First Major Survey of Baby Boomer Attitudes on Alzheimer’s Shows Fear About
Their Own Future and Frustration Over Pace of New Drug Approvals.
As the first Baby Boomers turn 60 this year, they are beginning to confront
the consequences of growing older. A new survey shows the majority of Boomers
are anxious about how Alzheimer’s disease (AD) will affect their health and
quality of life.
At the same time, Boomers are frustrated that the government and the U.S. Food
and Drug Administration (FDA) do not adequately address adequately this looming
public health crisis. The findings from the first major survey of over 1,000
American Baby Boomers about Alzheimer’s disease were announced today by a newly
formed coalition of 21 leading advocacy groups known as ACT-AD (Accelerate Cure/Treatments
for Alzheimer’s Disease).
"These survey findings underscore the fact that when Baby Boomers are asked to
address the potential of Alzheimer’s in their future, they are clearly not ready
emotionally, psychologically or financially," said Daniel Perry, executive
director of the Alliance for Aging Research and chair of the ACT-AD Coalition. "Many
Boomers are currently more focused on health issues like heart disease or
arthritis and mistakenly consider AD a problem of their elders. But when asked
to consider themselves at age 70 with Alzheimer’s disease, there was a visceral
reaction and an awakening to the reality of what could await them. They also
have little confidence that policymakers, the US healthcare system, or drug
regulators are prepared to help them. As the crisis looms, ACT-AD will press
ahead for a solution."
Alzheimer’s disease, which is universally fatal, affects 4.5 million Americans
and causes millions more to leave the workforce to care for loved ones who
eventually need around-the-clock attention. It is a progressive
neurodegenerative disorder that results in cognitive deterioration affecting
many areas of function. As the disease progresses, people suffer severe
cognitive deterioration, confusion, disorientation, personality and behavior
change and eventually death. Estimates suggest that by 2010, Alzheimer’s disease
will affect one in ten people over age 65, or 5.6 million Americans, and the
cost of care will increase 75 percent to about $160 billion annually in Medicare
costs alone.
One hundred years after Bavarian physician and researcher Alois Alzheimer first
described the pathology and symptoms that have become the hallmarks of the
disease that bears his name, the ACT-AD Coalition is launching a campaign to
call attention to the urgency of the Alzheimer’s disease crisis, and, at the
same time, the lack of a well-defined approach in the U.S. for swift delivery
and access to promising transformational therapies that could halt or reverse
the disease.
"Alzheimer’s is a cruel disease that has been on the back burner of science for
100 years but no one is immune to it and the toll will be staggering unless Baby
Boomers wake up to the threat and do something about it," said Meryl Comer, Emmy
Award-winning television journalist and full-time caregiver for her husband who
was diagnosed with AD over 11 years ago at age 58. "When the onset of the
disease is early for a loved one, it is like being a witness to your own future
and I am terrified for us all."
Survey Findings
The web-based survey was conducted by Opinion Research Corporation for ACT-AD
and sampled 1,009 Americans born between 1946 and 1964. All data were weighted
to represent the US general population with respect to age, gender and
geographic region. The maximum error range for a sample of 1,000 is +/-3.1
percentage points at a 95 percent confidence level.
In summary, survey results reveal that when provided with basic information on
Alzheimer’s disease, the vast majority of Baby Boomers are extremely concerned
about the potential impact on their health, quality of life and finances as well
as on the healthcare system.
Boomers express clear and significant concerns with current treatment options as
well as the level of response from the government and the FDA. They place top
priority on new drugs that could change the course of the disease, feel that the
FDA should give priority review to these drugs, expect the right to decide
whether to use them, and are willing to accept a degree of risk with promising
drugs.
"What is most striking about these findings is that Americans are no longer
accepting the longstanding myth that real treatment breakthroughs for
Alzheimer’s are still decades off," commented Samuel Gandy, MD, director of the
Farber Institute for Neurosciences at Thomas Jefferson University. "The reality
is that decades of research have given us a number of investigational and highly
promising drugs that could slow or even prevent Alzheimer’s. Everyone involved
in the discovery, development and approval of these drugs should act with
urgency and resolve."
Coalition Declares War on Alzheimer’s
As the FDA continues to pursue its Critical Path to modernize the scientific
process for developing and evaluating medical products, ACT-AD will begin a
comprehensive campaign to work with the agency and legislators involved in
health policy to elevate AD as a national health priority. The first goal of the
Coalition is to convince the FDA to extend the same rapid approval mechanisms it
has developed for other life-threatening diseases, like cancer and HIV-AIDS, to
promising drugs for AD.
"Right now the majority of Alzheimer’s victims and their caregivers are our
parents. Their plight is our future. We are ticking time bombs without even
knowing it," said Meryl Comer, who recently published "From the bedside: A
terrified witness to the future — A baby boom generation wake-up call," in the
April issue of the scientific journal, Alzheimer’s & Dementia. "My hope is that
ACT-AD will help in the push to get promising AD drugs to patients. As families,
we are desperately in need of access to new therapies instead of being left with
only agonizing decisions. It is time to borrow a page from HIV activists of the
’80s and breast cancer survivors of the ’90s. We need to make it clear, as a
generation of 75 million strong, that this kind of outcomes to our lives is
unacceptable and that we refuse to be robbed of our minds without a fight."
ACT-AD Background
ACT-AD is a growing coalition of organizations representing patients, caregivers,
consumers, older Americans, researchers, and women’s health advocates. The
Coalition, comprised of 21 organizations, is directed by an Advisory Council
including the following members: The Alliance for Aging Research, The
Alzheimer’s Foundation of America, The American Society on Aging, The National
Association of Area Agencies on Aging, National Alliance for Caregiving, the
National Consumers League, Research!America, and The Society for Women’s Health
Research. Other members include: The Abigail Alliance, The American Association
for Geriatric Psychiatry, The American Medical Women’s Association, Faster
Cures, The Gerontological Society of America, Hadassah, The International Eye
Foundation, The Institute for the Study of Aging, The Men’s Health Network, The
National Council of Patient Information and Education, The American Federation
for Aging Research, International Longevity Center and The Older Women’s League.
The Coalition is supported through an educational grant by Elan and Wyeth.
For more information about the ACT-AD Coalition and campaign against Alzheimer’s
disease, visit http://www.ACT-AD.org.
CONTACT: Jeff Levine, +1-202-944-5188, +1-301-335-8904; Harry Wade,+1-212-885-0503,
+1-917-482-9057, both of H&K for ACT-AD
Web site: http://www.ACT-AD.org/
All of the above text is a press release provided by the quoted organization.
globalagingtimes.com accepts no responsibility for their accuracy.