Michael Joyce is a multimedia producer at HealthNewsReview.org and tweets as @mlmjoyce
Media coverage of new cancer treatments usually goes through these stages: honeymoon, scrutiny, and fatigue.
The honeymoon is when you will read of miracles, breakthroughs, and cures. The scrutiny phase is when the numbers and statistical significance of the research grow … the benefits, harms, and limitations become clear … and the journalists have much more to write about. The fatigue phase is almost inevitable (except in those rare cases in which a therapy actually becomes widely implemented). It’s either a testimony to how many treatments don’t live up to their promise, or how quickly our collective attention spans fade.
Immunotherapy for cancer — which basically involves manipulating our immune system to attack cancer cells — is ever so slowly creeping toward the scrutiny phase. This slow crawl is something we reported on four months ago. With few exceptions, like this deep dive by the New York Times (the Cell Wars series ), we found many journalists completely overlooked the harms (some life-threatening) of this oft-vaunted treatment. Our deputy managing editor, Joy Victory, wrote something at that time worth revisiting:
“The narrative surrounding immunotherapy is that it’s much safer than traditional approaches like chemotherapy, and that there’s not much to lose by trying. Reality is turning out to be different.”
Now a new concern.
Two studies — one published last week out of UC-San Diego and another last year out of France — have reported that a type of immunotherapy using what are called “PD-1 inhibitors” can paradoxically accelerate cancer. In the UC-San Diego study 8 of 155 patients receiving therapy had their tumors grow by between 53 and 258 percent. Researchers found the “hyper-progression of the tumors” may have been associated with extra copies of MDM2 or MDM4 genes, or even mutations in a gene called EGFR. In the French study of 131 patients, 9 percent of patients experienced the paradoxical tumor growth. They found a possible association with patients over the age of 65.
Clearly, these are small studies. And measuring the growth of tumors is not as clear-cut as it sounds. Larger studies are needed to verify or refute these results.
But there is another story here. Only a handful of journalists covered last week’s study out of San Diego. Bob Tedeschi, who wrote this very solid piece about the paradoxical response to immunotherapy, only came across the study because he’s been following the topic doggedly. There was no press release we or Tedeschi could find. Why? Is it because these are considered negative results? Or negative news?
This isn’t about one particular study, which may or may not merit promotion by press officials given competing priorities and demands. It’s about an overall disparity in attention that couldn’t be more clear: during the honeymoon period there was no shortage of press releases, headlines, and advocates more than ready to endorse immunotherapy with those highly clickable 7 words (cure, breakthrough, miracle, etc.) … but now that the scrutiny phase has kicked in … the enthusiasm for explaining negative outcomes, caveats, and limitations seems to wane at exactly the time when we need more information presented with more care.
We’ve written about so-called negative results before. It’s an unfortunate moniker. Negative results can lead to positive strides (ask any parent). If indeed this paradoxical tumor growth is caused — or not — by immunotherapy, that opens an important path for new research. As does looking into the effects of gene mutations and age. It’s an important part of the story and deserves coverage. The researchers who wrote up and shared these findings deserve praise.
The cynic in me (which has experienced non-paradoxical growth as a journalist) says that if those with financial interests (or academic hubris) are reticent to publish or promote so-called negative results, then they are forgetting two important points: first, is that peer-tested data — whether they confirm or refute — are what drive science; second, what drives medical science is the best interest of the patient.
UPDATE (April 5, 4:00 PM CST): We wrote to the public affairs department at UC-San Diego asking why we couldn’t find a news release. Their reply: “Because this was an observation no press release was written.”