Justice O'Connor, Newt Gingrich Draw Aging Committee
Focus to Fight Against Alzheimer's
Both testify at Senate hearing as members of
Alzheimer's Study Group
May
14, 2008 - Former Supreme Court Justice Sandra Day O'Connor and former
Speaker of the U.S. House of Representatives Newt Gingrich were the
headliners today at a hearing by the Senate Special Committee on Aging
on Alzheimer's disease. Chairman Herb Kohl (D-WI) opened the hearing by
declaring AD a "growing national crisis" that America must "commit to
addressing."
Sen. Kohl said there are three things Congress can
do and number one is to increase funding for research to find cures or
better treatments. Secondly, he said families living with the disease
need support.
"And, finally," he said, we can protect those with
genetic predisposition to this and other diseases from discrimination by
their workplace or insurer."
This laid the ground work by the presentations by
O'Connor and Gingrich, who are both members of the Alzheimer’s Study
Group, established by Congress to develop a National Alzheimer's
Strategic Plan.
Gingrich, founder of
The Center for Health Transformation, and former Senator Bob Kerrey,
president of
The New School, joined with Congressional leaders on July 11, 2007
to announce the formation of the ASG, and their role as co-chairs.
Congress established the independent, non-partisan
ASG to assess the adequacy of the country's current efforts to combat
Alzheimer's and to recommend a plan to "address identified opportunities
and accelerate progress toward defeating this terrible disease." The
plan is to be delivered this year.
The focus of attention at the hearing was on
Justice O'Connor, who resigned from the court, many assume, to care for
her Alzheimer's stricken husband.
"I appreciate the invitation to testify before you
today," she said in her opening statement. "I commend you for delving
into a subject that is very dear to my heart and to the hearts of the
millions of American families who love and provide care to relatives who
have Alzheimer’s disease.
"As you know, I became one of these caregivers in
1990 when my husband, John, was diagnosed with Alzheimer’s. Living with
this disease has been sad and difficult for my entire family. But it has
also given us a first-hand understanding and a profound empathy for
caregiving families around the nation.
"You may remember that in the early days of my
husband’s illness, I often took him to court with me because he could
not be left alone. And, as you know, I retired from the U.S. Supreme
Court in 2006 to find a care center for John in Phoenix, where two of
our children live. Many caregivers make similarly difficult decisions
each and every day. Sadly, these life-changing decisions are simply part
of caring for someone with Alzheimer’s.
"Clearly, Alzheimer’s disease is a family disease.
It may directly attack only one member of a family. But every member of
that family feels the effects. Every member loses something."
(See here complete testimony below news story.)
Gingrich said, "Alzheimer’s is a crisis that mounts
by the day. We have let too many of these days slip by without bold,
decisive action to deliver meaningful relief to the millions of
Americans struggling with this terrible disease. Together, we can end
this sad legacy and replace it with a much better future for millions of
Americans and our Nation as a whole.
He said the Alzheimer’s Study Group is developing
its recommendations through a focus on five key objectives:
● Encouraging collaboration among researchers;
● Improving Alzheimer’s clinical trials;
● ‘Rapid learning’ from large electronic health
datasets;
● Integrating a community-based care model; and,
● Providing better information to policymakers.
He said the members share a conviction that
Alzheimer’s is a truly large and momentous challenge to our Nation.
"We must act now, or we will pay a far, far greater
price in the decades ahead," he said.
It is projected that without a cure, or the
discovery of some treatment that could delay the onset or progression of
Alzheimer’s, there will be almost a half million new cases of
Alzheimer’s disease each year beginning in 2010; by 2050, there will be
a million new cases each year.
Committee members and panelists discussed the
Alzheimer’s Breakthrough Act, introduced last year by Senators Barbara
Mikulski (D-MD), Kit Bond (R-MO), Hillary Clinton (D-NY), and Susan
Collins (R-ME).
The bill would double the funding for Alzheimer’s
research at the National Institute for Health (NIH) to $1.3 billion.
Chairman Kohl supports the legislation, which was passed through the
Senate HELP Committee in July of last year.
The hearing also touched on Kohl’s forthcoming bill
that would offer training and support services to family caregivers. At
a recent Aging Committee hearing on the long-term health care workforce,
Chairman Kohl announced his plan to introduce the legislation.
Currently, almost 10 million Americans are caring
for a person with Alzheimer’s disease or other dementias. Such
caregivers frequently do the same work as a professional caregiver, but
they do so voluntarily and with little or no training or access to
broader support services.
The Genetic Information Non-Discrimination Act
(GINA) was also discussed at today’s hearing. GINA recently passed both
chambers of Congress, in the House with only one no vote and in the
Senate with unanimous support. The bill is currently awaiting the
President’s signature.
Due to recent gains in the areas of gene mapping
and genetic testing, this legislation is of particular importance to the
Alzheimer’s community because genetic information plays an invaluable
role in the early detection and treatment of the disease.
“This legislation will protect the right of
Americans to seek out genetic testing without fear that the results will
be used against them by an employer or insurance provider,” Chairman
Kohl said. “Our hope is that this protection will encourage broader
utilization of testing methods, and a greater chance of early
intervention where possible.”
Charles “Chuck” Jackson, a patient dealing with
Alzheimer’s, shared his personal story of being diagnosed and the impact
on his work, family, and life, including the unique challenges that face
a patient diagnosed before age 65.
Suzanne Carbone offered testimony regarding her
experience as a caregiver to her husband who suffers from Alzheimer’s,
including the challenges faced by caregivers and the importance of
training and community support.
Finally, Dr. Rudi Tanzi, a preeminent Alzheimer’s
researcher, issued a broad update on the latest research and work toward
a cure, including new improvements in testing, diagnosis and treatment,
and also stressed the importance of further research. Dr. Tanzi is the
Director of Genetics and Aging Research Unit at Massachusetts General
Institute for Neurodegenerative Diseases, as well as a Professor of
Neurology at Harvard University.
Following is a list of speakers and links (click on
names) to their testimony.
Statements of Committee Members
Senator Herb Kohl (D-WI), Chairman
Senator Gordon H. Smith (R-OR), Ranking Member
Witness Testimony
The Honorable Sandra Day O'Connor, Former Supreme Court Justice,
Member of the Alzheimer's Study Group, Washington, DC (Note: Her
complete testimony is also below.)
The Honorable Newt Gingrich, Former Speaker of the House of
Representatives, Member of the Alzheimer's Study Group, Washington, DC
Charles Jackson, Alzheimer's patient, Albany, Oregon
Suzanne Carabone, Alzheimer's patient caregiver, Silver Spring, MD
Rudi Tanzi, Ph.D., Director of Generics and Aging Research Unit,
Massachusetts General Institute for Neurodegenerative Diseases;
Professor of Neurology, Harvard University, Hull, MA
>>
Click here to view Webcast.
>>
Click to Website for Alzheimer's Study Group
Statement of Sandra Day O’Connor
Retired Associate Justice
U.S. Supreme Court
Before the Special Committee on Aging United
States Senate May 14, 2008
Chairman Kohl, Ranking Member Smith and members of
the Committee. I appreciate the invitation to testify before you today.
I commend you for delving into a subject that is very dear to my heart
and to the hearts of the millions of American families who love and
provide care to relatives who have Alzheimer’s disease.
As you know, I became one of these caregivers in
1990 when my husband, John, was diagnosed with Alzheimer’s. Living with
this disease has been sad and difficult for my entire family. But it has
also given us a first-hand understanding and a profound empathy for
caregiving families around the nation. These caregivers are continually
called upon to make fundamental sacrifices and adjustments in their
lives in order to nurture and support the people they love.
You may remember that in the early days of my
husband’s illness, I often took him to court with me because he could
not be left alone. And, as you know, I retired from the U.S. Supreme
Court in 2006 to find a care center for John in Phoenix, where two of
our children live. Many caregivers make similarly difficult decisions
each and every day. Sadly, these life-changing decisions are simply part
of caring for someone with Alzheimer’s.
Clearly, Alzheimer’s disease is a family disease.
It may directly attack only one member of a family. But every member of
that family feels the effects. Every member loses something.
Alzheimer’s ruthlessly robs families of husbands
and wives, mothers and fathers, grandmothers and grandfathers, aunts and
uncles, brothers and sisters. Researchers are now telling us that the
disease can also rob caregivers of their health. According to a recent
study in the Journal of Immunology, people who care for relatives with
Alzheimer’s are twice as likely as non-caregivers to suffer from
depression. They are also more likely to develop a compromised immune
system that could shorten their lives.1
Researchers have not yet determined why some of us
develop Alzheimer’s and others do not. We do not yet fully understand
the biological processes that cause such dramatic degeneration. But
families with Alzheimer’s know all too well the devastating effects.
From even the earliest stages, the symptoms of Alzheimer’s disease are
very difficult to handle.
As the disease progresses—often over the course of
decades—its symptoms become cruel and punishing. This disease begins
quietly, with memory difficulties that gradually become more serious and
much more frightening with each passing year. Then, what follows is
confusion ... impaired judgment ... trouble expressing even the simplest
thoughts ... disorientation ... and socially inappropriate behavior.
Eventually, formerly self-reliant, articulate and
loving family members lose the ability to bathe, dress or eat without
help ... lose the ability to communicate ... and fail to recognize the
spouse or the children for whom they have cared so deeply for so many
years. I submit to you that until you have actually stared Alzheimer’s
in the face, as millions of Americans and their families have done, you
cannot truly understand the deep sense of frustration, fear,
helplessness and grief that accompany it.
While Alzheimer’s takes a staggering toll on
families, it is not just a family disease. Indeed, Alzheimer’s is fast
becoming a national disease – a national health crisis. The Alzheimer’s
Association estimates that 5.2 million Americans now have Alzheimer’s
disease—a figure about equal to the population of Wisconsin. More than
eight million Americans over the age of 65 could have the disease by
2030 - that’s roughly the combined populations of Wisconsin and Oregon.
Alzheimer’s also brings with it a staggering cost.
The nation now spends an estimated $150 billion each year to care for
people with Alzheimer’s. The disease’s enormous budget impact will only
grow larger by 2050, when as many as 16 million Americans could find
themselves in its grip.2
Is this rapid growth in Alzheimer’s cases
inevitable? I do not believe it is. That is why I am here today and why
I chose to join the Alzheimer’s Study Group.
As you know, the Alzheimer’s Study Group is a
taskforce of national leaders charged with creating a National Strategic
Plan to overcome the mounting Alzheimer's crisis. This group has
received bipartisan support here on Capitol Hill, and rightly so. It
represents an important step in helping the United States establish and
carry out a bold national goal – one that seeks nothing less than to
eradicate Alzheimer’s disease.
Our collective experience with Alzheimer’s to date
– as family members, scientists, medical professionals and policymakers
– has convinced group members of three critical facts.
● First, Alzheimer’s is a complicated disease that
requires a coordinated, multidisciplinary response. We need to fight
this killer not only in the research lab, but also at the treatment
site, in the halls of government, and in the communities that people
with Alzheimer’s call home.
● Second, we will never succeed in tackling
Alzheimer’s by tweaking our existing systems or being satisfied with
piecemeal, incremental changes. Instead, we must transform our thinking
about Alzheimer’s. We need to create new research, treatment, care and
support systems. And we need to make sure that those systems work
together toward common goals.
● Third, we need to move quickly. I cannot
over-emphasize the need for urgency. The families of people with
Alzheimer’s disease are impatient for new treatment options that can
offer new hope to them and their loved ones. We must resolve, by our
swift action, that the current generation of people with Alzheimer’s
will be the last generation that we lose to this miserable disease.
A forward-thinking nation, led by a
forward-thinking Congress, can take steps now to transform our approach
to Alzheimer’s. Specifically:
● We must expand clinical and research efforts
that improve the diagnosis and treatment of Alzheimer’s disease. In
particular, we must aggressively emphasize prevention and early
diagnosis. Researchers increasingly agree that, just as with heart
disease, early intervention offers the best opportunity to stop
Alzheimer’s in its tracks. By taking swift action we can spare millions
of Americans from the indignities of Alzheimer’s.
● We must encourage researchers to share their
insights with one another in real time— rather than waiting many months,
or even years, until patents are filed or study results are published.
As a nation, we are depending on these gifted experts to deliver the
breakthroughs we need so desperately. In return, we need to support
their work fully by offering them new opportunities and incentives to
work together on a much broader and more collaborative scale.
● We must renew our commitment to strong public
investment in developing new treatments. We have been far too lax on
this front. Despite the growing number of Alzheimer’s cases, public
funding for Alzheimer’s has grown very little in the past 5 years. In
fact, when biomedical inflation is taken into account, funding levels
have actually declined.
● We must also encourage the sustained private
investment that will help translate research breakthroughs into new
treatments. Disturbingly, we see signs that the private sector is losing
interest in funding Alzheimer’s programs because of the scientific
challenges, the regulatory uncertainties and delays, the reduction in
effective patent life for preventive therapies, and unclear
reimbursement policies.
● Finally, we must improve formal and informal
supports for those who currently have Alzheimer’s and for their
caregivers. It is time to ensure that best practices in Alzheimer’s care
become standard practices in communities across the country.
The Alzheimer’s Study Group is working closely
with experts from around the country to develop strategies that address
these and other issues. Our group includes leading experts in the fields
of medicine, research, policy, education, communications, business and
law. This multidisciplinary approach makes the Alzheimer’s Study Group
unique and, I believe, gives it a much greater chance of success.
Thank you for allowing me the opportunity to speak
as one of the millions of family members around the country who are
caring for people with Alzheimer’s disease. I suspect that you will not
hear from many of my fellow caregivers directly ... not because they are
uninterested in the topics I’ve raised, but simply because they do not
have the resources to take time away from their loved ones in order to
come before you. I am truly honored to represent these courageous
Americans here today.
In closing, let me challenge you, as
representatives of these same Americans, to address this growing
national Alzheimer’s crisis with the urgency it demands. When the
Alzheimer’s Study Group releases its final report early next year, I ask
you to carefully consider our recommendations. Keep these families in
mind when you choose how to act on those recommendations. The stakes are
high. Without a doubt, the future health and well-being of these
families – indeed, the health and financial well-being of our entire
nation – depends on how swiftly and decisively we act to address this
terrible disease.
1 Damjanovic, A.K., Yang, Y., Glaser,
R., Kiecolt-Glaser, J.K., Nguyen, H., Laskowski, B., Zou, Y., Beversdorf,
D.Q., Weng, N.P. 2007. “Accelerated telomere erosion is associated with
declining immune function in caregivers of Alzheimer's disease
patients.” Journal of Immunology, 179: 4249 - 424.
2 Alzheimer’s Association. 2008.
Alzheimer’s Disease Facts and Figures 2008. Retrieved from Alzheimer’s
Association, May 7, 2008. Web site: http://www.alz.org/national/documents/report_alzfactsfigures2008.pdf
