluded that I did 
have Alzheimer's disease.
    The economic devastation, especially at this young age, is 
one for which I was unprepared. My family needed my financial 
stream to pay for university tuition and expenses. My eventual 
in-home care and final institutionalization was never planned 
for, nor in my budget. As our Alzheimer's population continues 
to grow, we will not be able to support the residential needs 
of this growing population. Today, 10 percent of 65-year-olds 
have Alzheimer's disease, and if we live to the age of 85, 50 
percent of us will have Alzheimer's disease. How will we 
accommodate the needs of this population?
    Despite being knocked down in the prime of my life I never 
adopted a negative attitude or asked, why me? Instead, I 
thought back to my West Point training and decided that I would 
fight back. I made the decision to speak out, to be up front 
with people, and to do whatever I could do to educate people 
about Alzheimer's disease and the impact it has on individuals 
and families when it strikes so young.
    I contacted my local chapter of the Alzheimer's Association 
and joined an early onset support group. I met peers who were 
experiencing the same problems I was, the lack of services and 
systems to support younger people with Alzheimer's. One of the 
men in my support group who could no longer drive had to drop 
out of a local art therapy program because he did not meet the 
age requirements of the available transportation assistance 
programs.
    Today, I am under the care of two excellent neurologists at 
the University of Pennsylvania Medical Center and the Ralston 
House Memory Disorders Clinic. I am active in my Alzheimer's 
support group and I volunteer 2 days a week at the Chestnut 
Hill Rehabilitation Center. I tell the patients I have 
Alzheimer's disease, which brings them very close to me. I know 
how fortunate I am. I have a loving family, I have Roz, my care 
partner and the woman who has been by my side throughout this 
entire journey. She is here with me today.
    Senator Specter, I served as an air observer in Vietnam 
from 1967 to 1968. I know what war in Iraq will mean for the 
women and men who have responded to their Nation's call, and 
for their families at home. I participated in 51 missions in 
Vietnam. Today, I am on one single mission to urge Congress to 
increase the Federal Government's investment in research.

                           prepared statement

    Some may say that in a time of war we have to put off other 
things we would like to do, but I am here in Washington to send 
the message that we cannot abandon our most urgent priorities 
at home. One of these is the fight against Alzheimer's disease. 
We must win this fight, not just for me and the more than 20 
other individuals in this room, but for my children, 
grandchildren and for yours.
    I thank you for your steadfast leadership on behalf of the 
Alzheimer's cause, and for the honor of appearing here today.
    [The statement follows:]
                   Prepared Statement of Donald Kurtz
    Good morning Senator Specter and Senator Harkin. I am honored to be 
here today representing the great state of Pennsylvania and the 
Delaware Valley Chapter of the Alzheimer's Association.
    My name is Donald Kurtz. I sit before you as a devoted father of 
four wonderful children, as a proud graduate of West Point Military 
Academy and as a 59-year old man with Alzheimer's disease.
    I am aware that on the outside, it does not appear that there is 
anything wrong with me. Maybe I remind you of someone--a friend, a 
neighbor, perhaps even a colleague. Twenty months ago I was a lot like 
you and your colleagues. I was at the top of my professional career, in 
a senior leadership position at a leading financial services firm, 
supporting my family and awaiting hefty tuition bills for talented 
children who were about to attend two of this country's top 
universities. Then a neurologist delivered the news that changed my 
life--Alzheimer's disease. It was August 2001 and I was 57 years old. I 
still remember what I did after I left the doctors office that terrible 
day. I went to the gym and got on the treadmill thinking that if I got 
the blood rushing to my brain, I could start to slow down the progress 
of the disease.
    While the diagnosis itself was a shock, it did provide an 
explanation for the memory problems I had been experiencing for 
approximately two years. When I was in my mid-50's, I started losing my 
keys and then my glasses on a regular basis. One day I drove into 
Center City Philadelphia and left my car in a public parking garage 
with the engine running all day. Not long after that, I came home from 
work one night, pulled my car into our garage and again, left the 
engine running. I was constantly leaving my keys in our front door or 
in the mailbox. My neighbor would return them to me and say ``looks 
like you've done it again, Don.''
    My family noticed the strange behavior too. When my kids were 
growing up we always played games together. One day I sat down to play 
Backgammon with my daughter, like I had done hundreds of times before. 
Only this time I couldn't remember how to set up the board. Not wanting 
to worry my daughter, I brushed off the lapse by explaining that I was 
just tired. Another time I was playing Scrabble with my other daughter 
and I couldn't add up the points for the simple four or five letter 
word that I had spelled. My daughter immediately knew that something 
was wrong and made an appointment for me to see a neurologist.
    The neurologist examined me and we discussed the possibility of 
Alzheimer's disease. But the neurologist concluded that I wasn't in the 
right age group for my symptoms to be explained by Alzheimer's. 
However, after a battery of tests, an interview with a psychiatrist and 
an MRI, the neurologist concluded that I did have Alzheimer's disease.
    The news was devastating to my family and friends. I chose to write 
a letter to my supervisor at work, explaining that I had early-stage 
Alzheimer's disease. My supervisor was shocked but supportive. At the 
time, I was a first vice president in the local office of one of the 
best-known global financial services firms. I had spent over thirty 
years within this industry only to have my dreams of continuing the 
work I loved come to a drastic halt.
    The economic devastation especially at this young age is one for 
which I was unprepared. My family needed my financial stream to pay for 
university tuition and expenses. My eventual in-home care and final 
institutionalization was never planned for and not in my budget. As our 
Alzheimer's population continues to grow we will not be able to support 
the residential needs of this growing population. Today, 10 percent of 
65 year olds have Alzheimer disease and if we live to the age of 85, 50 
percent of us will have Alzheimer's. How will we accommodate the needs 
of this population?
    Despite being knocked down in the prime of my life, I never adopted 
a negative attitude or asked, ``Why me?'' Instead, I thought back to my 
West Point training and decided that I would fight back. I made the 
decision to speak out, to be upfront with people and to do whatever I 
could to educate people about Alzheimer's disease and the impact it has 
on individuals and families when it strikes so young. I contacted my 
local chapter of the Alzheimer's Association and joined an early onset 
support group. I met other men with early onset Alzheimer's who were in 
deep denial about their diagnosis. I also met peers who were 
experiencing the same problems I was--the lack of services and systems 
to support younger people with Alzheimer's. One of the men in my 
support group who could no longer drive had to drop out of a local art 
therapy program because he didn't meet the age requirements of the 
available transportation assistance programs.
    I began to look for a way to stay active and give back to those who 
were worse off than I was. I started volunteering at Central Montgomery 
Medical Center, visiting sick patients, keeping them company and 
helping out at meal times. I also volunteered in a children's day care 
program at Montgomery County Community College.
    Today I am under the care of two excellent neurologists at the 
University of Pennsylvania Medical Center and at the Ralston House 
Memory Disorders Clinic. I see my doctors every six months. I'm active 
in my Alzheimer's support group and I volunteer two days a week at the 
Chestnut Hill Rehabilitation Center. I visit with the patients and 
comfort them when they are feeling bad. I tell them I have Alzheimer's 
disease. I love my volunteer work and am lucky that I get to spend time 
with such wonderful people. I am still driving but only in areas that I 
know very well. I gave my word to my doctors and family that I would 
not drive in unfamiliar cities or towns. However, I dread the day that 
I have to give up the car keys because among other things, it will mean 
that I can no longer do the volunteer work.
    I know how fortunate I am. I have a loving, supportive family. I 
have Roz, my care partner and the woman who has been by my side 
throughout this entire journey. She's here with me today. I enjoy 
spending time with my three grandchildren and like Dwayne and Mary Jean 
sitting next to me, am eagerly awaiting the birth of another grandchild 
in May.
    Senator Specter, I served as an Air Observer in Vietnam from 1967-
1968. I know what war in Iraq will mean, for the women and men who have 
responded to their nation's call and for their families at home. I 
participated in 51 missions in Vietnam. Today I am on a single 
mission--to urge Congress to increase the federal government's 
investment in Alzheimer research. Some may say that in a time of war we 
have to put off other things we'd like to do. But I'm here in 
Washington to send the message that we cannot abandon our most urgent 
priorities at home. One of these is the fight against Alzheimer's 
disease. We must win this fight not just for me and the more than 20 
other individuals with Alzheimer's in this room but also for my 
children and grandchildren and for yours. I thank you for your 
steadfast leadership on behalf of the Alzheimer's cause and for the 
honor of appearing here today.

    Senator Specter. Thank you very much, Mr. Kurtz. We know it 
is not easy to provide that testimony, but I think it is very 
important for people to hear real life experience, and we thank 
you, Mrs. Kurtz, for being at your husband's side.
STATEMENT OF MIKE MARTZ, COACH, ST. LOUIS RAMS
    Senator Specter. We now turn to Mr. Mike Martz, head coach 
of the St. Louis Rams. He has held that position since February 
2, 2000, before he was the team's offensive coordinator 
receiver's coach, designed the offensive strategy for the Rams' 
1999 Super Bowl win, and we all know what a dynamic offensive 
strategy that was, summa cum laude graduate from Fresno State, 
where he played tight end.
    Mr. Martz has become familiar to television viewers 
everywhere because the TV cameras always scan the coach on the 
sidelines to see the emotional reaction after a good play or a 
bad play. I have never understood why there was so much 
scanning. I can understand in your case, Mr. Martz, because you 
are so photogenic, but otherwise it is hard for me to 
understand why we see so much of the coaches and so little of 
the spectacular receivers like Terrell Owens.
    They never scan Mr. Owens because they make them keep their 
helmets on under the league rules. I can't understand that 
either.
    Well, onto the serious business at hand, Mr. Martz. We 
appreciate you joining us and look forward to your testimony.
    Mr. Martz. Thank you, Chairman Specter, and good morning 
Senator Harkin and Members of Congress here today. It is a real 
privilege for me to be here to offer this testimony. Like so 
many others in this room, I experienced the devastating effects 
of Alzheimer's. My mother had Alzheimer's the last 4 or 5 years 
of her life, and it slowly robs you of your mind, your dignity, 
and eventually your life, and we have to do whatever we can to 
stop this, and I am here today to ask you to provide whatever 
efforts that you can to help us stop this dreaded disease.
    Just a few moments, if I can, and I know that I am only 
allowed 3 minutes or so. I could talk to you all day about the 
effects of this and what it did to this family and to my 
mother, but my mother's name was Betty Martz. She raised four 
boys. Originally we had five in the family. The oldest one was 
killed in a car accident.
    My father left, and she was there with young boys that she 
had to raise on her own. She did not have a penny. She went to 
work. She is a professional lady. She became a coordinator of 
volunteers at Mesa Vista Psychiatric Hospital in San Diego, and 
she worked there for well over 20 years and did a terrific job. 
She was a very intelligent, very loving, and very caring 
person. She did not remarry. She elected to raise her four 
boys, and she spent the weekends, her free time back at the 
hospital providing care for the people at the hospital. We 
shared holidays with her patients that she cared for as well at 
home with the rest of the family.
    As she retired, she moved out next to my older brother a 
few miles away, Fritz, and she started to settle in at about 
age 70, 72 into retirement and enjoy her grandchildren and some 
of the success that we were beginning to have.
    Then, as usual, as you have heard so many times, things 
began to slip for her. She started to lose her memory. She lost 
her way out of the neighborhood. She had a hard time. She would 
turn the stove on to light a cigarette, would leave the stove 
on. We became very concerned. She was originally diagnosed with 
dementia. They said that the very best thing we could do for 
her was keep her in that environment. Well, my oldest brother 
then would have to be her caregiver. He was there every morning 
and every night after work, and it took a toll on him, as I 
know so many people in this room are aware of, and eventually 
this thing slid downhill.
    She had two dogs with her. She would have 20 or 30 cups of 
food out for these animals. Every salesman that came by the 
door she bought from, a new roof, it did not make any 
difference, whether it was encyclopedias, she bought, and my 
brother would have to go back and get the money back from all 
these things, and eventually--my brother ran a crew for the 
power company in San Diego. She would call him out in the field 
20 or 30 times a day. She would call him at night. She was 
scared to death that somebody was breaking into the house.
    This thing slid down so far that we just had to put her 
into some sort of a part-time care unit, and the only way she 
would go, because she refused to leave her home, is we took her 
living room and put it exactly in the room, just like it was at 
her house. My brother took her home while we did this, and then 
he brought her, and it worked. She did not realize that this 
was not her home.
    Well, she was there very briefly, probably 2 to 3 months. 
The doors were open. She would wander into other patients' 
rooms, and for whatever reason she would end up with some of 
their articles from that room in her room and they just could 
not have her there any more. She went downhill within 2 months. 
She went into a full-care unit.
    The last time that I saw her alive was in 1996. I was with 
the Redskins. It was right before the season started, and I 
went to visit her in the full-time care. It is a lockdown unit, 
and as I saw Mom and took her through the rose garden--she was 
an avid gardener. She loved to garden--she got down on her 
hands and knees and started to pull weeds out of the rose 
garden there. She was convinced that that was what she needed 
to do. She would pick up the twigs, and I would have to take 
them from her and explain to her each time who I was. She had 
no idea who I was.
    Finally, as I took her back to her room she stood at the 
door in her gown and she started to sob because she just knew 
that she needed to know me, she should know me, but she kept 
asking who I was, and I said, I am your son, Mike, and then as 
I told her I was going to leave, obviously she started to cry 
and said, Mike, can't you please take me with you. I could not 
take her with me. That was the last time I saw her alive.
    Fortunately, 6 months later, lung cancer did take her life 
so that she did not have to continue to suffer with 
Alzheimer's, and I saw her in a coma and she passed quickly, 
and I believe that that was a blessing.
    There are many things that she missed out on, that we 
missed out on as a family. She never saw my oldest son graduate 
from college whom she was so close to. She never got to 
experience my success as an NFL coach, or becoming a head 
coach, or the Super Bowls, or any of those things that were so 
important to her, and she was such a terrific football fan. She 
missed all of those things, and that is my biggest regret.
    The most devastating effect of this in my mind is to see 
someone so vibrant, so full of life slowly diminish, but there 
is one other aspect to this that has been touched on here 
today, and I would like to bring this up. My brother, if there 
is somebody in a family that has Alzheimer's, there is always 
somebody that is responsible for that individual, and that care 
goes on.
    My oldest brother was responsible. He was there day and 
night for her, provided constant care for her. Two years after 
she died, the stress of the 4 years, eventually he suffered a 
heart attack, and it is just absolutely brutal.
    I know that this is such a tragic disease that whatever we 
can do to stop this disease--I know that we talked about, 
listening in here today, how long will it take to cure it. I do 
not know how long it is going to take to cure it. All I do 
know, we have to do whatever it takes, and that is a term that 
we use with our players, and Terrell will know this.

                           prepared statement

    We have to do whatever it takes to stop this disease, 
because it will become, as these baby boomers approach that age 
it will become and is on its way to being a national tragedy. I 
would ask you to please not drop the ball on this thing. We can 
beat this disease. There is a tremendous game plan there in 
front of you. All we have to do is get your support and your 
commitment for this game plan and we can whip this disease, I 
know we can.
    The clock is running, ladies and gentlemen, and it is not 
going to stop until we cure it.
    [The statement follows:]
                    Prepared Statement of Mike Martz
    Good Morning Chairman Specter, Senator Harkin and distinguished 
members of Congress. I consider it a privilege to be here today. I am 
Mike Martz, beginning my fourth season as head coach of the St. Louis 
Rams. I share a common experience with others attending this hearing. 
I, too, have experienced first-hand the devastating affects of 
Alzheimer's. I watched my mother suffer from the disease for many 
years.
    As a coach, I firmly believe that an aggressive offense wins 
football games. As a son who watched his mother suffer, I strongly 
believe a strong offense by Congress is the only way we are going to 
beat Alzheimer's, the toughest opponent I have faced. Although life is 
far more precious than any football game ever played, I am here to give 
you the same message I give my players--take the ball and run. 
Together, as a team, we can beat this thing.
    Today I would like to take a moment to tell you about my wonderful 
mother, Betty Martz. She raised my four brothers and me mostly on her 
own. Ironically, she worked incredibly long hours in healthcare--as the 
volunteer coordinator at Mesa Vista Hospital in San Diego. She was a 
terrific woman, very energetic and someone everyone enjoyed meeting. 
She was incredibly strong, a trait you would expect ANY mother of FIVE 
boys to possess.
    We so looked forward to the day she retired as she would have time 
to finally relax and enjoy life. She elected to remain in her small, 
but comfortable home in San Diego with her two little dogs. Two of my 
brothers lived close and visited her often.
    Mom was just 68 years old, and really beginning to enjoy her 
retirement, when we noticed that she had become forgetful--unusually 
forgetful. I will always remember that day when her doctor diagnosed 
her with Alzheimer's. My first thoughts were that this only happens to 
someone else's mother, not my strong mom who had always been so 
healthy. After her diagnosis, Mom, the always independent woman, 
insisted that she stay in her home. She managed for a short time with 
visits from my brothers, however, she slid downhill quite fast.
    Though she had always kept a clean house, now somehow she forgot to 
do it. She stopped cleaning, and her home was in total disarray. She 
was still driving, but could not find her way out of the neighborhood. 
We had to disconnect her car battery to keep her home. She began having 
difficulty with her medications. She had one of those pill boxes 
labeled with the days of the week, but at times she would take 3 days 
worth of pills in one morning.
    Eventually, due to Alzheimer's, she was unable to care for her two 
small dogs. At one point, she had 20 bowls of food set out for them. 
Those tiny dogs blew up like balloons, but Mom did not notice. Mom, who 
was as brilliant a person as I have ever known, even began making 
absurd purchases from door-to-door salesmen.
    My brother Fritz was a superstar caregiver to our mother. Often, 
Mom would call him up to 20 times a day--so many calls for a man 
running a field crew for the power company. Sometimes she would call 
him at 3:00 in the morning to tell him about imaginary things that were 
happening to her. She would ask him to come over to protect her against 
imaginary demons.
    The years of caregiving were a huge drain on my brother--it took 
him two years to recover from the incredible the stress and strain of 
being her primary caregiver. Fritz was constantly there for her, but 
this disease nearly killed him--he suffered a heart attack as a result.
    After Mom could no longer manage on her own, we had to move her to 
a long-term care facility. By that point, she was running through all 
of her savings, and certainly would have gone through everything if 
cancer had not taken her life. As tragic as this may sound, the cancer 
seemed so much less harsh for Mom after having watched her fight the 
hopeless battle with Alzheimer's for so many years. You see, this 
disease robbed her of her life and her family.
    The difficult thing with Alzheimer's is dealing with something over 
which you have absolutely no control. With many other diseases, there 
is a glimmer of hope and you maintain the ability to communicate and 
cope as a family. With Mom, we lost that ability to communicate even on 
the most simple level. We lost the opportunities to laugh and share 
memories. We were lucky if she could even put names and faces together. 
It was almost as if she had returned to being an infant--at a point in 
her life when she should have been enjoying retirement and 
grandchildren she had so looked forward to spoiling. She missed many 
life events that would have meant the world to her--seeing her first 
grandson graduate from college or witnessing the successes of her sons 
that she worked so hard to raise. My biggest regret is that my mother 
did not get to see me become a head coach in the NFL or to sit in the 
stands and cheer when I finally fulfilled a lifelong dream of coaching 
in the Super Bowl. It would have meant so much to her and to me knowing 
that her hard work paid off.
    Now, I fear for my family and future generations. Imagine being hit 
with Alzheimer's in the prime of your life. I do not want Alzheimer's 
disease to cause my family the grief and pain that my brothers and I 
suffered. One of my biggest fears, though, is not being there for my 
children and grandchildren. After the experience with my mother's 
battle with Alzheimer's disease, I cannot imagine how I could handle 
anyone else in my family being diagnosed with this dreadful disease.
    Before my mother was affected, I did not understand this disease. I 
am here to tell you that both the financial impact and the emotional 
impact are devastating for the patients and their families. I surely 
was not prepared for the emotional impact--watching my own mother lose 
her mind and her dignity. As of now, there is no hope for patients or 
their families. Ladies and gentlemen, it is so important; we MUST find 
a way to stop Alzheimer's. My understanding is that researchers are 
close to the answers. Additionally, we must discover a way to help the 
people who have this disease now and cannot afford the care and 
treatment they need.
    In St. Louis, we have found that a high powered offense wins 
football games. Now is the time for Congress to line up on the 
offensive against Alzheimer's disease. As you know, successful strategy 
for winning games is in a playbook. The Alzheimer's Association has 
provided you a real life playbook, ``A Race Against Time: A National 
Program to Conquer Alzheimer's Disease.'' You have heard today what 
needs to be done and how quickly it needs to happen. I am here to ask 
you to execute the game plan that will defeat Alzheimer's. It is time 
for Congress to take the offense against Alzheimer's disease.
    Thank you for your time and support.

    Senator Specter. Thank you, Mr. Martz, for sharing with us 
your experience, the tragedy with your mother. We like your 
football metaphors--whatever it takes, the clock is running, 
don't drop the ball. We are dedicated to it and the Congress 
and the administration have put money where their mouths are in 
more than doubling NIH funding, and we are determined to find 
the answer, and that is why we have asked for more specifics.
STATEMENT OF TERRELL OWENS, WIDE RECEIVER, SAN 
            FRANCISCO 49ERS
ACCOMPANIED BY MARILYN HEARD

    Senator Specter. We turn now to Mr. Terrell Owens, well 
known wide receiver for the San Francisco 49ers, drafted in 
1996 out of the University of Tennessee, Chattanooga. In seven 
seasons with the 49ers, Mr. Owens has made two Pro Bowl 
appearances, broken 49ers' and league records and is one of the 
premier offensive players in the NFL. In the year 2001, he 
earned first team All Pro honors from the Associated Press, and 
a career high in league-leading 16 touchdown receptions. His 
grandmother, Alice Black, has Alzheimer's disease and resides 
in a nursing home in Alabama. Mr. Owens is accompanied by his 
mother, Ms. Marilyn Heard.
    This is a challenge for you, Mr. Owens, to appear on NFL 
highlights. The NFL film crew is here today as is ESPN and 
Senator Harkin and Senator Murray and I are sure you will rise 
to the occasion.
    The floor is yours. It is nice to see you without your 
helmet on.
    Mr. Owens. Good morning, Senator Specter and Senator 
Harkin. I am definitely grateful to be here this morning, and 
to all the Members of Congress, thank you for having me here 
today, and while I am here in Washington my grandmother, Alice 
Black, is in a nursing home in Talladega, Alabama, and at this 
point she only remembers me, her late husband, and the woman 
beside me, Marilyn Heard, which is her daughter and my mother.
    Professionally I have been able to provide for her 
financially. My mom has been her caregiver, and it came to my 
attention around 1999, when I was attending a charity event in 
San Diego for a league mate of mine, and my mom called me, and 
I was about to go to the function and I noticed a change in her 
voice and she said my grandmother had been doing some things as 
far as forgetting stuff, and just wandering off, and she said 
she wanted her to talk to me.
    I know the regular tone in my grandmother's voice, so once 
she got on the phone she sounded like, just a slowed down tape 
recorder, as if her batteries were running dead, and my mom got 
on the phone, and she was crying, and I tried to hold her up as 
best I could, and as soon as I hung up the phone I just burst 
into tears, because this is a lady that has raised me to be the 
person I am and molded me into the person I am.
    I have always had the work ethic. She taught me to work 
hard, speak my mind, and speak strongminded. My grandmother is 
definitely the reason I am here today, other than her illness, 
and I think despite all the success that I have had on the 
football field I feel basically powerless as far as helping her 
and doing all the necessary things that I can to do for her, 
and I think along with many people here in the audience and 
Coach Martz and myself, I am definitely hoping and praying for 
the increase in funding for Alzheimer's research.

                           prepared statement

    During last year I served as a celebrity team chair member 
of the Alzheimer's Association of Northern California and the 
Northern Nevada Memory Walk, and I definitely plan to serve 
again. Along with myself, Coach Martz and everyone here today 
that has been affected by the disease, we ask that you increase 
the funding to keep our loved ones around mentally as well as 
physically.
    Thank you.
    [The statement follows:]
                  Prepared Statement of Terrell Owens
    Good morning Senator Specter and Senator Harkin. I am honored to be 
here.
    My name is Terrell Owens. I am here to talk to you about an 
incredible woman named Alice Black. Alice is my grandmother and she has 
Alzheimer's disease. While I'm here in Washington, she is in a nursing 
home in Talladega, Alabama. At this point, she remembers mainly me, her 
late husband and the woman who is here with me today, Marilyn Heard, 
her daughter and my mother.
    Professionally, I have achieved one of my dreams--I play football 
in the National Football League. I am a wide receiver for the San 
Francisco 49ers. In my seven seasons in the NFL, I have caught hundreds 
of passes, scored many touchdowns, set numerous 49er and NFL records, 
and been to the Pro Bowl three times. Despite this success, I am 
basically powerless to help a woman that I love very dearly.
    Football has provided me with a certain amount of fame and 
privilege; however, no amount of fame or privilege can heal my 
grandmother. While I gladly pay her medical and health care expenses, I 
cannot change the fact that she has Alzheimer's and continues to 
suffer.
    My grandmother helped mold me into the person I am today. She 
helped raise me, my brother, and my sisters while my mother worked 
numerous jobs and sewed clothes on the side. Through the way she lived 
her life, my grandmother passed many special gifts to me. She was 
strict when necessary, but always caring and often playful. She taught 
me to work hard, to be proud of who I am, and to never back down or 
take a back seat to anyone. Many of her so-called old-fashioned beliefs 
became the bedrock for my success-self discipline, work ethic, and 
focus. Moreover, because of my grandmother's and my mother's steadfast 
convictions, I am never afraid to honestly speak my mind about matters 
that are important to me. Finally, my grandmother's indomitable spirit 
(she would often cite Scripture, sing hymns, and make sure that I 
attended church) created a similar spirit within me that gives me the 
strength to carry on as she continues to suffer.
    One of the real tragedies of Alzheimer's is the isolation it 
produces. The woman who helped raise me is barely aware of my 
accomplishments or my position in life. I am proud to Alice Black's 
grandson and I simply wish that she was able to celebrate what we have 
become, where we are going, all the while remembering where we have 
been.
    During 2002, I had the honor of serving as the celebrity team chair 
for the Alzheimer's Association Northern California & Northern Nevada 
Memory Walk. I plan to serve again this year as the celebrity chair for 
the 2003 Memory Walk. Through that experience, I filmed a public 
service announcement for the Alzheimer's Association and was able to 
make other contributions to the local Alzheimer's chapter. I know there 
are millions of others who have suffered with a loved one stricken with 
Alzheimer's just as my family and I have suffered. I am truly humbled 
to have been chosen to represent many of those persons here today. I 
believe I speak for all of us when I ask this Committee to help us help 
those who cannot help themselves.
    I know what it takes to be successful in sports. My success is a 
direct result of the hard work that I put in during the off-season and 
off the field during the NFL season. When a game is on the line, I want 
to be the player my teammates look to make a big play or to score a 
touchdown for my team.
    Unfortunately, I cannot go out and make a big play or score a 
touchdown that will cure my grandmother and the millions of others who 
suffer from Alzheimer's. However, I am here today as part of a team 
that can work together to defeat Alzheimer's. I am asking the Senators 
on this Committee and President Bush to help me, Coach Martz, and the 
millions of persons we represent to team with us to defeat Alzheimer's. 
Together, we can make a difference and defeat this horrible disease 
once and for all.
    There is really only one thing I care about in this world--my 
family. It has been devastating for me and my family to watch my 
grandmother slip into the ravages of Alzheimer's. I know that you have 
many difficult decisions to make and that you must always balance many 
competing priorities and interests. Part of the reason I decided to 
appear today in front of this Committee is because of the enormous 
respect I have for it and the work it does. Thus, I urge you for my 
grandmother and for all of the other families that have been affected 
by this terrible disease, to increase funding for Alzheimer's research 
by $200 million this year and to keep Congress on track toward the goal 
of $1 billion for research.

    Senator Specter. Thank you very much, Mr. Owens, for 
sharing with us your views. People know you and people listen, 
and I think it will be very, very helpful.
    Because of the limited time I am going to waive my round of 
questions and turn directly to Senator Harkin.
    Senator Harkin. Thank you very much, Mr. Chairman. I just 
want to join with you and thank all of our witnesses who are 
here on this panel for your personal stories. We need to hear 
these, and the public at-large needs to hear this, because you 
know, we talk about dollars and budgets and all that kind of 
stuff, but what it comes down to is human beings and families, 
and what it does to families.
    We all have our own personal stories of people we know and 
love that have had Alzheimer's or have Alzheimer's. I just went 
to dinner a week ago Sunday with a boyhood friend of mine who I 
grew up with, and he is now in a nursing home, and I took him 
out to dinner and several times during the evening he kept 
asking me about where we had met, and who was I, and it is just 
a terrible thing to see happen to someone.
    But I thank you all for your personal stories, and I thank 
the Uptegraphs. Thank you, Dwayne, for being here and sharing 
with us, and Mr. Kurtz, and Terrell Owens. My gosh, I hope I 
can at least get to shake your hand on the way out. I have got 
to tell my staff I shook your hand anyway, because we have 
watched you play many, many times, and you are a great 
inspiration, and it does mean something to have someone of your 
stature here today and championing a cause like this because 
people do look up to you.
    A lot of young people look up to you, and if you are 
espousing this cause and leading this, believe me, it just has 
great reverberations all over the United States, so I thank you 
for that.
    Coach Martz, thank you very much again for being here and 
sharing with us also, and again we are a sports-minded Nation. 
We all love sports, and I know sports figures endorse different 
products and things like this, and I understand, that is fine, 
that is good, but we need you on this, too, and I cannot tell 
you how proud I am of both you and Terrell Owens for being 
here, because you can just have a great, great effect on the 
people that we have to go to then to get the support to get the 
kind of things we need through here, so thank you for taking 
the time and effort to be here. Thank you for your stories, and 
keep on leading the cause on this.
    Thank you all very much.
    Senator Specter. Thank you, Senator Harkin.
    I just want to tell you, Mr. Owens, Senator Harkin appears 
more on C-SPAN than you do. They have a spot reserved for me on 
C-SPAN. It is 3 a.m.
    They have reruns. Senator Harkin and I have a great 
following among America's insomniacs.
    People can see you and Coach Martz and you on prime time.
    Well, we thank you very much for coming, Mr. and Mrs. 
Uptegraph, Mr. and Mrs. Kurtz, Mr. Owens, Mr. Martz, for 
talking about your own personal experiences. It tells something 
to America when we hear it from the people who suffer from 
Alzheimer's, from Mr. Uptegraph and Mr. Kurtz, to see the 
loyalty and bravery and steadfastness of their wives, and when 
Mr. Martz talks about his mother in such emotional, direct 
terms and what it meant to her never having seen his great 
accomplishments, and Mr. Owens talks about his grandmother 
lovingly, and here with his mother, and we are committed to 
funding for Alzheimer's and these other terrible maladies, and 
the Congress and the President have supported it, and we will 
continue the fight.
    We have a large group from Pennsylvania. I would like to 
note the presence of Ms. Orion Reed, noted journalist and 
television star from Pennsylvania, who has been a witness here, 
an official Alzheimer, having suffered with the ailment in her 
family as well, and the folks from Pennsylvania in the first 
four rows have requested a photograph, and we will be coming 
down to do that right now.

                           PREPARED STATEMENT

    We have received a statement from the Center for Senior 
Health, Jefferson College of Health Professions, Thomas 
Jefferson University that will be made part of the hearing 
record.
    [The statement follows:]
 Prepared Statement of the Center for Senior Health, Jefferson College 
           of Health Professions, Thomas Jefferson University
    Mr. Chairman and Members of the Committee, thank you for the 
opportunity to submit testimony for this most important hearing on 
Alzheimer's Disease and Related Disorders (ADRD) as you begin to 
consider funding priorities for fiscal year 2004.
    My name is Laura N. Gitlin, Ph.D., and I am the director of the 
Center for Senior Health (CSH), Jefferson College of Health Professions 
of Thomas Jefferson University, Philadelphia, Pennsylvania. I direct an 
applied research center with over 15 years of continuous funded 
research on the devastating effects of Alzheimer's disease and related 
disorders on family caregivers. The Center's nationally and 
internationally recognized program of research is dedicated to 
developing and testing the most innovative and promising interventions 
to help families provide quality care to persons with dementia, 
alleviate the stressors of caregiving, and support the daily function 
of persons with dementia to enable them to remain at home with life 
quality. Through NIH funded clinical trial research, my Center has 
successfully identified and tested specific strategies to help families 
manage the day-to-day challenges of assisting persons with progressive 
memory loss.
    Despite increasing national research and policy attention on 
caregivers, family caregiving remains a significant public health 
concern. Most importantly, there remains a gap between what we have 
learned from research and what is currently practiced by health and 
human service professionals. There is a tremendous need to support 
projects that translate the most promising tested programs for family 
caregivers into effective clinical practices and training of direct 
service providers. In order to provide state-of-the-art services in 
home and community settings, translational research demonstration 
projects are a critical next step in our efforts to support persons 
with this disease and their family members in the home, the least 
costly setting of care.
           number of persons with adrd and family caregivers
    Mr. Chairman, over 4.5 million Americans are currently afflicted 
with ADRD. This number is expected to increase exponentially with the 
aging of our population, and particularly as the baby boom generation 
enters retirement. After the age of 65, the number of persons with 
dementia doubles each decade such that by the age of 85, 50 percent of 
persons have this disease. Persons with ADRD live an average of 4 to 20 
years from the time of diagnosis. The vast majority of persons with 
ADRD live at home and are cared for by family members for the duration 
of the disease. That is, the home, a private residence, is the primary 
setting in which persons with ADRD live and in which the disease 
process must be managed.
    Pennsylvania has one of the fastest growing elderly populations and 
serves as a microcosm of national trends. The fastest growing 
population in Pennsylvania are older adults 65 years of age and older. 
This group represents close to 15.6 percent of the population, 
significantly higher than the national average (12 percent). The 
Alzheimer's population represents 16 percent of the elderly in 
Pennsylvania, thus presenting a significant public health concern and 
rising health care costs in this state alone.
    Millions of American families provide help to older people with 
dementia. It is estimated that in the near future, one out of four 
people will be a family caregiver. For some family members, the 
caregiving role lasts for many years and even decades. Moreover, 
caregivers are increasingly asked to perform complex tasks similar to 
those carried out by paid health or social service providers. As the 
disease progresses, families find themselves socially isolated and 
unable to access needed resources including education, respite and 
assistance from trained health professionals.
           the personal and economic costs of family regiving
    Family regiving often occurs at great personal cost and involves 
the provision of extraordinary care, exceeding the bounds of normal 
family relationships. Research has consistently shown that key outcomes 
of the caregiving experience include psychological distress and burden, 
and psychiatric morbidity such as depression. Caregiving may also 
compromise physiological functioning and increase caregiver risk for 
physical health problems. Studies show for example that caregivers are 
less likely to engage in preventive health behaviors, show evidence of 
decrements in immunity measures, exhibit greater cardiovascular 
reactivity and slowing of wound healing, and are at increased risk for 
serious illness. Most significantly, family caregivers who are stressed 
by daily caregiving are at risk for mortality. Consequently, family 
members themselves often become the ``hidden patients'' who experience 
a range of negative outcomes such as emotional distress, clinical 
depression, poor health, fatigue, financial burden and a higher rate of 
mortality compared to non-caregivers.
    The economic value of family caregiver services and the costs of 
caregiving to U.S. business in terms of decreased productivity by 
employees burdened with caregiving is substantial. The value of 
caregiver services has been estimated to be $197 billion per year (1997 
dollars). The aggregate costs of caregiving in lost productivity to 
U.S. business is conservatively estimated as $11.4 billion (1997 
dollars).
                     the role of family caregivers
    Individuals with ADD, particularly at the moderate to severe stages 
of the disease, typically require hands-on assistance with daily care 
such as grooming, bathing, eating, dressing, preparing meals, and 
transferring from bed to chair. Moreover, dementia patients usually 
require constant oversight to assure their own safety and well-being. 
Additionally, families must contend with many troublesome behaviors 
that can be difficult to manage such as agitation, repetitive 
vocalizations, resistance to care, wandering and trying to leave the 
home, awakening at night, and combativeness. These behaviors pose the 
most significant burden to family caregivers. Research has shown that 
families need access to and can benefit from education, social support 
and most importantly, in-home training in particular strategies which 
help to minimize the occurrence of these troublesome behaviors.
                    strategies for helping families
    The accumulating evidence of the negative effects of caregiving has 
stimulated the development and testing of numerous intervention 
programs. The first wave of intervention studies was primarily 
psychosocial, examining the impact of support groups, individual 
counseling, and education. Evidence was mixed with some studies showing 
only modest therapeutic benefits. A key finding was that programs 
designed for individual caregivers were more effective than group 
programs suggesting that providing hands-on assistance to families, 
particularly in the home, and customizing strategies to their needs may 
be necessary in order to effectively support their efforts. Recent 
research using rigorous randomized controlled trial designs have 
evaluated a broader range of intervention programs involving individual 
or family counseling, case management, skills training, home 
environmental modification, behavior management and combinations 
thereof. The evidence from these studies is very promising.
    Our research has shown in particular that an occupational therapy 
in-home intervention involving education, skills training, and home 
environmental modifications effectively reduces caregiver burden, time 
spent in daily oversight, the occurrence of problem behaviors, and can 
delay functional decline in persons with dementia. Strategies such as 
modifying the home environment to assure safety, teaching effective 
communication approaches with the dementia patient, training caregivers 
in setting up daily routines and simplifying tasks such as dressing to 
facilitate involvement of the dementia patient, as well as instruction 
in techniques to manage their own distress, can make a significant and 
positive difference in the quality of lives for both the caregiver and 
dementia patient.
                  next steps to help family caregivers
    A recent survey of 10 States, one of which was Pennsylvania, 
identified a key issue to be the shortage of direct care workers to 
provide needed education and skills training to family caregivers. 
Another key issue that was identified is that States should be given 
more opportunities to learn about promising practices and that services 
for persons with disability, including dementia, should target the 
family caregiver as well. Thus, the next critical step in helping 
families cope is to increase the training of direct service providers 
and translate clinical trial intervention research into public health 
programs. The development of best practice guidelines and training of 
health professionals based on proven protocols covering areas such as 
home modifications and environmental simplification, caregiver skills 
training in communication, task simplification and activity engagement 
and proven caregiver stress reduction and problem-solving techniques 
are essential. Our research shows that one health professional group 
who can truly help both the family caregiver and dementia patient are 
occupational therapists. Yet, this group needs training in best 
practices and occupational therapists are not integrated in existing 
family caregiving programs.
                               conclusion
    Mr. Chairman, I wish to thank you and the committee again for its 
leadership and vision in this area. Significant progress has been made 
in understanding ADRD, identifying potential pharmacological treatments 
to control aspects of the disease process and developing important 
approaches for early diagnosis. However, much remains to be done. There 
is no cure for the disease and families continue to bear the 
extraordinary burden of providing hands-on daily care throughout the 
course of the disease. Families provide this care at great personal 
sacrifice that often results in their own morbidity and in some cases 
mortality. Significant progress has been made in identifying 
intervention strategies that help families cope with their 
responsibilities and enable them to keep their loved one at home, the 
least costly setting of care. Yet, these strategies have not been 
translated into clinical practice and are not well represented in 
service programs. Addressing the challenges of caregiving in American 
society will require innovative basic research as well as translational 
demonstration projects that involve the development of best practices 
and training of health professionals, key among them being occupational 
therapists.

                         CONCLUSION OF HEARING

    Senator Specter. Thank you all very much for being here, 
that concludes our hearing.
    [Whereupon, at 11 a.m., Tuesday, April 1, the hearing was 
concluded, and the subcommittee was recessed, to reconvene 
subject to the call of the Chair.]

                                   - 
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