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New Alzheimer's law aims to coordinate efforts, strategy

Mary Brophy Marcus USA TODAY

01-06-11

Alzheimer's disease, already a national epidemic according to experts, got a lift this week.

On Tuesday, President Obama signed the National Alzheimer's Project Act (NAPA) into law.

NAPA's aim is to create a coordinated national strategy that deals with Alzheimer's, a brain-wasting condition projected to leap from 5.3 million cases this year into the double digits by midcentury. No. 6 on the list of top 10 causes of death in the USA, Alzheimer's is the only one without an effective way to prevent, cure or even slow the disease, says Robert Egge, the Alzheimer's Association's vice president of public policy.

"We are very enthusiastic about NAPA. We've been pushing for it," Egge says. "It's our first opportunity as a country to be proactive about our strategy with Alzheimer's and to stop being reactive."

In a statement, Alzheimer's Association president Harry Johns said the law couldn't come at a better time. The number of Alzheimer's cases has increased more than 50% from 2000 to 2007. "The Alzheimer crisis is no longer emerging. It is here," Johns said.

Though the new law doesn't in itself deliver money for research to find a cure or support services for patients and caregivers grappling with the disease, it will help establish an interagency council that will work with the secretary of Health and Human Services to give a full assessment of what needs to be accomplished to stem the disease.

Alzheimer's economic burden is a major concern, Egge says. Under current conditions, total care costs could escalate from $172 billion today to more than $1 trillion by 2050, he says.

"Alzheimer's leaves American families, Medicare, Medicaid and our health care system defenseless against skyrocketing costs," he says.

Coordination is a good first step, people living with the disease say.

"I'm glad Obama signed the law," says Bob Blackwell, 68, a 30-year CIA veteran who was diagnosed with early-onset Alzheimer's four years ago.

Bob's wife, Carol, who writes an Alzheimer's blog for USA TODAY with him, says "it's very promising." But she says much more money is needed for research, and she'd like to see better support services for families, especially just after diagnosis.

Medical experts agree that dollars need to be streamlined into finding effective treatments.

"This is terrific, but I do think there needs to be emphasis on basic research because right now, if you're diagnosed with Alzheimer's, we absolutely have no treatment," says Roy Smith, chair of the Department of Metabolism and Aging at the Scripps Research Institute in Jupiter, Fla.

Longtime Alzheimer's researcher John Trojanowski, director of the University of Pennsylvania's Alzheimer's Disease Core Center and head of Penn's Institute on Aging, says he "almost got up and danced on the table and sang" when he heard Obama signed NAPA.

"This bill is huge. It's not putting the money in place yet, but having an Alzheimer's czar will be transformative. I hope it will be someone who really knows Alzheimer's," says Trojanowski, 64. He says he believes a treatment is possible in his lifetime if the cause draws the kind of money that cancer and heart disease have garnered, for example.

"A cure is a matter of the will of the American people. We (researchers) have the targets, we have the ideas, we have the technologies. None of this we had in 1985. But we don't have the funds," Trojanowski says.

He says even a drug that could stave off the disease for five additional years would offer major economic and social relief.

Without a major financial commitment, Trojanowski says, he's concerned about what the future will look like.

"Just think of the homeless. The worry is that the new homeless will be older, demented individuals who can't find their way home, who don't know where they are, and have no caregivers."

To see more of USAToday.com, or to subscribe, go to http://www.usatoday.com

Copyright 2009 USA TODAY, a division of Gannett Co. Inc.

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