This AP story covers the publication of new research guidelines for diagnosing Alzheimer’s disease.
The story did a lot of things well — chiefly, it makes it clear for readers that the guidelines are for research purposes only, and will not be used in clinical decision-making. Still, we would have liked to see comment from an independent source on how this news might be misconstrued, especially by readers worried about their own risk for developing the disease. We further take issue with the call to interested readers to join clinical trials (in order to find out what their brains look like) without the mention of possible harms of a positive finding for a disease with no treatment.
Anything to do with Alzheimer’s disease is newsworthy, because of the ever growing numbers of Americans who have the condition (currently at 5.7 million). A change in diagnostic guidelines that will bump numbers of those diagnosed with the disease is cause for concern, particularly given the paucity of treatments. This change may be advantageous for researchers, interested in plumbing the early molecular events that underlie disease progression, but for now it’s not at all clear that it’s beneficial for patients now or in the future. Screening is not always better–it can led to overdiagnosis and overtreatment.
The story mentions costs — up to $6,000 for a brain scan — and that diagnostic tests would not be covered by insurance because they are still experimental and under investigation.
There are no benefits to patients with the change in diagnostic criteria for Alzheimer’s. The story makes clear that the new guidelines are for the benefit of researchers, wanting to target earlier stages of the disease, and are not yet validated for clinical care settings.
The new diagnostic guidelines mean that more people will be considered to have Alzheimer’s, and clinical trials for experimental drugs will be seeking to recruit such people. One possible harm is that people might enter a clinical trial, learn that they have early brain changes, and think they have Alzheimer’s when no clinician would diagnose them that way. That could lead to significant anxiety.
The story informs readers that the tests: “measure certain forms of two proteins — amyloid and tau — that form plaques and tangles in the brain — and signs of nerve injury, degeneration and brain shrinkage.” However, there’s no discussion of the research behind these tests, how accurate these measures are or how well they predict people’s risk of developing full-blown Alzheimer’s disease. We’d like to have seen more commentary from people in the field who could talk about the current limitations.
The story does not engage in disease-mongering. We also liked that the story implied that people with other types of dementia or brain diseases are often misdiagnosed as having Alzheimer’s disease, which complicates research.
The story cites two expert sources, one who chaired the panel and another who works for the government agency involved in creating the new guidelines. The panel chair has received fees from Eli Lilly, a drug company that is trying to develop drug treatments for Alzheimer’s. We think an outside voice is key here — someone who wasn’t on the panel and who does not have a relationship with a pharmaceutical or biotech company involved in Alzheimer’s drug development.
The story mentions that current clinical diagnostics include assessment of “memory loss and other symptoms of dementia.”
The story says patients might try to get the tests (and pay out-of-pocket) or they might enroll in a clinical trial.
The story makes clear that these are new (and still experimental) diagnostic criteria for Alzheimer’s disease.
The story does not appear to be based on a news release.