Alzheimer’s drug puts journalists’ judgment to test

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It was the kind of news that had to be handled delicately, with a deft touch and a sense of perspective. A new drug appeared to halt the progression of Alzheimer’s disease for up to three years – a result never achieved before – but only in a handful of patients, according to results of a small study presented at a major international conference.

How did major media do in covering this development?

Marilynn Marchione of The Associated Press was careful not to overplay the findings and fuel speculation that definitive progress against Alzheimer’s had finally been achieved:

“For the first time, researchers are reporting that a treatment might help stabilize Alzheimer’s disease for as much as three years, although the evidence is weak and in only four patients.

“The drug is Gammagard, made by Baxter International Inc. Doctors say that four patients who have been receiving the highest dose for three years showed no decline on memory and cognition tests. A dozen others on different doses or shorter treatment times didn’t fare as well.

“The study was far too small to prove the treatment works, but a more rigorous one involving 400 patients will give results within a year.”

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Note what Marchione didn’t do. She didn’t call this a breakthrough. She didn’t suggest that results from this small study were reliable, or that they should give patients or medical practitioners hope. Instead, she was careful to strike a cautionary note from the start – the responsible way to approach this news.

At USA Today, Janice Lloyd took a very different approach:

“Although it’s still in a testing phase, the first long-term treatment shown to halt the progression of Alzheimer’s disease is being hailed Tuesday by experts at the Alzheimer’s Association International Conference 2012 in Vancouver.”

I’m sure this is true – that many experts at the conference indeed “hailed” the study’s findings. But practitioners in this field are primed to enthusiastically welcome any positive development since results of all other studies to date have been bleak. Putting this in the story’s lede gives a wrong first-off impression that this is a seminal event in the fight against Alzheimer’s. (It may be, it may not be; we don’t know yet is the truth of the matter.)

To nitpick further: I think it’s wrong for Lloyd to refer to this as “the first long-term treatment shown to halt the progression of Alzheimer’s” in her lede. That assumes Gammagard does, in fact, halt the progression of this condition, which has not yet been definitively established.

Lloyd’s approach seems supported by a quote from the study’s leader, Norman Relkin, Ph.D., M.D., of Weill Cornell Medical College, a bit further down in the story. “I think the importance of our findings is to show there’s still a lot of excitement about immune therapy,” he said. In general, I think it’s better to get this kind of material from an outside source, not someone with such an important stake in the study’s outcome.

Choosing which quote to use from whom and where is one of the many important judgment calls a reporter makes when putting together a piece of this sort.

Andrew Pollack of The New York Times gives Relkin pride of place in his story, letting him call results of his study “remarkable” in his third paragraph. My guess is Pollack, too, wanted to convey a general sense of excitement over any potential progress against Alzheimer’s. The difference is that he quickly follows up with an expert who observes that it’s “premature” to conclude that that Gammagard is responsible for the results in Relkin’s study:

“‘There will be some patients who at three years don’t have a decline’ even without an experimental therapy, said Dr. Rachelle S. Doody, director of the Alzheimer’s Disease and Memory Disorders Center at Baylor College of Medicine. She said some patients go six or eight years without worsening.”

The next two paragraphs in Pollack’s story underscore the double “this is news worth noting” but “we don’t know what to make of it” thrust of his story:

“Dr. Samuel E. Gandy, director of the Center for Cognitive Health at the Mount Sinai School of Medicine, said the results left him ‘optimistic to a minor degree, not really gushing.’

“Whether the results are a fluke or not could be known by the first half of next when, when the results of a Phase 3 trial are expected.”

Plenty of other publications covered the story. I liked Reuters’ version, which explained why scientists welcomed the news while making it very clear that significant questions remain unanswered. I’m glad that Julie Steenhuysen has Relkin noting that many drugs fail despite promising Phase 2 results – a point that can’t be made often enough.

I especially liked The Wall Street Journal‘ssmart observation that patients will begin to “clamor” for Gammagard treatments based on these findings without waiting for final Phase 3 results to come in. That’s an issue with immediate practical import and one that seems to me worth following.

Judith GrahamJudith Graham (@judith_graham), AHCJ’s topic leader on aging, is writing blog posts, editing tip sheets and articles and gathering resources to help our members cover the many issues around our aging society.

If you have questions or suggestions for future resources on the topic, please send them to judith@healthjournalism.org.

It’s also a reason why our work reporting findings such as this is so important, outside of the inherent interest of watching science advance.

As reporters, we can fuel desperate hopes by people with devastating illnesses or help moderate them. Many people might ignore what we write and grab for whatever hope glimmers on the horizon, but many others listen to what we say in our articles, broadcasts or radio reports. So, especially on a topic like Alzheimer’s, so fraught with emotion and hopelessness, the responsibility for getting it right – not too dewy-eyed, not too jaundiced, carefully balanced and hewing closely to the facts – is a heavy one.