TAMPA — Every week, people worried about losing their memories call the University of South Florida's Byrd Alzheimer's Institute for help. They go in, get various tests and find out whether they have a disease that now afflicts 5.1 million Americans.
But in the near future, Byrd officials also hope to start hearing from a different crowd: younger people with no memory impairment.
Much of the buzz in the Alzheimer's research community is over early detection. The hope is that drugs and treatments that don't do much once the disease is established might work better if given earlier in the disease process.
The stakes are enormous. In addition to the cost in suffering, Dr. David Morgan, the Byrd institute's CEO, estimates that Florida alone spends more than $1 billion of its $17 billion Medicaid budget on care for Alzheimer's patients in nursing homes.
As huge as the Alzheimer's toll is now, it will only escalate as the baby boomers age unless effective treatments are found. It's a public health problem that many fear will sink the nation's already overburdened care system.
Joining research colleagues around the nation, Byrd officials soon plan to use a new brain scan that can detect the presence of amyloid plaques, considered by many the signature biomarker of Alzheimer's disease. Experts say the plaques begin to damage the brain a decade or so before symptoms of dementia or Alzheimer's begin.
But given that there is no effective treatment today, why would people with no memory problems want to know they are likely to slip away into a future without memory or cognition?
Doctors insist there are good reasons to sign up for testing. Besides the possibility of better outcomes with early treatment, detection would also give patients and families more time to plan for the future, both emotionally and financially. For instance, they could make changes in living circumstances that would preserve their independence and postpone the need for institutional care.
A study by researchers at Johns Hopkins University, published in the American Journal of Public Health, estimated that delaying the onset of symptoms by one year in every Alzheimer's patient would save the nation $10 billion annually.
Scientists at Byrd and other centers want to know if promising new drugs currently in the late stages of clinical trials could prevent the disease from ever developing. But to do that, they would need to find people who are fated to get Alzheimer's.
"Once we tie all these pieces together, we might be able to prevent the disease," said Dr. Amanda Smith, medical director for the Byrd institute.
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Morgan likens the way Alzheimer's is diagnosed today to reaching over a cliff to help someone who has already fallen off.
In other words, too late to be of real help.
Currently available drugs, such as Aricept, treat symptoms of the disease but do not slow its progression. And studies on the benefits of lifestyle measures such as physical exercise, a healthy diet and doing brain games have been inconclusive.
So, much of Alzheimer's research has focused on finding a way to detect the disease earlier, and on drugs and treatments that fight the causes of it, not just the symptoms that result from it.
Advances in brain scans have allowed doctors and researchers to see what once was apparent only during an autopsy — the clumps of the protein beta amyloid, which is found in the brains of nearly every Alzheimer's patient. It's widely believed that the amyloid buildup triggers a series of events that kill brain cells, leading to memory loss and cognitive decline.
There are more than 80 drugs at various stages of testing, many of which are aimed at reducing amyloid buildup. Morgan said one in particular, bapineuzumab, has shown great promise, and is currently in Phase 3 clinical trials, one of the final steps before approval.
The Byrd center recently purchased a $1.3 million positron emission tomography (PET) scanner, which is expected to arrive in coming months. Also pending this year is FDA approval of a new tracing chemical that will be injected into the patient before the scan to highlight the amyloid plaques. Current tracing chemicals used in PET scans only allow doctors to differentiate between Alzheimer's and other types of dementia.
Morgan said Byrd's new PET scanner will initially be used on patients with symptoms of the disease. The scanner will be part of a new comprehensive care clinic the institute will open in July. For those patients, the amyloid scans can help doctors make a more definitive Alzheimer's diagnosis, beyond the written and verbal tests they currently use.
But the next step would be to recruit patients who have no symptoms, but who have Alzheimer's disease in their families.
Studying those patients over time could help determine whether drugs like Aricept are more effective if given earlier, whether other drugs — even ibuprofen — might be beneficial, or whether there's anything else that might delay or prevent the onset of symptoms.
Morgan couldn't say exactly when screenings for symptom-free people might begin — perhaps in a year or so — but when they do, subjects will be carefully selected to participate in clinical trails. Also, counseling would be offered to help patients cope with potentially devastating news.
Someday, Morgan said, he hopes amyloid scans are considered as routine as mammograms and pap smears, or screening tests for heart disease.
"Essentially, all of those are routine procedures performed on people who don't have symptoms to identify if they are at risk for a certain disease," Morgan said.
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But for now, early detection doesn't offer much of a health advantage, doctors acknowledge.
So recruiting people to get screened when they have no symptoms could be a tough sell — even for people who fully understand the need to prevent or cure Alzheimer's.
Consider Sherrill Tomasino and Johnnie Byrd, two members of the Byrd institute's board of directors. Both have parents who died from the disease, but neither has any symptoms of it. They would be among the candidates considered for an early screening.
"I obviously see the benefit of early detection," said Tomasino, 66, the board chairman. "But until they're actually able to do something with that information, do I really want to know? I'm not sure."
But Byrd, 59, the former state House speaker whose father is the institute's namesake, would.
"Sure, I'd want to know," he said without hesitation. "If they could detect it earlier, it would be great."
Richard Martin can be reached at firstname.lastname@example.org or (727) 893-8330.