Posted 05 April 2017
This article published in the Guardian, reports on Belle Gibson, a young Australian who claimed to have been cured of cancer following a ‘natural’ path, and in the process building a thriving career based on what in fact turned out to be a lie. She never had cancer.
There are lessons to be learnt here – South Africans are constantly being bombarded by fake cures and treatments, including for weight-loss, HIV/AIDS cures, prostate formula’s, anti-aging pills – as CamCheck can attest.
Belle Gibson mimicked countless fake healers. They aren’t delusional
Ranjana Srivastava Wednesday 5 April 2017 03.47 BST
Imagine for a moment being diagnosed with cancer and being one of the 14 million people worldwide each year shattered by a diagnosis that sinks the heart like none other. If you are lucky enough to live in one of the handful of sufficiently resourced countries, you get to meet an oncologist.
The oncologist says that your cancer is treatable, even curable, but you will need an intensive course of chemotherapy. The list of side effects is long and individual but in general terms you can expect nausea, vomiting, immune suppression, lack of appetite, nerve damage and organ dysfunction. You will almost invariably feel fatigued and should plan to take time off work. Your hair may not grow back and your fertility may never return. Anxiety and depression may become your constant companion.
While you are still getting past the shock of the diagnosis, you are given a bunch of papers to read and sign so treatment can begin. And since the oncologist lost you at “I am sorry, it’s cancer”, all you can hear in your ears is the din of, “I will die” and almost certainly not the bits that follow, like the modest but promising gains in therapies, improving survival rates and your doctor’s unprecedented access to advocacy on your behalf at the touch of a keyboard.
You won’t register mention of potent anti-nausea drugs, dietary assistance or psychological help. And you may not even remember the nurse who handed you a clipboard to measure your distress score so that she can instigate early support.
Your mind is in a whirl but the kids need collecting and your boss is waiting for you to mail back the final bit of the project. While waiting at the school gates, you scrub your tear-streaked face and find distraction on Facebook, where you are obviously drawn to cancer links. Wait a minute. Space magnet therapy. That sounds interesting – anything that involves space has got to be cutting edge, right? Microwaves – wait, you thought they were bad for you, but maybe not when you have cancer.
And then you keep scrolling and get to the most unbelievable part – natural cures that guarantee success without a single side effect. “Whole” foods to cure cancer; “earthy” recipes to banish recurrence; exotic herbs to stimulate the body; super vitamins to mend its weaknesses.
Another page boasts “exclusive”, patented salves to expel the cancer, divine balms to coax it out, gels to soothe cancer, and patches to suck it out. There are countless glowing testimonials from countless satisfied customers, every one of them looking happy and fit, with intact hair and healthy skin. These people say they are a living testament to the power of natural therapies so why didn’t the oncologist mention any of this? Why not give people the option of going natural when the alternative is harsh chemicals that wreak havoc on the system? Your head hurts from all this information but as your newest Facebook supporters exhort, what’s the harm in giving natural things a try? It’s not like the oncologist or chemotherapy are going anywhere.
This is the chain of thought described by many of my own patients who delay or decline medically recommended treatments for cancer. A few patients leave the medical system altogether but many resurface, not all of them sheepishly, either. Some profess to have had their fill of natural treatments, others confess their initial hope clouded by disappointment, and still others feel angry at being duped by charlatans, or worse, anonymous “healers” who have conducted business through a post box.
It’s hard not to view these patients with a mixture of dismay, ire, and ultimately, sympathy, because many are dying and it seems pointless to drive home any truths about hoax medicine. Hoax medicine is probably as old as medicine itself but it would be fair to say that few charlatans have enraged the normally relaxed Australian public than Belle Gibson, whose accomplishments are many.
Bestselling author, app creator, media star, wellness blogger, supporter of sick children and desperate refugees, patient advocate and terminal cancer sufferer. Add to this beautiful, vivacious and ubiquitous – her story so brilliantly clean and so utterly compelling that even her publisher feared that envious folks would try to undermine her and gave her lessons on handling the pressures of fame.
The cancer community always needs another advocate who is powerful and eloquent but alas, Belle Gibson wasn’t it. Thanks to the “digging” that her publisher warned her about, her story crumbled. And it kept crumbling. The very media that had rushed to laud her achievements queued to deride her failings, which included pocketing hundreds of thousands of dollars of charitable funds and making more than a $1m on the back of fraudulent claims about her nonexistent cancer diagnosis. To lose Twitter followers might be one thing but to have your own mother dismiss you as “a load of rubbish” must really hurt.
Last month the federal court handed down a ruling that Gibson had contravened the law. She did not file a defence, did not attend court and is awaiting penalties. The justice criticised her misleading and deceptive conduct but added the observation that perhaps Gibson had been delusional when flogging her fake claims.
Delusional? Or knowingly unethical and predatory? I am not a psychiatrist and if Gibson has a mental health issue I hope she gets treatment. But from the vantage of an oncologist, Gibson has mimicked on a large scale what countless other fakes do and they aren’t delusional. They have the measure of their customer: a desperate cancer patient who will grasp at any straw at any price because the will to live is inexhaustible.
Too many patients experience unacceptable toxicity but think it’s the price to pay for having cancer.
Gibson’s public excoriation did nothing to temper her enthusiasm for peddling cures. No reflection on the damage she wreaked on vulnerable people. No self-imposed exile from being a wellness guru to her admiring followers. No, she simply moved on to Facebook under a pseudonym and continued to champion worm-releasing enemas, iris-altering tinctures, and tonsil-shrinking teas. While many people shake their head at this nonsense, she is not short of admirers who hold her in even higher estimation as a rebuke to the naysayers.
The court may yet put an injunction on her to desist from her actions but somewhere, there is another Belle Gibson in the making, ready to spring into our consciousness. For oncologists they are a professional hazard whose misguided claims we must continue to combat.
But there is something that patients and their carers can do to help make cancer treatments more tolerable so there is less of an urge to shun them. Studies demonstrate that oncologists and nurses underestimate the prevalence of important cancer-related symptoms, particularly pain, fatigue and weight loss. In one recent study, 86% of patients reported having pain but the provider estimate was half that. Nearly all patients reported fatigue during chemotherapy but only 78% of their providers thought so. The majority of providers listed nausea and vomiting as their patients’ top concern but with better treatments, many patients now avoid this dreaded problem only to replace it with others.
While providers need to improve symptom screening, patients can help by reporting them. Don’t wait to be asked – tell your doctor just how much nausea, fatigue or anxiety you are experiencing. Tell your oncologist if your hair never grew back, your joints ache and if conceiving a child has proved more difficult than you thought. If your treatment is finished but your providers underestimated its toxicity, be sure they know now. If your experience was better than you had thought, make sure they know too.
Unfortunately, too many patients experience unacceptable toxicity but think it’s the price to pay for having cancer. They apologise for complaining but actually, every bit of their experience illuminates the way for someone else. Longitudinal tracking of cancer patients’ health status, quality of life, emotional wellbeing, unexpected complications and satisfaction with care is rarely performed but it forms the foundation of sound care.
This is why tools for patient-reported outcomes measures are finding a new life, including in various Australian jurisdictions. They fill a vital gap in our knowledge about whether our well-intentioned interventions actually make a difference to patient.
“I love you all, with all I have in me, and all I have to give,” Gibson told her followers in a now-scrubbed post. Ironically, this is what all the people she hoodwinked aspired for themselves and those they cherished.
Medicine must continue to search for ways to make this happen. Belle Gibson does not have the answer.