Question: What do you mean there’s no Alzheimer’s cure? I just read about a new cure in the newspaper!
Answer: One of the most frustrating things I have to deal with as a memory doctor and an Alzheimer’s disease researcher is the misinformation and sometimes inaccurate, sensationalized reporting that exists in the popular media.
Almost every week, a patient or their family will bring me newspaper clippings or refer to internet articles that herald a “new cure” for dementia. For example, this past week, the headlines in a major Toronto newspaper exclaimed “High hopes new drug could be a game changer against long-incurable Alzheimer’s.” The article went on to describe the recent publication of a small study of a new antibody treatment, and was peppered with comments like “new hope,” “tantalizing results,” “fairly unprecedented,” “wildly enthusiastic” and “best news we’ve had in 25 years.”
Admittedly, while a careful read of this article includes important caveats that refer to the very preliminary nature of the findings, the small size of the study, and the fact it will still require “several years” for a more definitive study to prove whether this treatment will be beneficial, my patients — and their often desperate families — tend to miss these comments and focus on the word “cure.”
And it’s not only the popular press that is guilty of inappropriately raising expectations. The same week the article above was published, a press release from the prestigious Institut Pasteur in France used the following title: “Alzheimer’s: Nicotinic receptors as a new therapeutic target” to describe results from a study in mice suggesting that if a certain receptor is blocked, it “prevents the memory loss associated with Alzheimer’s.” What this article fails to note is that nicotinic receptor therapy has, in fact, been a target of unsuccessful drug trials in Alzheimer’s disease patients for over 25 years.
So, who is at fault? The answer is: probably everyone.
Researchers are at fault for failing to make medical reporters understand the preliminary nature of their results, the need for replication and/or the timelines necessary to bring a new drug to market. For example, in the antibody study mentioned above, it is highly likely that this therapy was already being developed in test-tube and animal studies 5-10 years ago, the small study that was being reported on, started three or four years ago, the definitive study that would be necessary to receive an approval (if successful) from federal drug regulatory agencies will take 3-5 years, followed by another several years after that to produce and market the drug.
In other words, for those patients and families struggling with Alzheimer’s disease today, this “cure” will not arrive in time to help them battle this illness. Medical reporters and their editors must shoulder the blame for sensationalizing the news they report on, over-emphasizing positive results, and using wholly inappropriate headlines to sell news. In the past, I have definitely been misquoted by the press, and my comments made to put the findings of studies into the proper perspective, have been ignored. But finally, patients and families carry some of the blame as well, for not taking the time to read the articles carefully.
The solutions to this problem are straight-forward. Scientists need better training in order to deal with the media, and this is already occurring in many research institutes around the world. Organizations should ensure accurate and responsible communications when pitching to the media and in PR materials. Medical reporters and editors should tone down the rhetoric and ask themselves, “If I was a patient with Alzheimer’s disease, how would I interpret this article?” They must have a better appreciation of the consequences of inappropriately raising expectations. Patients and families must learn to choose their source of medical information wisely. For example, The Alzheimer Society of Canada website is a fantastic source of reliable information, and for those with a science or medical background, Alzforum provides the latest, up-to-date reporting on research related to Alzheimer’s disease and other dementias.
Finally, I encourage my patients and families to bring in the articles they read, so we can review them together, and so I can help them interpret how the research may or may not be applicable to them.