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BEAT THE BENZOS CAMPAIGN
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Professor David Cohen
Co-Author with Dr Peter Breggin of
Your Drug May Be Your Problem
Thank you very much Dr Peart and the organisers of the committee for inviting me, a very gracious invitation, to be present at this important meeting. I was given the mandate of putting into context and outlining some perspectives of all the different sessions that have taken place over the last two days. I cannot do justice to all that has been said. However, I will try to... I have taken some brief notes during every session, some snippets; sometimes it's just a phrase, sometimes it's a couple of words, sometimes it's an idea and these have inspired some reflections from my perspective.
Let me tell you a few words about my perspective. Firstly I am a social scientist, so I'm trained in sociology and I am also a clinician and I was trained in clinical social work.
I have conducted a few studies on perspectives of users of benzodiazepines and physicians who prescribe benzodiazepines on the same issues. For example, how do users and physicians talk about, define, understand, a side effect, the concept of a side effect, what is a side effect, how do they communicate these to each other, how do they negotiate prescriptions and so forth?
I've also helped about 80 individuals to withdraw from benzodiazepines and possibly about 200 to withdraw from other drugs like antidepressants, stimulants for children and neuroleptic drugs. So I have some background and have also written a book with Dr Peter Breggin called Your Drug May Be Your Problem: how and why to stop taking psychiatric drugs, which outlines a withdrawal process for all psychiatric drugs.
With this perspective I want to say that my comments will try to range from the molecular level to the multinational level, because that is in fact the range of comments we've heard so far. We've heard things about the cellular and molecular impacts of benzodiazepines on GABA receptors, for example, and we've also learned about the power of multinational corporations. What I'm saying is that we are dealing with an extremely complex issue that has many parts, many levels.
Charles Medawar spoke of our collective folly, a paralysis, an incompetence in drug regulatory systems and the practice of medicine which was arrogant and with an inability to learn from its mistakes – a lack of accountability. He spoke of self-interest on a grand scale and he called it a collective folly when he tried to describe how we got to where we are today. I would call that a 'collective intoxication'. That is a metaphor which I think is appropriate.
When we are intoxicated the first faculties to go are the highest faculties – the most superior faculties are the first to go and usually these are the faculties of monitoring what is happening to ourselves. Critical monitoring of what is going on with your body and your mind is probably the first thing to go. When you've had a little too much to drink you don't know what you're doing, you don't quite know what's going on and others have to tell you. In fact you cannot drive: "No, I'm really good, I can do it" and others have to say: "No, you can't do it". In fact your insistence on saying: "I can do it" could be taken as a sign that you cannot do it, when others can see that you cannot do it.
I'm saying here that there is a lack of superior judgment of what the medical profession was doing. In other words, it seems that [the medical profession] in many ways has lost its ethical faculties. What are these ethical faculties? Siding with patients, being democratic, insisting on providing consent... (I'll come back to that). An honest monitoring of one's own practice – (and the analogy again – to critical monitoring of one's bodily and mental faculties when you are intoxicated).
Professor Ashton described the effects of benzodiazepines on the brain. I quote: "a profound disturbance in brain function which is responsible for both therapeutic and adverse effects of benzodiazepines". What is this disturbance of brain function? She said that, as knowledge currently conceptualises it, that benzodiazepines affect three families of GABA receptors (Gamma Amino Butyric Acid). GABA is the natural inhibitor of brain function. We stimulate that natural inhibitor of brain function and put the brain in a sort of suspended animation for a while and so reduce the neural firings between synapses in the brain. That same statement could be made, in many ways, for all psychiatric drugs – not simply benzodiazepines.
The point here is that the distinction between an adverse effect and a main or therapeutic effect is not based on pharmacology, it is based on sociology, let me tell you what I mean. What is the definition of an adverse effect? When we're talking about psychiatric or psychotropic drugs I've looked at countless dictionaries but I have never once found a definition of what an adverse effect was, except something that was not desirable, something that was not wanted. Not necessarily something that you could identify pharmcologically – that the drug hits some receptors and that causes the pleasurable, the desired effects and that it's other receptors that cause the unpleasant effects. The drug has a spectrum of actions which, in some contexts, is based on what people want and don't want. This gets interpreted as sometimes being desirable, sometimes being undesirable. What is often desirable in the beginning is undesirable after years of use. What is desirable when you want to go to sleep is undesirable when you want to go to work. There is no distinction in science and pharmacology in the realm of psychiatric drugs, between adverse and main effects – that's possibly a profound issue.
I am saying that it depends on what people want and it depends on the context in which drugs are used. Today some effects that were highly valued a few years ago are no longer seen as so valuable – it depends on the context.
Dr Alan Jones said: "I have never been properly informed" – for all the years that he prescribed benzodiazepines. I believe that in the early 90s when he was called upon to work in the case [litigation against manufacturers] that we've heard about, he began to form a distinct awareness that something was wrong with benzodiazepines. Yet at the other side we have heard Anna de Jonge and Dr Peart rattle off dozens of citations from the 1960s and the 1970s. Joan Gadsby gave us citations from the early 70s and 80s of a long list of adverse effects of the drugs – dependence, withdrawal, all these things and yet we have people saying: "I was never informed". This points to the very intricate, intimate alliance between medicine, the pharmaceutical industry and the watchdog agencies which act more like pussycats than watchdogs. So altogether, as Dr Peart pointed out: "they are in bed together" and the interests of patients are not looked at. Again this points to things that will have to be done about medical education and so forth.
Anna de Jonge said at one point: "The best thing is never to start it", meaning if you want to avoid adverse reactions, if you want to avoid dependence, for those of you who have gone out to seek drugs, the best thing is never to start drugs in the first place. Easier said than done, but, here's the thing: why do we go to doctors? why do we go to doctors when we feel pain in the soul? Because we want drugs – that's what doctors do, they give drugs, that's a lot, if not almost everything they do. They can't make us richer, they can't give us friends, they do not find us jobs – they give us drugs, when we want drugs we go to see doctors. I think this has to be underlined, this has to be stressed – I hope I'm not stressing it too much!
What I am suggesting is that there are other ways to deal with psychological distress, many other ways. There are organised therapies, (some more studied than others), like cognitive behavioural interventions and so forth. There are all kinds of non-drug alternatives to insomnia, anxiety, depression, psychosis. There are a lot of alternatives, if only we had more resources, more willpower and more ideological commitment to invest in them.
This brings me to the question of ideology. Gwenda Canard told us that the fight is not just about benzodiazepines, it's about larger issues. It's true, every single class of psychotropic drugs produce withdrawal symptoms, every single one: neuroleptics, anti-parkinsonians (prescribed to counteract some of the effects of neuroleptics), lithium, anti-convulsants, (prescribed in so-called bi-polar disorders), stimulants, all the antidepressants – the older ones, the newer ones, the mixed ones, the atypical ones, tranquillisers – all psychotropic drugs produce withdrawal symptoms.
Chapter 9 of our book [Your Drug May Be Your Problem] is just a compendium of all the withdrawal reactions from all psychotropic drugs. The emotional reactions, the anxiety types of reactions, depressive types of reactions and psychotic types of reactions – some groups of drugs seem more likely to induce certain reactions than others. Neuroleptics and lithium seem more likely to induce psychotic type withdrawal reactions. Benzodiazepines, stimulants and antidepressants seem more likely to induce depressive types of reactions and so forth.
Any psychiatric drug on the market today can produce profound withdrawal effects. It's not been studied with control studies for all the drugs, but case reports with more or less validity exist for practically every single drug on the market today. Some with challenge studies, of withdrawing the drug, seeing the reaction go away and re-introducing, [the drug] seeing the reaction disappear, withdrawing again, seeing the reaction appear again, with firm grounds for saying this is a withdrawal-induced phenomena. This is not a relapse or some other kind of distress. So the fight is not just about benzodiazepines – it's about a lot of drugs.
Where I come from in the US, and Canada (where I lived for 12 years), we have 1 in 7 boys between the age of 5 and 14 on stimulants, not just Ritalin (methylphenidate), but pure amphetamines such as Aderol and so forth. These are not drugs about which we can say: "Well, we're not sure about their effects". These are the amphetamines that were banned in most developed and Asian countries for 25 years and they are coming back and given to a huge proportion of children including toddlers. The proportion of children between 1 and 5 years old on Ritalin, Clonidine (which used to be a drug prescribed for heart problems, because it has sedative effects), we have tens of thousands of toddlers, younger than 3 and 4 years old on stimulants on a daily basis, starting at a very early age.
We seem to have disregarded everything we've learned about the risks of drug abuse, starting exposure to psychotropic drugs at an early age and mixing this with other risk factors. we seem to have completely disregarded all of this, total amnesia by the medical profession about the effects of amphetamines and the epidemics of abuse. We are now saying: "Oh now it's fine, it's a very well studied drug and it's under prescription" and so on. So in the fight it's not just about benzodiazepines in my view.
Rational use of drugs is hoped for and may be part of the solution – rational use of drugs. Charles Medawar spoke of that at some point. Let me submit to you – I hope I'm not being too radical here – there can never be anything rational about the use of psychiatric drugs for psychological distress. I will tell you why. I don't believe that they should never be used, that's not the issue, the issue is that using drugs for distress is a basic, instinctive and natural, age-old pattern. When you want to comfort someone in pain, besides touch, you give them something to swallow. You do that to a child, it's a very natural thing to do – it's a sign of caring, when you don't know what to do, you give them something so they'll eat it. Maybe it's psychodynamic, I don't know, the fact is, I believe it's almost instinctive – there's nothing rational about it, there's nothing sophisticated, you don't need expertise. Everybody has done it with every single kind of substance throughout the ages. We've always had drugs with us for pain, for discomfort, for loss of meaning and we will always have them with us, we can't get rid of them, they'll always be with us.
This instinctive natural urge has been elevated in many ways by biological psychiatry into an ideology. I'll go so far as to classify it as a cult, it's a cult of drug use, where there is a pill behind every single ill. If it produces pain, we have another pill for the pain produced by the first pill and so on and so forth. I have seen children, 7 years old, with 5 different psychiatric drugs. It usually begins with Ritalin, then the Ritalin causes some kind of sleep disturbance and they add a benzodiazepine sometimes, or Imovane or Zopiclone for sleep. Something happens, the child is very withdrawn and depressed, as a withdrawal reaction to stimulants. Then they're put on an antidepressant and the other drugs remain. As a result of that, the child becomes obsessive and compulsive and manic and agitated. Then they [doctors] say, well, the child is bi-polar or obsessive-compulsive. Another SSRI is prescribed – then there is a psychotic reaction – the child becomes extremely agitated and then lithium or maybe another neuroleptic is prescribed. That child is then taking five drugs.
This is going on more and more in North America and these are not isolated incidents. So we really have to question, in a frontal way, what are we doing. How do we conceive of suffering? What do we consider to be normal? etc. etc.
If the use of drugs cannot be rational, what should underlie it and under what basis should I be able to get a benzodiazepine from my GP if I want one? Consent, consent, consent, consent. That means I should be able to give informed consent and that is the foundation for the sane practice of medicine. More consent, less science – consent because information is at the basis of consent. To the extent that I am informed, to the extent that my physician is informed, then we can have a relationship where we can possibly have consent. Though, if any one of those conditions has not occurred, regardless of the science, regardless of the facts that have been known for 20 or 30 years – if there is no consent, there is no rational basis for any prescription. What helps consent is information throughout the system – (I'll come to that when I can speak about the Internet).
I was moved by a comment that Pam Armstrong from CITA made. She said she uses auricular acupuncture, she touches (or pricks) the patients. That's interesting because if there's one thing that is very rarely done in psychiatric medicine, it's touching the patient – we don't touch them. We have developed very elaborate rationalisations, some more valid than others, as to why we don't touch patients. A lot of it stems from abusing (mostly) women patients, there is a good reason sometimes not to touch people. But we have in fact moved away from the patients and instead of touching them, we drug them – we drug them, but we wont touch them. We will say: "I don't want to touch my patient and give them an affectionate pat on the arm", because it might not be taken too well, but "I don't mind giving them five drugs, I don't mind seeing them for 20 minutes and deciding that they'll be on two drugs, or five drugs for the next fifty years – but I won't touch them."
So you see in a sense there are such paradoxes, such ironies, that we will not touch [patients] but we will drug them and sometimes drugs can damage irreversibly. So we have to be open to doing things a little differently, we have to rethink our rationalisations for not touching. Some people need touch, they need to be touched, they need to be massaged and that comes into some of the withdrawal strategies.
Ian Singleton discussed the intricacies of counselling a person in withdrawal. I've done this many times; it is an extremely intricate, difficult process. It needs a lot of sensitivity, you need your ears open all the time, you need commitment and for these very reasons I believe physicians are least qualified to be the primary helpers for withdrawal. They are too busy, they see too many people, they don't have the time. I'm not sure how practice is in this country, but in the US, in Canada more and more, the average consultation is about six minutes. The end of it is marked by a prescription, so that there's really no time to understand and so on. So counselling people who are withdrawing from psychiatric drugs, to the extent that it's desirable, is a long-lasting project.
Professor Stefan Borg's findings, especially the patterns of withdrawal, if you remember Ian Singleton's anecdotal descriptions, are identical to Professor Borg's patterns of what happens during the withdrawal process. An increase in distress soon after for some, followed by a gradual decrease, or – 'everything's OK' and then a large increase towards the end [of withdrawal symptoms]. That was echoed in great measure by the findings of Professor Borg. This again confirms that benzodiazepine withdrawal is a long-lasting enterprise, very intricate and very subtle.
Withdrawal is a complex issue. We've heard about relapse, rebound, novel withdrawal symptoms. We've heard of neonate withdrawal from Susan Bibby, which is a very clear unambiguous statement. There's nothing to interpret in neonate withdrawal. Of course there is a social judgement there, there is room for subjective judgement as to what's going on. It is a clear unambiguous statement – this is not a pre-existing psychiatric condition in a child that is now emerging. Neonate withdrawal means withdrawal. It's been shown with benzodiazepines, with most antidepressants, with neuroleptics and with anti-parkinsonian drugs. Lithium produces a classic 'floppy baby syndrome'.
Despite these clear, unambiguous biological findings there is a great variability – some people do not go through any withdrawal, some people do not experience anything. Therefore it's immeasurable, it's imperceptible. Similarly with reactions, we've heard of incredible reactions from Dr Joppart, from Judge Bertelsmann, from Joan Gadsby, these incredible losses of memory, loss of consciousness, paradoxical reactions – hard to understand, yet these occur. Small doses can produce large effects – beware of someone telling you "you're only taking a small dose, I was only taking 1 mg but you were taking 7.5 mgs". There's great individual variability, some people are more susceptible to caffeine for example.
The thing is, it can be done, it can be done. People do withdraw successfully with proper support and go on to live very productive, drug free lives for many many years. I have seen it, I have helped it and countless people here I'm sure and around the world can testify to that. It can be done, so I would hope that not everybody despairs about the prospect. For some people though, it can be excruciatingly difficult.
I wanted to bring the point up again, about drug 'set and setting'. That's what we understand about the effects of psychotropic drugs – not just the function of the drug on the body, it's your mental set and the setting. The setting is what you read in the newspapers, your history, everything – that's what produces a drug effect, not just its ingestion and digestion by your alimentary canal.
One of the things Dr Seivewright said in his informative talk – he made the distinction that benzodiazepines are 'desirable', that's why there is a black market. Let's face it, let's not kid ourselves, there is a huge black market in them, there has always been, because people like to take them, they're pleasant, they're like alcohol in appeal. The short-term effects on memory, on cognition, on physical balance, on that 'mellow' anaesthesia feeling, the long-term effects, the withdrawal effects – like alcohol. In many ways indistinguishable from alcohol and that's why we use them for alcohol withdrawal. Alcohol is not just a terrible drug to society despite its huge cost, it's also the only major social lubricant that we have. it has created untold, fantastic positive effects for millions of individuals who use it in ways that they can manage – so again we always have to look at both sides of the issue.
That's why we have to be careful about how we turn the problem again into the legal arena. That means the stickers saying for instance: "Tranquillisers Are More Addictive Than Heroin". Of course somebody can say: "Well, I guess heroin's not that addictive after all". That's what we said about tobacco, the Surgeon General of the US said in two reports: "Nicotine is more addictive than heroin or cocaine". It's been stated many times, but what does that really say? It says sometimes the lessons of history are not just for our opponents, they're for us too, we have a long history of criminalising lots of substances. We have persecuted the users, we have to be careful what we may do with benzodiazepines. The fact is the majority of users of benzodiazepines have not been damaged, it remains a fact. As concerned as I am about the situation we have to be careful what we do with benzodiazepines because of what they have done to a minority of users.
The last thing is the role of the Internet. We need to validate consumer's perspectives on their drug use and the Internet is probably the only easily accessible way. The Internet manages to take the perspective of the patient away from a transcribed interview, or responses to questions posed by a doctor, in a structured situation. If the doctor or the researcher wanted to ask these questions in the first place, the Internet takes that perspective and puts it out there for everyone to see, directly and internationally. Within weeks of a new drug appearing on the market, users can provide their own product report on a new drug and the Internet is making this possible. I think it has to be looked at in an extremely positive light. It is changing the construction of the knowledge of psychotropic drugs from the monopoly of a few professionals, into something much more democratic. I think that is a very welcome development. Thank you very much.
Professor David Cohen, Beat the Benzos Conference, Croydon, November 2nd, 2000
With thanks to Sue Bibby for the transcription of Professor David Cohen's Speech
DAVID COHEN, Ph.D.
Dr. Cohen is Professor and Chair of the Doctoral Program in Social Work at Florida International University, Miami, USA, and has previously taught at University of Montreal, Canada. Dr. Cohen holds a Ph.D. in Social Welfare from the University of California at Berkeley. He frequently serves as a consultant to consumer groups and health and legal organisations in Canada, France, and the United States on psychiatric drugs and adverse effect monitoring programmes. He has given numerous workshops on withdrawal from psychiatric drugs and has testified before state legislatures and in court proceedings, as well as scientific consensus conferences, on adverse effects of antipsychotic drugs and social determinants of psychiatric drug use. Dr. Cohen is also in the part-time private practice of psychotherapy.
Dr. Cohen is Editor of Ethical Human Sciences and Services, Associate Editor of Journal of Mind and Behaviour, and Consulting Editor for Social Work. He has authored scientific articles and book chapters, in English and French, including reviews in Encyclopaedia of Psychology (USA/UK) and Medical-Surgical Encyclopaedia (France). He is co-author of the French-language Critical Handbook of Psychiatric Drugs (1995), and of the recent Your Drug May Be Your Problem: How and Why to Stop Taking Psychiatric Medications (2000). He has also edited or co-edited five books and special journal issues on critical psychiatry, tardive dyskinesia, medicalisation, and social aspects of psychiatric drug use.
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