The idea is that by encouraging people to challenge claims made about products, services, lifestyle choices and policies:
- the public could feel empowered to question claims they see in future
- people and companies should expect to be asked to back up their claims
- we should start to see fewer false/dangerous/baseless claims.
Examples of what exactly people have asked for evidence of can be found here.
However, this week I am particularly interested in sharing a new part of the campaign with you:
SAS have introduced a new focus: claims to cure what medicine cannot – the campaign is now asking people to ask for the evidence behind cancer cure claims; including drugs, diets, and other proposed treatments.
The I’ve got nothing to lose by trying it guide has been updated and doesn’t just cover claims of cancer cures, but also other chronic and incurable conditions such as diabetes and autism spectrum disorders. A lot of people are affected by these moneymaking scams, in a variety of awful ways.
Sense About Science have gathered some patient stories to show what such claims can do to people, and my friend Laura also wrote for me about how annoying it is when often well-meaning people misunderstand her condition and suggest unproven treatments.
What’s the harm?
First, it denies what we know, in terms of medical science, about the condition. If there’s no cure, there’s no cure. There might never be, or perhaps we just don’t have the understand and/or technology to achieve it now. That’s not only damaging in terms of fostering mistrust of medicine, but also it could hinder research that might yield a cure. If people think there already is one and The Man is just hiding it, that could potentially impact available research resources like tissue donations and volunteers for clinical trials.
Second, it can pile guilt on parents, guardians and carers. Rumours spread that some cure exists – why haven’t you tried it?! Don’t you love your child? Don’t you want to try everything under the sun? That in turn puts pressure on the individuals with the conditions, who are told they should be getting better with x treatment, don’t, and might think it’s their fault.
Third, it can be dangerous – if not directly, then by encouraging people to give up effective treatments (in the case of alternative, rather than complementary, medicines).
Fourth, these things are often expensive. People can spend their life savings and raise huge amounts through charity donations to fund “miracle” treatments, especially if international travel is involved. This money could be far better spent, and it’s basically conning every person who donates, too – though that is not the desperate family’s fault of course.
Fifth and last in this list that springs to mind just now – it also costs people precious time, particularly in the cases of terminal illness (cancer especially). Chasing promises of cures around the globe can severely strain someone who is already suffering. It is sad that people will go to so much stressful effort when they could be spending their time and money doing things that celebrate their lives and the present, rather than trying in vain to alter the inevitable future when they will have no time left together at all.
What’s sadder is that people exist who value money and their sham business over the wellbeing of people suffering these problems in their lives, and that they will exploit those people – who seek hope and relief – for their own personal gain.
Bleachgate and Burzynski
Long-term readers will of course be aware that there are a couple of scammy cancer cures close to my heart: “Miracle/Master Mineral Solution” (MMS) and the Burzynski clinic in the USA.
MMS is essentially a bleach and was dreamt up as a panacea by a strange man called Jim Humble. Rhys Morgan and I tried to work out exactly what kind of person he might be by reading his “book”, and some friends even interviewed him – although he’s hiding out in the Dominican Republic, last I heard.
Unfortunately we never managed to come to a conclusion about Jim’s motives – Humble is an example of someone who could well have been entirely taken in by his own deception, believing himself to be some kind of medical messiah (he’s even set up his own church), with followers who will defend him with startling vehemence.
For some general background on Dr Stanislaw Burzynski, click away. Burzynski offers terminal cancer sufferers his own particular brand of miracle cure, mainly antineoplastons - chemicals synthesised by his clinic, based on some shaky research suggesting the urine of cancer patients was somehow lacking certain components.
I actually stopped being actively involved in the “anti-Burzynski” campaign because of some people’s inability to see who the real enemy was (the fraudulent cure-peddlers, rather than the swindled patients). Some friends have continued and made valuable contributions to the investigation, however.
For example, you might have heard of him on an episode of Panorama titled Cancer: Hope For Sale. For this programme, a number of skeptics and otherwise interested parties contributed information, which took a great deal of time and effort to compile.
These are by no means the only miracle cures out there, but they have made their way into my life in the last few years. Unfortunately they also make their way into the lives of people who are extremely vulnerable and that can be devastating.
Hopefully, equipping people with the kinds of questions they should be asking of anyone who starts claiming to be able to help them medically, without any legitimate qualification or scientific backing, will make some difference and prevent some suffering.
Josephine Jones has written about reporting illegal cancer cure claims.
Kat Arney at Cancer Research UK has written a guest post about the impacts of the “miracle cure” phenomenon.
Ben Quinn has written about the I’ve got nothing to lose by trying it guide for the Guardian.
The BMJ also have a piece on the guide (£).