This is a story that celebrates the "eureka moment," so much so that it includes three eureka moments. The problem with eureka moments and with stories like this is that they don’t reflect the true nature of scientific discovery. Yes, scientists get excited about breakthroughs, as they should, but those breakthroughs are often quite a distance away from actual application in a clinical setting. This story spends too much time drum rolling for a presentation at meeting in Hawaii that is weeks away and not enough time explaining why this particular pathway for Alzheimer’s detection is worth pursuing over the many other lines of inquiry that are alluded to in the story.
People who have family members with Alzheimer’s or who are suffering from early signs of dementia want desperately to feel that there is hope for them to change course. Right now, there is no such hope. It’s important for journalists to explain, as this reporter does, the history of detection and treatment of brain diseases, but that solid explanatory and even investigative reporting should not be overshadowed by the thrill of the eureka moment. Malcolm Gladwell did a much better job in his recent piece about cancer drugs. He used the Eureka moments to show how even the most celebrated scientific victories can be swept away by the rigors of scientific scrutiny. Proving that detection regimens or therapies work is tricky business, and we have to drive this home for readers.
There is one glancing reference to cost. "The type of scans used in this study, PET scans, are expensive and patients have to go to a scanning center, get injected with a radioactive dye, wait for the dye to reach their brain and then have a scan." How expensive? (The average cost of a PET scan is $3-6,000.) And, if this scan is truly the revolution that this story is making people believe it is, every person in America will want to have this scan done when they turn 50, maybe younger. What would that do to health care costs?
This story is ALL about the potential benefits. It says, "Brain scans that showed plaque could help with some fundamental questions — who has or is getting Alzheimer’s, whether the disease ever stops or slows down on its own and even whether plaque is the main culprit causing brain cell death." But it makes no attempt to quantify.
No. There is nothing in this story about what it would mean, for example, if everyone over a certain age started having their brains injected with radioactive dye on a regular basis. Everyone has a lifetime radioactive load limit, for one. What else might the dye do to people who have other chronic conditions or are taking medications?
The second sentence gives savvy readers the proper context, "The findings, which will be presented at an international meeting of the Alzheimer’s Association in Honolulu on July 11, must still be confirmed and approved by the Food and Drug Administration." But most readers won’t realize what a small step this actually is on the way to a true clinical application. Instead, the rest of the story might as well be fireworks going off. We have to wait until the very end of the story before we see any actual numbers. What are those numbers? The results of SIX patients, and those results are poorly explained. Here’s what we were able to gather. Of the six, one person was incorrectly diagnosed with Alzheimer’s. One was misdiagnosed with Parkinson’s. One had been properly diagnosed with memory loss. The remaining three had been correctly diagnosed. So, in effect, two out of six people may have benefited from this scan. There is no further context, however, to help us understand whether this is an improvement over previous studies, over competing scanning methods in other trials or over the range of physical and mental exercises that physicians use today to decide whether a person has Alzheimer’s. Might a doctor have examined these patients without a scan and correctly diagnosed all six? It’s possible. We were told earlier that 20% of patients are misdiagnosed. This study seems to show that number may be higher, but can we really say anything based on six patients? The eureka moment that is trumpeted in the lead — the email results that are sent to the lead scientist — turns out to be a set of results based on 35 patients. We are told nothing about the study design other than that it was controversial and that it involved hospice patients, some of whom were grateful to be included. After all that buildup, these are the last two sentences, "The Avid study was complete, and the full data will be presented at the meeting next month. Other companies, still doing their studies, did not yet have data to examine."
Some of the best parts of the story have to do with the confusion and lack of hard data about Alzheimer’s. This quote is typical: "Even at the best medical centers, doctors often are wrong. Twenty percent of people with dementia — a loss of memory and intellectual functions — who received a diagnosis of Alzheimer’s, did not have it." More stories should try to explain how hard it is to diagnose some of these disorders.
There are outside sources, but they aren’t used to good effect. The comment from "Dr. Michael Weiner of the University of California, San Francisco, who is not part of the company’s study and directs a federal project to study ways of diagnosing Alzheimer’s" is couched in such a way that it makes us think he could be commenting on any breakthrough that would lead to sharper detection of Alzheimer’s, not necessarily this study. Did he actually review the study results? Has he seen the results of similar studies? Does this work perhaps advance his work in some way? None of that is clear. Dr. Mathis is really only used to create another eureka moment. A good question for both Weiner and Mathis would have been, "What is it exactly about this scan that makes you think it rises above all the other detection methods being studied? And how many years away from a clinical application are we in the best and worst case scenarios? Ten to 20 years? 20 to 30 years? Not in our lifetime?" Nonetheless, we’ll give the story the benefit of the doubt on at least approaching independent sources.
As mentioned above, there should have been some attempt here to explain why this scan would be better than a doctor talking with her patient. Nonetheless it does mention the existing diagnostic approaches along with the difficulties in making the diagnosis, so we’ll give it the benefit of the doubt on this criterion.
The whole story is about how there is nothing available right now to accurately detect Alzheimer’s and how this procedure may move the ball forward. Although, as the story rightly points out, the new scan won’t necessarily answer all the questions about Alzheimer’s. It should make it clear up high how long it would take for this scan to go through the FDA process.
The story makes it clear that "There is no treatment yet to stop or slow the progress of Alzheimer’s. But every major drug company has new experimental drugs it hopes will work, particularly if they are started early." And it goes on to say that, "Other tests are being studied — ones that look for amyloid in cerebrospinal fluid that bathes the brain; MRI scans that look for shrinkage of the brain in areas needed for memory and reasoning; PET scans that look for uptake of glucose, a cellular fuel, to show areas where the brain was active and where it was not. The tests, though, were not necessarily specific for Alzheimer’s and none had been studied to see if they accurately predicted plaque on autopsy."
This is not a news release story. This is a story based largely on early access to the scientist as a buildup to the meeting where the results will be discussed, which is a similar but different animal.
Systematic, Criteria-Driven
Monday at #ADA2021, an infectious disease epidemiologist, a journalist, and a researcher shared perspectives on communication of risk in the era of COVID-19: http://ow.ly/ROfR30rMeE7 @AstleyCM @garyschwitzer @berthahidalgo @ADA_DiabetesPro
Shoutouts to @susan_bewley @drkevinknopf @MichaelBaum11 in this call for more than fawning coverage from press releases for these kinds of stories.
Also, linked history inside goes back 5 years just on Grail apparently trying to become Holy Grail. https://twitter.com/garyschwitzer/status/1408849696416841731
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