A quiet man
A few months ago Martin Johnson retired as the Director of Britain’s Thalidomide Trust. Under his stewardship, UK Thalidomiders have become a major force for global drug safety.
In a world where Brands are everything and even the BMJ seems to have sacrificed scientific content for good branding, the Thalidomiders adapted the British Army’s Special Air Services SAS acronym and became the SAS – Short Arm Squad. But their mission is just the opposite to that of Sense about Science. See The Girl who was not heard when she Cried Wolf and Doctor Munchausen and Sense about Science.
Before joining the Trust, Martin served for 21 years in the Royal Air Force, as a pilot on Vulcan and Canberra aircraft, and later in administrative roles and as a NATO intelligence specialist. After leaving the RAF he worked as a Financial and Management Adviser, mainly with small companies, and then for six years as a Hospice CEO, during which time he oversaw the expansion of adult care and the development of a children’s hospice.
He became the Director of the Thalidomide Trust in 2000. Since then, the Trust has secured changes in UK law to assist its beneficiaries, and increased the funds it is able to distribute each year from £5.3 million to over £30 million, as a result of successful investment management, negotiations with corporate stakeholders and parliamentary campaigns.
During recent years he has been conducting historical research into the origins of Thalidomide and the background of Chemie-Grunenthal who made it. This had led to a book which in essence stems from efforts to develop a European support network for Thalidomiders. The hope still is that it will be published in 2014 but new discoveries are happening all the time.
Through Martin I met some of the most extraordinary people I have ever met. Here are some of the things he might tell you about them and the lessons he has learnt from them if you had a chance to have a coffee with him.
The life force
Thalidomide is the prototypical Pharma story. Where Chemie-Grunenthal once defended their drug to the end, seemingly unheeding of the human consequences, GSK now defend their products in a similar fashion. William McBride’s efforts to bring thalidomide’s hazards to light almost created the field of teratology but his later attempts to do the same for doxylamine spectacularly backfired putting the pharmaceutical companies back in the driving seat and leading to his completely unjustified vilification.
The Thalidomide story contains an element that other Drug Traffic Accident storiesall contain to some extent but none to quite the same extent. This element is almost impossible to capture because it lies in the fact that the most striking feature of the Thalidomide story is the Thalidomiders themselves.
To be in the company of Thalidomiders is to be seduced, transfixed, manipulated and generally aware that you are in presence of a life force.
They are no angels. They make mistakes in relationships, are likely petty and difficult to live with in lots of ways but in their company you see exuberance and wisdom rather than damaged goods. You see that being human is about more than having the right shaped body or the latest accessory.
Recovery
There is a great deal of debate these days about Recovery from illnesses. There is a growing debate in these columns about recovery from drug induced problems like Post-SSRI Sexual Dysfunction (PSSD).
The Thalidomiders throw an extraordinary light on Recovery in that they have clearly recovered. What their story brings out is that the body is the machine in which life happens but the point behind life is about manifesting the spirit rather than looking after the body.
If we compare the interaction between body and spirit in illness to the interaction between the TV and a program being shown on an old style TV, when it’s difficult to make out what the program is about, treating the body can be like tweaking the knobs to try and improve the sound or the contrast of the picture. Medicines tweak the bodily knobs in this fashion. But while some bodily interventions are critical – without them there will be no program – if you are trying to work out what the program is about, enhancing the quality of the signal is more important that adjusting the contrast.
How do we enhance the quality of the signal? It looks like disasters can do this – but this seems like a difficult way to go. In some sense listening to yourself is critical.
From magicians to magic
In health there is a temptation to listen to others. As the ancients realised when they called them sorcerers, pharmakoi, it’s difficult not to listen to and believe in magicians – doctors – or figures of authority.
In our day, pharmaceutical industry propaganda has persuaded many of us to believe in magical potions rather than magicians.
Through guidelines and other subterfuges, industry have stripped the magic away from the doctor, making doctors interchangeable, and selling the message that the magic comes from the potion – the chemical.
With wisdom it’s possible to use poisons to bring about cures and this was the art of medicine – a dangerous art. The medical arts rode the boundary between the magical, the miraculous and the mysterious. Religion has always been wary of this. There was a recognition that a good healer was to be treasured while there was an equal emphasis that sorcerers messed with people’s heads.
Our senses tell us that bodily things are real and tempt us to put more weight on factors that are tangible and sensible rather than things that aren’t. But too great a focus of the tangible and the sensible risks a loss of spirit.
There is an extraordinarily difficult balance to maintain here. Too much of a focus on ‘us’ to the neglect of the body makes for boring, monomanic, and humourless people.
The body and it’s limitations are one of the fundamental sources of humor.
Being well to some extent must mean having hope for the future. Those who are well in this sense are possibly less likely to take tablets than those who aren’t.
The sacraments
In our day pills are becoming more and more sacramental. In this world, when things go wrong the problem is always down to our failure to understand rather than the company’s product.
The wonders of these sacraments are sold on paper as glossy as that of the bible. They are sold on the basis of belief rather than evidence or science – there is no more access to the data behind the claims being made than is made for matters of belief. The claims must simply be believed or companies will set inquisitors like Dave Nutt, Guy Goodwin or Rory Collins loose to hound the unbelievers. Anyone who dares question the orthodoxy immediately becomes a heretic.
In this process the drug bureaucrats – FDA, EMA or MHRA – assume a Magisterial role like that of the Catholic Church. These are the people who take it upon themselves to sanction the statements that can be made.
There was an uproar when the Church involved itself in science in the cases of Galileo and Darwin. There should be a similar uproar when business regulators extraordinarily take to making scientific pronouncements – but so far there hasn’t been.
The state of healthcare in this regard has dramatically worsened in recent years. It seems that we are moving from a theocratic state through democracy to a pharmocracy.
The role of government?
Government increasingly takes it upon itself – aided by organizations like Sense about Science – to protect the pharmaceutical industry from the people for several reasons. First, it’s interested in the tax take it can get from any manufacturer. Second, it’s interested in the level of employment and prospects for future employment in strategic industries.
There are others genuinely interested in the health of the people who are open to being suckered by industry and government working with industry. Industry sell their products as ways to improve the health of the public and that they would be much better able to do so if there were less restrictions on their activities. This provides the basis for a coalition between many who would otherwise have no truck with industry and government – a coalition that industry can manipulate.
In this world, profound cynicism is called for. But occasionally there are glimmers of a basis for hope, and sometimes these glimmers come from disasters.
g says
Surprised not to see a comment posted on here yet – I remember the devastation Thalidomide caused way back then- the sadness and disbelief. I think pharmaceutical companies and Doctors should be acutely aware of the ability of all medicines to produce such horrors to humanity. It doesn’t matter if it is to one person or many.
g says
Have just discovered on Wiki that my mother was expecting me in the very year Thalidomide became a new drug being prescribed – 1957 . She didn’t take or need any drugs- but my word we are all so frighteningly close to being a victim of presciption drug damage –
Doctors should think very carefully before putting any pregnant woman onto a drug – I wouldn’t even drink tea or coffee when I was pregnant, no blue cheese or raw eggs and not even paracetamol when I had a cold – realise not everyone can do without drugs but Doctors have a huge responsibility to ensure minimal and safe treatments are given to a pregnant woman. FGS!
annie says
I was the picture of health striding amongst the hills with my dog the day before I was due to give birth. Having a baby was the most exciting event to ever have been thrown at me.
I just did what I always did. I met a couple of girl hill walkers and, as I always say what seems to be the first thing in my head, we got chatting, and I said, I am having a baby tomorrow…much excitement, the hills are alive with the sound of…
Fast forward nine years and my child’s life was wrecked, her University potential was wrecked, her social standing was wrecked – all because her fun loving mother swallowed a man-made pill which, whatever, it contained, had the capacity to induce weeks of systematic agony.
I had to be a big girl, but, this child was too young to lose her innocence and childhood to meddling, misfits, who happened to sit in the kingdom of a surgery.
When this child emigrated to Canada, at 18, and, after a year announced she had bought a Greyhound ticket to travel for three days from Ontario to Vancouver, I thought, good on you, but, it would be less of an ordeal to fly. I would pay her ticket. Her new ranch mates also offered to pay, but, no, I am doing this, she said, I am paying my own way……
So, she gets off the bus in Calgary and as she is striking, she talks to everyone, like her mother does, and gets in a super sports car with a handsome bloke who drops her off at an Aunt’s in Vancouver. Said, Aunt, married to a Canadian Mountie, who had expected a trip to the bus station had, a moment……
So, the point of this, narrative, is, to say, we all worry about our children and, of course, they have to learn from their own mistakes….but, when, swallowing a pill, and, nobody, learns from their mistakes, then it’s in the lap of the gods…..
My girl is now a big girl, couragious, brave and gone. She dabbles in philosophy, she likes sayings and posts them to her friends on Facebook. I am a secret spy…..:) Her embodiment is her richness, no other of her hundreds of ‘friends’ come close.
The biggest question, I think we are asking, is why do doctors, psychiatrists, whoever, is prescribing, prefer to think the worst of us as opposed to the best…….
Was the doctor, there, when ‘the dad’ arrived with a grapefruit and a packet of large peanuts and a book about a perilous ship.. he drove for hours with his own duvet under his arm and at least a nice doctor gave him his room. He was an air ambulance pilot, after all. Journeys are second nature…
You could say I was lucky, you could say, you are all still here, you could ask why I feel humbled, you could say Rxisk.org is a godsend.
But, the man who never let me down is broken. I am also broken. He has never stopped sending me money in ten years, he has left me our house in his will. But, in ten years I have never reponded because the hut with the boat rope hanging, next to our freezer, will always be there.
And, nobody, will ever understand that.
Marian Vickers says
As a DES daughter have always been interested in Thalidomide story – in fact, DES has often been referred to as the “silent” or “hidden” Thalidomide, as adverse health outcomes of DES not readily visible.
Here is excellent article, interesting in terms of Thalidomide, DES and, more recently, Gardasil !
“In our day pills are becoming more and more sacramental. In this world, when things go wrong the problem is always down to our failure to understand rather than the company’s product.
The wonders of these sacraments are sold on paper as glossy as that of the bible. They are sold on the basis of belief rather than evidence or science – there is no more access to the data behind the claims being made than is made for matters of belief. The claims must simply be believed or companies will set inquisitors … loose to hound the unbelievers. Anyone who dares question the orthodoxy immediately becomes a heretic.
There was an uproar when the Church involved itself in science in the cases of Galileo and Darwin. There should be a similar uproar when business regulators extraordinarily take to making scientific pronouncements – but so far there hasn’t been.
The state of healthcare in this regard has dramatically worsened in recent years. It seems that we are moving from a theocratic state through democracy to a pharmocracy.”
DES Action Australia is now on Facebook!