For Eileen O’Sullivan, being diagnosed with breast cancer in 2013 was the catalyst for a deluge of distinctly unscientific and frequently dangerous advice. An investment manager with a analytical mind, she began seeking information to better understand her potentially life-altering condition.
However, from the moment Eileen starting searching online, misinformation was unavoidable.
“This is when all the suggestions start rolling in,” she says. “Before diagnosis, I had never heard of crank treatments for cancer: herbs, supplements, diets, juicing, clean eating, homeopathy, essential oils, nor adverts for overseas alternative cancer clinics. I certainly didn’t go looking for them, but I got endless prompts based on keywords such as breast cancer.”
Illustration: Kevin Sheu
“I was also inundated with relatives and friends coming out with crackpot therapies — and even from other patients in chemo wards and waiting rooms,” she says.
As a cancer researcher deeply involved in science outreach, I can attest that few subjects provoke quite the emotional response that cancer does.
There is not a family in the world untouched by the disease, and the word itself is enough to induce a sense of fear in even the hardiest among us. Cancer is oppressive and all-pervasive: Half of us alive today will experience a direct brush with it.
However, despite its ubiquity, it remains poorly understood and falsehoods around it can thrive.
ONLINE CLAIMS
Online, dubious claims about cancer are rife, from outright “cures” to assertions of a conspiracy to suppress “the truth” about it. In 2016, more than half of the 20 most shared cancer articles on Facebook consisted of medically discredited claims. This goes far beyond Facebook — the Wall Street Journal recently revealed that YouTube was hosting accounts with thousands of subscribers that promoted bogus cancer treatments.
O’Sullivan’s skepticism gave her some immunity to the lure of empty promises, but having lost her mother to breast cancer, “fear left me more vulnerable to pseudoscience than I would care to admit,” she says.
She is now a passionate patient advocate, steering others away from damaging falsehoods — a problem she sees as unrelenting.
This grim assessment chimes with the observations made by Robert O’Connor of the Irish Cancer Society: “Practically all patients are exposed to misinformation, [coming] from well-meaning, but misinformed loved ones to a plethora of exploitative and profiteering sources on social media.”
A quick Web search reveals ostensible treatments ranging from the vaguely scientific-sounding to the profoundly esoteric. The US Food and Drug Administration’s (FDA) non-exhaustive list of debunked claims numbers more than 187, while Wikipedia’s list of bogus cures run from “energy-based” to “spiritual healing.” Other claims involve hyperbaric oxygen therapy, cannabis oil, shark cartilage, ketogenic diets and baking soda.
There is increasing concern that such fictions risk eclipsing reputable information. Macmillan Cancer Support recently appointed a nurse specifically to debunk online stories, prompting The Lancet Oncology to comment: “How has society got to this point, where unproven interventions are being chosen in preference to evidence-based, effective treatments? Unfortunately, disinformation and — frankly — lies are widely propagated and with the same magnitude as verified evidence.”
Radiotherapy and chemotherapy are dismissed by charlatans as poisons, imperiling lives
Similar concerns are echoed by Cancer Research UK as well as the Wellcome Trust.
New patients in particular are often targeted by those pushing cancer “cures,” and while some of these are well meaning, but misguided, others are commercially driven.
Sonya Canavan, another cancer survivor, noted: “In the breast cancer patient forum I used to post on, I often saw ‘patients’ posting about all kinds of quackery, who turned out to be salespeople trawling for business.”
That pseudoscience is being hawked to vulnerable patients is not a new problem — cancer scams have existed for decades, and combating them was the impetus behind the UK’s 1939 Cancer Act. The substantial difference now is the ease with which falsehoods can be disseminated.
‘EASILY SPREAD’
Cancer surgeon David Gorski, professor of surgery and oncology at the Wayne State University School of Medicine in Detroit, Michigan, and managing editor of the online journal Science-Based Medicine, notes that cancer misinformation is “way more prevalent now for the same reason other misinformation and conspiracy theories are so prevalent — because they’re so easily spread on social media.”
Whether born out of a desire to help, or naked charlatanism, the net impact of such misinformation is overwhelmingly negative. Patients engaged with unproved treatments for cancer are more likely to reject conventional treatment, or delay life-saving interventions. This comes at a terrible cost; patients who subscribe to alternative approaches are more than twice as likely to die in the same period as those who rely on conventional therapies. Worse again, it is not uncommon for promoters of dubious information to resort to scaremongering over conventional therapy. Both radiotherapy and chemotherapy are frequently dismissed as “poisons”, imperiling lives. Cancer is frightening, and promises of simple cures can be alluring.
However, all false claims betray the same basic misunderstanding: Cancer is not a monolithic entity, but a family of more than 200 known diseases. Arising from mutations in a patient’s cells, cancer is extremely complex and diverse. It is highly unlikely that a single “magic bullet” could treat cancer in all its forms. The idea of a panacea is attractive, but woefully misguided, and a klaxon warning of dubious science. Unscientific interventions can nevertheless come with substantial price tags.
Based in his Texas clinic, Stanislaw Burzynski claims to cure cancer with a unique “antineoplaston” therapy. Despite operating for decades, according to the US National Cancer Institute (NCI) “other investigators have been unable to duplicate these results.”
Since its inception, the clinic has been the subject of numerous FDA warnings, yet continues to promote itself as capable of curing patients. And it does not come cheap — the NCI warns patients that treatment costs upward of US$7,500 to US$10,000 monthly and says: “The evidence for use of antineoplaston therapy as a treatment for cancer is inconclusive. Controlled clinical trials are necessary to assess the value of this therapy.”
CROWDFUNDING
Despite negative publicity, it is business as usual for Burzynski. If anything, crowdfunding might have made his clinic more popular. In lieu of scientific evidence, it relies on gushing testimonials to lure new customers, although in some cases, these come from patients already deceased — a fact absent from the promotional material.
This is contemptible, but in no way unique — there is an abundance of dubious clinics worldwide promising the impossible at eye-watering prices.
Last year an investigation on Irish television probed clinics in Istanbul that were claiming huge successes with unconventional therapies. Patients were charged more than 130,000 euros (US$146,406) and given the all-clear in Turkey.
According to the program, patients discovered their cancers had progressed markedly when scanned after returning home.
Germany, too, is home to several effectively unregulated clinics, presented as luxury spas, but promising cures. These are backed by fawning testimonials pitched at international customers, with treatments costing hundreds of thousands of euros, despite no evidence for their efficacy.
Such exploitation goes far beyond the immediate victims, with crowdfunding typically used to meet their exorbitant prices.
A paper in the British Medical Journal last year, based on figures collected by the Good Thinking Society, found that at least ￡8 million (US$10 million) had been raised since 2012 in the UK alone for unsubstantiated or discredited cancer treatments.
As Good Thinking Society project director Michael Marshall explains: “Sums raised through crowdfunding are just the tip of the iceberg, with many patients taking out loans, mortgaging their houses and spending their life savings. When these supposed cures turn out to offer no benefit, families have been left coping with huge debts when they are grieving for their loved one.”
CURE SUPPRESSION?
To explain the paucity of evidence for their claims, purveyors of quack remedies accuse the medical and scientific community of suppressing cures for cancer. This is not a mere fringe belief — 37 percent of Americans believe that the FDA is doing just that.
However, the claim is nonsense. It would require a vast conspiracy of hundreds of thousands of scientists and doctors to sustain — a scenario unlikely to endure.
Plus, if there were such a conspiracy, wouldn’t those who work in the cancer sphere be just as susceptible to its malignant influence as anyone? We all lose loved ones to cancer and succumb to it. Conspiracy claims foster distrust between patients and healthcare teams.
The rise in cancer misinformation is part of a wider problem with online falsehoods. Like the equally dangerous explosion in anti-vaccine myths, cancer untruths have an impact on both our physical well-being and on the public understanding of science and medicine. In a sea of sound and fury, discerning between the reputable and the repugnant is not always easy, but there are excellent resources available for patients and their families.
Well-researched guides by Cancer Research UK and the US National Cancer Institute are enlightening and authoritative.
Like anti-vaccine sentiment, cancer myths thrive on social media. There is a strong argument that these platforms have a moral obligation to remove groups and individuals propagating misinformation.
As O’Sullivan notes, “Facebook, YouTube and Twitter lead a patient down a rabbit hole, with many thinking this is ‘doing their research.’ I don’t think we can stop those making false cancer claims, but maybe we can insulate patients and regulate those making cancer claims, as well as holding social media platforms accountable.”
In the wake of a measles resurgence driven in part by online anti-vaccine activism, several social media platforms have promised to massage their algorithms to reduce “fake news” on cancer. However, this filtering is easily bypassed. Social media business models thrive on engagement rather than veracity, and a cynic might think they have little reason to regulate such content, beyond appearing to be concerned.
Whether the problem is absence of ability or inclination, health misinformation remains widespread. It is imperative that we improve our ability to assess the avalanche of medical claims: our continued well-being depends on it.
David Robert Grimes is a cancer researcher, physicist and science writer.
With escalating US-China competition and mutual distrust, the trend of supply chain “friend shoring” in the wake of the COVID-19 pandemic and the fragmentation of the world into rival geopolitical blocs, many analysts and policymakers worry the world is retreating into a new cold war — a world of trade bifurcation, protectionism and deglobalization. The world is in a new cold war, said Robin Niblett, former director of the London-based think tank Chatham House. Niblett said he sees the US and China slowly reaching a modus vivendi, but it might take time. The two great powers appear to be “reversing carefully
As China steps up a campaign to diplomatically isolate and squeeze Taiwan, it has become more imperative than ever that Taipei play a greater role internationally with the support of the democratic world. To help safeguard its autonomous status, Taiwan needs to go beyond bolstering its defenses with weapons like anti-ship and anti-aircraft missiles. With the help of its international backers, it must also expand its diplomatic footprint globally. But are Taiwan’s foreign friends willing to translate their rhetoric into action by helping Taipei carve out more international space for itself? Beating back China’s effort to turn Taiwan into an international pariah
Typhoon Krathon made landfall in southwestern Taiwan last week, bringing strong winds, heavy rain and flooding, cutting power to more than 170,000 homes and water supply to more than 400,000 homes, and leading to more than 600 injuries and four deaths. Due to the typhoon, schools and offices across the nation were ordered to close for two to four days, stirring up familiar controversies over whether local governments’ decisions to call typhoon days were appropriate. The typhoon’s center made landfall in Kaohsiung’s Siaogang District (小港) at noon on Thursday, but it weakened into a tropical depression early on Friday, and its structure
Since the end of the Cold War, the US-China espionage battle has arguably become the largest on Earth. Spying on China is vital for the US, as China’s growing military and technological capabilities pose direct challenges to its interests, especially in defending Taiwan and maintaining security in the Indo-Pacific. Intelligence gathering helps the US counter Chinese aggression, stay ahead of threats and safeguard not only its own security, but also the stability of global trade routes. Unchecked Chinese expansion could destabilize the region and have far-reaching global consequences. In recent years, spying on China has become increasingly difficult for the US
RSS