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.
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At the same time, Boomers are frustrated that the government and the U.S. Food
and Drug Administration (FDA) do not 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).
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“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.”
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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 aroundthe- 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.
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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 welldefined approach in the U.S. for swift delivery and access to
promising transformational therapies that could halt or reverse the disease.
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“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
Awardwinning 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.”
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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.
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The maximum error range for a sample of 1,000 is ±3.1 percentage points at a 95
percent confidence level.
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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.
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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.
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Key Findings include:
•
Personal Preparedness for Alzheimer’s – 90 to 95 percent of respondents
said that they would either be unprepared or would find life “not worth living”
if they were forced to face limitations common to the disease by the time they
were 70. These limitations included basic abilities (not being able to dress or
toilet themselves), social interactions (not being able to recognize family
members) and mental abilities (not being able to remember who or where they
are).
;
•
Cost of Alzheimer’s – 80 percent of respondents said that their current
savings would not be sufficient to cover the cost of care if they were diagnosed
and 81 percent said the same thing about their families’ savings. 83 percent
said they are also worried that the healthcare system is under-prepared to cover
the demands of the coming Alzheimer’s crisis.
;
•
Treatment Options – Only 8 percent of respondents feel that current
treatments are adequate. In fact, most (80 percent) are willing to take
experimental treatments that have the potential for stopping the disease and
preserving their quality of life, even if significant health risk was involved.
Respondents put the highest priority on drugs that stop the disease/loss of
mental abilities (84 percent) or that reverse the disease/loss of mental
abilities (82 percent), even though current drugs do none of these things. 90
percent of respondents felt that drugs that have this potential should be given
the same priority review and fast track status that the FDA gives to drugs for
other life-threatening diseases such as cancer and HIV/AIDS.
;
•
Satisfaction with Government/FDA – When provided with an overview of the
FDA’s current review policy for Alzheimer’s drugs, 82 percent of
respondents remained unsure about what the government is doing to prioritize
Alzheimer’s, but most (84 percent) feel that more should be done and over 75
percent feel that Alzheimer’s should be made a top priority. 89 percent feel
that promising Alzheimer’s drugs deserve the same priority status and fast track
review that the FDA uses for drugs for other serious diseases. “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."
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For more information about the ACT-AD Coalition and campaign against Alzheimer’s
disease, visit
www.ACT-AD.org.
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Media contacts:
Jeff Levine Harry Wade
H&K H&K
202-944-5188
212-885-0503
301-335-8904
917-482-9057
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