The story focuses on on the use of an experimental immunotherapy technique called CAR T-cell therapy to treat children who have been diagnosed with acute lymphoblastic leukemia (ALL) and who are no longer responding to conventional cancer treatments.
The story does a good job of stressing that, while CAR T-cell therapy may be promising, it is far too early to determine how effective the treatment will be at keeping cancer from recurring. Important harms are made clear. Readers get the full sense of how experimental this treatment is, and how it’s a last-resort option. We do wish the story had provided more specifics on the clinical trial findings, though.
The NIH estimates that there will be approximately 6,590 new cases of ALL diagnosed in the U.S. this year. The majority of those diagnosed with ALL (57%) are under the age of 20, with a median age of 15. Sixty-eight percent of those diagnosed survive at least five years.
The impact of a cancer diagnosis in a child is difficult, or impossible, to quantify. In addition to the hardships the child has to endure, the diagnosis and treatment exacts an emotional toll on the family and loved ones as well.
New information on treatments that can extend the lives, and quality of life, for these patients is clearly important — and affects entire families. It can be difficult to drill down into the numbers for drugs that are still undergoing clinical trials, but it is important for stories on subjects like this one to provide as much information as possible for patients, their families, and their healthcare providers. This story does many things well, but it may have done readers a greater service by focusing less on the experience of individual patients and more on the available research.
The CAR T-cell therapy is currently available only in clinical trials, where costs presumably aren’t an issue (a point the story might have made for readers who aren’t familiar with clinical trials).
That leaves the question of how much this therapy may cost if it becomes more widely available. And this is where the story offers some valuable insight: “It is also far from clear that such a personalized approach — possibly costing hundreds of thousands of dollars — is economically viable on a large scale.” In other words, to quote the story again: “big questions surround the therapy.”
The story provides a broad overview of multiple trials, rather than spending a lot of time on any specific study. That can be dicey, given variability between trial results. However, the story still manages to offer some real numbers — and grounds the benefits with qualifiers. For example, in referring to multiple trials in both adults and children, the story says that some trials have reported “remission rates of up to 90 percent.” The story then notes that “rates in other trials are considerably lower, and many patients relapse.”
Elsewhere, the story quotes one researcher as saying “The treatment is great about getting people into remission but not at keeping everyone in remission.” The story then offers some information on one study by the same researcher, stating “39 of 42 patients went into complete remission. By a year, about half had relapsed.” That combination of real numbers, with a sobering qualifier, is important.
What we would have liked to have seen: Along with remission discussion, some extra assessment of what the research shows on overall survival rates, and how long people on the drug can be expected to live.
The story addresses potential harms. Early on, the it notes that “complications can be lethal,” and refers to a study in which several patients died due to brain swelling. Much lower down, the story refers to one patient’s “intense immune reaction that followed treatment,” involving a fever of 106 degrees Fahrenheit. Those aren’t all the risks, but it’s some of the major ones.
The story makes clear that immunotherapies in general, and CAR T-cell therapies in particular, are garnering a great deal of attention in the medical research community. However, while we understand that the story is trying to get its arms around a large and growing number of clinical trials related to the therapy, it doesn’t offer much information about those trials.
Readers learn that trials involve adults and children (which is an excellent point, and we’re glad the story makes it). And readers learn a little bit about the number of participants in one particular trial (as noted above, under Quantify Benefits). But readers don’t know how many relevant trials have been completed or how many are underway — much less any real detail about any given trial. The story is focused more on providing human faces to the fight against the disease. That can make for good storytelling, but it makes the story less valuable for those trying to learn more about the treatment itself, and what the limitations are of research like this where children’s lives are at stake.
This is a tricky one. There are multiple sources in the article who speak to the research itself, and most of them are clearly identified as being involved with the research in some way. There appears to be at least one expert source who is not affiliated with any of the clinical trials, but that is inferred, rather than explicitly stated. What makes this tricky is that the story discusses multiple trials, without clearly identifying most of them. That makes it difficult to provide a judgment call here. When it’s a toss-up, we try to err on the side of the story, so we’ll give this a Satisfactory.
The story makes a point of noting that, at present, CAR T-cell therapy is used only when all other courses of action — chemotherapy, bone marrow transplants, etc. — have failed.
It’s clear from the story that this therapy is experimental, and currently available only in trials.
The story is basically all about what makes this particular form of therapy novel.
This story definitely involved a great deal of reporting, and does not appear to be based on a 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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