CANCER TREATMENT HYPE GIVES FALSE HOPE
Families hear good news that doctors have disease in retreat — then reality strikes back hard
After Michael Uvanni’s older brother, James, was diagnosed with a deadly form of skin cancer, it seemed as if everyone told the family what they wanted to hear: Have hope. You can beat this. We are here to help.
The brothers met with doctors at a half-dozen of the country’s best hospitals, all of which have impressive credentials that inspired confidence.
Michael Uvanni was in awe when he visited the University of Texas MD Anderson Cancer Center in Houston, one of the world’s most respected cancer hospitals. It was like seeing the Grand Canyon, said Uvanni, 66, of Rome, N.Y. “You never get used to the size and scope.”
Even the MD Anderson logo on buses and buildings — which shows “Cancer” crossed out in red, above the words “Making cancer history” — made the family’s battle seem winnable.
“I thought they were going to save him,” said Uvanni, an interior designer.
Patients are bombarded with the news that the country is winning the war against cancer. The news media hype research results to attract readers. Drug companies promise “a chance to live longer” to boost sales. Hospitals woo paying customers with ads that appeal to patients’ fears and hopes.
“I’m starting to hear more and more that we are better than I think we really are,” said Otis Brawley, chief medical officer at the American Cancer Society.
The consequences are real — and they can be deadly. Patients and their families have bought into treatments that either don’t work, cost a fortune or cause life-threatening side effects. “We have a lot of patients who spend their families into bankruptcy getting a hyped therapy that (many) know is worthless,” Brawley said.
Although scientists have made important strides in recent years, and many early-stage cancers can be cured, most of those with advanced cancer die.
For Uvanni, hope gave way to crushing disappointment when his brother’s health declined, and he died from metastatic melanoma in 2014.
“You get your hopes up, and then you are dropped off the edge of a cliff,” Uvanni said.
Caregivers like Uvanni can suffer grief and guilt if loved ones are riddled with side effects and don’t survive as long as the family expected, said Holly Prigerson, codirector of the Center for Research on End-of-Life Care at Weill Cornell Medical College.
For decades, researchers rolled out cancer therapies with great fanfare, said Vinay Prasad, an assistant professor of medicine at Oregon Health and Science University. When such efforts fall short, the cancer world simply moves on to the next big idea.
Hyping early scientific results can attract investors that allow researchers to continue their work. Positive results can lead biotech firms to be bought out by larger drug companies. “It’s in the interest of almost every stakeholder in the health system to be optimistic about these therapies,” said Walid Gellad, co-director of the Center for Pharmaceutical Policy and Prescribing at the University of Pittsburgh.
Of course, there is money to be made. The USA spent nearly $88 billion treating cancer in 2014, and patients paid nearly $4 billion out of pocket, according to the American Cancer Society Cancer Action Network. Spending on cancer, a disease that most afflicts the aging, is likely to soar as people live longer.
Others argue that the excitement about cancer research is justified. A spokeswoman for the Pharmaceutical Research and Manufacturers of America, an industry group, said cancer patients have good reason for optimism.
“We continue to see great strides in identifying the genetic mutations and related factors that can drive the seemingly random formation of abnormal cells in cancer,” spokeswoman Holly Campbell said in a statement.
PROMISES TO CURE ABOUND
Even the country’s top scientists sometimes get carried away.
In 1998, Nobel laureate James Watson — who co-discovered the structure of DNA — told The New
York Times scientists would “cure cancer in two years,” using drugs that block tumor blood supplies. At that time, the drugs had succeeded only in mice.
In 2003, the director of the National Cancer Institute, Andrew von Eschenbach, announced a goal of “eliminating suffering and death due to cancer by 2015” by better understanding tumor genetics.
In a recent interview, von Eschenbach acknowledged he didn’t communicate his goal well.
“We’re offering what we have, but making it appear that it’s more than what it is,” said von Eschenbach, a senior fellow at the Milken Institute, a health and public policy think tank.
It’s easy to see how patients’ hopes are raised, said Timothy Turnham, former executive director at the Melanoma Research Foundation, an advocacy group.
“There is a disconnect between what researchers think is statistically significant and what is really significant for patients,” Turnham said. “Patients hear ‘progress,’ and they think that means they’re going to be cured.”
Uvanni said his brother’s experience was nothing like the sunny images in TV commercials, in which cancer patients hug their grandchildren, hike in the mountains and lead dance classes.
A TV commercial for the Bristol-Myers Squibb drug Opdivo projects the words “a chance to live longer” on the side of skyscrapers as a captivated crowd looks on. In much smaller type, a footnote reveals that lung cancer patients taking Opdivo lived just 3.2 months longer than others.
A TV ad for Merck’s Keytruda features reassuring images of a smiling, healthy patient hugging her family — not fighting for breath or struggling to walk. Although the commercial notes that the people in the ad are portrayed by actors, the commercial claims the drug provides “a chance for a longer life. It’s Tru.”
“Your heart sinks when you see those ads,” Uvanni said. Seeing the family depicted in the ad, he said, “makes you wonder if they’re going down the same path that we did.”
The Keytruda ad notes that 71% of patients given the drug were alive “at the time of patient follow-up,” compared with 58% of those who received chemotherapy. The ad doesn’t mention that the “time of follow-up” was 11 months.
“It’s not false; it’s just incomplete,” said pharmacist Harold DeMonaco, a visiting scientist at the Massachusetts Institute of Technology in Boston. “They don’t give patients or the patients’ family enough information to make a reasonable decision.”
In an interview, Merck Senior Vice President Jill DeSimone said the company aims to be responsible with advertising, noting that the Keytruda ad reminds patients to talk to their doctors. “The physician is the ultimate decider on treatment,” DeSimone said.
In a statement, Bristol-Myers’ Senior Vice President Teresa Bitetti said Opdivo ads play “an important role in educating patients about new treatment options and fostering informed conversations between patients and their doctors.”
Hospitals also have drawn criticism for overstating their success in treating cancer. In 1996, Cancer Treatment Centers of America, a for-profit chain, settled allegations from the Federal Trade Commission that “they made false and unsubstantiated claims in advertising and promoting their cancer treatments.”
The company’s commercials — dozens of which are featured on their website — boast of offering “genomic testing ” and “precision cancer treatment.”
The commercials don’t tell patients that these tests — which aim to pair cancer patients with drugs that target the specific mutations in their tumors — are rarely successful, Prasad said. In clinical trials, these tests have matched only 6.4% of patients with a drug, according to Prasad’s 2016 article in Nature. Because these drugs manage to shrink only a fraction of tumors, Prasad estimates that just 1.5% of patients actually benefit from precision oncology.
In a statement, Cancer Treatment Centers of America said, “We use national media to help educate cancer patients and their families about the latest diagnostic tools and treatment options. … All of our advertising undergoes meticulous review for clinical accuracy as well as legal approval to ensure we tell our story in an informative and responsible manner, and in compliance with federal guidelines.”
For more than a decade, the Food and Drug Administration approved no new treatments for metastatic melanoma. Patients typically died within a year.
Since 2011, the FDA has approved 11 new treatments, including several immunotherapies, which aim to harness the immune system to fight cancer.
Researchers have tested immunotherapies against a variety of tumors, leading to approved drugs in lung cancer, kidney cancer, bladder cancer and others. Such success has led doctors to label cancer immunotherapy as a “game changer.”
Yet these treatments — which were initially assumed to be gentler than chemotherapy — can provoke fatal immune system attacks on organs.
Uvanni’s brother — who tried immunotherapy, as well as other approved and experimental treatments — survived 31⁄2 years after his diagnosis. That might lead many oncologists to describe his story as a success. Uvanni sees no reason to celebrate. He wanted more than short-term survival for his brother.
“I thought we were going to have a treatment where we’d at least have a good block of quality time,” Uvanni said.
“You get your hopes up, and then you are dropped off the edge of a cliff.” Michael Uvanni
Michael Uvanni of Rome, N.Y., says his older brother, James, may have gotten more time from the many drugs he tried during his illness, but his quality of life was not good.
Nobel laureate James Watson predicted a cancer cure was imminent.
Andrew von Eschenbach had a goal of beating cancer by 2015.
Michael Uvanni of Rome, N.Y., speaks to a client, Laura Tardugno, in one of his interior design business showrooms. Uvanni was devastated when his brother James, 66, died from cancer after more than three years of specialized treatment.