When yesterday’s cancer “discovery” is reversed by today’s better evidence — a cautionary tale for PR professionals and journalists

Kevin Lomangino is the managing editor of HealthNewsReview.org. He tweets as @Klomangino.

Wrong way go back signIn February we pushed back against a misleading news release from Yale University that ran with the headline, “Yale researchers discover underlying cause of myeloma.”

The release claimed that the researchers identified “what causes a third of all myelomas,” describing a faulty immune system response to compounds known as lysolipids as the culprit.

But that characterization was wrong.

First off, the research only demonstrated an association between lysolipids and this cancer — they didn’t prove that one caused the other.

And far from applying to a third of myeloma patients, the findings applied only to a tiny group of patients with a rare form of myeloma known as MGUS [monoclonal gammopathy of undetermined significance] associated with Gaucher’s disease.

“It’s not the cause of myeloma in the average patient,” Michael Thompson, MD, PhD, a cancer researcher at the Aurora Research Institute and Aurora Health Care, pointed out to us. Yet the release’s careless language might have misled many patients into thinking just that, he said.

The release claimed that the findings “could fundamentally change the way this cancer and others are treated.”

Thompson contacted me again yesterday to point out that a much larger follow-up study had just been presented at the American Society of Hematology meeting. He said that these new results — from 96 patients, as opposed to the previous study’s 3 — suggest that there is no role for lysolipids in most cases of myeloma.

“Our data disprove a role of lysolipids in the origin of sporadic MGUS/MM,” the authors said.

Moreover, they added that any suggestion that this phenomenon is relevant to MGUS associated with Gaucher disease should be “met with caution.” They delivered a somewhat blistering assessment of the previous paper, cataloging five separate steps that would be necessary to prove that the association observed between lysolipids and MGUS/Gaucher disease was in fact a cause-and-effect relationship.

“Not a single one of these prerequisites has been met” in that study, they said.

The takeaway here is not that the first study was useless and shouldn’t have been published, said Thompson, who called the findings “interesting and worthy of further investigation.”

It’s that the results from such a preliminary study “weren’t worthy of the press release that oversold findings.”

Although Yale did tone down the headline on its release in response to Thompson’s criticism, the revised headline still trumpets a link “to one third of myelomas” which is an overstatement.

Thompson called on Yale to issue another press release clarifying the first one and educating their marketing team with this example.

“Basic research is great. It drives discovery and new drugs for patients,” Thompson said. “However, there is hard work between a hypothesis and a cure. Yale should know not to take shortcuts.”

I’d add that this episode highlights, once again, the ephemeral nature of many scientific results that are initially characterized as “breakthroughs” and which later turn out to be misfires.

PR professionals, journalists, and readers would all do well to examine the foundations of such claims carefully.

All too often, as this episode illustrates, the claims are built on quicksand.

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Comments (2)

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Katy Butler

December 5, 2016 at 1:46 pm

Thank you for your ongoing work. I hope Health News Review will explore Matt Richtel’s NYT follow-up story today on the side effects of immunotherapy. It is a welcome coda to earlier parts of his series, which focused on immunotherapy’s miraculous results in melting tumors. The series followed a close friend of Richtel’s through five years of cancer treatments, including immunotherapy, a dramatic one-month remission, and the disease’s return. Treatment’s side effects severely damaged the man’s liver, spine and quality of life. He died in ICU about ten days after the the series ran. I am curious about the effect of a deep, often unrealistic cultural narrative, “A cure is around the corner!” While sometimes appropriate when discussing advances in combating viruses and bacteria, this narrative seems to afflict and distort much reporting about multifactoral diseases that are not amenable to single-bullet cures — cancer, dementia, and the inevitable processes of aging.

Susan Molchan

December 5, 2016 at 9:30 pm

Great piece Kevin . . .and speaking of quicksand and cancer drugs. The latest on their lack of efficacy (tho approved based on surrogates) from Diana Zuckerman in JAMA: http://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2589085.