One expert is warning us about the unintended side effects which include the overusage of medications which are modestly effective.
Juli Engel got overly happy to hear that a neurologist recommended a PET scan for the determination whether amyloid - the protein clumps had anything to do with Alzheimer's, was building up in the brain of her mother.
Ms. Engel 65 who is a geriatric care manager in Austin Texas said that she was delighted to hear that, and she has been visiting her mother in Florida every month to help her out. She believes that the doctor is using everything in his power and using every tool to see what's going on.
Sue Engel is 83 and is living in Leesburg, Florida in a retirement community, is experiencing problems with her memory and signs of cognitive decline for several years now. Her daughter noticed the red flags: Her mother was exploited financially, got through an insurance scam and had a car accident.
Medicare does not cover scan costs that predict Alzheimer's
Medicare officials in 2013 shortly after PET (positron emission tomography) have decided that amyloid imaging was available and they lacked proofs of its health benefits. So Medicare does not cover the scan's costs that vary from ($5,000 to $7,000) and neither do private insurers.
Juli Engel feels that Medicare has to repay for the scan, but she said that if it is necessary they will pay for it themselves.
Her mother is suffering from Alzheimer's disease already and is taking a drug that is commonly prescribed for dementia. So she most likely does not reach the Alzheimer's Association and nuclear medicine experts criteria, which call for PET scans only when there are unclear diagnoses or unusual symptoms which can't be explained.
But evidence indicates that damage of the brain occurs years before Alzheimer's symptoms start showing up, so patients and families want to see if they have this biomarker with PET scans.
Scientists are able to predict development of plaques in the brain
Scientists at Washington University in St.Louis announced that they can predict the development of plaques in the brain by developing a blood test for amyloid, but it may take a while before doctors start using it.
Some experts believe PET scans are not beneficial and are only additional costs. Dr Kenneth Langa who is a researcher at the University of Michigan and an author of a recent article in JAMA Internal Medicine about early Alzheimer's disease says that there are lots of financial incentives for testing and interventions. She hopes that we will ponder about the unintended downsides.
But what kind of downsides? Amyloid plaques are common in the brains of older people, but not everyone that has them will develop dementia. And also a negative PET scan is not a sign that someone will develop it.
Biostaticians at the University of California, Los Angeles, calculated that a man who is 75 years with amyloid has about 17.2 percent risk to develop Alzheimer's and a woman with the same age the percentage will be around 24.
That happens because Alzheimer's affects people at older age who could die from other factors before they develop the symptoms. (With a condition called mild cognitive impairment or additional biomarkers, the lifetime risk rises.)
Older people along with 30 percent of those with amyloid keep normal cognition inexplicably.
Dr.Langa said that if patients who had preclinical Alzheimer's got treatment, a lot of people would be treated before dementia kicked in.
Are drugs for Alzheimer's beneficial for patients
Furthermore a lot of trials failed to find drugs that reverse, slow or prevent Alzheimer's, maybe because they were used too late while treating the disease.
A different approach that included an infusion drug tested in older people with amylooid but without cognitive impairment is several years away.
Dr.Ronald Petersen a neurologist and director of the Mayo Clinic Alzeimer's Disease Research Center asked whether he would like amyloid information about the patients which had symptoms and said that he might not be able to do something in the present about it.
Drugs which are accepted for Alzheimer's like Aricept and Namenda benefit the patients for only a certain amount of time. But they have not yet been proven to be effective in treating mild cognitive impairment which is considered to be a precursor to dementia.
However a study recently published whose aim was to provide Medicare with more information hoping to reverse its reimbursement decision prooves that positive amyloid PET scans can be more useful than other medications.
The impact of PET on patients with MCI or dementia
A study named "Imaging Dementia - Evidence for Amyloid Scanning" analysed a treatment of 11,409 Medicare beneficaries that had dementia or mild cognitive impairment and had an average age of 75 nationwide. While 55 percent of the patients had amyloid which were detected by PET scans and 70 percent suffered from dementia and their cases were affected by these results in several ways.
One of the changes were soaring prescriptions. Around 40 percent of patients suffering from mild impairments were taking Alzheimer's drugs and the proportion doubled as soon as a PET scan discovered amyloid plaques. And as for patients with dementia, the usage of dementia drugs went from 63 to 91 percent after a positive PET scan was performed.
A negative scan followed by stopping the drugs was rare, and it is something common in medicine stated Dr. Langa. "It is hard to stop a treatment once it has been started".
And whether those changes are leading to better health will be assessed by the second round of the Ideas study. Are patients less likely to be hospitalized or go to emergency rooms? Are the costs going to rise or fall?
Researchers expect the publishing of the findings early next year. If the patients are shown to benefit from it, the Alzheimer's Association are going to ask Medicare to once again think about the decision they've made earlier and to cover PET scans for most of the patients with unexplained or atypical symptoms.
Those who question a wider access are concerned about "indication creep" it happens when some patients with a particular condition get approved a drug or test that is used for other patients. They also worry about the costs for Medicare.
Do doctors recommend PET scans
"I wouldn't recommend a scan even if it is for free" said Dr. Ken Covinsky, a geriatrician at the University of California, San Francisco.
"What is the point of knowing that you have amyloid in your brain, when there is a possibility that cognitive problems may never develop in the future?"
In theory PET scans may change the lifestyle of patients if they discover their amyloid status. Exercising, eating healthy foods, and stopping cigarettes will help in reducing dementia, even among patients that have a higher genetic risk of its development. Maybe patients will also consider advance care planning.
Dr.Covinsky said that those things are good to be done regardless of the fact if one has amyloid or not.
At the time patients are prevented to take PET scans due to the costs. If Medicare pays than people will find ways to be scanned.
"Educating doctors will help the patients who use it inappropriately" said Maria Carrillo, chief science officer at the Alzheimer's Association.
But there are people who want the validation and nobody can stop them from doing that, and Juli Engel is most definitely one of them.
Once her mother's incapacity is documented by a neurologist, she can persuade Sue Engel from driving and offer her assisted living when she needs it. She said that she understands the trajectory of the disease.
She is also aware of the fact that her mothers parents have Alzheimer's so she is thinking about whether she has amyloid in her brain too. Her family's right as scientists is to know these things.
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