This is an edited extract from Fake Medicine by Dr Brad McKay (Hachette, Australia RRP $32.99.)
We’re suckers for a classic fairy tale.
We love to cheer on the underdog and clap for the beautiful maiden when she perseveres against all odds to rise triumphantly from the ashes.
Belle Gibson’s life story was one of those fairy tales we desperately wanted to believe was true.
Watch: Belle Gibson rehearsing her cancer claims. Post continues below.
She fought the dark forces of brain cancer with organic food and a few cheeky coffee enemas, but instead of rising like a phoenix from the ashes, this beautiful maiden turned into the villain of her own story.
Belle’s fairy tale began in 2009 when she was in her late teens – the prime of your life, when you feel like anything is possible.
But Belle received some terrible news. She was diagnosed with metastatic cancer, with tumours identified in her brain, liver, kidneys, spleen and uterus.
Her prognosis obviously wasn’t great and she was given four months to live. When you’re diagnosed with cancer, it’s a race against time. Medical staff are keen to act quickly to either stop the cancer before it has time to spread further, or to give you the best quality of life for the time you have left.
Belle did what most people would do when they are diagnosed with cancer. She diligently followed her doctor’s advice and attended the oncology unit to commence chemotherapy and radiotherapy sessions.
Hospitals can be scary places full of serious expressions, solemn mumbles and disorientating corridors.
Thin polyester curtains rustle between beds, wards are brightly illuminated by flickering fluorescent lights and plastic hoses extend from the walls like cyberpunk octopuses.
Removing your clothing, plucking out piercings and placing your personal possessions onto a plastic tray makes you feel stripped of your identity.
Stepping into a flimsy pair of disposable underwear and attempting to cover yourself with an open-backed surgical gown is undignified and only made worse by the accumulation of sweat, tears and bloodstains as you’re poked, prodded and punctured by medical procedures.
Modern cancer treatments include surgery, chemotherapy and radiotherapy. They are generally unpleasant, involve plenty of time away from home and come with side effects – so it’s not uncommon for people to seek alternative cancer treatments that are less intense.
Unfortunately, less intense cancer treatments are frequently fatal.
Listen to Mamamia Out Loud, Mamamia’s podcast with what women are talking about this week. Post continues below.
Belle Gibson pursued medical treatment for a couple of months on the oncology ward, but eventually found it was too much to handle.
Risking everything, she swapped modern medicine for what she saw to be a more holistic approach and embarked on a quest to treat her cancer naturally by educating herself online.
She researched alternative cancer therapies and created her own combined treatment regimen of superfoods, vitamins and natural medicine.
She embraced a vegetarian diet, which included organic food and excluded gluten and sugar. She practised meditation and relaxation strategies, underwent oxygen therapy (breathing high concentrations of oxygen) and regularly evacuated her bowel with enemas made of coffee.
Belle found her own natural treatment regimen seemed to be working well. She was not only surviving cancer but thriving.
She had proven her doctors wrong and her story provided inspiration and hope for others surviving cancer across Australia and throughout the world.
She shared her journey over Instagram and rapidly became insta-famous for beating brain cancer through healthy eating.
She motivated thousands of people to optimise their own health by following her simple daily routine, and she eventually leveraged this popularity to launch her very own wellness app, The Whole Pantry, in 2013 – four years after her diagnosis.
The Whole Pantry app enabled Belle to share recipes, lifestyle advice and her success story with the world.
Supported by Apple, it was downloaded more than two hundred thousand times in the first month of release. Her story was profiled in The Australian Women’s Weekly, Cosmopolitan, Mamamia, marie claire and Elle magazine. The team at Elle were so impressed with her story that they named her the ‘most inspiring woman you’ve met this year’ in their December 2014 edition.
She negotiated a book deal with Penguin Random House and The Whole Pantry was to be launched as one of the preferred apps on Apple’s brand new smart watch.
It was a triumph that she had lived for so many years after having been told she only had a few months to live. How did she do it? Had the doctors been wrong? Was the secret to beating cancer just a healthy diet all along? Would other patients be able to keep their cancer at bay by following her advice too? Why use chemotherapy and radiotherapy if all you need to do is eat cleanly?
Belle modelled herself as a shining example of someone who had it all worked out.
Defeating cancer was as easy as eating The Whole Pantry, and if she could do it, you could too. Her app didn’t just contain recipes, she was selling hope. I wish the fairy tale ended here, where Belle Gibson and her followers discover the cure for cancer is organic food and coffee enemas, and everyone lives happily ever after.
But the cure for cancer doesn’t come from caffeinating your bottom.
Belle’s story was far from over and the first fact we need to disclose in order to unpick this fairy tale is that Belle Gibson never had cancer.
As a GP, I get to know my patients and their families very well. You watch as people get married, you diagnose pregnancies, and then get to see those pregnancies grow up into little people.
It’s a privilege to see teenagers bumble their way through asthma, acne, broken arms, broken hearts and finally find their way to adulthood.
It also tears your heart apart when some of those young patients develop brain cancer.
Symptoms can be as subtle as forgetting people’s names or as spectacular as having a seizure.
Unfortunately, the treatments available aren’t great.
If you have brain cancer, a neurosurgeon needs to open your cranium and remove as much of it as possible while trying to leave your normal brain tissue intact.
The tumour is cut into slices and examined under a microscope so the pathologist can make a determination about how aggressive it is, how far it may have spread and whether they think they got it all out.
Brain surgery leaves you with a shaved head and a scar, and hopefully without a stroke.
It’s followed by chemotherapy – where your veins are filled with chemicals intent on killing the cells betraying your body; or radiotherapy – where your skull is strapped into a vice while your head is targeted with a beam of radiation; or both.
For some people the treatment is very successful. For others, pursuing active treatment might give them an extra year at best, but most of that time could be spent in hospital.
Any medical treatment is a balance of pros and cons. There is no one-size-fits-all answer when it comes to quantity versus quality of life, and part of the artistry of oncology is to offer tailored treatments to suit each individual patient.
But this didn’t have to be your life if you followed Belle Gibson’s holistic advice. Doing things her way, you were given the chance to avoid all that horrible nastiness.
No operations, radiotherapy, chemotherapy or side effects. Just tasty meals, a regenerated brain and a long life like hers.
Despite her cancer diagnosis, Belle Gibson was a picture of health and a vast community of supportive followers were drawn to her incredible story. She sold false hope to vulnerable people, served on a magnificent plate of kale.
There were issues with her story from the beginning.
She claimed her health problems commenced after receiving an immunisation against cervical cancer.
She blamed the vaccine for giving her a stroke and then blamed the stroke for turning into brain cancer. A significant claim, which, like so much of Belle Gibson’s story, would prove false.
The HPV vaccine started being given to young women in Australia from 2007, and while it protects people from developing cancer related to the wart virus, it is not known to cause strokes.
Strokes are either ischaemic (a blockage of blood supply to part of the brain) or haemorrhagic (a bleed into brain tissue).
Brain cancer could potentially cause a stroke by blocking or damaging blood vessels in the brain, but a stroke isn’t going to cause brain cancer.
Health professionals familiar with her story thought it was improbable but this wasn’t as obvious to the general public, who are often wired for optimism.
Journalists are meant to be curious and sceptical, but they lapped it up – as did publishers, business executives and especially her fans.
Dr Stephanie Alice Baker is a sociologist from City, University of London.
She’s the co-author of Lifestyle Gurus and has been closely following Belle Gibson and the influencer phenomenon for a long time. She’s interested in the way we communicate online, how we interact with each other and how people achieve celebrity and influence in the first place.
Belle Gibson became front-page news in March 2015 when her miraculous story started to unravel.
Stephanie recalls that back then ‘Instagram was very much in its infancy. So even when she had two hundred thousand followers, that doesn’t sound huge now, but it was then.’
At that time, Belle was earning a significant income from selling her success story and through The Whole Pantry app.
Belle promised to donate some of her profit to charity organisations, however an investigation by Beau Donelly and Nick Toscano from The Age and The Sydney Morning Herald revealed these promised donations never showed up.
None of the charities had any record of receiving money from Belle Gibson, and four of the five charities didn’t even realise fundraising had been organised in their names.
People started asking more questions.
Belle defiantly posted a statement on social media reiterating her story – she had given up on conventional treatment and chosen to treat herself naturally.
She claimed conventional treatment had made her cancer worse and she was now helping other people fight cancer by using natural therapies.
Her incredible tale continued to crumble and in April 2015, Belle Gibson admitted in an interview with The Australian Women’s Weekly that she had never actually been diagnosed with cancer by a medical doctor and that no part of her story was true.
She had remained a picture of health because she wasn’t dying from cancer. She had never had cancer.
Consumer Affairs Victoria took her case to the Federal Court and in 2017 she was found guilty of misleading and deceptive conduct and fined $410,000.
She failed to pay any of the fine and in January 2020 her home was raided by Victoria’s Sheriff’s Office in an attempt to recoup funds.
The Whole Pantry app was pulled by Apple and her book publisher, Penguin, made a donation of $30,000 to the Victorian Consumer Law Fund.
Consumer Affairs Victoria recommended that Penguin must ‘enhance its compliance, education and training program with a specific focus on ensuring all claims about medical conditions are substantiated, and that statements about natural therapies are accompanied by a prominent warning notice’.
It’s difficult to know just how many people were negatively influenced by Belle Gibson’s actions.
We don’t know how many cancer sufferers followed her advice and were devastated when they were unable to recreate her success.
It’s possible that very sick people delayed treatment to follow her futile regimen.
Dr Stephanie Alice Baker gave me more of an insight into how broad Belle’s fanbase was at the time. ‘It wasn’t just cancer patients,’ she said. ‘It’s very easy to point the finger at them and say, “Oh, it was just people in search of a miracle cure,” but it wasn’t.
‘The people who were invested in her narrative were people like you and me who might have an interest in health, they might be academics, they might be practitioners. A lot of people were duped, and that certainly wasn’t limited to people who directly experienced cancer or knew somebody, like a loved one, who had cancer,’ Stephanie explained.
Belle went to great lengths to fabricate her narrative and mislead more than two hundred thousand followers.
It’s a fantastical story that seems impossible with hindsight, so why did so many people fall for it?
Associate Professor Darren Saunders is a cancer researcher who closely followed Belle Gibson’s journey because of his own interest in cancer cures – real ones.
I asked Darren why Belle Gibson was so effective at engaging with her audience and he reflected that online influencers are ‘very, very good at connecting with their audience, offering simple solutions to often complex problems. They are also very skilful in their ability to understand the fears and anxieties of their audience, and how to connect to those fears and anxieties.’
Darren explained that ‘people want to buy into the image and lifestyle that influencers project or represent’.
Online influencers are true to their name – they are influential – but their charismatic power and ability to engage with their audience can be used for honest or nefarious purposes.
In an effort to understand why influencers would ignore science or reject medical advice about something as serious as cancer, Darren suggests, ‘No doubt some are genuinely trying to help, even if misguided. Others are suffering narcissistic delusions about their own ability or insight, and others are clearly very cynically engaging in marketing and sales exercises. Some are a mix of all three.’
One of the more outrageous parts of Belle Gibson’s tale is just how influential she became without anyone thoroughly checking her credentials. Who was responsible for fact-checking Belle’s story?
Stephanie commented that in this situation, ‘a lot of people didn’t do their checks.’
But asking someone to prove they have brain cancer seems like such an odd request – even rude.
It could be interpreted as offensive or disrespectful by someone who is actually incredibly ill.
Stephanie told me this may well be true, ‘But when you’re selling a book and have, in fact, rejected modern medicine, it is in that case a reasonable request.
‘There’s a responsibility on behalf of the publisher to check credentials,’ Stephanie said, ‘that’s their responsibility because they are publishing it.’
However, she is optimistic that this kind of situation is unlikely to happen again. ‘If someone were to have a similar narrative that they put forward, it would be checked. I don’t think it will be as easy to dupe people.’
This is an idea shared by Darren who spoke with news.com.au at the time and warned, ‘We need to be sceptical of the mythical lone genius selling magical cures that ignore basic science and hard evidence … Hopefully this will make people think twice and do some basic checking of facts.’
Being diagnosed with a serious health issue can be really tough and when it happens, it’s important to have plenty of support from family, friends and trusted health professionals.
Medical teams need to offer treatments based on the latest scientific evidence and therapies proven to work.
Procedures and medication may be unpleasant, painful or even expensive, which is why the benefits, risks and potential side effects need to be clearly explained.
It’s easy for patients to feel overwhelmed.
It’s tempting to let any tense moment, tearful argument or unpleasant procedure put them off medical treatment altogether, so it’s essential for patients to be engaged and invested in their own health care.
Belle Gibson gave her audience the impression that she was able to leave modern medicine behind and forge a new path for herself.
She offered an alternative pathway free from doctors and hospitals. Her false claims could have easily inspired others to follow her example – a decision that could be disastrous.
Health professionals are on your side. It’s our job to be realistic and tell you the honest truth, and unfortunately that isn’t always pleasant to hear.
The truth may sometimes be uncomfortable, but the alternative can be dangerous.
Dr Brad McKay is an Australian science communicator, TV host and GP at his clinic in Sydney.
He is an experienced broadcaster, interviewer and public commentator, appearing regularly on TV and radio, including as a host of ABC’s Catalyst and a regular commentator on The Today Show, and presenting several medical podcasts for health professionals. He is also on the editorial board for The Medical Republic magazine.
Brad has hosted the Logie-nominated Embarrassing Bodies Down Under, a show dedicated to decreasing stigma and raising awareness of traditionally ‘taboo’ health topics. He is a member of the Immunisation Coalition, and an Ambassador for the Immunisation Foundation and the Stroke Foundation.
Feature Image: Getty.
Top Comments