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” (for the letter in its entirely, see https://drive.google.com/file/d/0B39eB1GoDYuQM1RpUHFIX09NVHM/edit?usp=sharing). 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 the 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, albeit 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,
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 it 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 hypoglycemia, diabetes, and hormonal imbalance, the last of
which, in turn, leads to pathological weight gain—likewise well documented (see
Breggin, 2008; also postings at http://www.lawyersandsettlements.com/lawsuit/zyprexa.html#.U90fukhPI4Y
and
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 testing
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 indicator of effectiveness for “anorexia”. In other words, not “normal”,
note, but pathological weight gain itself is 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 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 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 “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 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 findings that it is 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.
A final methodological comment in ending:
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 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 (bizomadness.blogspot.ca)
and Mad in America. I am in the process of training a veritable army of antipsychiatry
critics in IE and so you will be hearing more about this serviceable methodology
in the months and years to come.
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 from http://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.
No comments:
Post a Comment