Belle Gibson, Amanda Rootsey, Jess Ainscough and others fight cancer with ‘wellness’

Young and beautiful, they turned their ‘cancer journeys’ into thriving businesses. But has the bubble finally burst?

Fashion model Amanda Rootsey, who was diagnosed with cancer in 2009. Picture: Jeff Camden

About 200 young women filled the conference room in Prahran’s Italianate town-hall building when the Self-Love & Sisterhood tour came to Melbourne in April 2013.

They’d paid $65 each to hear inspirational talks from four 20-something women who had turned their natural-living philosophies into thriving online businesses. Sitting onstage on a row of stools were the “spiritual practice coach” Tara Bliss, meditation teacher Melissa Ambrosini and fashion model Amanda Rootsey, who had been diagnosed with cancer in 2009 and declared she was avoiding chemotherapy in favour of natural healing. The headline attraction, however, was a vivacious, blue-eyed 27-year-old dressed in an apricot-coloured top and dark pants.

Jess Ainscough was a former magazine journalist who had built a global following for a blog called The Wellness Warrior in which she, like Rootsey, wrote of her resolve to fight cancer without medical treatment. But Ainscough had gone further, declaring in 2011 that she had cured herself by adopting Gerson Therapy, a controversial alternative treatment involving daily coffee enemas and pure juices. Her website had made her an inspirational figure in the world of “wellness” blogging, a fast-expanding zone of the internet where young women in particular flock to share information about alternative medicine, diet and spirituality. In June 2011 she had revealed that her mother, Sharyn, was suffering breast cancer and had also embarked on Gerson Therapy.

At Self-Love & Sisterhood, the four women were introduced by the tour’s promoter, Yvette Luciano — herself a cancer survivor — and at the conclusion of the one-hour show, audience members flocked around Ainscough. Among the admirers was a diminutive 21-year-old by the name of Belle Gibson, a relative newcomer to the wellness world who had just launched a blog in which she claimed to have survived terminal brain cancer without any medical treatment for four years. Ainscough was “immediately enchanted” by the younger woman’s story, she later recalled. “Here was this bubbly, ambitious, enthusiastic wellness sister chatting to us about creating her app, The Whole Pantry, who also happened to be harbouring a tumour in her brain,” she wrote. Gibson returned the praise in spades, describing Ainscough as one of her “greatest teachers and champions”.

Today Gibson is accused of falsifying her claims of cancer to promote her online business. Jess Ainscough and her mother, meanwhile, are both dead, having succumbed to the cancers they vowed to fight through natural ­therapy. By ­contrast, Amanda Rootsey and Yvette Luciano are both alive and thriving after undergoing ­conventional medical treatment. That Gibson’s extraordinary alleged fabrications were made public only two weeks after Jess Ainscough died has made the reverberations doubly seismic in the world of alternative medicine.

“There are too many people out there who say ‘I can blog’ or ‘I can build an app’ and think that entitles them to offer health advice,” says Leah Hechtman, president of the National Herbalists Association of Australia, the country’s oldest ­professional body for natural therapists. “It’s not reasonable for the level of advice a lot of them are offering.” One naturopath, whose publisher cancelled her book project in the wake of the Gibson scandal, puts it more bluntly: “The wellness bubble had to burst. It had become sensationalistic. The big discussion in our industry is whether it might be a good thing that these underqualified people come under scrutiny.”

Tony Barry, the gravel-voiced character actor most recently seen in the ABC series The Time Of Our Lives, was rushed to Princess Alexandra Hospital in Brisbane in May 2013 after a melanoma as big as a mandarin burst through the skin on his lower left leg. Barry, 73, was suffering what’s known as a “fungating tumour”, and ­surgeons were so alarmed they amputated his leg above the knee. For more than six years the actor had been refusing chemotherapy, radiotherapy or surgery for the melanomas erupting on his legs, opting instead to treat himself with a caustic ointment known as Black Salve which is sold on the internet as a “magical cancer cure”.

Barry took the alternative medicine route after visiting the Hippocrates Health Centre on the Gold Coast, an alternative clinic run by the retired Hollywood actress Elaine Hollingsworth. On her websites the 86-year-old denounces doctors as murderers and promotes Black Salve as a 2000-year-old cancer cure; she claims to have sold a million copies of her book Take Control of Your Health and Escape the ­Sickness Industry, which argues that cancer patients can increase their life expectancy by avoiding ­medical treatment. Barry himself is careful to avoid such extreme statements: he did seek medical treatment for his first melanoma but says surgery failed to stop the disease’s spread, and he became convinced that chemotherapy and radiotherapy would do more harm than good. So for eight years he has lathered Black Salve on his legs to burn off what he says are ­hundreds of skin cancers.

Black Salve is banned from sale as a cancer treatment in Australia because the Therapeutic Goods Administration says there is no evidence that it has therapeutic value. Professor John ­Thompson, executive director of Melanoma Institute Australia, acknowledges that the salve’s active ingredients will burn off skin tissue, but warns that people have injured themselves using such unregulated products, and may wrongly believe they have removed a tumour when the underlying malignancy remains. “You might as well use drain cleaner,” Thompson says.

Barry remains steadfast, however, despite losing his leg; he has appeared in street protests and videos supporting those who supply Black Salve, and argues that his survival shows that “the cancer industry” doesn’t have all the answers. “People need to take control of their lives,” he says, “because if you put it in the hands of these buggers, their model isn’t based on wellness, it’s based on sickness.”

That, in a nutshell, is the guiding philosophy of a movement that has swept the West in the past two decades. At its core the wellness credo holds that conventional western medicine is ­limited by its mechanistic view of disease, ­ignoring the connections between body, mind and environment. From its roots in 1970s ­alternative health, the movement has sparked a flowering of research into practices such as ­meditation, herbal remedies, Chinese medicine and acupuncture. But its fringe thinkers have gone further, arguing that cheap and natural cancer cures are hidden from the public by the vested interests of the ­capitalist medical system.

With the advent of Facebook, Twitter and Instagram over the past decade, those conspiracy theories migrated from the fringe into the mainstream via bloggers who found a global audience for their stories of ­cancer and healing. Amanda Rootsey and Jess Ainscough, for instance, both began blogs in 2010 that poured scorn on conventional medicine while documenting their quests to beat cancer naturally. Rootsey was then a 25-year-old model who had been diagnosed a year earlier with Hodgkin’s ­lymphoma, an often slow-developing cancer of the lymphatic ­system. An oncologist recommended chemotherapy and radiotherapy but ­Rootsey “didn’t like what she had to say” and turned to the internet. There she encountered the writings of Don Tolman, a ­Stetson-wearing wholefoods advocate from Utah who argues that chemotherapy, radiotherapy and surgery are “weapons of mass destruction” of a “ruthless and dangerous” medical system.

“I have to say that I was very resistant to what I read and heard in the beginning,” ­Rootsey wrote on her blog A Modern Girl’s Life in March 2010, “but there is only so much you can try to ignore before you begin to understand that most of the ranting and raving is probably true.” ­Having avoided the “dreadful” path of conventional treatment, she resolved instead to heal ­herself through meditation, veganism, juice-fasting and coffee enemas. It was to be a short-lived experiment because a year later Rootsey developed a tumour on her spine which threatened to ­paralyse her within weeks. In mid-2010 she was admitted to hospital in Brisbane to begin a course of chemotherapy which resulted in her cancer going into remission. She has since expressed her gratitude to the staff at Princess Alexandra ­Hospital and resumed her modelling career.

Rootsey still has a blog, and offers her services as a holistic life coach, but demurs when asked to comment on her abandonment of all-natural healing. “I’ve been in remission for four years now and to be honest, to go back and reflect on the ­difficult decisions that had to be made and the pain and suffering of that time is not something I’d like to revisit,” she says in an email. “One thing I really believe from my experience is that there is no ‘right’ way for every person.”

Jess Ainscough proved to be a far more resolute advocate of natural healing, in part because the alternatives she faced were so awful. She was only 22 when doctors told her the lumps appearing in her arm were epithelioid sarcoma, a rare ­condition for which they offered only two ­treatments: amputation of her arm, which might prevent the cancer spreading, or an infusion of chemotherapy into the limb. Ainscough opted for the latter but it failed to stymie the cancer and damaged the mobility of her arm. Refusing amputation, she opted instead for Gerson ­Therapy, a natural healing protocol that involves a strict daily regimen of 13 organic juices and five coffee ­enemas. Within 18 months of starting it in 2010, she was claiming miraculous results.

“After sticking to the strict Gerson Therapy for 18 months I cured myself of cancer,” she claimed in a short biography on her website in 2011. That same year she told her followers: “It’s kind of shocking to think that even though Dr Gerson discovered his cure way back in the 1930s, many people have still never even heard of him — let alone know that his legacy holds the answers to curing cancer.” In other posts she wrote that Gerson Therapy had “saved my life” and helped her “beat” cancer. She was also ­scathing of conventional treatment, describing it as a “scam” and arguing that women should avoid biopsies and mammograms because they spread the disease.

“Once upon a time you had to do a lot of digging to find out the truth about how to really heal cancer,” she wrote in May 2011. “These days, as more and more people are fed up with conventional options, searching for something better and discovering that there is something better, they are doing everything in their power to make sure the word is spread far and wide. I thank Facebook, Twitter and the mass inundation of awesome blogs out there for this.”

Ainscough was only 25 at the time; in later years she retreated from her harsh view of ­doctors and denied she had ever claimed to be cured. But those early posts generated the intense interest which led more than 2.5 million people to her site, and the persuasiveness of her story became evident in April 2011 when her mother Sharyn was diagnosed with breast ­cancer and also rejected medical treatment.

“Jess, I am so sorry to hear about your Mom,” said one of the many followers who sent her ­messages of support upon hearing the news. “I am currently on the Gerson Therapy, almost done 4 months, diagnosed with breast cancer. I am inspired by you, we all are, and just know that you are a grand example as to how our bodies heal …”

In the wellness movement, people find comforts that are often lacking in conventional medicine. Where doctors can be cautious and emotionally reserved, bloggers engage in the high emotions of gushing praise, tearful sympathy and boundless positivity. Where oncology and radiology offer mere increments of hope — survival for five years; a chance at remission — alternative treatments often promise nothing less than a total cure, complete with testimonials as proof. Whereas modern medicine is an intimidating edifice of multibillion-dollar drug companies, richly paid specialists and scientific argot, the blogosphere welcomes you into an extended family of ­ordinary individuals telling intimate stories of their journeys through illness.

But wellness has become a lucrative business thanks to social media, as Jess Ainscough herself candidly admitted. After completing an online course at the Institute for Integrative Nutrition — a much-criticised for-profit academy in New York — she set herself up as a “holistic health coach” in 2011 and learnt the secrets of monetising her blog from the US business guru Marie Forleo, whose B-School program at the time operated under the slogan “Rich, Happy & Hot”.

“I knew I had the potential to change lives,” Ainscough later quipped. “The head-scratcher, however, was how I was going to make enough money to fund the lucrative, laid-back lifestyle I desired to live. Keeping the fridge stocked with fresh organic produce is pricey; let alone my penchant for nice clothes.” Ainscough mastered the language of feel-good salesmanship, telling her followers that $979 might seem a steep price for her Lifestyle Transformation Guide, but “‘I can’t afford it’ is one of the most dangerous and disempowering things you can ever say”.

As well as selling her own products — e-books, jewellery, online life-coaching — she earned money spruiking the products of others, and enthused on her blog about cosmetics, clothing and other merchandise sent to her for free. ­Ainscough seems to have been more transparent than most bloggers about her commercial tie-ins and freebies, but the seemingly personal nature of the wellness world is precisely why so many marketing companies use people like her as proxy promoters. By 2013 she had made enough money to repay her father for her ­medical bills and buy a $585,000 four-bedroom home on the Sunshine Coast with her fiance, plus a $30,000 SUV. “I earned six figures within a year of completing B-School and have doubled my income every year since,” she boasted in one post, adding that the program had taught her how to “organically attract an amazing tribe of people who trust me”.

Jess and Sharyn Ainscough appeared on the cover of this magazine in September 2012, as part of a story on cancer sufferers who have declined conventional treatment. “I have total trust in the Gerson Therapy,” Sharyn Ainscough said at the time. Thirteen months later she died, aged 57, prompting medical commentators to lament that she had put herself through a punishing regimen while declining treatment that might have saved her life.

Jess Ainscough was “rattled” by her mother’s death, according to her friend Jason Wachob, founder of the MindBodyGreen website, who says she began to have doubts about healing without western medicine. Yet that wasn’t evident on the national speaking tour Ainscough undertook in January and February 2014, when she continued to advocate daily enemas, according to those who attended, and gave one interview in which she said: “My health is great.”

Only 11 days after the tour ended, Ainscough shocked some of her followers by revealing that her own cancer had “flared up” in late 2013, and that she was consulting two GPs and a surgeon. “I’ve never claimed to have cured myself,” she said in a long message on her blog, adding that she was often misquoted. In subsequent messages she revealed that a fungating tumour in her shoulder had begun constantly bleeding as early as February 2014. In June she announced she was taking a break from her blog but promised “big projects” in the works.

By then, however, the wellness movement in Australia had a new star with an even more extraordinary story.

In one of her earliest messages on Instagram in May 2013, Belle Gibson introduced herself as a young mother with a background in marketing who had moved to Melbourne in search of treatment for a malignant terminal brain tumour. Four years earlier, she said, a doctor had delivered her the devastating news that she had only four months to live. “my life kept shattering to pieces, blow after blow from there in,” she wrote, “but here i am today, still with cancer … still malignant, with my team still uncertain of how I’m doing it or what my future i[s] and damn, i woke up this morning feeling absolutely blessed.”

Thus emerged Gibson’s sassy online ­persona that would earn her an admiring global audience. Like Jess Ainscough, she wrote darkly of conventional cancer treatment, saying she turned to natural therapies after collapsing and vomiting in a park from the effects of chemotherapy. Like Ainscough, she said she used organic nutrition and Gerson Therapy to heal herself, although she added craniosacral, Ayurvedic and oxygen treatments to the mix. Like Ainscough, she used blogging to build a devoted following of young women, to whom she then sold a “wellness, lifestyle and nutrition” guide called The Whole Pantry, which came in the form of an iPod and iPad app.

Launched in August 2013, Gibson’s app was such an immediate hit that within months she was being feted by Vogue and Cosmopolitan. ­Ainscough promoted her on her Wellness Warrior blog, and Penguin Books signed her up. By then Gibson’s Instagram account had become a real-time drama in which her 200,000 followers hung on every new development in her escalating medical crises — she was in hospital, she had collapsed at her son’s birthday party, she now had cancer of the uterus, spleen, blood and brain. In outpourings of mutual adoration, Gibson assured her followers they were revolutionising the world, even if she might not be around to see it, and they in turn told her she was amazing, inspiring, breathtaking, beautiful, genuine, courageous and angelic.

As Gibson jetted to and from California in late 2014, working on her Apple Watch app and arranging international publication of her book, Jess Ainscough disappeared from public view. Bedridden with cancer for the last quarter of 2014, she resumed her blog in December to reveal she was in the care of an oncologist. “I’ve discovered that when we completely close ­ourselves off from something, the universe will sure enough give us an experience that makes us see that everything has a place,” she said, alluding to her late return to conventional medicine. Hundreds of messages flooded her website, some of them suggesting she try anthroposophic medicine, or Emotional Freedom Technique, or the “Heal Thyself” program. One woman ­confessed that she, too, had felt guilty about abandoning natural treatment for her cancer, until she discovered that conventional medicine works “surprisingly well”.

When Ainscough died from her cancer in late February, Belle Gibson flew to Queensland to sit among several hundred mourners gathered at a Baptist church on the Sunshine Coast. It was nearly two years since the two women had met at Self-Love & Sisterhood, and no one who saw Gibson sobbing in her seat that day could have suspected the storm that was about to break. Four days later, The Australian revealed that ­Gibson had a long history of unlikely near-death stories, and had admitted some of her cancer ­claims were dubious. In follow-up ­articles it was revealed that friends had doubted her cancer claims since high school, and had confronted her last year, demanding proof of her illness. Gibson went to ground, precipitating the vaporisation of her business; within two weeks her Facebook and Instagram pages had disappeared, her app was withdrawn and her book was being pulped.

Amid the anguish that ensued, Jess Ainscough’s management released a statement asserting that her only relationship with Gibson was on ­Instagram. That has not stopped Ainscough’s name being drawn into the wider debate about the ethical responsibilities of bloggers who have encouraged thousands, possibly millions, of people to believe that cancer can be cured naturally.

Ainscough’s manager, Yvette Luciano, insists there is no evidence that conventional treatment would have prolonged the lives of Jess or Sharyn ­Ainscough, as some medical commentators have argued. Luciano — who was diagnosed with breast cancer in 2010 and survived thanks to surgery, chemotherapy and radiation treatment — says amputation of Ainscough’s arm was only ever an “experimental” option. “I have known many women with cancer who do conventional treatments and still sadly pass away,” she says.

The National Herbalists Association’s Hechtman hopes that the controversy engendered by ­Gibson’s exposure will push health regulators to consider more stringent registration of people offering nutrition and health advice. “There’s been resistance to that, because the big challenge is demonstrating that there is potential harm — otherwise why bother with the safety requirements? I think a situation like this is evidence that you can show potential for harm.”

Dr Ranjana Srivastava, a Melbourne oncologist who writes on health issues, is not so optimistic about reform. The week the Belle Gibson scandal broke, a female patient came to her with a hole in her breast after trying to treat a tumour with natural therapies. “What has happened is a profusion of more extreme therapies, and that is troubling,” Srivastava says. “Things like enemas, exclusion diets, smoking ceremonies, there’s been an alarming rise in things like that. There is an extreme false reassurance offered by alternative therapies that promises nothing less than a cure, which no oncologist does. So you have a dichotomy between what conventional medicine offers and what alternative therapies offer. But this is a very old conversation, and therein lies the resignation of the medical profession.”

In the foreword of her book The Whole Pantry, Belle Gibson was asked for the secret of her enormous popularity. “Authenticity and integrity,” she replied. “It really is that simple … There’s not enough honesty out there.” Ironically, Gibson may end up being a force for more candour in the world of online health advice — albeit not in the way she envisaged.