USF Alzheimer's center rising above shortcomings in research

The National Institutes of Health came out with some bad news last spring with a review of all the things people do to fight Alzheimer's disease.

Taking ginkgo biloba, exercising, doing crossword puzzles. There's no proof that any of it works, a special NIH panel concluded.

But the CEO of the University of South Florida's Alzheimer's institute, David Morgan, liked what he read.

The panel's top recommendation points researchers in a direction that the USF institute has already started to take.

Solid diagnosis is critical, the panel said. Before researchers can find out how to prevent or cure Alzheimer's disease, they have to figure out when someone truly has the disease and how far it has progressed.

Just this week, Morgan put in an order for a positron emission tomography (PET) scanner for the USF Health Byrd Alzheimer's Institute. And the institute is planning a redesign of its second floor to create what he believes will be a one-of-a-kind diagnostic center.

"In the next several years, I think we'll be able to do things that will really help people who have or fear having this disease," Morgan said.

With proper diagnosis, Nancy Luce and her husband John would have known she had Alzheimer's long before she was getting lost in her own south Tampa neighborhood.

Before the couple retired, they spent five years building a boat, which they named Lucida. The two sailed the Caribbean and along the eastern U.S. coast for two years.

"She was amazing," Luce said.

Doctors told Nancy Luce she had Alzheimer's 12 years ago, when it was obvious something was wrong. She was 75.

She participated in three drug trials through USF. Nothing worked. One drug showed promise but was pulled because some patients suffered from side effects.

Now John Luce, an 82-year-old retired electrical engineer, has nearly exhausted the couple's savings, spending about $60,000 a year on Nancy's care at an assisted living facility. For a while he was spending $4,000 a year on a drug that helped her minimally, if at all.

If he could have her back as the bright, competent woman he knew, "that would be fantastic," he said.

But would early diagnosis have helped?

What's the use of knowing if there's no way to prevent the disease or stop it from progressing?

The issue in the NIH review was not prevention doesn't work. It's that no one knows, because the effectiveness studies were flawed. They didn't follow participants long enough, for instance. In some cases, it wasn't even clear the participants had Alzheimer's or some other condition that caused memory loss.

A few were sound, including one that debunked ginkgo biloba.

The NIH panel said that research is "critically required" to come up with a solid, early Alzheimer's diagnosis. The more researchers know about when and where the damage begins, the closer they get to stopping it.

Alzheimer's researchers are grimly familiar with amyloid plaques, the sticky, clumped bits of proteins and nerve cells that signal the brain damage of Alzheimer's. But the only sure-fire evidence of those comes in an autopsy.

Short of that, they rely on memory tests, which are revealing but don't show anything definitive until the disease is far along.

That may be why so many drug research trails have failed, said Nilufer Ertekin-Taner, assistant professor of neurology and neuroscience at the Mayo Clinic in Jacksonville.

"Maybe they were too late, the disease was too far advanced when we started giving the drugs."

"We need tools, biomarkers," she said, "some sort of marker that says you are at risk, like cholesterol with heart disease."

There are telltale proteins in spinal fluid, but who can get regular spinal taps?

Some of the most promising research today is with the use of detailed brain scans to find the earliest signals of amyloid in the brain, Ertekin-Taner said.

In March, researchers in Finland reported that they used PET scans to show that a drug called bapineuzumab reduced amyloid deposits in the brains of people in the early stages of the disease.

They're being cautious because the drug was successful only in a small number of people. But it's a solid lead.

"It showed that in some patients, the bapineuzumab hit the target," and that the PET scan was a reliable way to find amyloid in a patient's brain, Morgan said.

USF enrolled some of the patients involved in the bapineuzumab clinical trial, though they weren't involved in these findings.

USF is testing several potential Alzheimer's treatments.

It will soon begin a clinical trial of a substance found in people with rheumatoid arthritis, who are less likely than most to get Alzheimer's. It already exists in drug form as Leukine, given to some cancer patients to help boost their immunity.

"I'm cautiously hopeful," said Huntington Potter, lead researcher and director of the Florida Alzheimer's Disease Research Center, based at USF.

"I'm cautious because we've been hopeful in the past and been disappointed."

Morgan envisions a place at the USF's Byrd institute where people who fear they have Alzheimer's will spent a half a day taking a battery of tests with half a dozen specialists - neurologists, psychiatrists, geriatric doctors. The test would include family histories, memory tests and scans.

He likened it to the Moffitt Cancer Center, which is on the USF campus.

"We want to be in some sense like Moffitt," he said. "We want to have a very active research program, not only with drug testing, but also with caregiving issues."

The new diagnostic center would be outfitted with mock bedrooms and kitchens - perhaps one day a driving simulator - to measure patients' abilities to get along in daily life.

Morgan hopes to have parts of it running by next summer, but Byrd is still trying to raise the $3 million to $4 million it will take to build it.

It's a small investment compared to the enormous costs of the disease, he said.

Costs for a typical Medicare patient are about $10,000 a year. Medicare costs jump to $30,000 for the person with Alzheimer's. This doesn't include nursing home costs and caregiver losses.

John Luce has lived those losses. As his life savings have drained away, he's watched his wife lose her memories of building a boat piece by piece and sailing from Maryland to the Bahamas.

"We need to keep pushing on the research," he said. But he knows what it feels like to have hope, then be disappointed when the treatment doesn't work out.

"We have to look beyond all the research claims to see what the real truth is."