During nearly 40 years as a freelance journalist, and particularly because I work in the health field, I have become inured to misinformation. I have banged my head against a wall more times than I care to remember regarding various health issues over the years.
One that stands out is the disrespect and disbelief that Linus Pauling was treated to for his revolutionary work on vitamin C. Even granting him a Nobel prize still didn’t change many people’s minds in the medical profession about the validity of his work.
When I first met Dr John Lee, the pioneer of bioidentical cream usage, many years ago I really found out what misinformation in the media was all about. No matter how many women reported positive effects, it was derided and when he was invited to speak to a meeting of his peers, doctors and consultants, I was appalled at how rudely he was treated.
It was meant to be a debate, and he bravely kept on but it was clear his audience had no interest in this ‘new’ field of bioidentical hormones and were actively hostile to it.
In those days I still clung to the belief that the medical profession – being intelligent beings – were surely above all that, but a wise and open-minded doctor friend told me it takes years for new ideas to take hold, and then more for them to be implemented.
This is nothing new
However it seems that putting a stick in the wheel of progress in the medical field is a very old game indeed. In an article published in the journal ‘Trials’, researchers at the German Institute for Quality and Efficiency in Health Care (and isn’t that a wonderful name) compiled over 60 examples illustrating how the dissemination of medical knowledge has been impeded.
I would not have thought that forceps were a particularly revolutionary, or threatening, invention. Indeed such a very simple instrument has been fundamental in saving many mothers’ and babies’ lives.
They were first developed by the Chamberlen brothers in England at the beginning of the 17th century and were very much a family secret as they used them themselves over three generations but kept them hidden from other obstetricians. Well of course this made them rich, famous, and sought-after, but at the same time women and babies were still dying elsewhere because the device was not made generally available.
The idea of profit is not a new one, and sadly this is not an isolated example. The German researchers found that no area of medicine was exempt: psychiatric disorders, pain, heart and circulatory disease, skin disease, cancer, and infectious diseases all provided other examples.
What this means in practice is that access to potentially life-saving drugs, vaccines and medical devices such as ultrasound has been at best delayed and at worst lost completely.
So how does this happen?
Concealment is common in many areas of business and the professions, but in science the phenomenon is called “publication bias,” which actually means bias through selective publication of information or research. In other words, choosing what, and when, to publish. This may mean that complete studies remain unpublished and only the more ‘favourable’ parts get out into the public domain.
For example, an analysis of 90 drugs that had been newly approved in the US showed that they had been tested in a total of 900 trials. Now we do not know what the outcome of those trials was because, even 5 years after approval, 60% of these studies were unpublished.
The other way the information is withheld is one that we are very familiar with from the world of politics, when only selected outcomes from studies are published. In other words we get only what the authors believe are the best bits and not those that might question their overall findings.
Modern research requires that you have to specify in a study protocol which outcomes you want to measure and how you are going to analyse them. Comparisons of protocols and journal articles of studies showed that in 40% to 60% of studies, results had either been completely omitted or analyses changed.
“In this way study results are often presented in a more positive way than is actually the case,” says Beate Wieseler, Deputy Head of the Drug Assessment Department who undertook this mammoth review. A mild statement but one that has often been borne out.
Who paid for it?
One area that I look at very closely when presented with research findings is who exactly paid for the research. In their paper, the German authors also cite an analysis in which 2000 studies on cancer topics were analysed according to sponsorship.
The proportion of published studies was extremely low: of the industry-sponsored studies, 94% were unpublished; however, even 86% of university-sponsored studies were also unpublished.
What this means in practice is that we not only get potential breakthroughs held back due to commercial interests, but we certainly know – and this is much more common – that bad news and reports of failure remain unpublished.
So this means you do not have full access to the range of information for new treatments or drugs that at worst may harm you and at best are ineffective. For example, researchers estimate that some drugs prescribed in the 1980s to prevent irregular heart beat cost tens of thousands of lives, because early signs of dangerous adverse effects were not published.
One examples of this was in the assessment of Reboxetine, a drug used to treat depression. The pharmaceutical company Pfizer only provided previously concealed studies after being subjected to public pressure.
In these previously unpublished studies, the results for Reboxetine were considerably worse than appeared to be the case in published studies. So this misinformation doesn’t just affect the end user, the patient, but also denies access to the most up-to-date and relevant information to your doctor.
Thomas Kaiser, Head of the Drug Assessment Department, put it in very clear language:
“In order to protect patients, we need legal regulations, so that the results of all clinical trials are published swiftly and completely.”
Hear hear say I, what do you think?
Happily as women have sought a more natural approach to menopause Dr Lee has been vindicated and we do now see a more open approach to the whole subject of bioidentical hormones.
However, it is always useful to check if you can who has sponsored the research and if they have an interest in the outcome – as is usually the case.
People often say that bioidentical hormones have no evidence to back their use, but this is simply not true. Many studies on bioidentical hormones have been published, but because progesterone cannot be patented so it does not attract attention from major companies who could then have a monopoly on it.
This means that the worldwide research that has been done is by non-commercial studies investigating aspects of how bioidentical hormones can be of benefit, particularly for breast cancer.
This is why progestins were developed to use instead of progesterone as they can be patented and therefore are profitable. This has been so successful that doctors themselves often refer to ‘progesterone’ when they mean the synthetic substitute a progestin, or progestogen as they are sometimes known.
You will find them in HRT as they were developed to protect women who had a hysterectomy from the effects of unopposed oestrogen. They do this less successfully than if they had used bioidentical natural progesterone which is naturally occurring in women to balance oestrogen and unlike the synthetic progestins is actually protective to reduce the risk from breast cancer, heart disease and strokes.
I read in a recent womens magazine their in-house doctor stating that the Mirena coil contains progesterone – but it contains the synthetic and they are associated with a number of side effects, unlike the natural hormone.
I believe you need to do some research, read plenty and trust your own instincts – which is pretty much what Dr Lee himself recommended. He always believed women would justify his belief in bioidentical hormones as they knew best what worked for their own bodies.