The Way of the Wellness Warrior: Enabled by credulous reporting

Since I’ve been complaining about credulity in the media reporting on cancer this week, in particular the way local reporters Carol Robidoux and April Guilmet published articles that were nothing more than regurgitations of propaganda from Stanislaw Burzynski, I figured I might as well go all in and finish the week out with more of the same. Hopefully, it’ll clear the deck to move on to different topics next week. Besides, seeing this really irritated me.

I don’t live in Australia (obviously), but it seems that I’m frequently aware of things going on in Australia relevant to skeptical concerns and the defense of science-based medicine. Part of this is due to the Internet, of course, which makes it possible to have access to publications from around the world in a way that wasn’t feasible even 15 or 20 years ago. More importantly, through my blogging and visits to meetings like TAM, I’ve made contact with a lot of Australian skeptics, both online and face-to-face. In any case, that’s how I first became aware of the case of Jessica Ainscough, a young woman from Australia who was diagnosed with epithelioid sarcoma of the left arm. Because her disease was rare and difficult to treat, requiring an amputation of her arm at the shoulder, she balked at surgery. Ultimately, her doctors proposed isolated limb perfusion, which involves isolating the limb from the systemic circulation and infusing it with very high doses of chemotherapy. It worked, but her tumor recurred about a year later. It’s at that point that she turned to woo and started undergoing the Gerson therapy, which is total quackery.

Because Ainscough had a slow-growing, indolent tumor, she’s done fairly well for five or six years with essentially no treatment, building quite the woo empire for herself as The Wellness Warrior promoting various dietary woo, the Gerson Therapy (complete with demonstrations of how to give oneself a coffee enema), and lots of other dubious health advice. Her mother, in contrast, was not so fortunate. She developed breast cancer and chose the same nonsensical quackery instead of effective treatment, was not so lucky and died of her disease, almost certainly unnecessarily. Despite all this, apparently the Australian media can’t help itself. It keeps giving Jessica Ainscough positive and credulous coverage, coverage like this bit of false equivalence entitled The way of the wellness warrior:

When she was diagnosed with a rare form of cancer, she took it as “a big, big message from my body” that she needed to do things differently.

Doctors advised that her best bet for beating the cancer was to have her arm, where the tumours were, amputated.

“[The cancer] was so stubborn, traditional treatment methods wouldn’t work,” Jess says she was told.

The doctors ended up offering Jess a less aggressive alternative to amputation. They performed a procedure called an isolated limb perfusion, which essentially means a high dose of chemotherapy is delivered to a confined area – in this case Jess’ arm.

She also began researching alternative therapies.

As a result of her research she decided to try Gerson Therapy. The controversial treatment involves, among other things, no alcohol or meat, daily juicing and up to six coffee enemas a day.

True, Sarah Berry, the author of this piece, includes a disclaimer that the National Cancer Institute that there is no evidence that the Gerson therapy works for any cancer, because it doesn’t. It’s based on long abandoned ideas of how cancer forms and the concept that somehow shooting coffee up your bum (switching to Australian/English mode) does anything whatsoever to slow or stop the progression of cancer. Despite all this, Ainscough is portrayed as a maverick bucking the system and taking a gamble that “paid off”:

Now 28, Jess has been in remission from cancer for almost six years and, to track her recovery process and journey to wellbeing, she began writing a blog, The Wellness Warrior, four years ago.

Get a load of how her detractors are described:

Despite her enviable lifestyle and snowballing success, Jess is not without detractors.

She is passionate about her path, but there are just as many who are just as passionately opposed to those who promote alternative therapies as viable options for treating life-threatening diseases such as cancer.

“These treatments don’t work for everybody,” admits Jess. Her own mum also tried Gerson therapy and died of cancer late last year.

“It’s the same thing with conventional treatments.

“It doesn’t mean alternative medicine doesn’t work and that chemotherapy doesn’t work.”

See the false equivalence? To Berry (through Ainscough), quackery like the Gerson therapy is just like chemotherapy in that it doesn’t always work. It’s such utter nonsense, because Gerson therapy doesn’t “always” work. It doesn’t work, period. Chemotherapy might not always work. It might not even work that well for some cancers. But, because of science, we know how likely it is to work, for what cancers it’s likely to work for, and what the toxicities are. With the Gerson therapy there is no reason to suspect that it will work for anything. While I am sympathetic to Ainscough’s plight in that she is a young woman with a horrible disease that is likely to grow slowly until it kills her, that does not mean she shouldn’t be called out when she promotes quackery that, if followed, will lead to the unnecessary death of cancer patients.

Patients like her mother. (Yes, I know her mother Sharyn was probably into quackery before Jessica was, but Sharyn’s faith in the Gerson therapy nonetheless likely killed her.)

Ainscough’s support of quackery doesn’t stop her form scoring gigs on popular Australian morning shows, either:

Notice how carefully Ainscough hides her left arm. The camera angles are carefully chosen not to show her arm, and when her arm is shown it’s heavily bandaged. Clearly, she is not doing as well as she tries to make her audience believe. Worse, the producers of this TV segment have let her completely promote her propaganda that falsely conflates healthy eating which she tries to demonstrate in the segment with her embrace of the Gerson therapy, as though they fit together like, if you’ll excuse the simile, a hand in a glove. They don’t. Eating a healthy diet does not mean that you have to embrace quackery like the Gerson therapy—or any other alternative treatment, for that matter—and accept it as valid and necessarily part of a “healthy lifestyle.”

As for Ainscough’s arm, its function appears to be significantly impaired, as some of my commenters have noticed. She has significant fixed flexion of her left index and middle fingers, and her arm is never shown. There are photos of her to be found that show how bad her arm is. One is from two years ago, which shows sores and the flexed left middle finger. This photo on Facebook from December shows sores and large tumors on her arm. This photo, from yesterday, shows her hiding her arm as she is being made up for an appearance. This photo from November shows her at a book signing shows a left arm that doesn’t look very good at all, as does this photo. What’s clearly happening, despite her claims otherwise, is that her tumors in her arm are slowly growing. That is the natural history of this particular form of sarcoma. It is indolent and slow growing. Unfortunately, this type of tumor is as relentless as it is indolent, and all the wishful thinking in the world won’t stop its progress any more than the Gerson therapy will. I don’t know if it’s too late to save Jessica Ainscough’s life with an amputation, but I hope that it isn’t.

As much as I hate what Ainscough is doing promoting quackery, I can’t help but feel some sympathy for her. It was a horrible choice she faced: amputation versus the inevitable growth of her tumor until it causes her death. And amputation might not have even saved her. She’s been fortunate to have done so well for so long, given how poor the ten year survival is without surgery, but approximately a third of patients will survive ten years without surgery. In that respect, then, Ainscough’s survival for six years treating herself with quackery is not particularly surprising. Worse, the Australian media is enabling her. No one asks inconvenient questions, such as why her arm is so bandaged in the segment. Producers cooperate with her to hide just how bad her arm is through the use of clever camera angles. Her delusion is fed, and never is heard a discouraging word. In the meantime, she reaps great rewards, charging $99AUD for tickets to see her speak.

Yes, the Australian media is quite culpable and deserves to be called out for its role in enabling Ainscough, just as she needs to be called out for her promotion of the quackery that is the Gerson therapy.