I hesitated before writing this. You can claim the high moral ground. The truth may well be on your side. Yet no matter what you say or do it sounds like a cheap shot. Kicking someone when they are down. It seems like an empty, pathetic gesture, even though, metaphorically speaking, they probably deserve to be kicked. It makes me worry about all kinds of things. I worry about the blowback because it’s always friends and family left to pick up the pieces and do the defending. It’s a moral dilemma but I’ve made the call so here we are.
This concerns the life and death of a 30-year-old Australian woman, called Jessica Ainscough, who was known as the Wellness Warrior. Images and video of Ainscough always showed her full of life, and the picture of health. But reality told a very different story. She may be called the Wellness Warrior but Jessica Ainscough was extremely unwell. She suffered from Epithelioid sarcoma, an incredibly rare, slow-growing cancer, in her case, first diagnosed in 2008. When I talk about rare form of cancer, the incidence, is in the order of 0.1 to 0.4 per million. It’s primarily a tumor that affects young adults, and it nearly always appears on the upper extremities, and wide surgical excision (which is doctor speak for amputation) is the only known effective treatment. It also tends to be a lethargic or lazy form of cancer, the antithesis of aggressive and fast growing. Patients diagnosed with Epithelioid sarcoma, have a ten year survival rate of 61%, but for patients aged between 17 and 30 years, in other words, just like Jessica Ainscough, the survival rate is much higher, about 72%. So that’s good news? Right? Well actually no it isn’t. Survival depends on treatment. And in this case the treatment is on par with the illness. Maybe, it’s even worse. The first line of treatment recommended consists of a very disfiguring amputation that in reality is more like a forequarter amputation. It’s an amputation that involves removing not just the arm, but the entire shoulder joint and the shoulder blade. It would have left Ainscough, without an arm, and a shoulder as well. It’s a seldom-performed operation and a wretched choice to be forced to make, unpalatable and disfiguring surgery. But, if it’s the difference between living and dying what choice do you have? Well, as it turns out, there are choices and there are choices. Ainscough made a number of choices. One of them, was choosing not to have the surgery. And, no surprises, making that choice meant living with the consequences. Without surgery, five-year survival rates drop alarmingly to 35 percent and ten-year survival, to 33 percent. As surgical oncologist and blogger, David Gorski, wrote so succinctly: “Jess Ainscough had a shot, one shot. She didn’t take it. What saddens me even more is that I can understand why she didn’t take it, as, through a horrible quirk of fate, her one shot involved incredibly disfiguring surgery and the loss of her arm.”
Ainscough would later write that she had prepared herself mentally to undergo the surgery, but doctors came to her at the last minute with an alternative, which was to do, what is known as isolated limb perfusion. According to the medical experts this is a technique sometimes used for soft tissue sarcomas of a limb or multifocal melanoma that can’t be removed without amputation to destroy the tumor. As the name implies, the limb is isolated from the body’s circulatory system and infused with very extremely high toxic doses of chemotherapy. The dose of chemotherapy is so high if it leaked back into the rest of the body’s circulation, the consequences could be catastrophic. Isolated limb perfusion can result in seemingly near miraculous results, and apparently that was the case for Ainscough. Unfortunately, the tumours tend to recur, and again that’s exactly what happened to Ainscough about a year later, which led to doctors recommending an amputation of her arm at the shoulder again.It was at that point that Ainscough rejected that option and became the Wellness Warrior. But, in assuming that title, Ainscough made a number of decisions that would be life changing in the truest sense of the words.
She put a stop to conventional medical treatment of her cancer in favour of Gerson therapy. A lot could be said about Gerson therapy but probably less is more. First of all, it claims to be able to cure cancer without a single shred of scientific evidence to prove or verify that claim. Gerson therapy involves eating extreme amounts of fruit and vegetables and undergoing up to six coffee enemas a day. Advocates of the therapy claim it allows the body to heal itself by boosting the immune system and removing “toxins”, despite there being no evidence that most cancer is caused by specific toxins or poisons in the body, or that these toxins can be flushed out by diet and coffee enemas, or even that a healing immune response exists, that if stimulated in this manner, could seek out and kill cancer cells. Emertius Professor John Dwyer from the University of New South Wales Medical School says coffee enemas are one of the worst forms of treatment because they can cause deadly bowel perforations. Gerson therapy also advocates the consumption of clay. Yes clay, to “detoxify the body.” This is what Ainscough wrote: “ When we eat clay, the positively charged toxins are attracted by the negatively charged edges of the clay mineral. An exchange reaction occurs where the clay swaps its ions for those of the other substance. Electrically satisfied, it holds the toxin in suspension until the body can eliminate both.”
If you think it sounds like arrant nonsense that’s because it is. Gerson therapy is many things. It is also mega expensive. Its clinic itemizes the charges for undergoing the therapy, which include a two week stay at a cost of US$11,000, travel expenses not included. Then you add the cost of the special juicer you must buy for US$2400, organic produce for one month US$750-$1200. In fact they recommend buying a second refrigerator just so you can store the large amounts of fruit vegetables and other supplements needed for the treatment.
The young, likeable, media savvy Jess Ainscough became the poster child for Gerson therapy. She wrote books, she appeared on television, made videos on Youtube explaining how to administer coffee enemas. She sold cookbooks and cooking supplies all the while extolling the virtues and curative properties of Gerson therapy and listing in detail all of various supplements she took as part of the treatment.
When she began Gerson therapy this is what she wrote:
“Some of you might think the list (of supplements) is a bit extreme, but I assure you that it is totally manageable. It’s nowhere near as much of a pain in the ass to get through as the medicine cabinet full of pills and potions I was taking prior to Gerson. I swear, as soon as we heard that a supplement had anti-cancer properties, I was all over it. I’ve taken everything from seacucumbers to bovine cartilage. This list is like a trip to the beach in comparison. The supplements a Gerson patient must take generally varies to suit the individual. But all the medications are designed to support the diet therapy by increasing the energy capacity of the cell and by increasing the rate of detoxification. “
But by the end of 2014, Jessica Ainscough’s health was deteriorating. She wrote this in a blog post:
“When I left you …….to begin a period of self-care hibernation, my plan was to get my health back in tip top shape and then spend some time creating some awesome new stuff for you. The reality, however, is that I’ve spent the whole time focused on my health. For the last few months, I’ve been pretty much bedridden. Let me fill you in on what’s been going on with me … This year absolutely brought me to my knees. I’ve been challenged, frightened, and cracked open in ways I never had before. For the first time in my almost seven year journey with cancer, this year I’ve been really unwell. I’ve lived with cancer since 2008 and for most of those years my condition was totally stable. I’ve had scans to detect what’s going on in my body, and I can report that the disease is still contained to my left arm and shoulder, however I do have a big fungating tumour mass in that shoulder that’s causing me dramas. Over 10 months of non-stop bleeding from the armpit has rendered me really weak (and uncomfortable) and as a result I’ve had no choice but to stop absolutely everything and rest. “
There was also the strong indication that she had finally returned to conventional cancer treatment. She wrote: “ I believe that as a result of my willingness to stop controlling my healing path and surrender to whatever the universe has up its sleeves to help me , I’ve attracted the most amazing healing team. I’m working with an oncologist who is kind, caring and non-judgemental – completely unlike any of the specialists I worked with in the early days of my journey. When we are open and in a state of surrender, the right people/situations/tools will appear. Final decisions and plans are now in process and I’ll keep you in the loop in the New Year.”
As I said at the start, I never wanted this to sound like I am attacking Jessica Ainscough. On the contrary I admire her. I think she was incredibly brave and courageous. I understand her desperation. And I am very sad that she is dead. There is also absolutely nothing wrong with cancer patients seeking alternative treatments so long as the treatment is in addition to what conventional medicine has to offer. In other words having both.
Ian Olver, the head of the Sansom Institute at the University of South Australia, says most people with cancer try alternative treatments, but the danger is when they become the replacement for conventional treatment. “Even if something has been reported in the press as working for someone, the critical figures are, will it work for 1 in 10 people, 1 in 100 or 1 in 1000, and that’s what evidence-based medicine is about,” Olver says. “In our health system you can basically be treated in the public system without a great outlay [of money], but sometimes they ask you to pay hundreds of dollars a week for alternative therapies”.
Jessica Ainscough was the poster child for Gerson therapy. I take no pleasure or satisfaction from saying she was also the poster child for why it doesn’t work.
Ainscough’s father released a statement on behalf of the family, which is how Jessica Ainscough should be remembered: “I’m so proud of my beautiful daughter for her achievements, style, grace, sincerity and affection. We are deeply appreciative of all the love and support coming in from around the world.”