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4 Case Study – Gulf War Related Illnesses

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8.4 Case Study – Gulf War Related Illnesses



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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).



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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.



8.5



Biomedicalization



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,



8.5 Biomedicalization



103



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.

2003).

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).



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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:

875).



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



8.6



From Disease to Enhancement



105



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.



8.6



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



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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



8.7 Conclusion



107



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.



8.7



Conclusion



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



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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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Chapter 9



Pharmaceuticals



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



9.1



Introduction



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,

DOI 10.1007/978-3-319-31508-9_9



111



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