‘I can cure your cancer’
Kiwis like Jake Bailey are targeted by snake oil salesmen, with little protection. Why is the Government taking so long to act? Katie Kenny reports.
Jake Bailey still receives messages from strangers promising to cure his cancer. The 22-year-old earned global acclaim in November 2015, for an inspirational prize-giving speech he gave as Christchurch Boys’ High head boy, a week after being diagnosed with Burkitt’s non-Hodgkin’s lymphoma.
While rapidly fatal if left untreated, the rare cancer is generally curable with prompt, intensive chemotherapy.
Since being in remission since January 2016, Bailey, now based on Australia’s Gold Coast, is a fulltime speaker.
At events, audience members come up to him asking, among other things, whether governments are hiding a cure for cancer. When Bailey gave his viral speech, he was on his third day of treatment, emaciated and off-colour. Today, training for his second Coast to Coast, the 243-kilometre multisport race across the width of the South Island, he’s the picture of health.
To someone with cancer, or to someone whose loved one has cancer, he’s a marvel. People ask for his secret and whether he can recommend alternative therapies or diets. ‘‘I always recommend they do exactly what their doctor tells them to do, because that’s what worked for me,’’ he says.
But some turn away from conventional medicine entirely, dying, perhaps needlessly, in the process.
These conversations often leave him feeling irate and desolate. ‘‘As time goes on I lean more towards irate. It’s frustrating to understand there are lives lost unnecessarily. You have to wonder how that can happen in New Zealand.’’
The terms complementary and alternative medicine generally describe medical products or practices that aren’t standard medical care. When used alongside conventional medicine, they’re considered complementary, and when used instead of conventional medicine, they’re considered alternative.
Marcia Angell, a former editor of the New England
Journal of Medicine, considered the phrases misleading. ‘‘There cannot be two kinds of medicine – conventional and alternative,’’ she has written.
‘‘There is only medicine that has been adequately tested and medicine that has not, medicine that works and medicine that may or may not work. Once a treatment has been tested rigorously, it no longer matters whether it was considered alternative at the outset.’’
In New Zealand, complementary and alternative medicine is largely unregulated. The only exceptions are chiropractic and osteopathy, which are covered by the Health Practitioners Competence Assurance Act 2003. Practitioner groups are expected to monitor the unregulated parts of the industry with their own codes of conduct and ethics.
The situation is fraught and has been for decades. As patients increasingly turn to the internet and social media for health advice, it’s getting worse.
Society’s lack of scientific literacy is partly to blame, says biologist and secondary school teacher Dr Alison Campbell. ‘‘We need to be better equipping students with the ability to assess information critically.’’
An honorary fellow at Waikato University, she also describes herself as a science communicator. A lot of scientists ignore social media, she says. ‘‘They can do without the constant sniping and complaints to their employers. You have to have thick skin. But it’s the role of universities to be the critic and conscience of society. Not everyone enjoys that role, but I do.’’
She’s become known for countering misinformation about vaccines. As she watched the rate of measles infection and deaths climb in Samoa recently, she continued to call out those pushing anti-vaccine messages via social media, highlighting their lack of relevant qualifications and logic.
They suck in those who don’t understand how science and research works by peddling certainty and simplicity, says Campbell. ‘‘Science is neither.’’
Dr Shaun Holt, who has degrees in medicine and pharmacy and has written books on natural health, agrees.
With Laurence Grieg, Holt cofounded HoneyLab, where he develops medical products from honey and bee venom.
He’s passionate about showing that some natural products can be useful, while criticising those that don’t work or are dangerous.
‘‘It’s really hard for people to tell science from pseudoscience,’’ he says. Outdated and poorly enforced laws and regulations compound the problem.
‘‘The laws in New Zealand around natural products are so bad you’re allowed to say things that aren’t true but you can’t say things that are true.’’
He’s referring to the fact that natural-product labels can’t state or imply a therapeutic purpose unless the products have been approved as medicines. However, they can display information pertaining to intended therapeutic use. ‘‘I could say my toenail clippings could help with digestive issues. But I can’t say fish oil reduces cholesterol. Whereas in countries such as Canada you can say anything as long as you can back it up.’’
The Medicines Act 1981, which ensures medicines and related products used in New Zealand are safe and effective, is in the process of being repealed and replaced by the Therapeutic Products Bill. Natural health products, rongoa¯ Ma¯ ori (traditional healing) and dietary supplements will remain outside its scope.
The Natural Health and
Supplementary Products Bill, introduced in 2011, was intended to fill gaps in the regulation of natural health products, including requiring evidence of efficacy. However, it was scrapped before its third reading, in 2017.
Years later, the Government is still considering its approach to regulating natural health products, according to the Ministry of Health. ‘‘The Government [. . .] has requested advice on this matter from officials,’’ a statement said.
‘‘In addition to this, the Government is progressing the
Therapeutic Products Bill to regulate medicines and medical devices. Work on progressing regulation of natural health products is important to ensure that these lower-risk products are not inadvertently captured under the [bill], which is focused on higher risk medicines and medical devices.’’
In the meantime, products such as Te Kiri Gold, an untested cancer cure once backed by Sir Colin Meads, continue to be sold. The chlorine-based product is still available online, for $100 per two-litre container, despite the doctor who’s been promoting it being struck off for carrying out trials without approval. ‘‘It’s the same stuff you’d use to clean a swimming pool,’’ Holt says.
Misleading claims about health products could, or should, be policed by the Advertising Standards Authority (ASA) and its Therapeutic and Health Advertising Code, or the Fair Trading Act, which stipulates: ‘‘A person must not, in trade, make an unsubstantiated representation.’’
But the ASA relies on complaints and, even if it upholds one, has no power to enforce rulings. And the Fair Trading Act tends to focus on bigger issues that could affect the country’s reputation.
‘‘Our existing legislation isn’t being policed adequately,’’ says Mark Honeychurch, of New Zealand Skeptics, a non-profit organisation that aims to promote critical thinking.
Alternative medicines have always existed and in recent decades even grown in popularity. This growth has coincided with an erosion of trust in key institutions such as governments, organised religion, banks and news media. In 1966, nearly three-quarters of Americans said they had great confidence in medical leaders. Today, that figure is about 34 per cent.
Another study, published in the British Medical Journal, found people trust celebrities with their health, even when it might cause them harm.
There’s little comparable New Zealand data, but a 2019 survey on trust by Colmar Brunton and Victoria University’s Institute for Governance and Policy Studies found medical practitioners and the police remained, consistently, the most trusted groups in society. Least trusted were bloggers.
Given that social media influencers are bloggers with, well, influence, why do we turn to them for health advice?
Dr Michelle Dickinson, a New Zealand science educator and nanotechnologist, says: ‘‘It’s very difficult for a layperson to know who has written the content of material online and determine whether or not they have professional expertise in the field. When it comes to regulation, monitoring online content is much more difficult than print.
‘‘Social media is a great platform to make money through selling treatments offered as an alternative to mainstream medicine.’’
Usually done in a way that’s ‘‘emotive and convincing’’, it can be hard for conventional medicine to compete, given doctors don’t market the drugs they prescribe and ‘‘usually assume the patient knows they are giving them the best treatment available according to the scientific evidence’’.
Emma Espiner, a final-year medical student at the University of Auckland with a background in public health communications and media, says evidenced-based health services are often so stretched and difficult to access that alternative therapists can ‘‘step into those gaps simply by being there’’.
‘‘I’ve observed among my family members that they enjoy being able to pay to see an iridologist or reflexologist or whatever is currently trendy, and spend an hour or more with that person talking about whatever ails them.’’
The most recent, reliable data on Kiwis’ use of alternative health practitioners is 2007’s NZ Health Survey. It found visits to alternative practitioners made up a small proportion of all visits to health practitioners.
Massage therapists were the most popular, with 10 per cent of Kiwis having seen one in the previous 12 months, followed by chiropractors (5 per cent).
In Playing God, poet and GP Glenn Colquhoun writes, as part of a poem entitled, ‘‘A note of warning to patients when all else fails’’:
Sometimes the thermometer will not rise.
The plaster will not stick.
The stitches cannot hold.
The heart conducts a normal ECG.
Then I have to ask you what to do Which is what you might have wanted all along.
In 2011, Colquhoun established the Horowhenua Youth Health Service, where he continues to work in adolescent medicine. The young people he treats come from small towns, and while many follow celebrities on social media, ‘‘they’re pretty good at drawing a line between that celebrity’s world, and Levin’’.
They have faith in mainstream medicine, he says, but too often the system lets them down. ‘‘If there’s a functioning, welcoming, informative health system, kids will use it and listen to it.
‘‘But we don’t have a connecting, loving, functional health system, so people invariably go elsewhere.
‘‘It’s a challenge to the health system to be more accessible to young people, and people in small towns.’’
If a patient enjoys seeing an alternative therapist – provided the therapy isn’t doing harm or replacing evidence-based treatment – Colquhoun doesn’t see the problem.
‘‘Human beings are medicine to human beings,’’ he says, meaning we often underestimate the positive implications of a practitioner’s touch, time and attitude. Just the right kind of touch, for example, can lower blood pressure, heart rate and stress levels, according to research from the Touch Research Institute at the University of Miami’s Miller School of Medicine.
‘‘I see a lot of kids with mental health issues and quite frankly if they form a better relationship with an acupuncturist then I’m going to try that,’’ Colquhoun says. ‘‘ . . . A lot of the time these things work because of relationships. And the placebo effect is a real and measured effect.’’
Jake Bailey knows all too well the mainstream health system is flawed. Doctors repeatedly sent him home when he presented with symptoms that were, unbeknown to him and everyone else, caused by cancer.
Through his mother’s persistence, he eventually got a diagnosis and treatment.
‘‘What allows me to still have supreme confidence in medicine is an underlying belief in the good faith of people. I don’t think it’s reasonable to assume a doctor wouldn’t want the best for their patient,’’ he says.
‘‘The health system can’t guarantee survival or safety but it provides a better chance than alternative medicine. And at least there’s accountability in it. I have no doubt many alternative practitioners also have the best of intentions, but they don’t have the knowledge or expertise.’’
After chemotherapy, he was left with nerve damage in his legs, and struggling to walk. Doctors told him there was nothing they could do to improve his chances of recovery.
So with their support, he tried naturopathy (supplements such as folic acid and vitamin B) and acupuncture. ‘‘From a psychological perspective, it was better than doing nothing. It gave me some semblance of control, when everything else felt out of my control.’’
He’s not sure whether his body would have healed on its own, or whether the additional therapies helped, but his legs improved. ‘‘All I can really do is promote trust [in conventional medicine]. Sure, do what you want, but go with recognised treatment as well. Whatever you do, don’t forfeit your chance for lifesaving, medical treatment.’’
But the Government also needs to step up to protect society’s most vulnerable, he says. ‘‘A measure of society is how well it treats its most vulnerable. I think anyone who can be swayed through desperation or misinformation into the use of alternative medicine, as opposed to conventional medicine, is someone who falls into that category.
‘‘There are undoubtedly people losing their lives as a result of this, and there’s really no greater indication that something needs to be done.’’