‘Historic breakthrough Alzheimer patients around the globe have been awaiting’

Over the years, I have loved it when health care journalists send us tips. One recently wrote, “Have you all seen this BS? Some uneducated/informed friends are posting this on Facebook.”

The BS she was referring to was our headline above, which appeared in the first sentence of a news story by WV News: The Independent Voice of West Virginia. The journalist-tipster was correct: This demanded some independent analysis.  And that’s where we come in.

A ‘first’…’historic breakthrough’…’cure’

The story’s headlined trumpeted the West Virginia University Rockefeller Neuroscience team as the “first to use ultrasound to treat Alzheimer’s.”

But the “treatment” is still in early phase II studies, involving just one patient at the time the story was published. I encourage journalists to refrain from calling something a treatment until it’s been proven as such.

Way down–800 words deep into the story–we finally are told, “The potential benefits of the first and subsequent treatments will take several years to fully evaluate.”

Then I suggest it is way too early to talk about “a historic breakthrough Alzheimer patients around the globe have been awaiting.”

Another newspaper went even further, asking, “Could WVU study lead to Alzheimer’s cure?” Again, buried deep was the caveat that matters: “This is a trial, it may not work,” said (the lead researcher).” Even deeper in the story we finally learn a vital piece of context: “…(the clinical trial) is expected to start at the end of October.”  So this story, published in September, used the words “cure…groundbreaking…potential game-changer” to describe an early phase of a trial that hadn’t even begun yet.

This is how cheerleading local journalism can mislead people.

Viral videos of the media event

This Clarksburg, West Virginia TV station video clip (below) gives you a glimpse of what a media event it was when the first patient was treated. (Note: We found this clip on an Albany, NY TV station’s website – evidence of how local news can become viral. We also saw the video on a Charleston, WV station’s website, on a Clarksburg, WV station’s website, and on an Amarillo, TX station’s YouTube page,)

West Virginia University issued a PR news release on the first patient being treated there. One could debate the pros and cons of a news release at this time. But the news release did not use the terms “cure…historic…breakthrough.” Instead, it used restraint, stating that this “represents a potential important next step in the treatment of Alzheimer’s.”

Reactions from two of our editorial contributors – an MD & a journalist

Susan Molchan, MD, a geriatric psychiatrist, wrote to me:

A phase 2 trial with one person? This is the latest example of over-hyped technology being pitched to desperate people. There are good reasons, too, why the brain is protected by a blood-brain barrier. Interfering with it is bound to have side effects.

Veteran health care journalist Andrew Holtz wrote:

To call this single case a historic breakthrough in Alzheimer’s disease treatment is not only ridiculous, it is dishonest. The trial that this case is part of will not even measure any aspects of Alzheimer’s disease. The stated outcomes of the trial are to look for signs of harm from the procedure and then to measure the extent and duration of disruption of the blood-brain barrier. This trial won’t even tell researchers whether the device reduces plaque levels in the brains of patients; that’s not one of the outcome measurements.

Even the premise of the device is debatable. It could be that the device performs exactly as the developers hope, that it clears amyloid plaques from areas of the brain, but that the clearance of plaque turns out to have no effect on a patient’s dementia.

Decades of Alzheimer’s hype

Research that explores new and innovative approaches to Alzheimer’s disease is important. But over and over journalism at many levels — local, national, print, broadcast, online — has delivered more premature hype than evidence when touting such new approaches.

In my own career, I can trace Alzheimer’s research news hype going back at least as far as 1984. Jay Winsten, in a landmark piece in Health Affairs, “Science and the Media: The Boundaries of Truth,” wrote how Alzheimer’s “became a ‘hot’ story in the fall of 1984.” Sample headlines by leading news organizations:

• “Alzheimer’s Treatment Found Successful”
• “Scientists Find First Breakthrough Against Alzheimer’s”
• “Researchers Believe Treatment For Alzheimer’s Disease is Near”
• “Researchers describe possible Alzheimer’s cure”

All of this was based on results of a preliminary feasibility trial of an experimental approach for Alzheimer’s, tested in just four people. I knew people at Dartmouth and at CNN who were party to this fiasco. Thirty-five years later, its lessons are as good as new (or as bad as old).

I’ve saved a 1999 TIME magazine piece — “Hope Meets Hype: They talk about a breakthrough in Alzheimer’s research, but what does that really mean?” — by veteran science journalist Christine Gorman. Twenty years later, that piece should still educate today’s journalists about what should go through their minds before proclaiming an Alzheimer’s breakthrough. A search of news stories and PR news releases from our archives delivers a staggering list of how often premature hype has polluted Alzheimer’s news.

Some observers have described Alzheimer’s hype stories as cruel.

We’ve posted many stories this year about patient harms from misleading media messages of all kinds. But this is avoidable harm and avoidable ignorance if writers, editors, reporters and public relations professionals stop and think about the potential impact of what they’re publishing.