Jess Ainscough, Belle Gibson, and “wellness warriors” vs. cancer

Recent articles in The Daily Mail and The Australian reminded me that it’s been over a month since the unfortunate demise of Jess Ainscough, a young Australian woman who was diagnosed with an epithelioid sarcoma of her left upper extremity in 2008. Before I get to the articles, a brief recap is in order.

This is a very rare tumor that is generally slow growing but relentless, with most untreated patients dying within 10 years, although with radical surgery and complete removal of all tumor deposits it is possible to produce ten year survivals on the order of 49-72%, closer to 72% for young patients. Unfortunately, given the location of the cancer, after being diagnosed with this incredibly rare form of cancer at age 22, Ainscough was told that she required amputation of her arm at the shoulder. Also, given the fact that the only known potentially curative treatment for epithelioid sarcoma is wide excision with relatively large margins of normal tissue around the tumor, I originally surmised that she probably needed a forequarter amputation, which involves removing the arm at the shoulder joint, including the shoulder blade. It’s a very disfiguring operation and not guaranteed to cure her by any stretch of the imagination.

Understandably, just as any young active person wouldn’t want such a disfiguring operation, Jess didn’t either, but initially resigned herself to it. Not long before her surgery her doctor offered her an alternative, namely isolated limb perfusion, a process by which a limb’s circulation is disconnected from the body and the limb is perfused with very high dose chemotherapy. It worked at first, but the cancer recurred a year later. It was at that point that Ainscough abandoned conventional medicine and undertook Gerson therapy, complete with dozens of supplements, fresh juices twelve times a day, and, of course, coffee enemas five times a day. Being charismatic and media-savvy, over the course of a few years, she was reborn as The Wellness Warrior and became a media fixture down under, promoting healthy living mixed with woo like the Gerson protocol, even making YouTube videos singing the praises of coffee enemas and explaining how to do them. Meanwhile her mother developed breast cancer and also chose Gerson therapy instead of conventional medicine, a much more inexplicable decision given how much less deforming and more effective breast cancer therapy is.

Ainscough did well at first, actually for several years, but this is not surprising given that epithelioid sarcoma tends to be slow growing, even as it is deadly in the end. Bolstered by credulous media, she forged a happy career for herself selling “wellness”; that is, until biology caught up with her and her mother. First, her mother died about a year and a half ago. Then, a few months later, bloggers and Jess Ainscough’s followers started noticing that her arm wasn’t looking so good, that it looked as though she was developing more tumors and more deformities in her hand. In September 2014, she had to cancel an event, and by December she was forced to admit that her condition was deteriorating. Still she wrote as though she were planning on continuing as The Wellness Warrior in 2015, even as she admitted that she had consulted a conventional oncologist.

Then, a month ago she died, and within hours her social media pages were scrubbed and her website converted to a memorial photo. Meanwhile, her fans attacked anyone who commented on the story and questioned her having promoted quackery like the Gerson protocol. Things went quiet. Then Ainscough’s fiance, Tallon Parmenter, sent out an e-mail to everyone on her mailing list. It was a sad and poignant e-mail, but unfortunately it also promised that Ainscough’s blog would return and seemed to imply that Parmenter would be carrying on the legacy of The Wellness Warrior.

A day later a story appeared in The Daily Mail, which revealed more, but not nearly enough, about what had happened:

The devastated fiance of the late ‘wellness warrior’ Jessica Ainscough has written an emotional letter to her followers, revealing she was undergoing radiation treatment in her final weeks and ‘giggling and drinking green smoothies’ in her hospital bed until the day she died.

Ms Ainscough, 30, died in late February following a lengthy fight with a rare and aggressive form of cancer known as epithelioid sarcoma.

She spurned chemotherapy and radiation, choosing to fight the cancer with a controversial treatment known as Gerson Therapy, which involves a vegan diet and coffee enemas and does not have scientific support.

But after discussions with ‘oncologists, healers and specialists around the world’, in her final weeks – the most ‘difficult’ weeks of her fight – Ms Ainscough began a course of targeted radiation, her partner Tallon Pamenter has revealed.

You might remember that when Ainscough revealed that her health had deteriorated, she also described how she had developed large fungating masses that bled almost constantly. So it makes perfect sense that what would be recommended for her would be radiation therapy, because that’s usually the first thing tried to control masses like this that can’t be surgically removed anymore. This is how Permenter described it:

The plan for us was simple (it’s been the same since the start) – To do what ever the body needs to give it the best chance to fully heal. Before Christmas we were so relieved to receive scans confirming that the cancer had not spread beyond the original area. I actually smiled when our oncologist said ‘what ever you’ve been doing for the past 7 years seems to have been working’.

This was fantastic news however the fungating tumour in Jess’s shoulder had become large and painful. For the first time, Jess’ ability to enjoy her favourite things like walking our furbabies on the beach was becoming difficult.

After carefully discussing all options with oncologists, healers and specialists around the world, Jess was offered targeted radiation as the best option with a 50/50 possibility of improving her quality of life or limiting it further. This was a risky and tough decision but Jess bravely embraced this last chance option.

Given this seeming confirmation of Jess’ account describing her tumor as not having spread beyond the original area made me wonder what had happened. Clearly, the tumor was bigger and/or her tumors were more numerous. (Remember, epithelioid sarcoma is rarely a single tumor; and it was easy to tell just looking at Jess’ arm that she had multiple tumors.) I particularly have to wonder about this given this description by Parmenter:

Right up until the last day of her life, Jess was sitting up in the hospital bed with her best friends giggling and drinking green juice. Talking about upcoming wedding plans and future names for our babies. She never gave up and always had hope.

While the radiation did appear to shrink the large tumour mass, some complications arose during the final stages of the treatment. Not long after, the words I LOVE YOU would leave from my lips only to fall softly upon Jess’s ears for the last time. I said good-bye to the love of my life that day and my heart has been in a million pieces since.

First off, we know that Jess must not have been in the greatest shape if she was hospitalized. It’s not clear how long she was hospitalized, but it sounds as though it was for quite a while. Most of the time, radiation therapy is administered as an outpatient, and even fungating wounds are usually dealt with as an outpatient with a visiting nurse to help with the dressing changes and periodic visits to the doctor to inspect the wounds and adjust the care based on what they look like. What could the complication have been? Sepsis? Certainly that’s possible any time there’s a huge fungating mass being treated with radiation. However, if she had life-threatening sepsis that ultimately killed her, it’s highly unlikely that she’d be happily chatting from her hospital bed while drinking veggie smoothies even up to the day she died. She’d have become sick as snot, as we say in the biz, at least several hours, if not a day or two, before. I could see how, if she had a do not resuscitate order, sepsis might have taken her from seemingly as well as a patient with advanced cancer can be to dying, but given Parmenter’s description of her optimism and belief that she’d live to marry him and have children with him, I doubt that was the case.

What about a pulmonary embolus (blood clot going to the lung)? That sounds more likely, particularly given that an upper extremity tumor such as what she had could easily have impinged on the major vein leading to her arm and causing a clot. True, pulmonary emboli from upper extremity clots, though not uncommon in patients who have such clots, are only seldom as deadly as they are when they originate in the leg veins, but they can still kill. The bottom line is that, unless Ainscough’s family provides more detail, we’ll never know what the terminal event is. It doesn’t really matter that much, other than academic interest, anyway. In the end, the cancer killed her, as predicted.

In his letter Parmenter complains about “finger pointing” and “people wanting to lay blame for personal choices others have made,” as well as how “unconventional” medicine has come under fire “to the point where family members are blamed for supporting a loved ones chosen healing path.” While it is understandable how Parmenter and Ainscough’s family would want to support her and offer comfort and reassurance, that’s not the main reason why there has been criticism. Let’s just put it this way. If Ainscough had simply chosen for herself Gerson therapy instead of conventional therapy and died, it would have been just as tragic, but it would have been just her and her family. She didn’t. As the article in The Australian describes, she went far beyond that. Because the article’s behind a paywall, I’ll quote generously to give you the idea:

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”.

In other words, if Ainscough hadn’t promoted Gerson therapy and other quackery, using claims that she had cured herself of cancer, I would still be sad about her death, but I probably wouldn’t have paid more than a single blog post’s worth of attention to her story. That’s the crux of the problem, not that Parmenter and others who loved Ainscough supported her through her ordeal. Before I read this article in The Australian, I really had had no idea just how lucrative The Wellness Warrior’s empire had become—and how quickly.

The article also describes the more general phenomenon, of which Ainscough was a pioneering founder, of “wellness blogging.” In particular, given that this all happened in Australia, I hadn’t been aware of Ainscough’s connection with Belle Gibson, a young woman who claimed that she had kept brain cancer at bay for four years without conventional medical treatment using a vegan lifestyle. As an admirer of Ainscough who had first encountered her at a conference in 2013, Gibson’s rise in the “wellness” industry was meteoric:

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.

There’s just one problem. Bloggers had been wondering about her stories for months, pointing out the many inconsistencies and how her stories didn’t make sense, and finally allegations of fraud percolated up out of the blogosphere to the mainstream Australian press. Not long after Gibson attended Ainscough’s funeral, The Australian revealed that it was all nonsense, that Gibson had had a long history of highly unlikely near-death stories and even admitted that some of her cancer claims were not true. In additional articles, it was revealed that friends had doubted her claims about cancer since high school. Gibson disappeared. It was learned that:

  • Gibson is lying about her age, and is three years younger than she claims to be.
  • In May of 2009, she claimed she nearly died on an operating table after undergoing heart surgery.
  • She has conceded that she was “misdiagnosed” with regards to her July 2014 cancer claim.
  • She cannot name her own doctor.
  • She claimed she had a forty minute long seizure at her son’s party, a very serious medical event for someone with a brain tumor.
  • She went a trip two days later.
  • She still claims that she did once have a malignant brain tumor and that she extended her life using alternative therapies.
  • She claims that she is now seeking treatment from a conventional team.

Among other things.

As reported by The Independent, suspicions were raised when charities to which Gibson claimed to have donated profits from her book The Whole Pantry reported never having received any money from her. Things degenerated from there, with Gibson lashing out at her critics as her empire crumbled. Her Apple Watch app was pulled, and her book removed from sales, while photos of the clean-living claimant herself enjoying a pint were published, courtesy of a Facebook page Belle Gibson Uncovered. Meanwhile, Gibson could still face charges for her deception.

Of course, there is a big difference between Belle Gibson and Jess Ainscough. It’s quite clear that Ainscough was a true believer who paid the price for her belief while it’s not at all clear how much Gibson believes or if she’s just a grifter. (I lean towards grifter, based on what I know and how she might have used the family of a boy with brain cancer to learn more about cancer treatments, which makes tales of patients who followed her even more depressing.) However, the similarity is that both of them were quite good at monetizing their skill at social media and promotion of “wellness” as “healthy living” supplemented by quackery like the Gerson protocol. I hope that Gibson gets what she deserves, but Jess Ainscough has already paid the price after living well for a while. That doesn’t get her off the hook, though, because who knows how many her advocacy as The Wellness Warrior might have led down the path of quackery to their deaths?

The depressing thing about all of this is that none of this will stop the “wellness movement.” Jess Ainscough’s health finally starts deteriorating from her cancer, and Belle Gibson rises to take her place. Belle Gibson is revealed to be a fraud, and now apparently a woman named Candace Marie-Fox appears poised to take her place, while people who profited from their pseudoscience, like Ainscough’s manager, make excuses:

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.

Yes, but they’re much less likely to pass away if they don’t rely on quackery such as what Luciano promoted through Jess Ainscough. Such hypocrisy infuriates me. Here Luciano is, having survived because of science-based medicine, and she’s making lame excuses like this.

Unfortunately, there will never be a shortage of “wellness warriors” like Jess Ainscough, Belle Gibson, and Candace Marie-Fox. When one dies or is revealed as a fraud, others rise and the same people profit from them. Same as it ever was, only far easier, thanks to the Internet.