Testimony of Shelley Fabares
National Board Member, Alzheimer's Association
Studio City, Ca.

Presented to the Subcommittee on Labor, Health & Human Services, and Education and Related Agencies Committee on Appropriations
United States Senate

March 23, 2004

Mr. DeWine, Senator Harkin, members of the Subcommittee. Thank you for inviting me to testify today on so important a subject.

Like so many people in this hearing room, I have been touched directly by Alzheimer’s disease. My mother, Elsa Rose Fabares, died of this hideous illness in September of 1992 after suffering for eight long years from the fear, confusion, dread, increasing incoherence and ultimately infantile state that it so often produces.

But, I’m here today not only as a family member. In a way I’m also here as the panel’s historian. I first testified before Congress about Alzheimer's disease in 1990, and the last time was in 1995, nearly a decade ago.

In the interim, I’ve been struggling with my own health issues – a hip replacement and liver transplant – and the time and attention they require. I’m happy to report that I’m now feeling great and am delighted to be able to come to Washington again to speak on behalf of the millions of individuals and families who are dealing with this disease day in and day out.

Looking back over the past 10 years, I am in awe at what has been accomplished. And I’m keenly aware that this progress has been made possible by the support you and the Alzheimer's Association have given to solving the puzzle of Alzheimer's. To highlight just a few of the remarkable advances achieved:

• The concepts of cure and prevention, inconceivable 10 years ago, are now real possibilities.

• Four treatments have been approved by the FDA and twenty trials are underway with widely used drugs, like ibuprofen and Vitamin E, that might reduce the risk of Alzheimer’s.

• We can now diagnose with a high degree of accuracy, and at much earlier stages of the disease – when available treatments are likely to be most effective. That’s why people with Alzheimer’s, like Frank Carlino who testified several years ago, and Mrs. Orr today are able to come before you and speak for themselves.

• Knowledge of the biology of this disease has opened doors to the possibility of a vaccine that might fight the toxic proteins that cause Alzheimer’s.

• Scientists are closing in on the search for markers that will identify its development long before symptoms appear – a key to speeding drug trials and targeting new medications to those who really need them.

• And, research on therapies and caregiving strategies, as well as on the effects of lifestyle in maintaining cognitive function, all promise to extend independence and keep brains healthy and functioning longer.

When all these accomplishments are added up, it is clear that your investment in research is paying off hugely. Scientists, who are by nature cautious and skeptical, are now positively exuberant about the promise of prevention and treatments that will stop or substantially delay this disease. While they won’t be pinned down on a date, most are quite optimistic that it can and will be done, and probably sooner than we ever imagined.

There is now enough hope and solid scientific backing for the Alzheimer's Association to launch its “Maintain Your Brain” campaign. This campaign draws on scientific evidence linking cardiovascular disease and Alzheimer's, and suggests some relatively simple things people can do to keep their brains as well as their bodies healthy. This, too, is evidence of the value of our investments in research over the past 10 years.

I’ve spent a lot of time traveling around the country talking to individuals and families who are dealing with Alzheimer's disease. A few have been able to come to Washington to tell their own stories, like Christine Frey from Peoria, Illinois, who talked about her seven relatives who’ve already died from the disease and how it hangs like a death sentence over her own life. Like Maureen Reagan. Or 10 year-old Walter Dawson of Falls City, Oregon, who father’s Alzheimer's disease jeopardized his future. Or Catherine Brewer of Northport, New York, or Beverly Hines of Vassalboro, Maine, who suffered terrible stress-related illnesses directly linked to their caregiving responsibilities.

And, now because of better diagnostic tools, more people with the disease are speaking up and speaking out for themselves. No one is better able to convey the urgency of our research efforts than someone living with Alzheimer’s and talking to us in her own voice.

And the voices, sadly, are increasing in numbers, leaving few families untouched. The Coalition of Hope that we are announcing today is further evidence of the growing chorus of Americans who are no longer willing to sit on the sidelines and allow this disease to consume our families and our nation with its voracious and destructive appetite. The coalition members understand all too well that if we don’t continue our commitment to Alzheimer's research we face a bleak future indeed.

Mr. Chairman, when I was last here, science was just building the caissons on either side of this vast Alzheimer’s river, these caissons that would form the foundation for a scientific bridge that someday will allow us to surmount the human destruction caused by this river. But, the bridge is not complete and the river’s rush continues to consume millions of lives. We are well within striking distance and we can finish the bridge, but only if we maintain our investment in research.

Would the public would sit by quietly if we were to stop construction on any of our nation’s major bridges when they were 50% or 80% finished? Of course not. Nor will they – nor can they - sit by if we shift our attention away from completing the job on Alzheimer's disease when we are so close. The millions of victims – past, present and future - demand that the job be finished, and the sooner the better. The consequences of success are huge; the consequences of failure too horrific to comprehend.

For Mrs. Orr and her children, for Christine Frye and Walter Dawson and Frank Carlino … for our parents, our children and ourselves, we urge you to please stay the course so we can someday have a world without Alzheimer's disease.

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