This brief story about an experimental CAR-T immunotherapy for a type of non-Hodgkin lymphoma creates a fog of tantalizing promise, juiced up by the emotional story of a father’s desperate wish to see his daughter grow up, but it falls short on several counts.
It highlights claims of saving lives, even though the trials to date are small, of limited duration, and do not compare this treatment to any others. Though it reports some treatment-related deaths, it glosses over severe side effects that were common in the trial. The story neglects to mention that the treatment is expected to cost more than a quarter-million dollars. It does not mention company funding. There are no independent experts quoted.
As a result, the story does more to support the company’s marketing goals than to provide useful information to viewers and readers.
Just for journalists: See our 6 tips for writing accurately about cancer immunotherapy drugs and How to report accurately about the harms, side effects and risks of immunotherapy
While any signs of progress are welcome when it comes to developing new therapies for patients who have seen cancer come back after trying standard treatments, it is important to clearly state the distinction between better-than-expected short-term results and “saving lives.” This story starts with the claim that the experimental treatment is the reason the featured patient is alive, but the emotion-laden lead obscures the tentative and nuanced nature of the trial results.
Cost was not discussed and this was a major oversight. Industry analysts and trade stories predict that axicabtagene ciloleucel will cost $250,000 to $300,000 and that the treatment could bring in about $8 billion a year within five years.
After featuring a patient who is “is alive today because of an experimental form of immunotherapy called CAR-T,” the story reports that “about eight months after a single treatment, 39 percent of patients had no evidence of cancer.”
While the results look remarkably better than expected for patients whose cancer has returned after several rounds of standard treatments, there has not been a head-to-head comparison (a point the story does not make clear), so claims about the benefit of this treatment compared to alternatives must be made cautiously. Notably, the story never mentions how many of the patients in this trial died despite receiving the new treatment. About 20% were not alive at the six-month mark.
We will give this story a barely satisfactory rating because it does report that there were treatment-related deaths and side effects including “flu-like symptoms and confusion.” But no other numbers or side effects are mentioned–though there were many more–and the story doesn’t elaborate that CAR-T therapy can be fraught with unpredictable problems. Interviewing a patient who experienced these problems would have made the story more reflective of the true experience of receiving CAR-T.
This is another weak point in the story, which does not report that the trial did not compare the treatment to standard treatments. It does not point out that there was no randomization of patients or blinding of researchers. It also does not report that the results were presented at a conference and have not been reviewed by experts independent of the company that sponsored the trial. All of these are red flags that should have been included.
The story reports that the trial included patients with “advanced lymphoma who had failed previous therapy.”
However, the lack of detail could lead many readers to believe it applies to more lymphoma patients than just the B-cell non-Hodgkin lymphoma patients who had already undergone multiple prior treatment attempts.
The story is not satisfactory on all counts. It does not report that the treatment maker, Kite Pharma, paid for the trial, with additional funding from the Leukemia & Lymphoma Society (which lists Kite Pharma as a Patron level sponsor). The story also does not report that the researcher quoted in the story has disclosed in previous publications about this trial that he has served as an advisory board attendee for Kite Pharma. There are no independent sources noted in this story.
The story does not report anything about existing treatment alternatives, such as various types of chemotherapy and stem cell transplants, including typical outcomes for lymphoma patients.
The story reports that this treatment is being reviewed by the FDA. It says that a decision “could” come by the end of the year, which provides wiggle room.
The story doesn’t report that Novartis is at a similar stage of testing a similar treatment, so the subject of this story is not unique.
There are interview quotes from a patient and a researcher that do not appear in the company news release.
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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