December 13, 2012

Alzheimer's: New Brain Scans Advance Diagnoses, While Real Treatment Remains Unavailable

For six months now, a new brain scan technology has been available which clearly detects the presence of beta amyloid plaques in the brain. These accumulations of protein – and the dementia that develops – are the hallmarks of Alzheimer’s disease.

Here’s the rub: the burgeoning science of detection is speeding ahead of our ability to treat the disease in any meaningful way. Does it really help to know that Aunt Clara is on the inexorable slide into dementia, when there’s not a thing anybody can do to help her?

So far, more than 300 hospitals and imaging centers in America already offer the scan, according to Eli Lilly, which sells the tracer substance doctors use to detect the plaques.

In a November 15 New York Times article titled Alzheimer's Detection Advances Outpace Treatment Options, writer Gina Kolata outlines several unusual issues with this new brain scan technology:
  • Diagnostic scans typically don’t require special certification for doctors. Concerned about the implications of flawed interpretation – and certainly aware of the unavailability of meaningful treatment for AD – the FDA requires doctors to pass a test before they can use this new equipment. By mid November, about 700 doctors had passed the test. 
  • The scans are expensive – several thousand dollars. Most insurance providers, including Medicare, do not cover the cost. 
  • Insurers (and employers) are prevented by law from using results of genetic tests to discriminate. The same legal protection does not apply to scans. If a patient’s scan shows amyloid build-up, she can be denied insurance for long-term care. 
  • Radiologists typically use patient information as part of their image interpretations. Not here. Concerned that radiologists’ analyses might echo doctors’ comments, the FDA requires that technicians know nothing in advance about the patients whose brains they’re scanning. 

Inconsequential Options?
What can you do if the new scan shows serious plaque accumulation? Not much. Some patients see psychiatrists to help cope with understandable anxiety. Others seek clinical drug trials, even if untested meds bring unpleasant, even unknowable, side effects. Still others do things their budgets allow, like altering diet and getting more exercise… although there is still no evidence that anything can slow the progress of degeneration.

Kolata’s article reported that one man, whose wife’s scan showed considerable protein build-up, began giving her “remedies” he found online, including turmeric, coenzyme Q10, astaxanthin, krill oil, ginkgo biloba and coconut oil.

As science advances our capacity for diagnosis, we have to confront the sad reality of our continuing inability to offer any meaningful treatment for the millions of Americans with AD.

Hope from NAPA
A year ago, I wrote about the looming war on Alzheimer's. That post began:
[On January 16 and 17, 2012], representatives from Health and Human Services met with medical experts to discuss the National Alzheimer's Project Act (NAPA), which was passed by both houses of Congress and signed into law by president Obama on January 4, 2011. NAPA – when finalized -- is intended to treat and prevent Alzheimer’s disease by 2025, and will resemble the wars on cancer and heart disease. 
Through the past decades, we’ve made progress fighting – in some cases even preventing -- cancer and heart disease. Will we be able to say the same thing about Alzheimer’s years from now?

I’ve got to hope we will.

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