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When we recently announced our new series on patient harms from misleading media, I heard from Robert O’Connor, PhD, research head for the Irish Cancer Society. He wanted to add an international perspective to what we were seeing about cancer misinformation in the U.S., and he wanted to help bring more patient voices into the discussion.
O’Connor is concerned about manipulation of sick patients and the worried well. He cites GoFundMe web pages that are increasing in number – “especially directed at raising 200,000 Euros for people to travel and receive unproven and often quack treatments in German and Turkish ‘clinics’.” He and some colleagues are “in an ongoing battle with a very influential chef who has claimed that her book on the ketogenic diet can greatly improve cancer outcomes.” He complains about a company touting a sequencing test for cancer with no data to support it. “We’ve waged an open war against anti-medicine advocates who have physically threatened us.”
He put me in touch with patients he had met through social media. Just as social media connected those patients with O’Connor, and connected O’Connor with me, Twitter and Facebook make it easy to spread messages of false hope, unsubstantiated cure claims, and snake oil marketing to desperate patients around the globe. Joanne Taylor of the UK, one of the patients, wrote to me: “It’s a minefield and people are just desperate sometimes. But people are losing their life savings and their homes, paying for treatments. And this shouldn’t be.”
“It’s shocking that people get away with this,” said Sonya Canavan of Colorado. “Patients can’t compete with marketing pros who play the game and do it well. I want to tell people not to fall for nonsense because patients are dying,” She was diagnosed with and treated for triple-negative breast cancer ten years ago when she was 39.
“The bottom falls out of your world,” she said. “I had young kids – 13, 8 and 6. Now my kids have a family history, so I’m always wondering if I could protect them by buying a supplement. Every time I see something I still get excited. Maybe I could guarantee my kids never get cancer. Everything sounds so promising and hopeful. I don’t know who to believe. Most people won’t dig as deeply as I do.”
Claims made for the ketogenic diet are at the top of her list of complaints. “I don’t have any active treatment options left, so I’m always looking for other ways to protect myself. The claims sound fantastic, miraculous, things I can do without going back to my oncologist. It sounded like a really good idea for me.”
That’s when she connected with O’Connor through Twitter. He helped debunk the bunk.
There’s a lot of that to go around. Canavan ticks off miracle claims for cottage cheese, baking soda, flax oil, nutraceuticals, algae pills, trampolines to drain your lymph nodes, high-frequency infrared saunas.
When she visited some online patient groups, she read claims from supposedly Stage 4 cancer patients who said they cured themselves and were now younger and more beautiful. She believes that some of these claimants were not actually patients but sellers of multi-level marketing products. She also believes that some snake oil salespeople pay people on social media to promote things for them – for a commission.
Eileen O’Sullivan of Dublin, Ireland was diagnosed with triple negative breast cancer in January 2013. She wrote to me that her experience closely mirrors Sonya Canavan’s “and indeed we often come across the same woo, disinformation and pseudoscience which is targeted at cancer patients for commercial gain.”
“I think what upsets me the most,” she wrote, “is when I see slick and manipulative marketeers preying on the anger and fear of patients and strongly suggesting that the patient’s medical team is not up with the latest science or are taking backhanders from the pharma industry and don’t have the patient’s best interests at heart. Planting seeds of doubt and mistrust. Trust and a positive open relationship with their clinical teams and allied healthcare professionals are crucially important for patients emotional wellbeing.”
O’Sullivan recently gave a talk entitled, “Decoding Cancer Science Fiction.” It captures perspectives that many people with cancer – or other serious illnesses – undoubtedly share. I encourage you to read her slides. (Acrobat 10.0 or later may be required.) In the talk, she pointed to a Cancer Claims CRAP test (more information here).
Joanne Taylor of the UK was diagnosed with breast cancer 11 years ago, married with two young children – one 2 ½ years old, the other just 5 months. Seven years later she was diagnosed with secondary breast cancer. She created a website, ABCD – or After Breast Cancer Diagnosis to help women with the choices they would face – or should be offered – driven mainly by her own experience with a lack of choice on breast reconstruction.
Shortly after we were connected via email, she reacted against what she called scare-mongering in a story by the Telegraph newspaper of London. The headline was “Chemotherapy warning as hundreds die from cancer-fighting drugs.” The story began: “Patients should be warned about the dangers of chemotherapy after research showed that cancer drugs are killing up to 50 per cent of patients in some hospitals.” Taylor wrote to me, “It doesn’t tell you whether these patients were in palliative care or what their status was, so again complete panic and confusion by the general public. People may die due to this kind of reporting as they will decide against chemotherapy. My oncologist says he has people refusing and knows that their best chance is what he has suggested.” She says others will frame chemotherapy as a conspiracy, and assert that drug companies have a cure that they’re just not giving to people. And that will lead some patients to believe claims that “keto, snake oil, alkaline, bicarbonate, apricot kernels, positivity, etc., has cured my cancer.”
Robert O’Connor looked at the Telegraph story and the study upon which it was based and wrote: “That’s a truly shocking interpretation of the data. As you might have suspected the study is pointing to inadequacies in treatment decisions and the provision of chemotherapy to patients who don’t benefit from it. The risk of death is vastly higher in patients who have poor performance than those who are proportionately in good health. Lung cancer patients unfortunately often present in an advanced state and may be desperate for treatment, not knowing how advanced their disease is. In that case a doctor cannot refuse treatment even though they know that the benefits may be marginal. Anyway, a great illustration of poor scare mongering reporting.”
Harmful scare mongering at one end of the spectrum. Harmful marketing hype at the other end. This is the range of cancer misinformation that many patients face – regardless of which side of the Atlantic they live. And you don’t find out patients’ perspectives unless and until you ask. Victor Montori, MD, of the Mayo Clinic, talks and writes about a patient revolution. If you look for it, you’ll find that it is already underway.
David Gorski’s piece on the Science-Based Medicine blog, “Ketogenic diet does not ‘beat chemo for almost all cancers’ ”
Our entire series on patient harms from misleading media messages can be found on this page.