Testimony of Sheldon Goldberg
President & CEO, Alzheimer's Association
Chicago, IL

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

March 23, 2004

Senator DeWine, Senator Harkin. Thank you for inviting me back to talk to you about Alzheimer’s disease. I am even more excited to be here today than I was last year at this time.

The Alzheimer’s Association’s goal of delaying the disabling symptoms of Alzheimer’s disease, and eventually preventing the disease now appears possible. For the first time, creating “A World Without Alzheimer’s” is within reach. And it’s because of you -- your vision in claiming the Alzheimer research agenda and your steady, sustained commitment to moving it forward.

Because of your leadership, we can go to the American people now with a new message of hope. We can – we will -- have a future where Alzheimer’s disease is only a memory.

This morning, I speak not just for the Alzheimer’s Association but also on behalf of a new Coalition of Hope, which we are announcing today.

This is a coalition of over 150 organizations, representing more than 50 million Americans, who have joined the fight against Alzheimer’s disease. You can count on us to support of your efforts to increase funding for Alzheimer research and services.

The Coalition includes groups you might expect to see -- the Older Women’s League, the Family Caregiving Alliance, the National Center and Caucus on Black Aging, AARP, the National Association of Retired Federal Employees. We are grateful for their support.

But this movement extends far beyond the aging community. Take a close look. It includes, for example:

• The Pennsylvania Grange, Iowa Eggs and Milk Producers, and the Kentucky Farm Bureau

• The Idaho Fraternal Order of Police and the Tennessee Firemen’s Association

• The Mississippi Association of School Administrators

• The Indian Tribes of Alaska, the Urban League, the NAACP and LULAC

• Southern Baptist, Catholic, Episcopal, Jewish, Assembly of God, Presbyterian, and Assembly of God Congregations

• Locals of the International Brotherhood of Electrical Workers and Teamsters

• State legislators and county governments

• The Sons of Italy and the Polish American Congress.

Why, one might ask, have all these “unlikely suspects” made Alzheimer’s their cause. They have joined us in the fight against Alzheimer’s because it’s a disease that touches so many families and communities. It doesn’t recognize race or income, or whether you live in a big city or small town. But for the first time ever there’s hope to significantly delay the onset of the disease and lessen its impact. These organizations have joined us to ensure that Alzheimer’s disease need not be inevitable or hopeless.

But left unchecked, Alzheimer’s will undermine our families, communities, and basic economic security.

It will overwhelm our health care system, bankrupt Medicare and Medicaid, drain billions of dollars from American business, and destroy retirement security for tens of millions of families.

• Today, 4.5 million Americans and their families are already facing Alzheimer’s, with all of its emotional and financial devastation.

• Millions of workers are leaving their jobs or cutting back work to provide Alzheimer care. That lost productivity is the major reason why Alzheimer’s is costing American businesses an estimated $61 billion.

• Medicare is spending 3 times more on beneficiaries with Alzheimer’s disease. Six years from now, Alzheimer’s will cost the program $50 billion.

• State Medicaid programs are spending $18 billion to help people with dementia pay for their nursing homes. That will bill be 80% greater by 2010.

But this is all just the tip of the iceberg. The babyboomers are still below the surface. When Alzheimer’s starts to hit them, the numbers will begin to skyrocket. By the middle of the century, 11 to 16 million could have the disease. We will not be able to withstand the explosion of costs – to families, to taxpayers, to the health care system, to American business.

The Coalition of Hope is organized to make sure that does not happen. If the current pace and momentum is maintained we may be able to delay the onset and progression of the Alzheimer’s as well as prevent the disease, saving not only billions of dollars to our health care system but also saving millions of lives. The baby boomers may indeed be the first generation not having to face Alzheimer’s.
But for those who may still get it, we will slow its progression enough that most will never reach the advanced stages of the disease. That means we will no longer have nursing homes filled with people with dementia.

This is not the time to tell the scientists to slow down. But that is exactly what will happen unless we continue to expand the public investment in Alzheimer research.

• Thanks to your investment, the best scientists in the world are chomping at the Alzheimer bit – and that means NIA is receiving record numbers of applications. But at current budgets, they will be able to fund only about 15 percent of those proposals – for less than the 20 – 25% of past years. And they can only do that much by cutting one of every five dollars out of the successful grants. Think how many scientific opportunities we are missing.

• Even existing, highly productive program projects are at risk. The Healthy Aging and Dementia project at Washington University in St. Louis is just one example. This is the team that created the assessment instrument that is now the clinical standard. They discovered with others the concept of mild cognitive impairment. Now they have turned to the next critical question in Alzheimer prevention – how to identify “normal” adults who are at high risk, so we can treat them in time. The St. Louis team started recruiting people in their 40s and 50s whose parent had Alzheimer’s. These volunteers have been through a lot already -- blood draws, lumbar punctures, and MRIs. But they are going to have to put that study on hold, because NIA is cutting their approved budget by 30%.

• What about the large scale clinical trials that have been so much the focus of this Committee’s concern? After all, research doesn’t mean a lot in the real world until we are successful in getting science from the bench to the bedside.

  • Scientists at the University of California in San Diego are poised to start the next big trial of combinations of anti-oxidants. This offers one of the most exciting possibilities for a safe and relatively inexpensive way to protect against Alzheimer’s. But NIA does not have the money to get it started.

  • Even trials that are well underway – like the ginko biloba trial Dr. DeKosky testified to this Committee about – will have to be slowed down. There may be no money to analyze the data that has already been collected on the hundreds of volunteers who have participated in this trial.

This is a travesty. We cannot let it happen.

We know you face many competing priorities, with very little discretionary money in the budget.

We understand that, after doubling the NIH budget, there are those who are ready to say, “we’ve done enough.”

But if we slow down now, we will be throwing away much of the investment the American taxpayers have already made in Alzheimer research.

We must continue, and build on, the progress of the last twenty years.

We are asking you to increase funding for Alzheimer research by $40 million for fiscal year 2005 to maintain the ongoing national collaborative research to improve neuroimaging technologies for early detection and large-scale clinical trials to test the effectiveness of vitamins and other large-scale clinical trials for treatments that would slow or delay the progression of Alzheimer’s.

Research on Alzheimer’s is on the brink of major breakthroughs that will provide the effective means to delay and, ultimately, to prevent the devastation of dementia.

This effort will not be possible without your support, the Coalition of Hope, and the nationwide network of investigators working closely with the NIA’s 29 Alzheimer’s Disease Centers around the U.S.

That is a modest request, given the urgency of the Alzheimer crisis and the enormity of the scientific opportunities. But it would be enough to sustain the momentum in tough budget times.

On behalf of the Alzheimer’s Association and the entire Coalition of Hope, thank you.

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