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‘Simply cruel’: Patient advocates condemn breast cancer immunotherapy hype

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Mary Chris Jaklevic is a reporter-editor at HealthNewsReview.org. She tweets as @mcjaklevic.

“Increases life expectancy,” announced Newsweek.

“Helped slow an aggressive type of breast cancer,” reported Reuters.

“Expected to change the standard of care,” crowed The New York Times.

Judging by news reports last weekend, women with metastatic triple-negative breast cancer had reason to cheer results of a clinical trial of an immunotherapy drug called atezolizumab, which is marketed as Tecentriq.

The trial was promoted by a news release that declared it a “first immunotherapy success” in triple-negative breast cancer patients, for whom there is a dearth of effective treatment options.

But contrary to the impression left by the news release and a lot of reporting, the results of this study were not so spectacular. The drug in fact did not extend life.

The median overall survival was 21.3 months for patients who took both the immunotherapy drug and chemotherapy, versus 17.6 months for those who took a placebo plus chemo. That difference was not statistically significant.

So where did the hype come from?

The immunotherapy drug did improve a surrogate marker called progression-free survival, which means tumors took longer to grow in women who got the drug. It also appeared to extend the lives of a subgroup of patients who have high levels of a protein called PD-L1, although there were too few of those women enrolled in the study to firmly conclude that there was a benefit.

Both of those outcomes come with red flags. As we’ve written, surrogate markers and subgroup results have limitations that patients need to know about. Unfortunately, a lot of the news coverage we encountered didn’t provide those caveats.

What’s the harm in optimistic news coverage?

Still, it’s possible this drug might help some people. So what’s the harm in a little positive spin?

We reached out to several breast cancer patient advocates, who pointed out what they see as the dangers of sensationalized reporting on clinical trials.

Most agreed inflated claims about Tecentriq — along with a notable downplaying of serious harms — likely created false expectations among triple-negative breast cancer patients. Some expressed downright anger about the coverage.

“Living with a terminal illness is an emotional roller coaster to begin with. I think it’s disgraceful to peddle hope with such a broad brush stroke when the reality is it’s little more than a fine tip pen mark, at least for now,” said AnneMarie Ciccarella, a patient advocate who writes the blog ChemoBrainFog.

Suzanne Hicks, an active member of the National Breast Cancer Coalition, said hyping a treatment for headline value is “simply cruel” to patients who are “often willing to do anything to survive.”

Hopeful stories tend to get shared by friends, family, and fellow patients. Ciccarella noted that the news release was posted in a Facebook support group. In response, a group member shared a Forbes column that was among the few pieces expressing strong cautions about the study.

“I can’t help but wonder how many well-intentioned friends called to make sure these patients are ‘aware’ of this new ‘breakthrough,'” Ciccarella said.

‘It’s disgraceful to peddle hope’

Some stories echoed the hopeful narrative of the news release, which emphasized the potential survival benefit in the subgroup of PD-L1 patients. That benefit still needs to be confirmed by a subsequent, larger study — a point that was neglected in some stories.

CBS News went a step further than other outlets by focusing on a single patient who had an atypically positive result. As discussed in our tips for writing about immunotherapy, it’s important for journalists to seek out multiple patients and/or ask detailed questions about patients who’ve responded unusually well.

Readers might not distinguish between all patients in the study and those in the subgroup.

“The thing with hope is this: We never want it taken away from us,” Ciccarella said. “There are almost always success stories, primarily outliers, or in this case, it appears a certain subset of patients who might respond.”

Deanna Attai, MD, a breast surgeon at the David Geffen School of Medicine at the University of California Los Angeles, agreed. “Early studies showing ‘promising’ results do not ensure that all subsequent patients will have the same good outcomes, and that the outcomes will be [long-lasting]. So there is the potential to foster false hope among a patient population who may be desperate, and rightly so, because they have no other options,” Attai said.

Positive spin pressures patients

Priorities for reporting on treatments for terminal illnesses

Christine Norton of the Minnesota Breast Cancer Coalition said news stories should prominently report:

1. Overall survival rate of those treated

2. Quality of life

3. Detailed description of the patients who were studied

4. Percentage who experienced harms

5. Cost

Positive spin might encourage patients to seek costly treatments that won’t help and could hurt, although Attai said they would not necessarily get those treatments.

Still, there could be an emotional toll.

“One problem we see with people who have cancer that has metastasized is the push to keep doing treatment and try different kinds of treatment even if it’s not going to extend their life or improve their quality of life,” said breast cancer survivor and epidemiologist Mandy Stahre, PhD.

She said patients who read such coverage “may feel like they’re being treated unfairly, and only if their doctor puts them on the immunotherapy will they get better. The costs both financially and emotionally for people wanting to find a ‘cure’ are inflated by this type of news coverage.”

Patients want quality of life, too

Several advocates railed against the downplaying of immunotherapy’s toxic side effects, which can hasten death.

For example, Newsweek waited until its final paragraph to mention that 103 patients had serious side effects from the immunotherapy and six suffered fatal reactions. That compared with three fatalities in the group that didn’t receive the drug.

According to the study, three of the deaths in the immunotherapy group were attributed to the treatments, versus one of the deaths in the placebo group.

“This hit me right between the eyes and frankly, it’s irresponsible to put this in the very last paragraph when most people likely will not have even gotten that far,” Ciccarella said.

Also not reported widely was that patients in the group that got immunotherapy were almost twice as likely to drop out of the trial.

Hicks said these bad effects should have gotten stronger play: “Survivors don’t want only a few weeks, especially if those weeks are difficult and the entrance to end-of-life. They also want quality-of-life.”

Christine Norton, president and co-founder of the Minnesota Breast Cancer Coalition, said serious harms and quality of life data are among the things that should be mentioned high in any news story about treatments for terminal illnesses. (See box.)

“I think most patients with a terminal illness of any type care about and deserve the media to clearly report on two things: any improvement in overall survival with a treatment and the quality of life while using that treatment. This treatment failed on both counts for most of the participants,” Norton said.

‘It’s not a game.’

Eric Topol, MD, executive vice president and professor of molecular medicine at Scripps Research, said the reporting is “emblematic of so much other coverage” that conveys outsized claims for new drugs.

“I always get kind of nauseous when I read the word ‘game changer’ because it’s not a game,” Topol said, referring to a researcher’s glowing remark in the Times story.

He said based on the coverage, “The public may get a false impression that there’s this cure out there.”

Tecentriq joins a long list of $100,000+-a-year cancer drugs that haven’t been proven to extend survival yet come with bad side effects and typically win FDA approval based on their ability to move a needle on an unproven surrogate endpoint or in a subgroup of patients.

Trials like this one that measure multiple endpoints increase the chance that a drug will demonstrate some effect that suggests a benefit, said Topol, who on Twitter critiqued data reporting of the study.

Too often news coverage laps up the positive nuggets while tuning out negative findings that may have a greater impact on patients.

“What should have been conveyed to the public by these articles was that there wasn’t any improvement in survival,” Topol said, noting that the Associated Press was among the few news outlets that clearly reported that point, in the fifth paragraph. The AP also raised the issue of side effects in its lead.

“We all want to see progress” in treating metastatic triple-negative breast cancer, Topol said. “But there’s no reason to exaggerate what the data showed.”

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Comments (10)

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John Erickson

October 24, 2018 at 8:04 pm

Just an FYI
My wife passed away from TNBC we did alternative treatments and she live about 20 months, but had excellent quality of life so sometimes you must choose the life treatments that fit you best the finish line may be the same

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Richard Nunziata

October 24, 2018 at 8:25 pm

I would like to understand how the over hype had gotten into report and who was responsible for representing the research in this light. I think this will go a long way into stopping this kind of thing.

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William Ducan

October 25, 2018 at 7:40 am

You find the same kind of reporting in national security and political reporting too and that’s no game either. Yellow journalism is the norm now.

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Barbara Gilbert

October 25, 2018 at 8:07 am

There is one very highly successful immunotherapy drug for those of us who are HER2 positive, so many believe that all types of breast cancer are now “curable”. I read the article about Tecentriq in my medical news (I’m an RN who subscribes to a number of professional publications), and my reaction was, “what are they trying to foist on the public now? Three or four months worth of extra life is not an extension as much as it is a hoax”. False hope is cruel, and an extra couple of months worth of suffering for a patient and their family is not offering anything at all. What the lay public innocently passes along to friends and family members means well, but if they can’t understand the differences in the types of breast cancer, the drugs that treat them individually, and what the results of such trials really mean, then such things are not ready for prime time announcements and should not be published where they can copied and pasted to an email. I just don’t know how to stop it. I had many such emails and had to spend precious time, I felt, to educate the well-meaning that my treatments were different because…….blah, blah, and explaining the different types of breast cancer require different treatment protocols. That’s just me being a nurse who believes in teaching anyone who will listen, but pity the women who can’t even explain those differences or their differences. Few can even correctly pronounce the names of the drugs used because we’ve all gotten so generic-centric. I hate that, too, LOL!

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Lisa Murry

October 25, 2018 at 10:04 am

Although “statistically insignificant,” I think a 21% increase in life expectancy would be enough (for me) to consider trying the treatment. It shouldn’t be touted as a cure, but as an improvement to current treatment options.

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    Kevin Lomangino

    October 25, 2018 at 11:04 am

    Dear Lisa,

    I am not a statistician, but I’ve written enough about these matters to know that your statement does not reflect an accurate understanding of the concept of statistical significance.

    The fact that the increase in reported life expectancy was not statistically significant means that the researchers can’t confidently state that the benefit is real. It’s possible that it is real, but it’s also possible that there is no benefit. A larger study is needed to settle the matter.

    When a study outcome regarding a potential benefit is not statistically significant, it is customary and expected that this will be reported as a negative study. As in, “the drug did not increase survival.” The fact that this did not happen here is problematic, and why many patients, cancer experts, and journalists have decried the misleading characterization of the study results.

    Thanks for reading and commenting.

    Kevin Lomangino
    Managing Editor

    Reply

Gerald West

October 25, 2018 at 12:08 pm

I was diagnosed with Stage 4 metastatic renal cell carcinoma almost 4 years ago and was given 5 to 7 months to live. After surgery to remove a large tumor on my kidney and kidney, I joined a clinical trial where I was given Avastin and Tecentirq. I stayed on that combination for 1 1/2 years, but had to drop the Avastin because of side effects. I continued with the Tecentriq. The clinical trial ends next week after just over 3 1/2 years. While I still have cancer my tumors have shrunk, not grown or disappeared. While on Tecnntriq alone I have had very little in the way of side effects. So my first-hand experience with Tecentriq has been a positive one.

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    Kevin Lomangino

    October 25, 2018 at 2:04 pm

    Gerald,

    Thanks for sharing your story. I am happy to hear that you are doing well and responding well to this treatment. However, I think your comment serves as a reminder that no individual’s experience can take the place of a well-designed scientific study when it comes to determining the benefits and harms of a treatment.

    Sadly, those who don’t do well with this treatment may not be motivated or able to share their story, which may not be as positive as your experience. That’s why we urge journalists to move beyond individual stories and report thoroughly what the data show. That’s the best way to capture the reality of treatment and unfortunately, it didn’t happen with many news articles covering this study.

    Best regards,

    Kevin Lomangino
    Managing Editor

    Reply

Bruce Bodner, MD

October 26, 2018 at 5:05 pm

Fake news comes to medical coverage. It’s really nothing surprising. “News” outlets always look to spin their product to attract readers or viewers.

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Shannon Brownlee

October 30, 2018 at 1:13 pm

I’m usually happy to jump on the bandwagon of blame for journalists, but words like “game changer” and “change the standard of care” are not invented by journalists, but by marketers and PR people. Whether it’s the company’s press release, or its key opinion leader (whose name was conveniently supplied in the press release), or the academic institution’s press office, the hype originates with those who are selling product. I agree, journalists need to be a lot more skeptical, but let’s lay blame for the hype evenly.

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