Joy Victory is deputy managing editor of HealthNewsReview.org. She tweets as @thejoyvictory
Earlier this year, the New York Times launched “Cell Wars,” an ongoing series of articles “exploring the novel uses of immunotherapy to combat cancer.”
As the first story in the series tells readers, they did so because “remarkable stories of tumors melting away and terminal illnesses going into remissions that last years — backed by solid data — have led to an explosion of interest and billions of dollars of investments in the rapidly growing field of immunotherapy.”
And they are right. Just today, several major news organizations, including the Philadelphia Inquirer, Wall Street Journal and the Times, are reporting on an advance that could lead to new treatments for common gastrointestinal cancers. A miraculous recovery from advanced cancer is described–the type of finding that seemingly will become more frequent as immunotherapy becomes more established and widespread.
Cell Wars, which includes some of the most in-depth news reporting ever done on immunotherapy, is a timely counterpoint to such stories as these, which focus exclusively on the benefits of immunotherapy but do not discuss potential harms.
Earlier this week–just before these latest “breakthrough”-touting headlines popped up–the Times published a new installment in the Cell Wars series devoted entirely to exploring the unknowns and harms of immunotherapy.
“In cancer clinics around the world, and in drug trials, myriad other side effects are showing up. Studies are finding that severe reactions occur nearly 20 percent of the time with certain drugs, and in more than half of patients when some drugs are used in combination,” the story states.
We were pleased to see the Times writing about this, and we hope they and other news outlets will continue to dig deeper into the risks of immunotherapy.
Problems with clinical trial data
Clearly, there’s more to tell. First, about those “severe reactions” mentioned above in the quote: Those data points don’t tell the full story. In reality, not only was there a high adverse event rate in both studies, there were several confirmed treatment-related deaths, too. Yet, because these type of deaths are not often included in study abstracts or data tables, they may get overlooked by journalists rushing to gather facts on deadline. (To find treatment-related deaths you must read the full study.)
Also, there may be a major patient safety issue at hand, as revealed by this 2014 systematic review of the evidence. The authors concluded that reporting on adverse events in immunotherapy clinical trials is not standardized to the point of being “suboptimal,” which in turn may be leading to “skewed representation” that the drugs are safer than they really are.
In other words, people taking immunotherapies for advanced cancer are doing so without ever being fully informed of the risks–which includes death–because there was no way for even their doctors to know the full picture, given the inconsistent adverse event reporting in clinical trials.
Patients facing a terminal illness may well be prepared to risk death for a shot at the benefits these treatments offer to some. However, 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.
‘A cure must be around the corner’
Author Katy Butler, who has written and thought about this issue a lot, also urges journalists to think about the narrative framing they’re using when writing about complex diseases like cancer.
Many stories about immunotherapy, including today’s batch about an advance in treating colon cancer, follow all-too-familiar tropes where cancer is presented as a battle that must be fought at all costs, said Butler, who wrote “Knocking on Heaven’s Door: The Path to a Better Way of Death.”
“The focus on the ‘miraculous results’ are reflective of a deep, often unrealistic cultural narrative around experimental research that a cure must be around the corner,” she said.
“For me, the fundamental question is this: How is the [news framing] affecting how people, how patients understand the universe of risk and benefits they’re facing? How does the framing skew people’s decision making?” she said. “I’ve interviewed wonderfully well-meaning oncologists who say they have patients come in with these very exaggerated views of what’s possible. And even the best oncologists are put in the position of making it very difficult for patients to hear the truth.”
One way to avoid raising false hope is to be extra cautious when deploying words like “breakthrough,” “miracle,” and “cure”–among others, as we explain in 7 Words (and more) You Shouldn’t Use in Medical News.
The human toll of scientific advances
With cancer, Butler explained, it’s important to remember that just because an experimental drug shrinks tumors (or “melts” them as the Times put it), there is no guarantee that the patient will live longer–and especially not better. Researchers are understandably excited by tumor shrinkage, but patients don’t necessarily feel better or live longer as a result.
Cancer patients regularly dying in the ICU, for example, can indicate a problem with the medical care being offered, she said, because dying from cancer is not a rapid, acute process, but rather one that can be managed with palliative care in a hospice or home–a less-chaotic scenario most patients prefer.
One way journalists can do better is by following up on patient stories, to see how things turned out long-term for them, years later, she said, and examine if the risks they took were worth the outcomes.
“I would like to see major newspapers make a commitment that when they write stories like this, two years or so from now they’ll check back with all the protagonists and see how they’re doing,” she said. “To not just look at the dramatic melting of tumors, but look at the question of did the melting of tumors, in the end, give this person a higher quality of life, a higher quality of death or more good time on Earth?”