Jill U. Adams is an associate editor at HealthNewsReview.org. She tweets as @juadams.
We have a list of words that we think health care journalists should avoid — it’s seven words long.
The story features a patient narrative to illustrate a new cancer treatment that’s been getting a lot of press. The treatment, CAR T-cell therapy, takes immune cells from patients, genetically arms them with better search-and-destroy weaponry, and puts them back into the patient to attack circulating cancer cells.
CAR T-cell therapy is still experimental, although last month an FDA advisory panel recommended approval — a first for a gene therapy product. A number of news outlets covered that news. (We reviewed the Washington Post’s take).
TIME gives the story an in-depth look, digging a little deeper to see how this new and different treatment option affects the lives of real people. The story is heart-wrenching — it’s a 7-year-old child with a common cancer that unfortunately did not respond to traditional chemotherapy. It’s also heart-warming — all signs suggest this kid’s cancer has gone into remission.
The story is overly sunny, beginning with the hyped-up headline. “It frames things for you,” says Andrae Vandross, MD, a UCLA oncologist and HeathNewsReview.org contributor. “It creates expectations, which are followed by a success story. But we are not sure what all of this means in the long term.”
In other words, is CAR T really a cure — as the story suggests over and over again? More on that in a minute.
The story continues with a string of words and phrases that HealthNewsReview.org publisher Gary Schwitzer, who originally came up with his seven-word list in the year 2000, might consider adding to his collection: a ‘one-hit wonder,’ ‘transformative,’ and ‘groundbreaking.’
Then it goes on to chronicle the timeline of CAR T-cell therapy, its advances and set-backs over the years. Readers are introduced to the first two patients to receive the treatment, who are also success stories.
The first mention of a side effect is with patient number one, Bill Ludwig, who ended up in intensive care with apparent kidney failure and still gets treatment for an altered immune system that leaves him more vulnerable to infection. A little more detail about “severe immune reactions triggered by the treatment” is provided near the very bottom of the story.
The story mentions scientific evidence, but only in the broadest strokes:
Remission is good, but how long are we talking about? How does it compare with the existing standard of care?
Deaths? That’s a pretty big side effect. Here we’re not even given a ballpark number.
There’s the barest mention of costs. The Washington Post reported it would likely cost $300-600K for a one-time infusion.
“There were some good details in the story,” Vandross says, mentioning that the experimental treatment is only tested on children who aren’t responding to conventional treatments. Also, the story uses the word ‘remission.’ But after that headline, he warns, “Readers may not distinguish between remission and cure.”
The key question, as yet unanswered by the clinical trials to date, says Vandross: “Does it extend life and improve quality of life? For CAR T-cell therapy, the followup has not been long enough to be clear.”
This is not the first cancer treatment to look strong out of the gate. (Nor is it TIME magazine’s first headline to proclaim a misleading “cure” for cancer.) Early immunotherapies, such as interleukin-2 treatment, were full of hope and promise. And like CAR T-cell therapy, had an appealing concept: Using patients’ own immune systems to fight their cancers. Interleukin-2 therapy is still used in certain situations, but the excitement has long since worn off.
Some journalists latch on to these early success stories that don’t always pan out as expected. We offer resources to help journalists and readers think more critically about these issues. For example:
It’s easy to get pumped up about new science that may help people. It’s harder, yet equally important, to balance that promise with the unknowns and potential downsides.
“The technological advance is what is exciting,” Vandross says. “But what’s the evidence that it helps people live longer?”