Sue Rochman is an independent health care writer and editor based in San Francisco. For more than two decades, she has specialized in covering cancer care and treatments.
Promoted ads and videos for the cancer drug Cyramza (ramucirumab) began showing up on Twitter in May. They’ve also appeared in print publications. The ads encourage you to read the words of “determined Cyramza patients” whose faces come alive with color as phrases such as “I want to keep a flower garden” “I want to dance off-beat with my wife, while my daughters laugh and call us embarrassing” animate.
The ad, which has been viewed more than 1.1 million times, sells the idea that Cyramza will breathe new life into patients who are “determined to keep fighting.” The drug’s manufacturer, Eli Lilly and Company, didn’t introduce the idea that cancer is a war to be fought as aggressively as possible. But its ad is banking—literally—on the fact that people with cancer and their family members and friends believe it.
That belief is not innocuous. In fact, it causes real patient harm.
Bishal Gyawali, MD, PhD, an oncologist at Brigham and Women’s Hospital in Boston, has seen the harms firsthand. He recalls one patient, a 75-year-old with relapsed ovarian cancer who was brought to his clinic in Nepal by her sister, son and daughter-in-law. “The patient was clear on her intent,” he said, “she did not want chemo.” But her family was adamant. They said to her, “How can you do this to us? We won’t let you die!”
At the next appointment, he said, she told him she wanted treatment. “She didn’t want to be a bad example to her children by being someone who was not up to the fight or someone who would rather give up than continue to fight.” Yet the fact is, “grit or determination to fight are neither prognostic nor predictive markers. This is not a journey that can be won by determination.”
Cyramza is approved for patients with certain types of metastatic cancer who have already tried other approved cancer drugs to treat their metastases. These patients’ cancers are considered incurable. The ads dangle the potential of more time—possibly years. But that’s not the case. The survival benefits seen in randomized controlled trials range from a median of 1.4 months to 2.2 months, depending on the type of cancer.
“To prop up Cyramza, supported by data for a minor incremental benefit, with these pastel images of happy and invigorated patients choosing the life Cyramza provides over the unpainted alternative falsely suggests a benefit that for the majority of patients is minimal,” said Douglas Rubinson, MD, PhD, a medical oncologist at the Dana-Farber Cancer Institute in Boston, who said he found it “incredibly frustrating” when he first saw the ads on his Twitter feed.
Also, “more” time doesn’t necessarily mean more time feeling good. The drug’s side effects include a reaction from the drug infusion that feels like having the flu, serious bleeding, high blood pressure, diarrhea, mouth ulcers, swelling of the hands, arms, legs, ankles and feet as well as a decrease in appetite. The drug may also cause gastrointestinal tears, neurological disorders, thyroid problems and an increased risk for blood clots, heart attack and stroke.
Ads like these also cause harm by perpetuating the belief that only weak patients talk to their doctors about quality of life or end-of-life care. “The mindset that cancer is a fight establishes an unfortunate dichotomy where a patient can either fight or surrender,” said Rubinson. “Many patients feel a sense of obligation—to family, to God, to others—to fight and experience tremendous guilt over considering a focus on symptom management.”
Amy Berman, a Senior Program Officer at The John A. Hartford Foundation, was diagnosed seven and a half years ago with stage IV inflammatory breast cancer. A registered nurse and widely respected health care advocate, she has used her personal cancer diagnosis to raise awareness about the need for doctors to talk about not only treatment options but treatment goals. “Too many clinicians believe in an outdated mantra of healthcare heroics,” she said. “If there is one more treatment arrow in their quiver it must be used.”
Faced with an incurable cancer, and an 11% to 20% chance of surviving five years, Berman decided with her oncologist to choose treatments that would hold back the cancer with the least amount of side effects. “I wanted my remaining time to be as meaningful and enjoyable as possible,” she said.
HealthNewsReview.org has written extensively about the “cancer warrior trap” and why some experts believe this battle narrative tramples over the complexities of the disease. You can hear some of these thoughtful voices—including patients, doctors, and advocates—discussing why the language of cancer matters in this recent podcast.
In April 2018, Gyawali published a paper in Ecancer, the open access medical journal of the European Institute of Oncology, on the factors that influence doctors to stop active cancer treatment. The catalyst for his paper, he said, was his own experiences with and feelings about treating terminal cancer patents. “I had the unfortunate experience of witnessing some cancer patients die in hospital receiving chemo until the very end of their lives,” he said. “I felt very bad about the patient, about myself and our practice [and] I made it a point to not repeat these mistakes to the extent it was possible.”
Patients, family members and doctors all need to understand it’s not just about choosing treatment wisely, he said, but avoiding treatment wisely too. That’s why he took additional time that day in Nepal to explain to his patient’s children that “treatment would be futile,” he said. “I’m glad we didn’t fill the last two months of her life with chemo appointments, but she was almost about to because she didn’t want to be seen as someone who quits to her children.”
Yet, as Berman points out, avoidance is rarely a study objective. “The number one thing older adults experiencing serious illness want is independence—not being a burden on their loved ones and the ability to remain at home,” Berman said. “But our clinical trials don’t look at this outcome. They typically look at length of life while being blind to the quality of that life. It’s time we provide meaningful information to patients.”
“The point is that I am also fighting,” Berman continued. “It’s just that I’m fighting to hold on to the quality of life that I have. I wish these misleading forms of medical marketing would show photos of the side effects and words of those who experience them so people can understand the need to carefully weigh treatment decisions.”