Battling the Beast: Alzheimer's Advocates Take Case to Congress

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March 21, 2000 (Washington) -- Those who've experienced the devastating effects of Alzheimer's disease told a friendly panel of lawmakers on Capitol Hill that the clock is ticking on efforts to control what will otherwise become an epidemic of the mind-robbing disorder among baby boomers.

Former President Ronald Reagan's daughter Maureen told the senators that her father is doing well, although his mental deterioration from Alzheimer's disease continues. "So for my father ... and individuals across America, who are praying for help, I plead with you to redouble our effort," she testified.

"My life is slipping away. ... I am drowning. Save me, please," Frank Carlino told a subcommittee hearing of the Senate Appropriations Committee Tuesday. Carlino, a former architectural consultant, was diagnosed with early onset Alzheimer's disease when he was just 58 years old in 1998.

The Alzheimer's Association says that by midcentury the number of Americans living with Alzheimer's disease will grow by 350% to 14.3 million, and the advocacy group is asking Congress to allocate $100 million more for research into ways of preventing or treating the disease. The current federal commitment is about $466 million.

According to Steven DeKosky, MD, director of the Alzheimer's research center at the University of Pittsburgh School of Medicine, these big studies can cost $20 million and take five years to complete. An NIH-sponsored study of the herbal ginkgo biloba, which may inhibit brain cell damage, is just about to begin. Other promising approaches include a vaccine to prevent the disease, anti-inflammatory drugs, estrogen, or vitamin E to slow disease progression in those with a mild form of the disease.

Delaying the onset Alzheimer's by just five years could save as much as $50 billion a year, says DeKosky. "These studies ... are directed toward the group that is currently now between 50 and 65. ... You could put people on safe and effective medications and effectively delay the onset of disease until after their normal life expectancy." There is no cure, but in theory, it's possible to make the disease as preventable as pneumonia or the flu.

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As things stand now, the annual cost of Alzheimer's disease is expected to rise from its current $100 billion to $375 billion by midcentury. "So our message to your colleagues is very simple. There is no way that you can save Medicare and Medicaid without bringing Alzheimer's disease under control," said Orien Reid, chairman of the Alzheimer's Association board of directors.

Reid says it costs about 70% more to treat beneficiaries of these hard-pressed government insurance programs who have Alzheimer's disease. "For each of us in this room and for anyone who's ever been touched by Alzheimer's disease, senators, we are simply in a race against time," said Reid.

Some 500 representatives of the association have come to Washington to lobby Congress for more dollars to fight Alzheimer's disease, and many who watched the one-hour hearing wiped away tears during the emotional testimony.

Subcommittee chairman Sen. Arlen Specter, R-Penn., and Sen. Tom Harkin, D- Iowa, are co-sponsoring a bipartisan resolution that would add $2.7 billion to the NIH budget, including the $100 million for Alzheimer's research. Harkin said he was shocked to learn that one of his former grade school teachers had come down with the disease, and that her health had deteriorated drastically in a very short time.

Maureen Reagan says only Alzheimer's disease could have kept her father away from today's hearing. "If this were any other disease, he'd be here doing this, and making sure that everybody got help," she told WebMD.

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