Gina Kolata’s article in today’s NY Times discusses a proposed recommendation by medical experts to use brain scans to diagnose Alzheimer’s much sooner than is now possible. In practical terms, this “advance” would likely mean
“a two- to threefold increase in the number of people with Alzheimer’s disease. Many more people would be told they probably are on their way to getting it. The Alzheimer’s Association says 5.3 million Americans now have the disease.”
So, as many as 16 million Americans would have a diagnosis of this scariest of diseases, with untold millions more set off on a course of life-long worrying about an onrushing catastrophe that they can do nothing about. And at a staggering course for the new tests, to boot.
This is terrible public health policy. Aricept notwithstanding, at present there are no good drugs for battling this disease. While there would be research benefits to knowing who the at-risk population is, the article barely mentions the important, countervailing problem of unintended consequences. Dr. Doraiswamy at Duke put it well:
“We ought to be cautious that we don’t stimulate all this testing before we can give people something to manage their disease. There is no point in giving them just a label.”
Yet the guidelines for this testing are expected to be approved in the Fall.
This reminds me greatly of the early days of HIV testing — that decade-plus period when testing was available, but little besides AZT (the equivalent, very roughly speaking, of Aricept) was available to treat it. Elaborate state laws were crafted to manage the problem of delivering the bad news to those infected, including, in some states, a requirement that the grim tidings be accompanied by information about available counseling. (Not that anyone could hear what was being said right then, with all that blood rushing to their head and making a din that would drown out everything.) Many, quite understandably, avoided testing altogether. In the context of an infectious disease like HIV, of course, ignorance of one’s status presented a huge obstacle to reducing the incidence of transmission. So there was a good moral and public health reason to get tested anyway. But the fear of mortal knowledge was too great for some.
In this case, I can see only downside. Alzheimer’s isn’t infectious, so we don’t need to diagnose to protect third parties. There’s no good treatment right now, so the knowledge of early stage disease or, even worse, the likelihood of a future with Alzheimer’s will, for many, have only negative psychological (and resulting physical) consequences. Yes, there are some who think they’d like the information to be able to plan. But do those in, say, their fifties, really need or want to know what’s likely to happen to them in ten or fifteen years?
Do these guidelines need to be approved this quickly? Have these issues been sufficiently considered? And what counseling will be part of the package that accompanies these scary, high-tech tests?