Testimony Of Phyllis Campbell (Written Testimony Only)
President, Urban League Of Lancaster County,
Pennsylvania Lancaster, Pa

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

March 23, 2004

Good morning, Senators. Thank you for inviting me here today. I am honored – and a bit overwhelmed – to sit here with people who are devoting their lives to the fight against Alzheimer’s disease. And I want to pay a special tribute to Coach and Mrs. Orr for their courage in sharing their very personal story.

Let me make clear at the outset that I am not an expert on Alzheimer’s disease. I have friends and acquaintances who are struggling with this awful disease, and I see the horrible toll it is taking on them. I consider myself fortunate that my family does not have first hand experience with this disease.

So, why I am testifying. I am here as the President of the Lancaster County Urban League. We are one of more than 150 organizations, representing over 53 million people, that have joined the Alzheimer’s Association in a Coalition of Hope, to bring more attention and resources to the fight against Alzheimer’s disease.

As you know, the African-American community faces many public health crises – from infant mortality, to AIDS, to heart disease and diabetes. While our attention was otherwise focused, Alzheimer’s disease has invaded our community and stolen from us some of our richest resources – our grandparents, our parents, our spouses.

Alzheimer’s has become a silent epidemic among African-Americans. But we can be silent no longer. That is why we, like many other Urban Leagues around the country, have joined the Coalition of Hope.

There are at least five compelling reasons why African-Americans must join the fight against Alzheimer’s.

First, we are getting older – and age is a key risk factor for Alzheimer’s. By the middle of the century, there will be four times as many African-Americans aged 65 and over than there are today (11 million compared with 2.8 million in 2000). And there will be six times as many of us aged 85 and over (over 2 million compared with 300,000 today) – when we will be most at risk for Alzheimer’s. If we come down with Alzheimer’s at the same rate everyone else does, more than 5 million African-American babyboomers will get Alzheimer’s disease.

Second, there is evidence we may be at greater risk than others. I’m told that three out of four studies that have looked at Alzheimer’s in our community show rates of dementia ranging from 14% to 100% higher than in white Americans. We need to figure out why this is happening, and what we can do about it.

Third, there is growing and alarming evidence that Alzheimer’s may be linked to vascular disease, which is rampant in our community. I’ve heard about the study that shows people with high blood pressure are twice as likely to get Alzheimer’s. That frightens me, because 65% percent of African-American elders have hypertension (compared with 51% of white elders.) And African-Americans have a 60% higher risk of type 2 diabetes – a condition that contributes directly to vascular disease.

Fourth, dementia among African-Americans is seriously unreported. We tend to be diagnosed at later stages of Alzheimer’s, even though everything I’ve heard is that treatment works best when it is started early in the disease. We must get our community to recognize the early signs of dementia, to understand that this is not just normal aging, and to seek evaluation and treatment.

Fifth, we must make sure that potential treatments for Alzheimer’s will work for African-Americans. There is growing evidence that the genetics of Alzheimer’s may be different in African-Americans, and that our response to drug treatments may vary. NIA must have the resources it needs to identify all of the genetic risk factors for Alzheimer’s disease, and to speed up the clinical trials of promising drug therapies. And we must make sure there is enough money in those studies to involve sufficient numbers of African-Americans in order to draw valid and specific conclusions for our community.

That is why I am here today, on behalf of the Lancaster County Urban League and all of the members of the Coalition of Hope – to urge you to provide sufficient funds for NIA and NIH to complete its work on Alzheimer’s disease. So that Alzheimer’s will become nothing more than a memory, not just for African-Americans but for all of us.

Thank you.

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