A Pending Epidemic

It’s a disease that is universally fatal; there is no cure at present; and one out of 10 people over 65 will be diagnosed with it. It already affects millions of Americans at the cost of billions, and as baby boomers swell the ranks of the elderly, it could potentially break our health care system. But it has yet to be recognized as a national health priority.

"It" is Alzheimer’s disease (AD), a devastating neurological disease that destroys brain function, resulting in a slow, painful decline and ultimately death. AD already affects some 4.5 million Americans, a number predicted to rise to 5.6 million by 2010. The cost of caring for patients with AD is estimated between $80 and $100 billion in the US; by 2010 the cost will increase 75 percent to about $160 billion annually in Medicare costs alone. And these dollar figures don’t begin to reveal the personal and emotional costs for those who must care for loved ones with ravaged minds.

“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 more than 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.”

Boomers Unprepared, Scared

A new survey shows the majority of baby boomers are anxious about how Alzheimer’s disease will affect their health and quality of life. A survey of 1,009 Americans born between 1946 and 1964 reveals that boomers are extremely concerned about AD’s potential impact on their health, quality of life, and finances as well as on the health care system.¹ 90 to 95% said 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; 80% said their current savings would not be sufficient to cover the cost of care; and only 8% feel that current treatments are adequate.

Breakthroughs on the Horizon

While there is currently no cure for AD—only a few FDA-approved drugs that treat symptoms — researchers are on the brink of major breakthroughs that may lead to more effective treatments and ultimately, to prevention. In particular, years of research on how to stop the effects of beta-amyloid, the substance of the brain plaques that are AD’s hallmark, are bearing fruit. Models of Alzheimer’s in mice have been cured with amyloid vaccines, “plaque-busters,” and enzyme modifiers. According to Sam Gandy, director, Faber Institute for Neurosciences, Thomas Jefferson University, only human clinical trials can tell us if we are on the right track.

There is no reason the FDA’s mechanisms for expediting drugs for life-threatening conditions such as cancer couldn’t be mustered for Alzheimer’s treatments. We need to accelerate the pace of scientific advances, drug discovery, and clinical trials.

Models for Activism

Why has there been no public outcry over AD? It may be our culture’s aversion to aging, but it may also be because there is no outspoken constituency. AD affects older people, helpless to speak for themselves, whose caregivers are overwhelmed: both groups are unlikely to become vocal advocates. Unlike cancer and HIV/AIDS, there are no Alzheimer’s disease survivors to champion the cause.

For many years, HIV/AIDS and cancer patients, angered by the pace of drug approval, waged advocacy campaigns that resulted in treatments that slow the diseases and add years to the quality of life. The baby boom generation should now rally to demand greater and more rapid access to promising treatments for AD, and there is a new organization to help them.

A New Organization

ACT-AD (Accelerate Cure/Treatments for Alzheimer’s Disease) is a newly-formed coalition dedicated to saving lives by saving time. Composed of 24 leading advocacy groups representing patients, caregivers, consumers, older Americans, researchers, and women’s health advocates, ACT-AD seeks to accelerate development of a potential cure and treatments for Alzheimer’s disease. Daniel Perry, executive director of the Alliance for Aging Research, is chair of the ACT-AD Coalition.

ACT-AD is launching a campaign to call attention to the urgency of the AD crisis. Its first goal 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.

If you would like more information about the ACT-AD Coalition and to join the campaign against AD, visit www.ACT-AD.org.

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A 2004 report by The Lewin Group found that recent breakthroughs that slow the onset and progression of Alzheimer’s disease could achieve annual Medicare savings of:

• A $51 billion savings a year to Medicare by 2015.
• $126 billion by 2025.
• $444 billion by 2050.

¹Survey conducted by Opinion Research Corporation. For more information visit: http://www.act-ad.org/events.aspx