The new anti-vaxxers: Why fake cancer cures are on the rise
Is social media’s myth-spreading power to blame for vulnerable patients being bombarded with remedies, asks Margarette Driscoll
Last week, at a converted 18th-century farmhouse near Derby, friends gathered in memory of Katie Britton-Jordan, who died recently after a valiant struggle against breast cancer. She was 38 and leaves a grieving husband, Neil, and Delilah, their five-year-old daughter. Neil, who announced his wife’s death on Facebook earlier this month, called for the event to be a celebration of Katie’s strength and resilience. He asked friends to “bring smiles, love, dancing shoes, bubbles and sparklers”.
By rights, should Katie still be alive? That troubling question is bound to ripple through the minds of her loved ones. When Katie’s stage 2a triple negative breast cancer was diagnosed in 2016, she was offered a mastectomy, chemotherapy and radiotherapy. But she rejected conventional therapy in favour of a vegan diet of mainly raw fruit and vegetables, supplemented with turmeric, seaweed and spells in a hyperbaric oxygen chamber.
She sought help at a clinic in Mexico, where therapies included placing her feet in a basin of water that supposedly drew toxins from her body.
Britton-Jordan was an intelligent woman with a long-standing interest in alternative therapies, who made a decision based on her beliefs. But doctors are becoming increasingly concerned at the targeting of vulnerable cancer patients by charlatans peddling well-meaning but useless therapies – a problem that is gathering pace thanks to the use of social media, and drawing parallels with the newly emboldened anti-vaccination movement.
Patients who refuse conventional treatment and opt for alternatives are two and a half times as likely to die within five years of being diagnosed.
David Gorski, an American surgical oncologist who specialises in breast cancer, and a crusader against “quackery” through his blog,
Respectful Insolence, is convinced that if Katie had opted for conventional treatment, she would still be alive. “From what I’ve learnt about her cancer, I can say with confidence it was quite treatable,” he says. “It hadn’t gone to the lymph nodes. With a combination of surgery plus chemotherapy, she could have expected an 85 per cent chance of long-term survival. Yes, surgery is nasty. Chemotherapy is even worse, I get that. The alternative, however, is near-certain death.”
The anti-vaccination lobby has been adept at using social media, with doctors and government agencies caught on the back foot, using old-fashioned means of communication. In England, take-up for the measles, mumps and rubella jab by children’s fifth birthday is down, alarmingly, to 87.2 per cent, below the level needed to provide widespread immunity.
A similar stream of antiestablishment rhetoric around cancer – dismissing chemotherapy as “poison” – seems to be taking hold. Amazon Prime was recently found to be carrying unscientific “documentaries” purporting to show that cancer might be cured through dietary changes, including the story of a German woman, who claimed to have overcome cancer in 30 days using laetrile, a substance derived from fruit pits, which breaks down into cyanide in the body. Amazon has since taken these documentaries down.
Outlandish stories about “cures” for cancer have been doing the rounds for years, of course, but social media is speeding up dissemination, making it easier than ever to take the message direct to cancer sufferers.
Anyone who posts on Instagram or Twitter with the hashtag “cancer” is likely to find themselves bombarded by news of miracle cures and treatments, from turmeric shakes, green tea and high-dose vitamin C to proteolytic enzyme therapy, cannabis or frankincense oil.
“There are a lot of people out there selling this kind of quackery,” says Catherine Priestley, clinical nurse specialist at the charity Breast Cancer Care, which funds research and supports women through diagnosis and treatment. “It’s easy to think ‘It can’t do me any harm’, but just because it’s natural does not mean it is safe.”
Priestley draws a clear distinction between complementary therapies like massage and acupuncture, which have been shown to relieve symptoms and side effects from cancer treatment, and alternative therapies, which aim to replace conventional chemo and radiotherapy. Trends come and go: one of the most popular alternatives doing the rounds until recently was the idea that you could “cure” cancer with maple syrup and bicarbonate of soda (the apparent logic being that cancer cells love sugar and thrive in an acidic environment, so if you took both together the cells would soak up the sugary syrup then be destroyed by the alkaline soda).
“Now it’s CBD (cannabis) oil,” says ys Priestley. “Don’t believe everything ng you read on the internet, look for evidence and talk to your medical team. If a website says something has been studied, look up that study. It might be that 50 per cent of people got great benefit from a treatment but if that 50 per cent is two out of four people, it’s meaningless.”
Rebekah Smith, 35, was diagnosed with breast cancer exactly a year after Katie Britton-Jordan, in July 2017. She was found to have a similar triple negative cancer, but more advanced, at stage 3. After announcing her diagnosis, she says she was deluged with “help” from friends: “People don’t know what to say, so they try to offer hope. It’s ‘Have you tried honey? What about an alkaline diet? Eat lots of lemons. If you eat loads of turmeric it’s meant to cure cancer’ and so on… In the early days, I took natural honey every day, tried a spoonful of turmeric and thought ‘if it works, it works’, but
‘Surgery is nasty. Chemotherapy even worse. The alternative is near-certain death’
in my head I knew that science was my best warrior.”
Smith, from Leicester, who has two sons, Louis, 3, and Henry, 5, had surgery to remove the tumour, then six rounds of chemotherapy followed by radiotherapy. Once she started posting about her cancer on social media, the messages began.
“Lots of stuff from people trying to sell you vitamins. They say all sorts of things: other people have taken it, and it’s done this and done that… it’s hard to tell, is it a company targeting me to purely make cash, because I am vulnerable? Or someone who genuinely wants to help me?
The messages always seem to come secondhand, from someone who knows someone who took something. It’s never the person themselves, saying ‘I took CBD oil and it’s made my cancer shrink’.”
Nine months on from her diagnosis, Rebekah was cancer-free and has since run a marathon.
Sophie Sabbage, author of The Cancer Whisperer, was diagnosed with incurable lung cancer that had spread to her bones and brain, five years ago. She has had both conventional and complementary treatment. “There are some dodgy people out there, but there are also some amazing people, doing amazing things. The trouble is that, as a patient, you get caught in the crossfire. Conventional oncologists will say ‘Don’t bother with all that quackery.’ Natural practitioners will say ‘Don’t do chemo, it will kill you.’ They’re both taking a position and you have to somehow make decisions with very little help.”
Sabbage runs a Facebook group for fellow sufferers and says she has to be “extremely strict” about who is allowed to join, as people keep attempting to use the group to sell remedies. The members of her group swap experiences and advice. “We can ask each other ‘have you tried this?’. In general, what I’d say is: do your homework. Don’t just say yes because someone is promising you something. In fact, if they are promising, say no.”
Katie Britton-Jordan was well aware that friends and family were worried. She admitted, two years ago, that she was getting “almost daily messages” pleading with her to try the conventional path.
After she died, her husband, Neil, said: “I know some people may have their own opinions on what Katie should or should not have done, but whatever that is, it does not alter her bravery and dignity over the last three years.”
No one will know how things might otherwise have been – but it is a tragedy for him, and their little daughter, that she is gone.