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4 Case Study – Gulf War Related Illnesses
8.4 Case Study – Gulf War Related Illnesses
social institutions. It disregards class differences in disease prevalence and involves
an individualistic and reductionistic approach to studying disease. As such, claims
of environmental illness directly challenge governments, corporate polluters, and
institutionalised medicine; they are thus almost inevitably strongly contested and
highly politicised (Brown 2007).
The United States government response was marked by a reluctance to accede to
the veterans’ point of view, while placing what Cable and Shriver (2010: 45) call
“policy palliatives” in place. From the start, the United States government was
reluctant to admit to chemical weapons exposure, and claimed there were no established health consequences to the other environmental stressors identified (Cable
and Shriver 2010; Brown 2007; Shriver et al. 2002). The dominant epidemiological
paradigm was focused on stress and, in particular, post-traumatic stress disorder
(PTSD). In spite of the fact that very few returning soldiers were displaying classic
symptoms of PTSD, the expert panel of a 1994 National Institute of Health (NIH)
assessment workshop concluded:
It is possible that the expression of post-traumatic distress may be distinct in the Persian
Gulf experience and may take the form of somatic and multi-system symptoms rather than
classic post-traumatic stress disorder numbness and flashbacks (cited in Brown 2007: 146).
Veterans said that if they mentioned Gulf War related illness symptoms to
Veteran’s Administration (VA) doctors, they would be sent to a psychiatrist or psychologist, generally without any investigation of the physical symptoms (Brown
2007; Shriver and Waskul 2006).
Experiencing a contested illness such as GWRI involves a number of assaults, on
the physical integrity of the body, on one’s financial security, on credibility and selfesteem, on identity, and on interpersonal relationships. The returning soldiers often
experienced symptoms so debilitating that they were unable to hold down regular
employment. Without civilian medical insurance, they were required to use VA doctors, who would dismiss or trivialise their physical symptoms. Incomplete medicalization of GWRI at the conceptual level thus led to poor medicalization of their
physical and cognitive symptoms at the level of doctor patient interaction. As one
army doctor put it, “…if you have to prove you are ill, you are never going to get
well” (cited in Brown 2007: 141). Veterans – particularly if they were too ill to
work – spent an enormous amount of money in search of a clear medical diagnosis,
and were often left in difficult financial straits.
Gulf war illness does not exist. You cannot get disability with the code of Gulf War illness.
They are given disability for different symptomology but it is not labelled Gulf War illness.
And you had to have been on active duty when it started or you get what is called ‘nonservice connected disability’ and that is very difficult to get. (Veteran, quoted by Shriver and
Waskul 2006: 471).
The lack of conceptual medicalization of GWRI thus led directly to poor institutional medicalization of the syndrome, particularly in relation to ‘sick role’ allowances made by the VA, employers, family and the community at large. This lack of
institutional medicalization extended to scepticism and a lack of legitimacy extended
by members of the wider community and by employers (Shriver and Waskul 2006).
8 Medicalization and Contested Illnesses
Formerly fit and hardy soldiers, finding themselves reduced to a state of dependence
and incapacity, had to deal with further stigma based on assumptions by others that
they were ‘losers’, ‘whiners’ or not ‘real men’. This led to identity questioning,
depression, marital troubles and even suicidality (Shriver and Waskul 2006).
A movement of veterans working for acknowledgement of GWRI, and compensation, developed out of informal social networks. Local and regional networks
worked at the grassroots, operated with volunteers. A national clearinghouse was set
up in Washington D.C., funded by subscriptions and with a paid staff. This organization collected documentation, and helped to establish lay science projects, to collect epidemiological information from veterans and to challenge the findings of
government review bodies. One VA nurse, who was herself a Gulf War veteran,
provided fellow veterans with a symptoms list and advice on receiving VA compensation under the code for undiagnosed illnesses. She found herself in deep trouble
with her employer for this action (Shriver et al. 2002: 98), which allowed veterans
to achieve a partial institutional medicalization of their condition. Further institutional medicalization was achieved through some minor legislative and policy successes, such as a 1994 law that provided compensation to Persian Gulf War veterans
with an illness that had at least a 50 % probability of being war related; although in
practice, this legislation assisted few veterans (Cable and Shriver 2010; Brown
2007). As of the time of writing, Gulf War related illnesses were still a contested
group of syndromes with an incompletely medicalized status.
As noted above, medicalization is not a new phenomenon; developing from the
eighteenth century onward, it became deeper and more extensive in the latter half of
the twentieth century (Clarke et al. 2003). In the twenty-first century, according to
an important new sociohistorical analysis, it has further intensified, and has become
enmeshed with technoscientific developments – as well as with socioeconomic and
cultural changes – taking a new form Adele Clarke and her colleagues call biomedicalization (Clarke et al. 2003, 2010). These authors claim that a new medical epoch
is forming; transformation of the infrastructure of biomedicine is reorganizing
health care from the inside out (Clarke et al. 2003). Thus, medicalization is taking a
complex and intensified form which is transforming medical economies, health care
institutions, biomedical infrastructure, clinical practice, medical knowledges, technoscientific health practices, cultures of health and healing, patient experience, and
people’s embodied identities.
Biomedicalization consists of five interweaving and overlapping historical trends
(Clarke et al. 2003, 2010). First, biomedicine is becoming increasingly commodified, corporatised and privatised, as multinational companies do research, create
new products and provide services to capture a global health care market. Secondly,
health has itself become a commodity. Cultures of surveillance develop as health –
rather than illness – becomes an individual goal, a social and moral responsibility,
and a site for routine biomedical intervention. Biomedicine is increasingly concerned with managing risk and enhancing function, rather than treating illness.
Thirdly, biomedicine is increasingly technoscientific in nature. Computerized databases are transforming the infrastructure for both clinical practice and medical
research. Evidence-based medicine is creating new technologies for medical decision making. Pharmaceutical development is being molecularized and geneticized.
New medical technologies based on nanotechnology, tissue engineering and stem
cell research, amongst other things, are transforming medical practice (Clarke et al.
A fourth historical trend involves transformation in the way medical information
and knowledge is produced and distributed. Medical information is extensively
available through the internet, direct to consumer advertising, patient advocacy
groups and the mass media. Patients are no longer dependent on medical professionals to access health information; this is disrupting the ‘expert’/‘lay’ division and
creating new types of social linkage. The pharmaceutical industry is becoming an
ever greater source of medical research knowledge and medical information. Finally,
biomedicalization involves a transformation of bodies and identities. The body is no
longer seen as static and unchanging; it is capable of being reconfigured and transformed. Bodies are no longer expected to conform to a universal norm; they are seen
as flexible and multiple. Moreover, technoscientific identities have proliferated, as
people take into their sense of self an identity which has its origins in a diagnostic
category or technoscientific practice (Clarke et al. 2003). All of these five historical
trends have implications in relation to medicalization. These trends are only somewhat separable analytically, and are completely interrelated in practice; taken
together, they have created a new historical moment in the development of biomedical society, economy and culture.
For example, Meta Kreiner and Linda Hunt’s (2014) ethnographic study, of the
interweaving of risk of disease and disease experience in the United States Midwest,
demonstrates the close interrelationship of these trends in preventative health care.
Going one step further than David Armstrong (1995) did in his classic paper on
surveillance medicine, they note that family medicine is being fundamentally transformed. The traditional focus on treating the signs and symptoms of existing disease
is being reconfigured into risk management interventions intended to prevent future
disease (Kreiner and Hunt 2014). They note that mildly elevated blood pressure
levels, or borderline glucose levels, are receiving vigorous attention by clinicians,
with medication to bring these levels back into a closely defined target range.
Moreover, even amongst very different kinds of family medicine, these clinical
practices are remarkably consistent – with up to half the population of patients
defined as being within ‘risky’ ranges on tests, and given treatment (Kreiner and
Hunt 2014). This transformation of people who are subjectively ‘well’ into risk
objects and diseased patients, subjected to enhanced surveillance and aggressive
treatment with medications and other medical technologies, has also been identified
by other authors (Aronowitz 2009; Novas and Rose 2000; Salter et al. 2011) and sits
clearly within the second trend identified by Clarke and colleagues (2003, 2010).
8 Medicalization and Contested Illnesses
According to Kreiner and Hunt (2014), this process is supported by changes in
technoscientific practices, which is the third historical trend within the biomedicalization process. In particular, the development of new screening technologies, along
with clinical guidelines within an evidence based medicine framework, has led to a
progressive lowering of the thresholds for risk within diagnostic criteria guidelines.
Over the past 40 years, the numerical thresholds defining diabetes, high cholesterol
and high blood pressure have been pushed downwards, until they are now set at
numbers resembling population averages (Kreiner and Hunt 2014). These clinical
guidelines are increasingly recommending medication rather than lifestyle modification. As one physician put it,
They may not meet the definition of diabetes but we need to treat them like they are a diabetic and get more aggressive – starting on medications like metformin – and that may keep
them from meeting the definition of diabetes for years (cited by Kreiner and Hunt 2014:
The physicians in this study cited nearly identical diagnostic criteria, and had
very similar treatment plans. This is an outgrowth of the process of quality monitoring, part of the first, corporatization, trend within biomedicalization. A private
agency, the National Committee for Quality Assurance (NCQA), sets quality of care
standards in the United States and measures physicians’ performance against them.
They measure percentages of patients meeting good control numeric ranges for certain indicators, against the total number of patients diagnosed with a condition
(Kreiner and Hunt 2014). Clinicians then actively work to keep patients’ ‘numbers’
within the target range in order to maximise their own ranking and to achieve what
have been defined as clinically successful results. They do this, even when patients
with borderline ‘numbers’ are experiencing significant side effects from the medications they are taking (Kreiner and Hunt 2014).
The fifth trend within biomedicalization includes patients taking on a technoscientific identity. This is evident in Kreiner and Hunt’s study. The patients interviewed
all saw themselves as ‘ill’ and almost all saw themselves as in need of medication,
even though many were actually in the ‘pre-disease’ or ‘at risk’ state, and were
physically well (Kreiner and Hunt 2014). They indicated that the information they
had been given with their test results did not differentiate between ‘diabetic’ and
‘pre-diabetic’, for example, and that their doctors did not differentiate between
these two categories in treating them. For example, a woman who had test results in
the pre-diabetic range said:
When they discovered I was diabetic, I was in shock. I heard my doctor say “diabetic” and
I could see his mouth moving, but I didn’t hear another word he said that whole session…
It’s not easy, I’m diabetic. (cited by Kreiner and Hunt 2014: 877).
These patients adopted a ‘diabetic’ or ‘hypertensive’ illness identity, and felt an
urgency in relation to treatment.
In this process of the development of technologically focused preventative medicine, we can see a profound medicalization taking place. People who would previously have been seen as quite well, take on disease categories within their sense of
self, and embark on intensive treatment regimes with potentially substantial side
From Disease to Enhancement
effects. Clinical practice is shaped by corporate regimes of governance and by new
technologies of medical decision making which progressively expand the population of people seen as needing treatment. Regimes of risk and surveillance come to
govern family medical practice, possibly diverting attention away from patients
with existing symptoms of illness. Large groups of the ‘worried well’ are recruited
into a liminal space between health and disease.
From Disease to Enhancement
The enhancement of biological and psychological life is a current area of intense
debate in relation to (bio) medicalization. Whereas medicalization inherently
involves redefining a situation as a disorder, or a disease process, before intervening
to change it, enhancement processes may be applied to a seemingly healthy body.
As Catherine Coveney and her colleagues put it:
Enhancement as optimisation involves using technoscience to transform, customise and
modify the body (including mental processes that have been given a biological basis in the
brain) in order to make the most out of oneself, minimise risks to health and achieve the best
possible future in the pursuit of better health (Coveney, et al. 2011: 385).
This is a process which often involves all five historical trends identified in
Clarke and colleagues’ (2003, 2010) analysis of biomedicalization. We will explore
several current examples of such enhancement processes: using medications such as
Modafinil to customise sleep patterns and enhance cognitive performance; using
extended cycle hormonal contraceptive technologies to suppress menstruation; and
using human growth hormone, intense biosurveillance and lifestyle modification to
slow down the aging process. In all of these examples, technoscientific processes
are used to create a self which is, for its age and situation, ‘better than well’.
Modafinil was first licensed in 1998 by Cephalon, Inc. under the name, ‘Provigil’,
as a treatment for narcolepsy, a condition which causes one to fall asleep repeatedly
and unexpectedly. It is a ‘eurogic’ drug that promotes arousal, or calm wakefulness
(Coveney et al. 2009). It was discovered that it also has cognitive benefits for healthy
people; it improves alertness, concentration and memory. It has since been licensed
to treat excessive daytime sleepiness associated with chronic fatigue syndrome,
cancer, shift work sleep disorder, sleep apnoea, and restless legs syndrome. It has
also reportedly been used off label by students pulling all nighters, by shift workers,
by the military, by travellers coping with jetlag, and by professionals with deadlines
to meet. A survey reported in Nature found that one in five respondents had used
drugs non-medically, to boost concentration, focus or memory (Maher 2008); however, there is debate regarding the extent of the usage of Modafinil and other drugs
for cognitive enhancement, rather than for therapy or simple recreation (Schleim
2010; Williams et al. 2008, 2013).
In order to gain a license, a medication such as Modafinil has to be seen as useful
for a therapeutic purpose; however, the line between therapy and enhancement is
8 Medicalization and Contested Illnesses
extremely blurry. Many of the conditions for which this drug can be prescribed have
subjective diagnostic criteria and no clear biochemical indications. However,
Catherine Coveney and colleagues found that people were ambivalent about using
pharmacology to control or replace sleep without medical authority, feeling that
there were safety issues involved and that such usage was irresponsible (Coveney
et al. 2011; Williams et al. 2013). Potential users tended to justify their taking of this
drug on the basis of some sort of health or social problem which needed to be
resolved. Coveney and colleagues (2011: 388) concluded on this basis that the
transformation from medical technology to consumer product is not straightforward, nor is it easily accomplished.
Whereas, in the case of Modafinil, the key drivers of extension as enhancement
were social, academic and economic, the key drivers for the enhancement use of
Seasonale, an extended cycle oral contraception pill first licensed in 2003, are
located in pharmaceutical company marketing. Seasonale, and related medications
such as Lybrel, are oral contraceptives which have been redesigned so that the placebo pills which bring on a menstrual cycle are taken only every 3 months, in the
case of Seasonale, or not at all, in the case of Lybrel. While not perfectly effective,
as some women have breakthrough bleeding, the aim is to reduce the number of
menstrual cycles substantially, or to remove them entirely (Roberts 2008).
While these pharmaceuticals are licensed as contraceptives, they are marketed as
menstrual suppression technologies (Gunson 2011; Mamo and Fosket 2009). Their
effectiveness as contraceptives goes almost unmentioned in direct to consumer
advertisements, which feature active young women, generally dressed in white
attire emphasizing cleanliness and lack of menstrual flow, enjoying the convenience
of a menses free body. The non-menstruating woman is represented as confident,
feminine, capable, sexy and empowered (Mamo and Fosket 2009). Seasonale advertising presents women users as consumers, rather than patients, making a lifestyle
choice from a range of such choices (Gunson 2011).
Advocates of menstrual suppression technologies have attempted to medicalize
menstruation, representing it as creating unnecessary morbidity due to premenstrual
tension and menstrual pain; women are said to take unnecessary time off work for
these reasons. It is also presented as unnatural, with an evolutionary story used to
present the argument that women in hunter gatherer societies had fewer menstrual
cycles due to pregnancy and extended breastfeeding, and that we are thus currently
facing an ‘epidemic’ of menstruation due to demographic change (Gunson 2010,
2011). These attempts to conceptually medicalize menstruation have had limited
success, and the fact that the medicalization of menstruation is not necessary for the
licensing of extended cycle oral contraception (ECOC) means that such representations have not been pursued with vigor. Instead, ECOC has become a lifestyle medication, with women adopting it enthusiastically in some cases and ambivalently in
others; discourses of choice are used by consumers, who alternately position ECOC
as either a medicalizing of the menstrual cycle or as a demedicalizing form of consumer choice (Chesler 2006, Gunson 2010, 2011).
Processes of biomedicalization do not always require what we normally see as
‘high’ tech interventions. Rather, reasonably low technology practices can be
embedded in a discourse which celebrates technoscience and progress. Anti-aging
medicine is practiced through intensive surveillance of a wide range of biological
markers, strong practitioner – patient collaboration, lifestyle modification, and the
use of hormones, vitamins and supplements (Fishman et al. 2010). It is thus, like
many other forms of enhancement and optimisation, both medicalizing and demedicalizing. With this form of practice, a patient’s entire lifestyle can be medicalized,
something which is also true of complementary and alternative medicine (Lowenberg
and Davis 1994). At the same time, a form of patient-centered medicine returns
agency to the client.
Anti-aging medicine is located, however, in a discourse which predicts an
impending technological revolution which will ameliorate aging, either partially or
fully (Mykytyn 2010). Central to it is the belief that aging is a painful biological
decline, and is a ‘treatable condition’ (Cardona 2009: 448; Mykytyn 2010). It is
estimated that by 2018, the global market for anti-aging products and services will
be worth $345.8 billion United States dollars (Schweda and Pfaller 2014). This
process of the commodification of age-related health management is key to biomedicalization. Consumers find it worthwhile to spend their money in this, largely
private sector, area of health care partially because it is an investment in preventing
age-related discrimination in the workplace and in social arenas (Cardona 2009).
The enhancement and optimization of “life itself” (Rose 2007b) can thus be a
response to social problems such as disgust in relation to menstruation, expectations
that people will participate in a 24/7 active society, or ageism in employment. Rather
than dealing with these problems at the level of culture and social structure, the
body is reshaped and reconfigured through biological means to meet the new
requirements placed on it. In this respect, enhancement of the body has many connections with classic medicalization, which also involves new expectations being
placed on bodies, minds and behavior. However, these requirements were classically expressed through the creation of a disease or disorder category. In the coming
era of enhancement, this step may well become less necessary.
Medicalization, which originally meant the locating of a condition within the jurisdiction of mainstream medicine (Davis 2006), has come to refer to a broad set of
changes in the way we think about our bodies, health, well-being and risk. It has
also come to refer to a broad swathe of structural and infrastructural changes to the
way that institutions of health care operate and are organized. At the most immediate level, it refers to a range of everyday interactions, from clinical encounters with
physicians to the legitimisation of a ‘sick role’ by employers, family members and
members of the wider community (the sick role is explained further in Chap. 2).
Medicalization has been operating in some form for hundreds of years, but in this
century, biomedicalization has taken an intensified and complex form (Clarke et al.
2003). The agents of medicalization, biomedicalization and of demedicalization are
8 Medicalization and Contested Illnesses
many and varied; with varying degrees of success, they turn contested illnesses into
legitimate diagnostic categories or return ‘diseases’ to legitimate ways of life. In
some cases enhancement medicine moves beyond thinking about disease categories
at all. Through such processes, we can see clearly how the social construction of
disease and illness works.
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Abstract This chapter explores the rise and expansion of the pharmaceutical
industry over the twentieth century and into the twenty-ﬁrst. It discusses the importance of medicalization to the growing pharmaceutical market, the means by which
pharmaceutical companies determine the safety and beneﬁt of the medicines they
produce, and the aggressive marketing they undertake to sell their products. The
chapter outlines a range of strategies by which pharmaceutical companies undermine medical research that raises concerns about their products. A case study is
discussed of the high level of underreporting of adverse reactions to pharmaceuticals. The chapter concludes by arguing that the far-reaching role of pharmaceutical
companies in contemporary life raises fundamental questions about social inequality in medicine, the hazards of proﬁt-driven motives, and the changes occurring in
our cultural and everyday experience of health and illness.
Keywords Pharmaceutical industry • Disease mongering • Pharmaceuticalization •
Randomized controlled trials • Risk proliferation syndrome • Pharmacovigilance •
Adverse drug reactions • Publication bias • Repressing research
Snoop around in almost any household and you will ﬁnd a wealth of medications,
whether prescribed, over the counter or gifted. They will be in the bathroom and
bedside cabinets, the pantry, out on kitchen counters. You will also ﬁnd them in
handbags, glove boxes in cars, ﬁrst-aid kits and in the desk drawers at work.
Medications, with pharmaceuticals being a major component, are quotidian and
ubiquitous. This chapter describes the development of the pharmaceutical industry
and the concerns that the proﬁt motive of this industry and the marketing of medicines raises. Efforts to protect the public through determining the safety of pharmaceuticals is discussed and some of the major challenges to these efforts as a result of
the limitation around detecting and reporting adverse reactions and side effects to
pharmaceuticals. In so doing the chapter highlights the complex interplay between
therapeutic goals, industry concerns, scientiﬁc legitimacy and interactional dilemmas in medical consultations.
© Springer International Publishing Switzerland 2016
K. Dew et al., Social, Political and Cultural Dimensions of Health,