Hope vs. false hope/harm in news stories about Alzheimer's & ALS

All you have to do is use our search engine on HealthNewsReview.org to search for “Alzheimer’s” and you’ll get countless returns of stories and claims such as:

• Spinal-Fluid Test Is Found to Predict Alzheimer’s

• Drug for Immune Disorders Helps Alzheimer’s

• Miracle drug for Alzheimer’s patients

• A cocktail to remember? Nutrient elixir shows promise against Alzheimer’s

I could go on and on listing a litany of claims about abilities to diagnose Alzheimer’s Disease earlier and better, surely leading the way to better treatments. Some stories already make sensational claims about treatments.

Now read Derek Lowe’s important blog post, “Lilly’s Gamma Secretase Inhibitor for Alzheimer’s: Worse Than Nothing.” Excerpts:

“Well, well, well. We finally have solid clinical data from a large trial of a gamma-secretase inhibitor for Alzheimer’s disease. And it doesn’t work.
…
And now we have the results.

Nothing. Worse than nothing – they saw real declines in cognitive function compared to the placebo group. It’s not getting as much play in the news this morning, but it also appears – insult to injury – that the drug was associated with a greater risk of skin cancer. Lilly has halted any development, and told all the study centers to stop dosing immediately. All the patients who received it will be monitored to see how they do over the next few months.

This is about as bad a result as could possibly be obtained, and I think it really has to torpedo the idea of gamma secretase as a drug target. Unless someone comes up with a very compelling and intricate argument to explain these results, I don’t see how anyone can risk going down this particular road again. What must they be thinking today over at Bristol-Myers Squibb, where they’ve been developing a direct competitor, BMS708163?

And what does this say about the amyloid hypothesis itself? Nothing good. This is the crucial period for the whole idea, with several different approaches finally yielding late-stage clinical data. And it’s starting to look as if the whole idea may have been just a terrible diversion.”

This is an example of why we react negatively to stories that mention “new pathways to a cure” after a study of just 3 people – as the NYT piece yesterday on Lou Gehrig’s Disease did.

This is why we react negatively to Alzheimer’s Disease stories that emphasize what scans can show when we don’t fully understand what the images and findings mean.

This is why we react negatively to Alzheimer’s stories about treatments that hype results from small, preliminary studies.

We think it’s wrong – bordering on malicious – for journalists to sensationalize research findings in an area where sick people are desperate for evidence and for solid information on benefits and harms. Hope has value; sick people have told me that THEY can decide where to invest their hope – they don’t need journalists doing it for them. False hope is a harm. And it’s a harm that is committed far too often in news coverage of diseases like ALS and Alzheimer’s disease.