Extreme rationalists in medical science often lambast “quacks” for “preying” on those suffering from chronic incurable illness by offering untested alternative treatments. According to them we should listen to the “professionals” and use only approved drugs, otherwise we are asking for trouble and probably putting money in the pockets of pseudo-doctors.
Meanwhile UK medical professionals have been loudly criticising the body in charge of NHS drug approval, NICE, for only allowing a drug called rituximab to be given to rheumatoid arthritis (RA) patients as a last resort once joint damage has already occurred.
Following a favourable clinical trial, the hope-inducing headline on the BBC website was “Drug slows early stage arthritis”, and the chief executive of the National Rheumatoid Arthritis Society moaned that doctors were 'not allowed to use this (drug)...when patients would benefit the most'.
But in May this year there was another, less appealing, headline about rituximab on a press release direct from US medical experts:”Popular cancer drug linked to often fatal 'brain eating' virus”.
The viral brain infection known as PML is fast moving as it destroys the tissues, causes forgetfulness and moodswings before killing the person after just two months.
The discovery that at least 57 patients taking rituximab had conclusively died of PML in a decade was unearthed by an important international collaboration of physicians called RADAR which spots any possible dangers caused by drugs after they are licensed.
And this discovery is not a one-off scare. Rituximab is a relatively new type of drug called a monoclonal antibody which acts on the body's immune processes. So far two other monoclonal antibodies have also been taken off the US shelves for their association with the brain eating virus.
Rituximab is mostly used as a cancer drug for lymphoma patients but is also licensed in the US for RA. It is also used 'off label' by doctors for lupus, multiple sclerosis and auto-immune anaemia.
It is in these patients that the danger has become clearer since, in cancer patients, loss of brain function and death within months may not seem unexpected.
But now there are three known deaths of RA and lupus patients on rituximab who had suddenly developed depression or dementia symptoms caused by the virus eating away the brain.
Dr Bennett of RADAR comments that “it was especially unusual for patients with autoimmune anaemia-like illnesses who have not received a large number of other drugs”.
I feel extremely glad that an organisation like RADAR exists. Following RADAR's urgent investigations Dr Bennett found that physicians had been reluctant to report cases of the virus in patients taking rituximab because the forms for reporting adverse drug events involve “a lot of work”. So the cases had gone unnoticed for over a decade.
So why is the National Rheumatoid Arthritis Society pushing this drug towards people who are suffering from milder forms of RA, which is not fatal like cancer? As Dr Bennett says:”People have been lulled in to a false sense of security that this drug is harmless and that it only does good things. No drug is perfect.”
Could it be that doctors (reassured by official stamps of approval) have prescribed drugs that may accelerate fatal illness, rather than restore life? Surely not?
Monday, 27 July 2009
Thursday, 9 July 2009
In bed in the dark of night but not asleep.
This can be a curse for those with chronic low level illness or constant pain. My personal suggestion to help relieve this is listening to the radio (using an earpiece if you don't sleep alone!)
To my delight when I was tuning in overnight two weeks ago I got to hear the world-renowned geneticist Jane Peterson on the incredible Human Microbiome Project which will investigate the links between bacteria and illness.
The format of the BBC World Service programme The Forum was perfect for the weaving discussion about the trillions of microorganisms that live on or in our bodies.
The project will link microbiologists worldwide as they plan to genetically analyse and name every new microbe they find!
All this is possible because of new techniques for identifying hard-to-detect bacteria such as mycoplasma. Previous in-vitro techniques were far too outdated to detect such intelligent microbes which naturally thrive in-vivo, that is, in a living being.
Intelligent? I hear you scoffing at that description of an organism as small as a fungal spore. Of course, we all believe the tag-line, don't we? - Kills 99% of all known germs! Gotcha microbe!
But the Human Microbiome Project is about identifying bacteria that we have never known! And they are intelligent critters.
One of the points Dr Peterson made was that we have only just begun to understand how bacteria in human hosts live in "microbial communities". Medical science is "a little bit behind" she admitted, in comparison to environmental science which already understands the interconnectiveness of microbes.
For example, donors of swab samples to studies within the project will be given clear instructions on which soap to use on their skin. Absolutely not any of those anti-microbial products! Why? Because some bacteria adore clean skin. And some microbes are more persistent than others. If you kill one species then a stronger one will take their place.
Which makes me wonder...why is it that when I have taken a short course of antibiotics, say for a chest infection, then my digestive tract reacts very badly, or I get other pains?
The NHS - even if it is "a little bit behind" - is surely right to shift towards a policy of specifically targeted antibiotic use. Hopefully we will soon know the reason why in much more detail.
The Human Microbiome Project has just announced $42 million funding for studies in to microbes involved in ulcerative colitis, Crohn's Disease, psoriasis, bacterial vaginosis, obesity, sexually transmitted diseases, esophageal cancer, paediatric irritable bowel syndrome and more. Quite a lot of interesting investigations to be going on with, I think.