‘A Journey Into Light’?  Psychiatric Drug Promotion And The Marketing Of Madness by Dina Poursanidou and Lou Rawcliffe

Dina’s voice…
Last week, as part of carrying out research into women’s mental health at  Manchester University, a colleague and I visited  a Medium Secure Unit  for women in the North West for a meeting to discuss some training for mental health nurses on the sexual and reproductive health of  women  accessing  psychiatric  care.
Secure mental health services are defined as ‘specialist services providing treatment for adults with mental disorders including personality disorders that mean that they are at significant risk of harming themselves or others. In such services, patients are detained under the Mental Health Act 1983/2007 and many, but not all, will be convicted offenders. In this context, ‘secure’ relates to the range of physical, relational and procedural measures put in place to ensure the provision of a safe and secure environment in which to deliver treatment.

There are three levels of secure mental health care: High, Medium and Low. The purpose of security measures is to ensure the safety of patients and the public, to prevent escape and absconding and reduce the likelihood of patients failing to return from agreed periods of leave. Medium Secure Services  cater for people who present a significant risk of harming themselves or others. Many patients will have a history of offending and some will have been transferred from prison or from the courts to receive inpatient treatment’ (http://webarchive.nationalarchives.gov.uk).
 
In light of the above  definition, the Medium Secure Unit we visited provides mental health care to particularly vulnerable women. What struck me when we were approaching the Unit was the very tall and thick wired fence surrounding the main building (an old, rather grim looking building) and its small yards, which brought about in me a nauseous sense of  approaching a prison -no doubt, the tall and thick wired fence was part of the  physical  security measures…I was rather surprised to see that the interior of the building was not as old and grim looking; it was  certainly  lighter, possibly refurbished, and I especially noticed the bright and colourful paintings  that decorated the walls, beautiful paintings made by the women service users and apparently a number of them  award  winning.
As we were taken to the room for our meeting, I could not help noticing that every single door was locked and was closing securely behind us – part of the physical security measures again, I thought. And before we could actually enter the Unit, at the reception, we were asked whether we had any of a long list of Contraband items on us, which we would have to hand in and collect on our way out. Chewing gum and blue tack were on the Contraband list together with mobile phones and sharp items – apparently the women service users could use the chewing gum and blue tack to create molds for making keys and escaping!
We met with a Nursing Manager and had a discussion with him for over an hour. He came across as a warm, gentle and caring guy, with a lot of experience in secure mental health services for women, and very keen to make our sexual and reproductive health training with his nursing staff happen. He also told us that he had 3 daughters, which may  explain the  fact  that  he was clearly sensitised to and  comfortable with discussing issues bearing on the sexual and reproductive health needs of  women.

When our meeting finished and on our way out, I noticed a big pile of booklets in a bookcase in a corner of the meeting room. Looking through the booklets (booklets for service users on how to contribute to their care plan, I think), I found a DVD entitled  ‘A Journey into Light’.
I  immediately thought that it was one of those DVDs that talk about  journeys of spiritual awakening and enlightenment  through practices such as relaxation, meditation and yoga. I nearly  pictured the women service users  in the Unit benefiting from relaxation, meditation and yoga sessions. I also recalled seeing a painting by Peter Waddell, a  historical painting of a Masonic Temple, with the same title, i.e.  ‘Journey Into Light’…

My daydream was interrupted rather abruptly when I noticed the two labels and the logo on the top right corner of the DVD case:

My heart sank… What I naively took to be a DVD about  a  journey of spiritual awakening and enlightenment  was a DVD that was  sponsored  and produced by Novartis, the pharmaceutical company, to ‘educate ™ professionals and promote Closaril (clozapine), a psychiatric drug!  In the  British National Formulary (BNF),  Closaril (clozapine)  is referred to as ‘an anti-psychotic medication used for the treatment of  schizophrenia in patients unresponsive to, or intolerant of, other (conventional) anti-psychotic  drugs’ (www.medicinescomplete.com/mc/bnf).
 

(www.cchrint.org)

When I realised what the  ‘Journey into Light’    DVD was, I felt a surge of anger, frustration and cynicism coming up,  and turning to the Nursing Manager, I asked (in a tone of voice that undoubtedly betrayed my feelings) whilst  pointing to the DVD  ‘What kind of Journey into Light is this, then?’  I think the Manager was taken aback by my question and he asked me whether I was against the use of  psychiatric  medication or something along those lines. I responded that I, too, was on very serious psychiatric medication, i.e. Lithium, a highly toxic drug. I guess I felt so angry and frustrated and cynical at the time that I was most probably incapable of expressing a coherent and balanced view on the complex and contested issue of psychiatric medication. Important to note here that in most occasions I  am  capable of doing so…
I recall that the Manager went on to tell me how he had seen  ‘miraculous effects‘ of Clozaril (clozapine) on some women service users in his Unit. I responded that I did not doubt that some women would have benefited from Clozaril therapy. But I could also not help  thinking  that – sadly- even the Nursing Manager in question, an experienced mental health professional who spoke about the  vulnerable  women service users in his Unit  with a great deal of care, consideration and sensitivity, appeared to have been seduced by Novartis’ ˜educational ™ (i.e. marketing)  material on Clozaril.  My colleague then indicated that it was time to go.
On the way to my  colleague’s  car I vented all my anger, frustration and cynicism about the  ‘Journey into Light’    DVD.  My colleague turned to me and said “ jokingly and I guess in an attempt to make light of the situation and diffuse my anger- that perhaps  ‘the Light ™ on the DVD title referred to the powerful white light that people are supposed to encounter and immerse in just before they die! In hindsight, my colleague ™s observation, ironically, contained some truth. In 1974, 8 patients in Finland who were taking clozapine in conjunction with a variety of other drugs died as a result of  agranulocytosis.
Agranulocytocis  is  an acute condition involving a severe and dangerous  lowered  white blood cell  count,  representing  a severe lack of one major class of infection-fighting white blood cells, so people with this condition are at very high risk of serious infections due to their  suppressed immune system  (http://en.wikipedia.org). The death of the 8 patients in Finland led to the withdrawal of clozapine in those countries where it was already marketed and the suspension of clinical trials elsewhere. However, following  the publication of findings demonstrating clozapine’s efficacy in  a significant proportion of ‘treatment-resistant’ patients with a diagnosis of schizophrenia in 1988,  clozapine was remarketed in 1990 and progressively became part of common clinical practice.
Why did I feel this surge of anger, frustration and cynicism in relation to the Novartis-sponsored DVD  ‘A Journey into Light’  concerning Clozaril (clozapine), then?    What were these strong feelings about –  especially considering that Clozaril can apparently have ‘miraculous effects’ on people with a diagnosis of schizopherenia who have been  unresponsive to, or intolerant of, other  anti-psychotic  drugs? What were these  strong  feelings about when Clozaril seems to represent the very last chance, the very last resort for a number of very distressed and despairing people?
On  www.clozaril.com  I read that patients treated with Clozaril have reported  positive effects and improvements including  : i) improved ability to concentrate; ii) recovered ability to enjoy previous activity; iii) improved relationships; iv) improved ability to participate in counselling, vocational training, or other activities of daily life; v) improved ability to live independently; and vi) a  decrease in suicidal behaviour. On the same website I read that ‘thanks to CLOZARIL, a great many people whose lives were once seriously affected by schizophrenia are now leading more independent and more productive lives’.

So, how come I felt so angry, frustrated and cynical in  relation  to material that promotes Clozaril- i.e. what seems to be a ‘wonder drug’ for a number of very distressed and despairing people? After all, I can relate very closely to the rather  frightening  notion of a psychiatric drug representing the very last chance, the very last resort, a ‘wonder drug’ for somebody acutely despairing…

back in  January 2010 I was prescribed Lithium for my ‘treatment-resistant’ severe and enduring  depression having been unresponsive to a series of anti-depressants for one and a half years…the message I was given  back then was that Lithium was essentially my very last chance, my very last resort following persistent but unsuccessful attempts to  lift my mood, enhance my motivation and alleviate my desperation with different anti-depressants for so long…my very last chance, my very last resort before ECT, I guess…  scary…  and I suppose Lithium may have possibly proved  ‘a wonder drug’ for me, as my GP put it once…
since I started taking Lithium  in January 2010, I saw dramatic positive changes in my mood,  my level of motivation and interest in life, my  ability  to concentrate and use my  cognitive skills, my ability  to live  independently and my ability to return to work…
the beginnings of my recovery seemed to coincide -temporally at least- with being prescribed Lithium…of course I could not say for  certain  whether there is a causal relationship between being on Lithium  and my recovery- given that the latter is a complex and multi-faceted process- but I suppose there must be some kind of  association between the two…association that  I am grateful for…grateful in spite of Lithium’s high toxicity and very serious side effects, which  necessitate very regular monitoring through blood tests every 3 months…a high price to pay for having one’s desperation alleviated…  
In light of  my personal history of ‘last chance/last resort’ psychiatric medication,  how  could  I bring myself to feel so angry and cynical in  relation  to material promoting a  psychiatric  drug that seems  to represent the very last chance, the very last resort for a number of very vulnerable,  frightened and despairing ‘treatment  -resistant’ people with experiences of psychosis? I have not been on Closaril but I have taken other anti-psychotics – such as Olanzapine and Aripiprazole-so I am very familiar with the terror and profound anguish associated with ˜psychotic symptoms ™. How could I bring myself to be so blatantly cynical?  
I think it was the very title of Novartis’ promotional DVD on Clozaril, i.e. ‘A Journey into Light’,  that gave rise to my anger, frustration and cynicism. In this DVD the consumption of a pharmaceutical product (Clozaril) seems to represent a  means  of achieving an encounter with ‘the Light’, a promise of some dramatic transportation from the dark depths of schizophrenia to an  enlightened, more independent and more productive, in other words transformed, life. The use of  emotive  language here, that is the reference to ‘Journey’ and ‘Light’ with their spiritual, almost transcendental  connotations, is particularly seductive. Seductive to the extent that one can easily forget that this is the perversely clever language of advertising that a pharmaceutical company is using for what I feel is the rather sinister manipulation of the hopes and fears of very vulnerable and distressed people who are desperate for the alleviation of their tormenting ‘psychotic symptoms’…the language of the marketing of ˜mental diseases ™ [1] and of psychiatric drugs as their presumed ‘rectifying’ agents…

(www.cchr.org)

Seduced by emotive references to ‘Journey’ and ‘Light’ with  their spiritual, almost transcendental connotations,  as in the case of Novartis’ DVD on Clozaril,  one can easily forget  the  association that seems to exist currently between the ruthlessly competitive  marketing  of psychiatric drugs by the Big Pharma and  what Joanna Moncrieff, a founding member of the UK Critical Psychiatry Network, refers to  as  ‘the epidemic of psychotropic drug  prescribing ™  [2]. To illustrate this ‘epidemic’ – 49 million Americans are reported as being on prescribed psychiatric drugs (www.cchrint.org/2012/07/18/with-49-million-americans-on-psychiatric-drugs-renowned-psychiatrist-issues-call-for-psychiatric-drug-withdrawal),  whereas for the UK  increasing rates of prescriptions for  psychiatric  drugs, especially antidepressants  and antipsychotics,  have  been documented for the  period 1998-2010  [3].  Seduced by the perversely clever language of marketing, one can  easily forget that  ‘psychiatric drugs are a big profit making business and the psychiatric/pharmaceutical industry is making a killing -$84 billion per year’  (www.cchrint.org/psychiatric-disorders).

(www.cchrint.org)

 
Furthermore, ‘while the illicit use of drugs is universally frowned upon, and considered a bad way for people to deal with their problems, psychiatric drugs are made out to be œgood  drugs, despite the fact that many are more addictive than cocaine or heroin, and  have side effects that rival such hardcore street drugs as LSD, heroin and crack cocaine’  (www.cchrint.org/psychiatric-disorders). At a conference on medication organised by the UK Soteria Network back in 2011, I heard Richard Bentall, the author of  ‘Doctoring  the Mind:  Why psychiatric treatments fail’ (2009, London, Penguin),  present a paper entitled ‘Antipsychotics: Too much given for too long to too many? ™.  He concluded that ‘Antipsychotics are undoubtedly a powerful tool for rapidly reducing psychotic symptoms,  but  they may work for only a minority of patients (10-15%)  and they have severe long-term side effects.
They are usually prescribed to everyone, often in irrationally high doses, whereas there is no evidence of a long-term benefit from their continuous use ™. In a similar vein, Toni Morrison and his colleagues, in an Editorial in the British Journal of Psychiatry in 2012, conclude that evidence regarding the overestimation of the efficacy of antipsychotics and the underestimation of their toxicity and long-term risks, as well as emerging data regarding alternative treatment options, suggests it may be time to reconsider whether everyone who meets the criteria for a ˜schizophrenia spectrum ™ diagnosis requires antipsychotics in order to recover [4].
In the case of  Clozaril (clozapine)  in particular, the British National Formulary (BNF) lists a range of  very serious and  even  potentially  fatal side effects:  vomiting, anorexia;  increased salivation that can lead to heavy drooling;  tachycardia (palpitations), ECG (Electrocardiography) changes, hypertension; muscle stiffness, feeling restless or unable to sit still; increased weight gain;  drowsiness, dizziness,  speech problems, tremor, seizures,  impaired temperature regulation leading to excessive sweating; urinary incontinence and retention;  lowered  white blood cell  count; blurred vision;  agranulocytosis  [5] (see above); hepatitis,  jaundice, pancreatitis; cardiological problems including  potentially fatal myocarditis (inflammation of the  heart muscle); agitation, confusion, delirium; pneumonia, anaemia; and  intestinal obstruction – among others (www.medicinescomplete.com/mc/bnf).

(www.antipsychiatry.org/drugs.htm)

I  am wondering how the  Novartis DVD on Clozaril deals with the very serious and even potentially fatal side effects of the medication mentioned above…how these side effects, which can  compromise the quality of people’s lives so gravely  and even endanger life itself, are reconciled with the apparent  promised encounter with the ‘Light’, with what could be perceived as a  promise of some dramatic transportation from the dark depths of schizophrenia to an  enlightened, more independent and more productive,  to a transformed life- as discussed above. What kind of ‘Journey into Light’ is this when the price to pay for embarking on the journey (through the consumption of Clozaril) is so high and there is so much potential risk involved?

Lou’s voice

I met Lou through a research project on independent mental health advocacy back in 2010 and we have kept in touch since mainly through email. Lou uses mental health services and she has first-hand experience of taking Clozaril.

After I had written my blog post about the Novartis ™ DVD on Clozaril (http://www.asylumonline.net/a-journey-into-light-psychiatric-drug-promotion-and-the-marketing-of-madness), I sent Lou the following email with my blog post as an attachment:
Hi, Lou
Hope you are well. I was wondering whether you could have a look at the attached document when you have a minute?  The attached document is a narrative piece I wrote about ‘Psychiatric drug promotion and the marketing of madness’ with a focus on Clozaril.  I remember that you have first-hand experience of taking Clozaril, so your thoughts and reactions to my piece would be invaluable. Trying to write about difficult mental health stuff from both sides of a very high fence, so to speak, is very challenging, I find, and of course there are no easy answers just a great deal of ambivalence…a constant dialogue with myself with endless ‘Yes, but’ positions…until my brain hurts. Many thanks for your help, Dina
 

Lou responded with the email below:

Hi, Dina. Hope all well with you.
Just thought I would forward a few notes on my experience with Clozaril following on from the ‘Journey of Light’ DVD  and your paper:
I too am outraged at the idea that through Clozaril a person can see the bright light The DVD  commented on the ‘miraculous effects’ of Clozaril and for some this is the case. However, my own experience is that Clozaril ‘dampens’ the experience of psychosis and the accompanying torment but does not stop the distressing symptoms as it was hoped it would Clozaril is used as a ‘last ditched’ attempt so where do you go from there when other anti-psychotics have not worked and you pin your hopes on Clozaril and symptoms persist? The fact that Clozaril affects your longevity was not discussed before titration of the drug And how do you make a decision with this knowledge knowing that it is unbearable to exist with severe paranoid psychosis but that the medication you take to help with this will actually shorten your life? Also the need for regular blood tests and the intensely monitored titration onto the drug raises alarm bells concerning toxicity With all these factors in front of you, where do you place the issue of â ˜patient choice in this? In conclusion, meds alone have not solely contributed to my recovery, nor is recovery about being symptom free. A focus on holistic care and understanding affecting every aspect of life has enabled me to have hope and belief that knowledge and change are possible.  Hope this is helpful, Lou

A couple of weeks later, Lou shared with me the following thoughts:

I have found thinking about the issues around Clozaril and the promotion of psychiatric drugs you touch on in your blog really empowering My conclusion is that multinational pharmaceutical industries have promoted Clozaril as a ‘wonder drug’ when – from my own experience- all it does is to some extent ‘numb’ some of the intrusive thoughts and voices. Considering that myself and many other people have been encouraged to believe Closaril is a ‘last resort and therefore we pinned our hopes on it, there is no doubt that this promotion is manipulative.

Other means of coping and leading a busy fulfilling life have been vital in terms of my recovery. Through the Hearing Voices Group in Lancaster I have found support and understanding without having to ‘explain’ symptoms and how they are affecting me.  I believe in a holistic approach to wellbeing and live a life which enables me to manage my mood through self motivation and interest, as well as through fulfilling ‘occupation’ currently as a volunteer in various service user projects in Lancashire. Socially, I am lucky to have a supportive partner and a small group of friends who have been with me from the start of this journey. I was labelled as ‘dual diagnosis’ given that for many years I used alcohol to cope with life and with voices. 4 years ago I quit drinking.  The fact that I deal with my voices in a non-destructive way and am managing to cope with their intrusiveness whilst sober has boosted my self-esteem. The fact that I have learnt to socialise without alcohol has also had a big positive impact on my confidence. I have reached a point where I have my own personal understanding of my ‘voices’ and how I relate to them as an individual. Finally, at the University of Central Lancashire in Preston I have been involved with a service user/carer group called COMENSUS. As a group we have devised and delivered lectures and seminars, and marked assignments for student nurses and social workers. In terms of sharing experience and influencing change this has been an important part of my recovery and self-empowerment over the last 3 years.

Concluding remarks

This is how I initially summarised my concluding thoughts on the Novartis DVD:
‘A Journey into Light’…an infuriatingly seductive and highly misleading title of an â ˜educational (i.e. advertising) tool  produced by the Big Pharma as part of its campaign  for the marketing of madness and the promotion of  psychiatric drugs…a profit making ruthless campaign  that capitalises shamelessly on the rather sinister manipulation of the hopes and fears of very vulnerable and acutely distressed people who are desperate for the alleviation of their tormenting ‘psychosis .
However, through my conversations with Lou I became aware that my above mentioned remarks reflect a markedly pessimistic message, a message that can induce profound hopelessness, where the hopes of acutely distressed people are manipulated by the  drug  industry and very often ultimately crushed and betrayed. On the other hand, there are other (alternative) treatments for people with a diagnosis of schizophrenia apart from medication, for example psychotherapy or creative therapies. These treatments have a holistic focus and are likely to help people find and maintain hope in the possibility of change and recovery. A recovery which is not necessarily synonymous to being symptom free, as Lou put it in her email, but which is â ˜a deeply personal process of changing one s attitudes, values, feelings, goals, skills, and/or roles; a way of living a satisfying, hopeful, and contributing life even with limitations caused by illness (Anthony as cited by Holttum, 2012, p. 169) [6].
 
Notes
[1] Documentary in 2 parts entitled The Antidepressant Era (2001) produced by D. Dallas; Based on The Antidepressant Era by D. Healey (1999), Harvard University Press (http://vimeo.com/56866688; http://vimeo.com/56863015)
[2]  Moncrieff, J. (2006) â ˜Psychiatric drug promotion and the politics of neoliberalism ,  The British Journal of Psychiatry, 188:301-302
[3]  Ilyas, S. and Moncrieff, J. (2012) â ˜Trends in prescriptions and costs of drugs  for mental disorders in England, 1998â “2010 ,  The British Journal of Psychiatry,  200:393-398
[4]  Morrison, A. P., Hutton, P., Shiers, D. et al., (2012) â ˜Antipsychotics: is it time to introduce patient choice? The British Journal of Psychiatry, 201:83-84
[5]  Potentially fatal agranulocytosis has been reported, which  necessitates very regular monitoring of blood counts; in addition, patients on Clozaril should report immediately symptoms of infection, especially influenza-like illness (www.medicinescomplete.com/mc/bnf)
[6] Holttum, S. (2012), Research watch: recovery as a personal journey: how mental health services are trying to support it , Mental Health and Social Inclusion, 16, 4:169 – 174
Note: a shorter version of this article appeared first in Dina Poursanidou s blog (Dina s blog) on  Asylum, The magazine for democratic psychiatry (http://www.asylumonline.net/a-journey-into-light-psychiatric-drug-promotion-and-the-marketing-of-madness)