Reagan's Experience Alters Outlook for Alzheimer's Patients

By Shankar Vedantam
Washington Post Staff Writer
Monday, June 14, 2004

An Alzheimer's diagnosis means something very different today than when former president Ronald Reagan announced 10 years ago that he had the illness: More than any other Alzheimer's patient in history, Reagan -- with his fame and sunny personality -- dramatically reduced the stigma attached to the deadly degenerative disease, advocates say.

Nancy Reagan, furthermore, has championed the cause of Alzheimer's patients with the kind of clout that few other caregivers could wield, and the Reagan name has helped raise millions for research. Nancy Reagan has also led the fight against federal restrictions on embryonic stem cell research -- discreetly challenging President Reagan's most prominent admirer, President Bush, who imposed the restrictive policy.

Although the frustrating, day-to-day reality is that new drugs for Alzheimer's disease have limited benefits, researchers say recent discoveries have closed major scientific gaps and that developing more effective treatments is now only a matter of public and political commitment -- support that may be forthcoming as the nation commemorates Reagan's life and death.

"We will cure Alzheimer's disease as quickly as you want us to," said John Trojanowski, director of the University of Pennsylvania's Alzheimer's Disease Center. "The limiting step is not knowledge, but resources."

About 4 million Americans suffer from Alzheimer's. Because the single biggest risk factor is age, a tidal wave of cases is expected to swamp the health care system as the baby-boom generation ages. By the time they turn 85, one in two Americans has the disease.

When Reagan announced his illness in 1994, Alzheimer's advocates were still struggling to convince many families that the fading memory and debilitating loss of function that patients experience were not just inevitable aspects of aging. Many patients hid their illness, and the fact that far fewer do so today is a tribute to Reagan, said Sam Gandy of the Alzheimer's Association, a national nonprofit advocacy organization.

"Reagan helped make the world aware of that -- that this was a disease," Gandy said. "The stigma is not completely gone, but the Reagans have done more than anyone else to smash that."

In 1995, the Reagans launched the Ronald and Nancy Reagan Research Institute at the association, which Gandy said has helped to raise and distribute about $15 million for research into the disease. Nancy Reagan is an honorary board member at the association, and President Reagan's daughter Maureen was an active board member until her death in 2001.

Ten years ago, Alzheimer's experts were grappling with a confusing array of clues, symptoms, genes and causes for the disease.

The center of gravity has increasingly shifted to the role of tiny particles in the brains of Alzheimer's patients. The particles, called plaque, were discovered first during autopsies, and researchers had no way of knowing whether they were a result of the disease -- or a cause of it. Research in the last 10 years strongly suggests the latter.

Three approaches to eliminating plaque are in various stages of testing. The first involves vaccinating patients against plaque -- triggering the immune system to treat it as an intruder. In animal experiments, a vaccine has protected mice that are genetically prone to developing plaque.

A human safety trial of the vaccination was successful, but the Food and Drug Administration halted the next trial when 5 percent of patients developed encephalitis -- an inflammation of the brain triggered by the body's immune response, Gandy said. Still, he said, results to be presented next month at an international Alzheimer's conference in Philadelphia show that patients with the best immune response experienced a slower decline in their mental capacity.

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