For Eileen O'Sullivan, diagnosed breast cancer in 2013 has been the catalyst for a deluge of clearly unscientific and often dangerous advice. An investment manager with an analytical mind, she began looking for information to help her better understand her life-changing situation. But from the moment Eileen began her online research, misinformation was inevitable: "That's when all suggestions begin to arrive," she says. "Before the diagnosis, I had never heard of cancer treatments for cancer: herbs, supplements, diets, juices, healthy food, homeopathy, essential oils, nor advertising for alternative cancer clinics at the same time. foreign. I certainly did not look for them, but I've had countless prompts based on keywords such as breast cancer. I was also inundated with parents and friends coming out with poison-based treatments – and even other patients in the chemotherapy rooms and waiting rooms. "
As a cancer researcher deeply involved in popular science, I can say that few people cause an emotional response as intense as cancer. There is no family in the world spared by the disease and the word itself is enough to induce a sense of fear, even among the hardiest of us. Cancer is oppressive and ubiquitous: half of us who live today will suffer directly. But despite its omnipresence, it remains poorly understood and the falsities around it can flourish.
The dubious claims about cancer online are legion, mere remedies to claims of a plot to remove "the truth" about it. In 2016, more than half of the top 20 cancer articles on Facebook were medically discredited. And that goes well beyond Facebook – the the Wall Street newspaper recently revealed that YouTube hosted accounts with thousands of subscribers promoting fake cancer treatments. O'Sullivan's skepticism gave him some immunity to the lure of unfulfilled promises. But after losing her mother to breast cancer, "the fear has made me more vulnerable to pseudoscience than I would like to admit," she said.
She now passionately defends the rights of patients because she keeps others away from everything that is prejudicial – a problem she considers relentless. This assessment adds to the comments of Dr. Robert O'Connor of the Irish Cancer Society: "Virtually all patients are exposed to misinformation, [coming] well-meaning but uninformed relatives to a plethora of sources of exploitation and profit on social networks. "
A quick search on the Web reveals ostensible treatments ranging from vaguely scientific to profoundly esoteric. The non-exhaustive list of unrequited claims from the US Food and Drug Administration (FDA) is greater than 187, while the list of fake remedies from Wikipedia ranges from "energy-based" to "spiritual healing." Other claims include hyperbaric oxygen therapy, cannabis oil, shark cartilage, ketogenic diets and baking soda.
There is growing concern that such fictions may overshadow reliable information. Macmillan Cancer Support recently appointed a nurse specifically to demystify online stories, prompting Oncology Lancet Comment: "How is society at this stage, where untested interventions are chosen over effective, evidence-based treatments? Unfortunately, misinformation and – frankly – lies are widespread and have the same breadth as verified evidence. "
Cancer Research UK and the Wellcome Trust echo these concerns. New patients, in particular, are often targeted by those who call for "cancer cures". While some of them are well intentioned but misguided, others are focused on trade. Sonya Canavan, another cancer survivor, said, "In the forum on breast cancer patients that I used to post, I often saw" patients "posting articles on all sorts of charlatans, who turned out to be salesmen looking for companies.
The fact that pseudoscience is claimed by vulnerable patients is not a new problem: cancer scams have been around for decades and their fight is at the root of the 1939 Cancer Act. The essential difference now lies in the ease with which lies can be disseminated. David Gorski, cancer surgeon, professor of surgery and oncology at the Wayne State University School of Medicine in Detroit, Michigan, and editor of the online journal Scientific medicine, notes that misinformation about cancer is "much more prevalent now for the same reason that other theories of misinformation and conspiracy are so prevalent – because they are so easily disseminated on social media."
Whether by desire to help or by quack naked, the net impact of such misinformation is extremely negative. Patients engaged in unproven cancer treatments are more likely to decline conventional treatments or delay life-saving interventions. This has a terrible cost. Patients who subscribe to alternative approaches are twice as likely to die during the same period as those using conventional therapies. Even worse, it is not uncommon for promoters of questionable information to resort to the fear of conventional therapies. Radiation therapy and chemotherapy are often considered "poisons", putting life at risk. Cancer is scary and the promise of simple treatments can be attractive.
All the false statements, however, betray the same fundamental misunderstanding: cancer is not a monolithic entity, but a family of more than 200 known diseases. Derived from mutations in a patient's cells, the cancer is extremely complex and diverse. It is highly unlikely that a single "miracle solution" can treat cancer in all its forms. The idea of a panacea is attractive, but unfortunately misguided and is a warning Klaxon of a questionable science. Non-scientific interventions may nevertheless incur substantial costs.
Based in his Texas clinic, Stanislaw Burzynski claims to cure cancer with a unique "antineoplaston" treatment. Despite its activities for decades, according to the National Cancer Institute (NCI), "other researchers have failed to replicate these results." Since its inception, the clinic has been the subject of many warnings from the FDA, but it continues to promote itself as able to cure patients. And it's not cheap – the US NCI warns patients that the treatment costs more than $ 7,500 to $ 10,000 a month (£ 5,600 to £ 7,580) and states, "Evidence of use of the Antineoplaston treatment as a cancer treatment is inconclusive. Controlled clinical trials are needed to evaluate the value of this treatment. "
Despite the negative publicity, business continues as usual for Burzynski. The crowdfunding may have made his clinic more popular. Instead of scientific evidence, it relies on good testimonials to attract new clients, although in some cases they come from patients who have already died – a fact that is absent from promotional material.
This is despicable, but not unique – there is an abundance of dubious clinics around the world that promise the impossible at exorbitant prices. Last year, an Irish television survey investigated clinics in Istanbul that had been hugely successful with unconventional therapies. The patients were billed more than 130,000 € (116,000 £) and were given the green light in Turkey. According to the program, patients found that their cancers had progressed significantly after being scanned after returning home. Germany is also home to several effectively unregulated clinics, presented as luxury spas but promising cures. These are supported by numerous testimonials addressed to international customers, whose treatments cost hundreds of thousands of euros, despite the lack of evidence of their effectiveness.
Such exploitation goes well beyond immediate victims, crowdfunding being generally used to cope with exorbitant prices. A paper in the British Medical Journal Last year, on the basis of figures collected by the Good Thinking Society, it was found that at least £ 8 million had been collected since 2012 in the United Kingdom solely for unjustified cancer treatments. or discredited. Michael Marshall, project director of the Good Thinking Society, explains: "The sums raised through crowdfunding are just the tip of the iceberg. Many patients take out loans, mortgage their homes and spend their life savings. When these so-called remedies prove to be of no benefit, families face huge debts when they cry for a loved one. "
To explain the lack of evidence in support of their claims, the providers of charlatan remedies accuse the medical and scientific community of suppressing cancer treatments. This is not a mere marginal belief: 37% of Americans think the FDA is doing just that. But the affirmation is nonsense. It would require a vast conspiracy of hundreds of thousands of scientists and doctors to maintain it – an unlikely scenario.
Moreover, if there was such a plot, would not those who work in the field of cancer be as vulnerable to its malignant influence as anyone else? We all lose loved ones because of cancer and succumb to it. The charges of conspiracy create mistrust between patients and care teams.
The increase in misinformation about cancer is part of a larger problem related to online lies. As with the equally dangerous explosion of anti-vaccine myths, the untruths about cancer are impacting both our physical well-being and the understanding of science and technology. medicine by the public. In an ocean of noise and fury, it is not always easy to distinguish between reputable and repulsive people, but excellent resources are available to patients and their families. Cancer Research UK and the US National Cancer Institute are doing thoughtful and authoritative research.
Like anti-vaccine sentiments, cancer myths are growing on social media. There is a strong argument that these platforms have a moral obligation to suppress groups and individuals who spread misinformation. As O'Sullivan notes, "Facebook, YouTube and Twitter drive a patient into a rabbit hole, many think it's 'doing their research'. I do not think we can stop those who are making false cancer claims, but maybe we could isolate patients and regulate cancer claimants as well as hold social media platforms for cancer. officials.
As a result of an outbreak of measles caused in part by anti-vaccine activism online, several social media platforms have promised to adapt their algorithms to reduce the "false news" about the cancer. But this filtering is easily bypassed. Social media business models thrive on engagement rather than truth, and a cynic might think that there is little reason to regulate such content, beyond appearing to be concerned. Whether the problem is lack of capacity or inclination, misinformation about health remains widespread. It is imperative to improve our ability to assess the avalanche of medical claims: our continued well-being depends on it.
Dr. David Robert Grimes is a cancer researcher, physicist and science writer. His first book, The irrational monkey: Why a wrong logic puts us all in danger and how critical thinking can save the world, will be published by Simon & Schuster in September