Taking an Entry Point: On Investigating the Psychiatric-Pharmaceutical Complex
There are various ways to analyze an institution like psychiatry. One of the most common is by mining examples. You might, for example, talk to few survivors who seem to embody what befalls most folk subject to psychiatric rule (a common research sampling strategy called by the unfortunate name “typical cases”; see Patton, 2000). Or you might pen a stirring phenomenological account based on your own experiences. All, without question, highly worthwhile.
A very different approach that I wish to demonstrate and would encourage other critics to consider employing now and then is choosing a single entry point—a moment where something feels wrong and which, for reasons that you may not yet fathom, appears to hold the promise of helping you open up the institution—and then seeing where it can lead you. This is a part of a method known as institutional ethnography (see Smith, 2006 and Smith and Turner, 2014). For the purposes of this article, I will give a simplified version and will introduce you to the bare beginnings of an inquiry—one that I found myself falling into but a couple of weeks back. The entry point is the arrival of a letter. I choose it partly because it is helpful as a demonstration, albeit also because it indeed unlocks a direction and modus operandi that it behooves us to be aware of.
In short, I arrived at my office to find a letter from the Centre for Addiction and Mental Health (CAMH)—a huge psychiatric hospital/research institute in the centre of Toronto. I was perplexed, for as a well known critic of CAMH and as someone who had recently forced an investigation into one of their research projects, I would have thought that I was the last person that they would want to interact with. I proceeded to open the letter. It was from the coordinator of a research project. The project was investigating the use of a “new treatment” for people “with anorexia” (You can see the letter in its entirely here). To quote some of the key passages, it states,
“I am writing you on behave [their typo] of Dr. Allan Kaplan regarding a treatment study for anorexia nervosa. We hope that this study could be a great referral source for you and offer an important supplement to the therapy you provide.”
It proceeds to say,
“We offer (1) weekly visits with a psychiatrist/study physician for participants; (2) a commitment to find appropriate follow up care for participants at the completion of the study…(3) a commitment to follow up with referring clinicians to ensure continuity of care.” It ends with contact information.
Even as I started to read, I was perplexed. My immediate concern was: Why is a psychiatric research institute turning to me — a feminist therapist utterly unconnected with psychiatry, moreover, famous/infamous for organizing against it? A plausible explanation is that they had no idea who I was but had simply cobbled together a list of all therapists in the city known to work with people thought of as having “eating disorders.”
As I continued reading, my perplex turned into a kind of alarm, for the words, “We hope that this study would be a great referral source for you” signals that they are hoping to use therapists as a means of recruiting people into their study. The point is, it is bad enough that studies that place people in jeopardy are being advertised on buses, on the internet, in the main media. Now they are hoping to hook people’s own counselors or therapists into “referring” them. In essence, my first discovery.
As I pondered this, as a feminist, I began to catch a whiff of a possibly formidable new assault on women – overwhelmingly, the gender diagnosed as “anorexic.” The pressing question now was: What “treatment” were they researching? My hunch was one of the psychopharmaceutical substances. I was likewise eager to know what they were actually telling people about the product being tested.
In the interests of finding out more, I proceeded to call the coordinator. She confirmed that I had been contacted because I was on a list of therapists they had developed and clarified that this was a study on the use of olanzapine (better known by the brand name “Zyprexa”). “Would you like me to send you study material?” she offered. Shortly thereafter she emailed me an article about the use of olanzapine for anorexia as well as some general advertisements for the study (not one of which mentioned olanzapine).
What I did not receive, though I had explicitly asked for it, is the written information on olanzapine that they would be providing to prospective “participants.” I accordingly renewed my request. Her response was, “Generally [the doctor] discusses the details of the medication with the people in person if they are interested in finding out more.” (personal email, July 22, 2014) Which left me wondering if any written information is provided, and if so: a) what it says and b) why they are reluctant to share it with the very people they are theorizing as a prospective referral source and, if not, why nothing is being put in writing.
My own suspicion here? A couple of years ago, I forced an investigation into an ECT trial at CAMH, using as the basis for the complaint the very material that the principal investigator made public or handed to prospective participants. Now to be clear, the investigation in question, as expected, concluded that nothing wrong had happened. Given that the complaint caused the organization considerable consternation, however, one obvious possibility is that it is now policy to put as little as possible in writing. Be that as it may, of course, this much is clear: If little or nothing is put in writing, it is very hard to prove what is being told participants—that is, whether risks are greatly minimized or indeed mentioned at all and whether the claims being made have any credibility. What goes along with this, even if judged by less critical standards, under such circumstances, the likelihood that what consent participants give will be “informed” is negligible.
Which brings us to the nature of olanzapine itself. For those unfamiliar with it, olanzapine is an atypical antipsychotic. It is approved for use with “schizophrenia” and has never been approved for use with “anorexia.” Unfortunately, nor need it be so approved, for off-label prescribing (prescribing for purposes other than those for which a drug has been approved) is legal. Now olanzapine is a particularly risky substance known to cause all the problems that typically attend antipsychotics, but in addition causes hypoglycemia, diabetes, and hormonal imbalance, the last of which, in turn, leads to pathological weight gain—likewise well documented (see Breggin, 2008; also postings HERE and HERE.
The question that immediately presents itself is this: How many, if any, of these untoward effects do prospective participants hear about? And why do these researchers consider olanzapine effective for “anorexia” in the first place? And why in the larger scheme of things is this new “treatment approach” being pursued?
The first question remains unanswered largely because the process is not transparent. I leave you to conjecture in whose interest that lack of transparency is. In an attempt to answer the last two, I proceeded to hunt for earlier studies. I also investigated what the principal investigator himself had written.
Some salient findings? In 2007, there was a pilot study on the use of olanzapine for “anorexia.” It was funded in part by Eli Lilly—the manufacturer of Zyprexa. There were also a few other small studies. This larger study itself (the topic of the letter) is predicated on those earlier studies and it is taking place at CAMH in collaboration with Columbia University and three other U.S. sites. Correspondingly, what is being tested is precisely the proposition that olanzapine is efficacious with “anorexia.”
Question: What makes the earlier studies sufficiently promising to warrant such a study? It is here where what is essentially fancy footwork takes place. While anxiety relief is being hypothesized, the main and only convincing finding, as seen in Attia et al., (2011, p. 5), is that “in a small group of outpatients with AN, olanzapine was associated with greater increase in BMI [Body Mass Index] than was placebo.” To put this in layman’s terms, the participants on olanzapine gained more weight than the participants on placebo.
What is going on here? Quite simply, pathological weight gain caused by hormonal imbalance which in turn is caused by olanzapine is being repositioned as indicative of effectiveness for “anorexia.” In other words, not “normal” but pathological weight gain is itself being re-packaged as successful treatment. Something not hard to do, given the worry that people naturally have about the weight loss of women diagnosed with “anorexia.”
Put aside our understandable worry about women in these circumstances—and I am in no way denying that women deemed anorexic are often in very serious trouble with themselves (see Burstow, 1992)—what we have here, in effect, is the patriarchal control and harming of women, made to look palatable.
Exactly how far this new direction will go remains to be seen. That depends on what happens with other research studies on anorexia (note; there is more than one new “approach to anorexia” being researched at CAMH and around the world).
It likewise depends on how coopted therapists become, what propaganda is churned out, with what “before and after” pictures, how much money is pumped into the marketing, and what distraught family members can be brought onside. However, it is not hard to imagine a substantial chemical onslaught on young women with eating problems ensuing.
As for the participants themselves, what is the likely fate of the women once the trial ends? The answer is latent in the letter. The investigators promise to find “appropriate follow-up care at the completion of the study” and commit to ensuring “the continuity of care.” Translation? They will refer the women to doctors likely to keep them on the olanzapine, using, among other things, the pathological weight gain (repackaged as benign) as the reason why the women should continue on the “med.”
If it is now fairly clear what is going on, also why it is a win-win for the pharmaceutical industry. Further clarity arose as I unearthed and scrutinized one other publication. In an article called “Drug Rescue and Repurposing,” Kaplan, the principal investigator of the CAMH research in question states that olanzapine is being studied for “its repurposing potential.” He goes on to explain:
“Many pharmaceutical companies are moving away from developing new central nervous system drugs and psychiatric drugs in particular, due to the high costs of drug development, the absence of good animal models for psychiatric disorders, and low success rates in phase 3 clinical trials. As a result the CNS line is drying up and drug repurposing ends up an important and valuable research approach to able to develop new drugs in a cost-effective manner.” (Kaplan, 2013)
Despite the use of the term “develop new drugs” the companies, in point of fact, are not in these instances “developing new drugs” but rather, as Kaplan puts it, “repurposing.” The very words inserted into the title of his article “Drug Rescue,” correspondingly, is an answer to my final question. The pharmaceutical companies are experiencing what they see as a challenge to their bottom line — that is, purportedly they are in need of “rescue.” Stringent “repurposing” for drugs, whatever the type and whatever population can be theorized in relation to it, is the solution. The sacrifice of people for the greater good of the drug companies, I would add, is astonishingly close to being acknowledged.
To return to the beginning of this article and retrace our steps, we began with a letter offering what sounded like a benefit to the therapist. However, besides that as an antipsychiatry activist, I have no connection with psychiatry and so such communication is minimally an annoyance, in this instance something in particular did not “sit right.” And so instead of throwing away the letter or commenting on its “errors” or using it as an example of the type of letter that I receive from time to time, I approached it as a possibly useful entry point that could be employed to shed light on psychiatric processes. That is, I followed the different institutional threads that presented themselves.
What I found initially is a lack of transparency, combined with the use of a highly dangerous drug − olanzapine. Probing further, I discovered that what recommended this off-label use of the drug was nothing less injurious than the pathological weight gain arising from hormonal disturbance. And in the process I found what may well be the beginning of a new frontal pharmaceutical assault on women diagnosed with anorexia.
Finally, while of course the prevalence of “off-label” prescribing − and that its purpose is to increase industry profit − is well known, one related finding surfaced that is minimally less theorized: The immediate reason for the “repurposing” note is to get around not only the problem that stage 3 trials (the huge trials mandatory when attempting to bring a new drug to market) are expensive, but the at least as serious problem that they typically yield dismal results.
Hence the need for what is euphemistically being termed “repurposing,” and hence for studies that use whatever evidence can be mustered (including ones that can reasonably be put down to harm, pure and simple) to declare effectiveness. In essence, not only is this cost-effective, it has the added advantage of sidestepping the entire approval process, while creating the appearance of acting responsibly. A further direction that appears to have been uncovered is the use of people’s own therapists—including private feminist therapists—to secure research participants and the practice of guaranteeing repeat customers by guaranteeing “continuity of care.”
All these findings are important to make known. Moreover—and this takes us back to the beginning of this article—a modest demonstration of the value of employing an “entry point” approach.
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A final methodological comment in conclusion: I stated at the outset that there was a relationship between what I was doing and institutional ethnography (IE). So was this an institutional ethnography study? No. What I did is to take a few IE elements and fashion an easily accessible method available to anyone. Should this intrigue you about IE itself and should you want to know what could be done if one were actually using real IE in all its dimensions and complexity, keep reading BizOMadness and Mad in America. I am in the process of training a veritable army of antipsychiatry critics in IE, so you will be hearing more about this serviceable methodology in the months and years to come.
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This blog is a slightly revised version of one that appeared first on
BizOMadness, Bonnie Burstow’s personal website
References
Attia, Ec. et al. (2011). Olanzapine versus placebo for anorexia nervosa. Pathological Medicine, p. 1.
Breggin, P. (2008). Brain-disabling treatments in psychiatry. New York: Springer.
Burstow, B. (1992). Radical feminist therapy: Working in the context of violence. Newbury Park: Sage.
Kaplan, A. (2013). Drug rescue and repurposing. IMS Magazine. Downloaded July 30 2014 fromhttp://www.imsmagazine.com/drug-rescue-and-repurposing-allan-s-kaplan/.
Patton, M. (2000). Qualitative evaluation and research methods (2nd ed.). Newbury Park: Sage.
Smith, D. (Ed.) (2006). Institutional ethnography as practice. New York: Rowan and Littlefield,
Smith, D. and Turner, S. (Eds.) (2014). Incorporating texts into institutional ethnography. Toronto: University of Toronto Press.
Bonnie Burstow, Ph.D.
Deconstructing the Institution: Dr. Burstow is a faculty member at U. of Toronto, and an antipsychiatry activist. She writes about language, institutional ruling, resistance, and social change. Works include Radical Feminist Therapy and Psychiatry Disrupted. For more information, see bizomadness.blogspot.ca
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