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.
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.
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.
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.
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.
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.