TAMPA — Since June, the USF Health Byrd Alzheimer's Institute has offered a new test to people whose doctors believe they might be in the early stages of the memory-robbing disease.
But so far, they've had just two paying customers.
"It's a lot of money to most folks," said David Morgan, CEO and scientific director of the Byrd Institute.
The $2,960 scan, called Amyvid brain imaging, uses a radioactive dye and positron emission tomography, or PET scan, to detect plaques in the brain that are a hallmark of Alzheimer's.
The cost of the scan is not covered by Medicare. Five people got the test for free at Byrd because of a clinical trial, but now all customers have to pay. Morgan says he thinks there probably would be more takers if there was a drug to eliminate the plaques.
While the test is expensive, center officials still think there may be a market, and sent out an announcement last week that the new scan is available.
PET scanners are not new; what was recently approved by the FDA is the dye that reveals plaques on the scan.
Until now, it took an autopsy to confirm the presence of amyloid plaques in the brain, essential to a diagnosis of Alzheimer's. Doctors rely on clinical exams to diagnose living patients; the Amyvid scan helps doctors confirm it.
And though there's no cure, an early diagnosis can make a difference.
"The drugs that are currently FDA-approved for Alzheimer's slow down the progression of symptoms," said Dr. Amanda Smith, medical director at the Byrd Institute. "They can give patients a memory boost for anywhere from six to 18 months. The sooner they start taking medication, the more function and independence can be preserved."
Amyvid uses a radioactive tracer that is injected and travels to areas of the brain where beta amyloid protein collects. The tracer lights up those areas on PET scans.
A buildup of beta amyloid is believed to trigger the brain cell death that leads to memory loss. The protein is thought to be present in the brain years before symptoms ever appear.
Another reason to have the scan to evaluate symptoms is that not all dementia is caused by Alzheimer's disease. Depression and prescription drug interactions are among factors that also can cause memory loss.
Gloria Smith, president and CEO of the Alzheimer's Association Florida Gulf Coast Chapter, said it's exciting to have another tool to help detect the disease. But there are unknowns.
"We don't know yet how the scan will be used and who should get it," said Smith, who is not related to Amanda Smith.
"People have to realize it's not for screening the general public (who have no symptoms) or people who may have a family history and no symptoms."
There's also the question of what happens with the test results.
Can the information be used to establish Alzheimer's as a pre-existing condition and make it impossible or more expensive to obtain long-term care insurance? Among patients too young for Medicare, the Affordable Care Act protects those with pre-existing conditions from being rejected for health insurance, but the act's opponents vow to try to repeal it.
"There are a lot of unanswered questions,'' Gloria Smith said. "Our national association is looking at this and other forms of imaging so we have some guidelines on how to best use the information."
Although the Amyvid scan is reserved for people with suspected Alzheimer's, screening tools may be available in the future for people who have a family history, but no symptoms. Dr. Smith said that until a cure is available, screening wouldn't be used for the so-called "worried well."
But Morgan says such treatment and screening might not be far away.
There are drugs in development that will fight amyloid if given at the right time, much like cholesterol-lowering drugs are given to prevent heart attacks, he said.
With more research and resources, amyloid screening will be available for a wider group, and medications could reduce amyloid, helping to prevent the disease, Morgan said.
Toni Macaluso of Tampa says she has no symptoms, but is the primary caregiver of a relative with Alzheimer's and has several close family members who have died with the disease.
"I would love to have a baseline (screening) to know how I'm doing," said the retired administrative assistant, 64. "We get tested for cholesterol, osteoporosis, we get mammograms, but nobody checks to see if we have amyloid plaques,'' said Macaluso, who says she'd get tested if she could.
"If I knew, then I would do everything possible to keep Alzheimer's at bay."