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Incorporating Pharmakon: HIV,

Medicine, and Body Shape Change
ASHA PERSSON

Introduction
As far as controlling the virus is concerned, Im doing very well. But unfortunately the drugs
have taken their toll. So the improvement in health has come at a cost. I mean improvement in
health in the sense of damage to the immune system being reversed. But other things have
happened as a result of taking the drugs. (Jos, 56, HIV positive)

The prescription and consumption of medicines for the purpose of health is an

integral and normalized feature of contemporary health care. Resorting to pills
to cure or prevent a host of afflictions is common practice, and for many people
with chronic illnesses, ingesting pills is a daily event. But what actually takes
place at the intersection of bodies and medical drugs? Is it a solely therapeutic
affair, a restoration of bodily normality, or one of multiple transformations? This
is a theme rarely examined in the now vast literature on biomedicine in social
theory. It seems every aspect of the medical process has been critically analysed
right up to the moment when drugs pass human lips and disappear down the
oesophagus. After that, the story tends to become obscure, as if lost to the silent
recesses of bodies. Bodies, however, are far from silent. They express stories in
many and complex ways, including those of medicine. In this article I want to

Body & Society 2004 SAGE Publications (London, Thousand Oaks and New Delhi),
Vol. 10(4): 4567
DOI: 10.1177/1357034X04047855

www.sagepublications.com

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trace the bodily paths of pills, and ask: how are corporealities produced when
medicines meet living flesh, and what kinds of meanings are invested in this biochemical encounter?
My starting point is the social dimension of medical drugs. Taking medicines
involves more than the physical ingestion of pharmaceutical substances for
remedial purposes. Embedded in and embodied through this act are cultural ideas
about self and body, about illness and health, efficacy and responsibility (Nichter
and Vuckovic, 1994: 150910). To borrow Arjun Appadurais notion of the
social life of things (1986), medical drugs are things with particular histories
and investments. For all their innocuous appearance, every pill is a potent fusion
of ingredients, including scientific practices, political agendas and commercial
interests, along with social activism and media spin (Davis, 1996: 7). Medicines,
therefore, are more than merely chemical compounds; they are cultural entities
(Montagne, 1996: 11). As such, they are products of human culture, but also
producers of it, affecting peoples sense of being and social lives as intimately as
food, money and other charged things (Cohen et al., 2001; Van der Geest et al.,
1996).
These histories and investments shape the practices and meanings around the
act of taking medicines. Using antiretroviral therapy as a case in point, my intention is to elaborate this social dimension of drugs through a refocus on their
ambiguous capacity, namely, how the sometimes unintended effects of their intracellular activity can have profound corporeal and social implications. This
ambiguity is captured in the original Greek word for drug, pharmakon, meaning
both remedy (medicine, cure) and poison (toxicon), but also a means of
producing something. With pharmakon as my conceptual tool, my specific
intention is to explore how the chemical suppression of HIV in human bodies
can coincidentally and paradoxically come to re-produce the virus in a different
corporeal guise: as a signifying change in body shape. By doing so, I wish to
pursue a kind of phenomenology of drugs as embodied processes, an approach
that foregrounds the productive potential of medicines; their capacity to reconfigure bodies and diseases in multiple, unpredictable ways. In short, this article
traces some of the complex corporeal processes of antiretroviral therapy, and the
ways in which these processes are negotiated and lived in relation to social
meanings and practices invested in medical drugs and human bodies.
A Very Brief History of HIV Drugs
The introduction of combination therapy, also known as highly active antiretroviral therapy (HAART), is generally seen as a turning point in the epidemic

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in Western societies. The AIDS crisis was cautiously, or in many cases enthusiastically, declared over (at least by those with access to the new drugs), and HIV
became widely reconceptualized as a manageable chronic illness (see Rofes, 1998;
Siegel and Lekas, 2002; Voelker, 1996). While the discourse of HIV/AIDS as
chronic and manageable arose as early as 1989 with the introduction of AZT
(Fee and Fox, 1992), it was not until the so called Protease Moment in 1996,
when a new class of drugs gave rise to the era of HAART, that the notion of
HIV/AIDS as a chronic illness actually coincided with drastically shrinking
obituary pages (Rofes, 1998: 35).1 Promising results from drug trials suggested
that treatment of HIV with a potent cocktail of drugs was more effective in
suppressing the virus than earlier mono-therapy (AZT) and dual therapies, due
to a diversified interference in the viral replication process (e.g. Gulick et al.,
1998). Stories abounded in affected communities and the media of HAART
literally bringing people back from the brink of death, giving them a new lease
on life. AIDS-related morbidity and mortality rates declined and there was a
great sense of optimism initially about the new drugs and their seeming capacity
to restore health and enable reasonably normal lives for people with HIV (Rofes,
1998; Siegel and Lekas, 2002).
Before long, combination therapy became the recommended clinical strategy
for treating HIV-infected individuals, including those who were asymptomatic,
with the aim to suppress viral activity from the start and thus prevent gradual
erosion of the immune system (Carpenter et al., 1997). Characteristic of
HIV/AIDS, a weakened immune system makes individuals vulnerable, over time,
to a range of opportunistic infections, some of which are life-threatening, and
many of which change or disfigure the body in visible ways.2 In the early
epidemic, prior to HAART, the most conspicuous of these were HIV-related
wasting and a form of skin cancer, Kaposis sarcoma, which became the identifying and dreaded signs of AIDS. By and large, combination therapy has not
only reduced mortality, but also erased these corporeal signs of AIDS among
HIV-positive people. Paradoxically, however, the introduction of HAART soon
presented new and unexpected corporealities.
HIV drugs have a rather unique history. In 1986, the accelerated approval of
AZT in the USA was a precursor to what was to become a general process of
enabling early access to new and often inadequately tested HIV drugs in Western
countries through various special programs. Community mobilization and AIDS
activism were instrumental in this achievement. Media campaigns, lobbying and
demonstrations put pressure on governments to authorize faster drug approval
and expanded access. Concerns over the safety of unproven drugs were largely
mitigated by a sense of urgency. People were dying and the potential risks of

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speedy approval were generally understood as part of the bargain (e.g. Delaney,
2002: 18; Machon, 1999). It was often not until well after their release on the
market that the limitations and adverse effects of some of these drugs became
apparent to both HIV patients and physicians working in the field (Carr and
Cooper, 2000; Mascolini, 1999; Volberding and Deeks, 1998).
While these adverse effects were initially unforeseen and unknown, today they
are an unequivocal part of HIV health management. When making decisions
around treatment, people with HIV and their health professionals must consider
and negotiate a range of possible effects, including potentially lethal reactions, as
well as the risk of as yet unknown long-term implications. Some of the more
common, or recognized, effects include: chronic diarrhoea, nausea, vomiting,
stomach cramps, fat loss (lipoatrophy), fat redistribution (lipodystrophy),
insomnia, fatigue, depression, memory problems, sexual dysfunction, diabetes,
rashes, hypertension, heart disease, liver damage, nerve damage (peripheral
neuropathy), pancreatitis and bone diseases (osteoporosis, osteonecrosis) (Carr and
Cooper, 2000; Machon and Batrouney, 1999).
How people negotiate these effects in their everyday lives and in relation to
the therapeutic management of HIV was the subject of a two-year study called
The Side Effects and Lipodystrophy Project by the National Centre in HIV Social
Research at the University of New South Wales. Through in-depth interviews,
this qualitative study explored the experiences of 40 people in Australia in 2002.
Participants were asked a range of open-ended questions on their attitude to HIV
therapy, the impact and management of adverse effects, their interpretation of
bodily symptoms and understanding of health. The majority of participants were
Anglo-Australian gay men who had been HIV-positive between 10 and 20 years.
Extensive treatment histories were generally the norm, though a number of
participants were not on treatment at the time of interview, adverse drug effects
being a common reason.
Pharmakon
Within the infant rind of this small flower
Poison hath residence and medicine power
(William Shakespeare, Romeo and Juliet, 2; 3; 2324)

The history of HIV drugs may be unique, but adverse and unintended effects are
by no means unique to HIV drugs. Treatment-related complications are endemic
in modern medicine. Many of these incidents are caused by errors as a result of
organizational and inter-professional constraints (e.g. Broadhead and Facchinetti,
1985). Yet the ambivalent meaning of the Greek word pharmakon intimates the

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inherent potential of medicines to act as a remedy and a poison (Montagne,

1996: 11). In Platos Pharmacy, Jacques Derrida (2000) proposes that these two
meanings, these two potentials, are inseparable. Pharmakon, he argues, cannot be
ascribed to one pole or the other, because it always harbours within itself the
complicity of contrary values. Having no stable, definitive essence, pharmakon
is indeterminate rather than predictable, contextual rather than causal (Derrida,
2000: 1256). Depending on the illness, the person and the dosage, a particular
drug can be beneficial. But for another person, that same drug may be dangerous. Social practice reflects this contrary potential, exemplified by child-proof
caps on medicine bottles and detailed instructions and warnings accompanying
prescribed medications. But the ambivalent quality of pharmakon is more than
purely a matter of wrong drug, wrong dose, wrong route of administration,
wrong patient (Silverman and Lee, 1974: 262). Drugs, as is the case with antiretroviral therapy, have the capacity to be beneficial and detrimental to the same
person at the same time.
Yet the poisonous pole of pharmakon is largely obscured by the scientific
achievements and restorative paradigm of modern medicine, made possible, of
course, by pharmakon itself in its antipodal guise. Pharmakon, as Derrida
observes, is turned on its invisible pivot and rendered from a single one, the
most reassuring, of its poles. As remedy, pharmakon is assigned an essence, a
virtue that announces the transparent rationality of science, technique, and
therapeutic causality, its magic forces expunged, or recast as triumphs of
Western knowledge (2000: 979). Contemporary words like pharmacology and
pharmacy, for example, carry little of the ambiguity of their etymological
ancestor, but evoke the metaphysical principles that underpin biomedicine: truth,
logic, reason. Analogous to the aspired perfection in Platos effort to maintain
clear-cut distinctions between opposites in the Phaedrus (the subject of Derridas
essay), biomedicine strives to master the indeterminacy and excesses, the transgressions of pharmakon, the shadow that haunts the tradition and threatens to
undo its work.
This tradition, this paradigm, is not to be confused with all the heterogeneous
discourses and practices that make up modern medicine, but is understood as the
underlying epistemological basis upon which this heterogeneity rests and thrives
and presses forward. As Williams and Calnan (1996) point out, in the context of
late modernity, with its chronic reappraisal, demystification and dislocation of
knowledge, modern medicine has increasingly become a plural and reflexive
domain. The medical clinic, for example, can be seen as a heteroglossal space
wherein multiple and diverse voices interpret, negotiate and indeed challenge the
biomedical paradigm. The HIV/AIDS epidemic, in particular, has been

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distinguished by strong patient activism and a dynamic relationship between

affected communities and health professionals that has been integral in shaping
and reshaping the medical management of HIV/AIDS (Ariss, 1997; Hurley,
2001). But what is of interest here is the ways in which pharmakon, and its
contrary effects, are conceptualized within the logic of the biomedical paradigm
and, conversely, how they are negotiated when manifesting simultaneously in
lived experience.
Mappings of Disease and the Logic of Magic Bullets
The intimate connection between illnesses and therapeutic substances is a culturally
pervasive one and generally grounded in a paradigm of affect. In modern medicine,
therapeutic substances are invested with the capacity and mission to either cure,
prevent or manage illness, while illness, in turn, opens up bodies to the presence and
powers of these substances. This interrelationship is mediated by the biomedical
reorganization of subjective illness experiences into real, observable disease
categories. That is, the logic of biomedicine operates to make dis-ease concrete, to
physically situate it in space (Foucault, 1975). This spatialization, or bodily
mapping, creates tangible targets and internal pathways, facilitating the application
of localized therapy. The workings and efficacy of therapy are similarly construed
in concrete terms. The administered substance pinpoints the identified target and,
by way of some physiochemical interaction (for example between drug molecule
and human cell), corrects that which biomedicine has ascertained as abnormal, and
thus reinstates bodily normality (Montagne, 1996: 18; Van der Geest et al., 1996:
1534; Van der Geest and Whyte, 1989: 3568; Willems, 1998: 114). Imbued with
this proficiency and precision, this almost magical power to heal, drugs take on the
quality of charms in medical science as well as in popular imagination (Montagne,
1996: 11; Van der Geest and Whyte, 1989).
In the case of HIV, where affected people may or may not be symptomatic,
disease is concretized and mapped in the blood through the medical technologies
of the viral load test and the T-cell count. Prognosis is determined according to
where a patients test results fall on a normative scale; whether their viral load
and T-cell count are greater or lesser than certain specified clinical benchmarks.
In short, the larger the amount of virus present in a persons blood, the greater
the risk of immune system damage indicated by a decline in T-cells (the main
target of the virus), which in turn increases the possibility of opportunistic infections and serious illnesses associated with AIDS. On this basis, treatment is
generally recommended if a patients T-cell count falls below a certain level, or
their viral load exceeds a certain amount of viral copies.3

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The primary aim of antiretroviral therapy is maximum and durable suppression of the virus, ideally to undetectable levels in the blood (depending on the
sensitivity of the test), to promote associated immunological preservation or
restoration. Response to therapy, and thus its effectiveness, is measured by
changes in viral load by means of the viral load test.4 In effect, the viral load test
represents a disease reality concealed within the anonymous interior of a patients
body, a pathogenic geography which is coded and decoded by medical technology (and re-coded as the field of HIV medicine evolves). In this system of
codes, disease progression is signalled by exponential viral replication, while an
undetectable viral load is widely interpreted as the emblem of therapeutic success
and has become a means whereby HIV health is conceived and gauged, a technological computation of health which may conflict with, but also mediate lived
experience in complex ways (Persson et al., 2003; Race, 2001a; 2001b).5
Integral to the logic of biomedicine and therapeutic drugs is a Cartesian
notion of human bodies as mechanistic and extrinsic to mind or self. As Kay
Toombs has suggested, this dualistic paradigm has been advantageous in that it
posits bodies as amenable to biotechnical manipulation (1988: 201). Pharmacological theory and practice is based on the premise that physical organs, systems
and cells respond in mechanical, predictable ways to the molecular properties and
actions of various chemical compounds. The projected bodily responses to the
cellular activities of antiretroviral therapies reduced viral load and improved
immune function are an example of this. Michael Montagne (1996: 18) observes
that this theory, which dominates clinical and popular thinking about medicines,
has proved very effective in explaining how drugs act in bodies to produce certain
effects, but it has been far less successful in throwing light on less predictable
phenomena such as placebo effects, psychosocial dimensions of illness and
recovery, or indeed the difference between so called primary versus secondary
pharmacotherapeutic outcomes.
Duncan and his Body Shape Change
I wonder whats going on in my body, Duncan commented to me, referring to
the internal processes of the antiretroviral drugs he is taking. I mean, you see,
these pills have never been tested before, he explained. I interviewed Duncan, a
40-year-old man, on a clear, warm day at the end of winter. At first, he was
reserved, awkward almost. But at the same time, he was bursting to talk, to
express what was happening to him. As we got into the interview and his story
began to unfold, a theme emerged that became very familiar to me during the
course of my research: the transfiguring effect of HIV therapy on Duncans body

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had made him socially uncomfortable and isolated, and had left his self-esteem
tattered.
Despite his careful attempts at sartorial camouflage, Duncans body showed
the classic signs of lipodystrophy, an unusual process of fat redistribution (resulting in an accumulation of fat in certain body parts), and fat loss (lipoatrophy)
(Carr et al., 1998, 1999). This metabolic disorder has given rise to a repertoire of
distinctive and largely irreversible body shape changes that manifest in arbitrary
combinations.6 These include: a distended belly; severely enlarged breasts (in
women); a mound of fat lodged at the back of the neck (buffalo hump); flat
buttocks; stick-like arms and legs; veins that bulge like roadmaps along the
extremities due to loss of subcutaneous fat; and extremely sunken cheeks, widely
seen as giving an unwell impression referred to as the look in gay communities.7
In what appears to be a random lottery of these characteristic features,
Duncan had unhappily scored nearly all of them. The participants in the study
lived and coped with these body shape changes in a variety of ways depending
on their personal biography, disease history and social situation. But Duncan
gave voice to many when he described lipodystrophy as horrible and vile
because of its significant impact on his body image and his sense of social and
sexual confidence (cf. Collins et al., 2000; Power et al., 2003). This impact is easily
understood in the context of a highly body-conscious society, but more importantly in relation to HIV itself and the way lipodystrophy tends to compound
feelings of difference, of having a body already set apart by medical management and by a socially stigmatized virus. For many, this experience amplifies the
so called burden of pills, not only in terms of having to adhere to a stringent
and often demanding treatment regimen, and the limitations this may impose on
individual lifestyles, but also the challenges the medical management of HIV can
pose to peoples sense of self and to their understanding of health.
What makes lipodystrophy particularly challenging for many is that it is an
unintended effect of therapeutic suppression of HIV and yet it has, ironically,
become a powerful marker of the disease in certain social domains. In a sense,
conflicting cultural constructions of illness and health are co-produced and
curiously converge in lipodystrophy. Reflecting on the concept of pharmakon,
Derrida (2000: 127) notes its tendency to invert opposites:
If the pharmakon is ambivalent, it is because it constitutes the medium in which opposites are
opposed, the movement and the play that links them among themselves, reverses them or
makes one side cross over into the other.

Lipodystrophy embodies this kind of ambivalence. The virus which might no

longer be technologically detectable in the hidden interior of a persons blood
paradoxically becomes detectable on the surface of their body. The attempt to

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remove any corporeal traces of HIV has actually rendered it more physically
visible. Thus, for some, the price of affecting a particular clinical notion of HIV
health is the social appearance of HIV illness. A tension between cultural notions
of healthy and sick bodies (Crawford, 1994) poignantly come into play as
many people with lipodystrophy struggle with the fact that although clinical tests
may suggest they are healthy, and although they may feel well, they believe they
look sick and represent the face of HIV to themselves and to others. During our
interview, Duncan articulated these contradictions and tensions through his
ambivalent attitude towards his HIV drugs:
I appreciate them for keeping me healthy and alive . . . . The foundation of my pill taking is
my appreciation. And on the other side I hate them because of what they do. So, theres two
sides to it . . . I mean sometimes I go take my pills and I think, oh Im feeding the [buffalo]
hump. Or just, I hate my pills. Theyre poison. You know, and I always take them every
single day . . . I mean I love the pills, you know, like they keep me alive. Its weird. Its a very
base kind of stark kind of thing that Im faced with in a very kind of human crisis, you know,
being between a rock and a hard place. . . . If I wasnt sick and I was taking the pills and nothing
was happening, then I could just completely forget that I had it. But lipodystrophy reminds
me all the time that Im HIV and this is the price Im paying for being kept alive.

Duncans narrative conveys what for many HIV-positive people is a fraught

choice between potential sickness (and death) and medically sustained survival, a
choice that often reveals the contingency and ambiguity of health. Clinical HIV
health, defined on the basis of normative quantities of viral copies and T-cells in
the blood, may conflict with experience, with feelings of being unwell, or looking
unwell phenomena produced by the very medication designed and consumed
for the purpose of health. This ambiguity is expressed in Duncans representation
of his HIV drugs as both beneficial and poisonous, and by his simultaneous love
and hate of them because they keep him, as he put it, healthy and alive and
because they do harm to his body in the process. This theme was echoed by
other participants in the study, like Max, another 40-year-old man:
I just think it increases the mental work of taking the medication because, you know, its that
paradox of taking something that is supposed to be good for you and yet youre also witnessing some stuff that shows that the body is also being really damaged at the same time. . . .
Youre taking really, really powerful drugs to have a desired outcome and there are costs to
that outcome.

This paradox seems to contest the logic of biomedicine. While antiretroviral

drugs, undeniably, are powerful therapies that can save and prolong life, in many
cases enhancing it, the triumph of modern medicine as a restorative power is
complicated by its manifold transformative potential, the unpredictable and
indelible imprints it may leave on bodies and selves. These imprints, these arbitrary trajectories, pose a challenge to the idea of a specific, causal sequence of

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disease-therapy-outcome. Yet while it makes sense to read lipodystrophy in this

way, the argument begs closer scrutiny, by way of a discussion of cultural
conceptions of bodies and therapeutic efficacy, to understand how the logic of
biomedicine is disrupted by, but also a productive force in the phenomenon of,
lipodystrophy.
Lived Bodies and Therapeutic Efficacy
The concept of pharmakon, with its insistence on ambiguity and ambivalence,
challenges biomedical notions of therapeutic causality and efficacy, but does not
radically reposition agency in the encounter between medicines and bodies. In
rethinking therapeutic efficacy, the theoretical concept of embodiment provides
a critical counterpoint to the Cartesian paradigm implicit in biomedical theory
and practice, invoking a phenomenological understanding of human bodies as
infused with consciousness and agency, as profoundly social and processual, and
as intersubjective mediums of experience and communication (Deleuze and
Guattari, 1987; Grosz, 1994; Leder, 1990; Merleau-Ponty, 1962). Seen from this
perspective, lived bodies are in a state of perpetual becoming or potentiality. Far
from machine-like matter, they tend to display an inscrutable and sometimes
frightening will of their own (Williams and Bendelow, 2000: 53). Illness is an
obvious example of this, of a bodys unpredictable expressions and energies. As
noted, when these complex corporeal processes encounter biomedicine, they are
reconfigured into observable biological signs that can be ameliorated by rational
biotechnical reorganization. But while the function and purpose of these technologies are to restore physiological order, lived bodies do not always and automatically respond in ways that coincide with the predictions or intentions of
medical science. Adverse effects and secondary pathologies, known as iatrogenesis, attest to the non-mechanical quality of medical drugs and bodies alike. As
Catherine Waldby (1999: 79) has argued:
The development of iatrogenic effects bear witness to the contingency of any relationship
between specificatory technology and lived body, the activity of a mutable bodily field which
does not simply receive and process a technical inscription in a sequence of cause and effect.
Rather any biotechnical intervention inscribes itself into a complex dynamic of corporeal
animation and relationship, which redistributes its intended effects according to its own
shifting logics.

Lipodystrophy is a striking example of a particular biotechnical inscription being

processed and redistributed by a body in unintended ways. The medical effort to
confront and chemically control HIV in specific interior spaces has coincidentally animated other body parts, creating disorder and unleashing a body out of

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control, a body partly resistant to medical restoration. These corporeal insurgencies, however, are often written into the cultural scripts of illness and
medicine in commonsensical ways. While the exact aetiology of lipodystrophy
is still relatively poorly understood, its representation as a medical side effect is
compatible with prevailing cultural conceptions of therapeutic efficacy, what
Montagne (1996) refers to as pharmacomythologies, conceptions that are seen
as fundamental principles and therefore constitute a productive part of daily life.
One such mythology is the notion that medicines produce one effect identified
as the main or primary effect, and that any other experience or response is incidental, subsidiary or subordinate, in other words, a side effect (Montagne, 1996:
13). This hierarchical taxonomy of effects, which is integral to the paradigm and
methodology of biomedicine, tends to reify pharmakon as remedy and marginalize the impact of its poisonous shadow, thus reinforcing the idea of medicines
as essentially lifesaving products and their prescription as exclusively therapeutic.
What this classification also does is posit therapeutic efficacy as universal and
given, rather than interpretable and ambiguous.
Since Medical Nemesis (1976), in which Ivan Illich mounts a scathing critique
of what he regards as the clinical, social and cultural institutionalization of iatrogenesis, the issue has received little critical attention. One exception is Nina
Etkins (1992) analysis of side effects as a social and cultural construct. An
anthropologist, Etkin draws on ethnographic material from Africa and elsewhere
to problematize pharmacomythologies in Western societies, arguing that the
classification of therapeutic outcomes into primary and side effect implies a
universal logic that simply does not hold true cross-culturally, nor in biomedicine itself. Making a case for the dynamic quality of biomedical therapeutics,
she gives several examples of how positive unintended effects of particular drugs
may be reclassified as primary effects when the drugs are remarketed. In other
instances, what is deemed a side effect by Western medicine may be construed
differently by another medical paradigm as a desired result or as a significant
indicator of therapeutic progress (for example, vomiting or sweating might be
seen as an indication of effective purging of the disease). The interpretation of
signs and symbols, Etkin contends, is deeply embedded in cultural meanings of
therapeutics and outcome (1992: 102).
That cultural context shapes notions of therapeutic efficacy is an observation
familiar to many anthropologists studying indigenous or biomedical health practices in non-Western societies (e.g. Desjarlais, 1992; Obeyesekere, 1980; OhnukiTierney, 1981; Taylor, 1988; Van der Geest and Whyte, 1988). Not only does this
observation affirm the capacity of medical drugs to carry meanings that produce
certain therapeutic expectations, it also suggests that the meanings invested in

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medicines can mediate peoples understanding of illness and their experience and
interpretation of actual bodily effects. While intellectually this embodies
compelling statements about culture, as Etkin states, it also represents real
problems for people as they adjust to biomedical technology in their efforts to
affect health (1992: 108). This is particularly relevant for those with chronic
illnesses such as HIV, for whom treatment is a life-long prospect and choice is
not always an option.
With this in mind, lets come back to narratives of lipodystrophy and explore
these in relation to cultural notions of therapeutic efficacy. In a contemporary
context of diverse and conflicting social discourses on health, well-being, and
quality of life, it is not surprising that HIV medicines are construed as both
remedy and poison in these narratives and tend to be framed by particular
normative ideas around bodies and health. However, these narratives, while
discussed individually here, regularly intersect in the interviews, as we saw with
Duncan, in ways that reveal the complexity of therapy and its corporeal effects,
rather than a simple dichotomy of good versus bad medicine.
HIV Drugs as Remedy
For medical therapy to be acceptable to people, its purpose must make sense,
including its capacity and effects (Helman, 1990: 122). At play in this process are
particular cultural representations of HIV and of health that are enacted and
reproduced through a set of specific medical practices, such as blood tests, dosing
regimes and compliance. These practices, which gauge but also define therapeutic
efficacy, are commonly framed at both clinical and community levels by a
discourse of anthropomorphic viral aggression, invoking images of an internal
battlefield where victory is constituted by an undetectable viral load.8 In this
discourse, the predicament and the remedy are clearly defined: scrupulous
compliance with a daily regimen of extremely potent drugs is seen as necessary
to outmanoeuvre and overpower a cunning virus that will mutate and begin to
replicate ferociously after only a few missed doses.
While this logic is starting to shift to a more experimental and multifaceted
approach to HIV therapy, it has been a forceful message in the treatment history
of many people with lipodystrophy, epitomized by the widely adopted hit early,
hit hard approach in HIV medicine (e.g. Ho, 1995) from the mid-1990s onwards.
It is within this context that narratives of lipodystrophy must be understood. In
conjunction with its clinical fetishization, an undetectable viral load constitutes
a powerful norm in a social domain where undetectability has a certain social
and sexual currency. This currency is intimated by a common colloquial slippage

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of undetectable viral load into zero viral load, evoking a kind of absence of
HIV, with all its enticing connotations of health and reduced risks of infectivity
and social disclosure (Ellard, 2002). Lipodystrophy, because of its association
with HIV, destabilizes this rendering of undetectability and the perceived choices
and freedoms it creates around social and sexual interactions. Medical discourse,
on the other hand, tends to fit lipodystrophy into its normative framework.
In narratives of HIV drugs as remedy, representations of lipodystrophy
differ in some respects from the common tendency to position unintended effects
within a pejorative rhetoric of medical non-compliance and misuse (Etkin,
1992: 100). Instead, it is generally acknowledged that the more compliant people
are with their HIV medication, the more likely they are to develop lipodystrophy, a predicament that is frequently subsumed within the discourse of
therapeutic efficacy and thus curiously incorporated into the logic of medicine.
That is, a certain conceptual slide occurs in this discourse from the imperative of
viral suppression to the reasoning that heavy-duty drugs are necessary to achieve
this aim and therefore side effects, though regrettable, are to be expected, a price
to be paid for the greater good of an undetectable viral load. Here, the production of a particular bodily norm takes precedence over other corporeal transformations which, in the case of lipodystrophy, tend to be construed as a
cosmetic concern in relation to the objectives of medical science. One participant, Ludwig, explained his priorities:
I think containing the virus is number one. Lipodystrophy is sort of, you know, a bit further
down that list. Provided I can have the current quality of life and contain the virus, Ill put up
with lipodystrophy.

Fiona, on the other hand, recalled her confusion when she began to experience
excessive weight loss as a result of her HIV medication while her blood tests
suggested a good clinical response:
[My doctor] had evidence to show that it was working, because my viral load was dropping
very rapidly. So he was urging me to just hang in there . . . I kind of had visions of, you know,
how you see people with AIDS and they have that really gaunt, wasted look and I guess I was
a bit scared that that was going to happen to me, that this in some way was a sign that I was
deteriorating whilst the evidence showed that that wasnt the case. So I was confused about
that . . . I kept giving myself positive reinforcements about the fact that the evidence was such
that I was doing well because my viral load was undetectable and my T-cells were stable. But
it was a bit scary to think that I might turn into a walking skeleton, I have to say.

The normative power of an undetectable viral load is evident in many of the

interviews and mediates interpretations of therapeutic efficacy and bodily effects.
Alexander, for example, when asked if lipodystrophy had changed his attitude
towards his HIV drugs, replied: No, not really, because, I mean, it seems to be

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working. So, you know, Ill just keep on with it, yeah. Similarly, to Ann, an
undetectable viral load was a sign that her drugs were working, in spite of her
body being, as she put it, ravaged by the medication: It was an enormous relief
when I got my first lot of results. I knew that even if the pills werent being very
beneficial to me, they were working on the virus. In several of the interviews,
this conception of therapeutic efficacy morphs into a kind of normalization of
iatrogenic effects. Stuart, a man with pronounced lipodystrophy, stated that: Its
part of being on the drugs and, you know, Ive got to be on the drugs. Ethan
elaborated:
If you need the medication to keep the virus in control then you need the medication, and if
having side effects is something that comes with that, then, to me, its like youve got to put
up with it unless its totally over the top. . . . But the alternative to not taking medication and
putting up with the side effects is the unknown, like possibly death or getting even sicker. That,
you know, could be ten times worse than having side effects. At the moment, side effects, nine
times out of ten, go hand in hand in some ways with the drugs and youve got to take the drugs
to keep alive and then put up with the side effects.

The sense of urgency around the disease, foregrounded by Ethan, and the short
history of treating it, was raised by other participants who commented that HIV
therapy is science on the run and that unintended effects like lipodystrophy
need to be understood and accepted in that context because, ultimately, survival
is at stake. The prospect of illness and death unquestionably puts lipodystrophy
and other medical complications into perspective, but it also has a coincidental
and somewhat problematic tendency to neutralize potential ethical concerns
about the practices and accountability of pharmaceutical drug companies.

HIV Drugs as Poison

While the logic of medicine is operative in lipodystrophy to a certain extent, as
suggested in these accounts, there is another narrative that runs counter to and
disrupts this logic, but not in any straightforward way. In this narrative, which
is also present in the interviews, it is the antiretroviral drugs that are pathologized, not necessarily because of any doubts about their clinical efficacy as far as
the virus is concerned, but because their perceived toxic effects are seen as
inverting the very values and logic through which they are discursively
positioned. Joseph is an example of this, a 43-year-old man who had stopped
taking his HIV drugs two years prior to our interview. Despite responding well
to his therapy from a clinical point of view, he decided to stop, with the support
of his doctor, when his legs began to progressively waste. He interpreted this as

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a sign that the drugs were not, in fact, working, despite his partners objections.
If the pills are working, dont worry about your body, his partner had reassured:
But, you know, thats not good enough. The pills werent working as far as I was concerned
because the body wasnt looking like it was working. Something is wrong, you know. Im
taking a pill, this is happening, so something is not right.

Here, fat loss (lipoatrophy) is not perceived as an outcome secondary to a

primary clinical effect. Rather, Joseph sees his wasting legs as a negation of the
restorative promise of therapy, as a reaction to flawed medicine. In his and similar
accounts, it is the total drug effect that is of concern, rather than the capacity of
HIV drugs to suppress the virus, which few doubt. In other words, therapeutic
efficacy is not equated with an undetectable viral load alone, in this view, but
with overall well-being, and antiretroviral drugs are seen as inimical to, and
incompatible with, this state. Max explained: These drugs arent to be sniffed at.
Theyre nasty. Very nasty. Theyre not good for you. HIV is worse, but theyre
not good for you. Thus, in narratives of HIV drugs as poison, undetectability
collides with a different normative conception of health, with a body that is
perceived as made sick by the drugs, rather than well. I feel toxic, my whole
body feels just toxic, is how Philip described it. Lipodystrophy is construed
accordingly, as a result of chemical trauma; chemicals that seep into and poison
cells and tissues. Other symptoms, such as chronic diarrhoea and nausea, are
interpreted in a similar manner, as a sign of chemical saturation, a leakage of
toxins. You can smell the drugs in the urine, George stated to illustrate their
potency and what he perceived as their jarring, unnatural presence in his body,
a common theme in this narrative. There is just something about HIV meds,
Max said, recalling his first encounter:
I remember very distinctly taking my first AZT tablet. I took it down at Obelisk beach because
thats got significance for me from childhood, and I just remember swallowing the pill and just
visualized every cell in my body just going, what the fuck have you just put into me?, you
know. I mean, really, it was quite an enormous, you know, move.

This notion of HIV drugs as toxic and harmful has always been part of HIV
discourses at the community level (e.g. Lauritsen, 1990). It was particularly
prevalent during the era of AZT, and has gained momentum again as long-term
effects of HAART are beginning to show. At the heart of this notion are the paradoxes of health engendered by the need to control the virus versus the life of the
body. Negotiating health through this complex prism of chemicals, bodily
symptoms, abstract blood counts and social discourses can be bewildering: It
doesnt make sense, is how Max described it. After years of going on and off
treatment in a cycle of fluctuating blood counts and iatrogenic effects, Max

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decided to stop his drugs again one year ago because of endless diarrhoea and
progressing lipodystrophy:
I constantly felt poisoned. I felt like I was really tainted. . . . Thirteen years ago I was willing
to take whatever and now I have real issues with it. What do I think about these drugs? Im
quite happy to put off dying, but Im not willing to take this medication. It doesnt make sense.
I know it doesnt make sense. . . . What do I feel about it? I just know that its having an effect
right down to my very, you know, the genetics of me. . . . I cant answer I could try and
answer it to myself because I know that Im looking at having to go back on medication and
I will do begrudgingly because I just hate the idea and its really weird.

What these stories reveal is that making sense of HIV drugs is complicated by
their productive capacities. The unintended corporeal transformations they bring
about, whether assimilated into the logic of biomedicine or construed as contradictory to it, partly dislocate the restorative value inherent in therapeutic
practice. In lipodystrophy, the production of a particular notion of HIV health
has produced a body that can also be interpreted as unhealthy because of its
appearance. The application of therapy, facilitated by an internal mapping of
HIV, has produced an external map of the disease, profoundly affecting how
HIV is experienced and lived. As such, lipodystrophy marks both a continuation
and a significant shift in the corporeality of HIV/AIDS.
Mappings of HIV, Hybrid Bodies
It just makes you feel like the face of HIV. Its like people can look at you and know youre
HIV positive. . . . People see sickness, you know. It makes you feel like shit. (Jim)

At a time when HIV has become increasingly invisible, as I note later, having
lipodystrophy means having to adjust to a certain notion of being HIV positive,
one that is visible and identifiable, at least in communities where lipodystrophy
is well known. For many, it is a socially and sexually isolating experience. Several
participants spoke of loss of intimacy, and of avoiding particular social spaces and
activities for fear of rejection or because of feeling too self-conscious about their
appearance. Many simply took for granted that others would find them unattractive and undesirable, an assumption indubitably rooted in the social stigma
of HIV, and illness generally. We live in a profoundly healthist culture, as
Robert Crawford (1994) argues, where health constitutes an important domain
for the production of socially and morally charged meanings around self and
others, giving rise to normative constructions of healthy and sick bodies that
are mobilized to establish identity and status, to include and exclude. The classic
model of health/beauty and illness/ugliness pervades such constructions and is
part of the cultural baggage that accompanies any representation of the ill or

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healthy body, creating a distinct, perceptible boundary (Gilman, 1995: 119). By

making disease visible in this way, Sander Gilman argues, the cultural fears and
anxieties evoked by disease are domesticated, the loss of control removed, as the
threat of death and dissolution is located and contained in the body of the Other,
away from the self (1988: 13). The construction of the AIDS body is a poignant
example.
In the early epidemic, media images of bodies visibly ravaged by disease came
to dominate representations of HIV/AIDS, powerfully shaping public perceptions. Reduced to a collection of grisly symptoms, the ugly AIDS body epitomized and clearly mapped out the difference of those affected. Extreme thinness
and the purple skin blotches of Kaposis sarcoma became the symbolic stigmata
of the unhealthy, contagious Other, of death and moral panic. This cultural
inscription of bodies with HIV found its imaginative force in the construction of
AIDS as a sexually transmitted disease associated with homosexuality, a notion
tangled in a moral economy of sin and damnation. In the media, provocative
images of young men with prematurely degenerated bodies served as a reproving illustration of the supposed consequences of deviant and immoral lifestyles
(Gilman, 1988: 245312; Kitzinger, 1995).
The stigma and prejudices that fuelled images of this kind were fiercely fought
by AIDS activists who demanded that people with HIV/AIDS be portrayed not
as a disease, or as diseased, but as individuals with diverse illness experiences and
social positions. This broader struggle to de-stigmatize and normalize the virus
contributed to a different representative genre of HIV/AIDS corporeality,
particularly in public health images. In HIV prevention campaigns, the emphasis
was now on the non-Otherness of those with HIV/AIDS, with the aim to bring
home the message that the virus does not discriminate (it can happen to anyone)
nor physically advertise itself (you cant tell whos got it by looking at them)
(see Kitzinger, 1995). Significantly, and in stark contrast to early media images,
HIV/AIDS is repositioned within a positive, optimistic discourse of health rather
than sickness, most notably in advertisements for antiretroviral drugs and in HIV
prevention campaigns where health is signalled through an iconography of
beauty and vitality (in a continuation of the classic model referred to by
Gilman) and promoted as a precious quality attained through the consumption
of medicines or safeguarded by the use of condoms. Death and disease figure as
abstractions in this world of images something implied, yet separate from the
erotic, living body (Gilman, 1995). In his analysis of HIV-related public health
posters in the late 1980s and 1990s, Gilman notes the virtual absence of images
of the diseased body (1995: 118).
In Australia, this absence is echoed in the contemporary social invisibility of

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HIV/AIDS generally, including in affected communities. What was once a very

public crisis inspiring collective action has largely become a discreet health
management exercise on the part of individuals, what Kane Race (2001a) aptly
refers to as an undetectable crisis. New treatments and undetectable viral loads
have enabled HIV/AIDS to fade from the public arena into the anonymity of
private lives, consequently expanding peoples choices around HIV disclosure
and how to live with the virus, but with the concurrent effect of depoliticizing
and individualizing HIV. Lipodystrophy, however, destabilizes these shifts and
choices by rendering HIV re-detectable, by forcing it out of its containment and
concealment in the private realm and into collective view again through a new,
conspicuous corporeality. This process makes not only some HIV positive
people visible, but also the stigma still attached to HIV, most poignantly in
affected communities themselves.
If the early epidemic in Australia was defined by communal efforts to challenge stigma and fears of HIV/AIDS in society at large, lipodystrophy, as many
of the participants observed, is enveloped by silence and avoidance in the
communities where it is most prevalent. Basically unknown to broader society,
lipodystrophy has become something of a taboo in Australian gay communities,
an awkward reminder of times past and an ominous sign of shortcomings in the
current, supposedly triumphant fight against AIDS. As the new face of HIV,
lipodystrophy is swept under the social carpet, largely consigned as an individual
problem rather than a collective or political concern. Its public presence on the
streets of gay neighbourhoods is not matched by any public dialogue of what
lipodystrophy means, not just for those affected by it, but for communities as a
whole. For something so visible, lipodystrophy is strangely invisible.
In this paradoxical position of in/visibility, lipodystrophy thus embodies both
shifts and continuities in the epidemic. What lipodystrophy also embodies, as I
have argued, is the productive potential of medical drugs, their capacity to
produce therapeutic contradictions, new corporealities and particular medical
subjects. The object of antiretroviral therapy is viral suppression, but lipodystrophy challenges the common belief that medicines inscribe themselves on passive
matter in a logical sequence of cause and effect (Waldby, 1999: 79). Rather, as
Dick Willems argues, medical therapy transforms bodies into hybrids of living
material and chemical substances (1998: 11516). In other words, continued use
of drugs generates new and durable links between humans and biotechnology,
productive links that define diseases and create new identities by reorganizing
bodies (1998: 11618). As this article has shown, antiretroviral drugs can reorganize bodies and contribute to a differentiation of HIV by making some people
visible and not others, thus affecting the social dynamics of how HIV is, and can,

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be lived. Lipodystrophy is testimony to this productive capacity of pharmakon to

shape bodies and lives in intended and unintended ways.
Notes
1. Note that Rofes (1998) suggests that several co-factors may have contributed to a decline in
AIDS-related deaths in the mid-1990s.
2. HIV-related immunodeficiency is associated with a number of viral, fungal, and bacterial infections and malignancies. Mild immune deficiency is commonly indicated by a variety of persistent oral,
skin, and genital conditions, such as shingles, herpes, warts, lesions on face, neck, genital area
(molluscum contagiosum), bruises, skin rashes (e.g. psoriasis, seborrhoeic dermatitis), oral thrush
(oropharyngeal candidiasis), mouth ulcers, gum diseases (e.g. acute necrotizing ulcerative gingivitis)
and respiratory infections. More severe immunodeficiency is commonly associated with HIV-related
pneumonia (pneumocystis carinii), mycobacterial infections (e.g. mycobacterium avium), lymphoma,
diarrhoeal diseases (e.g. cryptosporidium, salmonella), neurological conditions (e.g. dementia, toxoplasmosis of the brain, cryptococcal meningitis) and so forth (Dore et al., 2001; Stewart, 1997).
3. Guidelines for initiating treatment have changed over the years as the medical science of
HIV/AIDS keeps evolving (e.g. Day, 2000). See for example Guidelines for the Use of Antiretroviral
Agents in HIV-infected Adults and Adolescents, November 2003, AIDSInfo, National Institute of
Health, US Department of Health and Human Services, http://aidsinfo.nih.gov/guidelines/adult\AA_
111003.pdf (accessed 21 January 2004) and 2001 Australian Antiretroviral Guidelines (draft), October
2001, HIV/AIDS Clinical Trials and Treatments Advisory Committee of the Australian National
Council on AIDS and Related Diseases, www.ashm.org.au/uploadFile/guidelines2.pdf (accessed 21
January 2004).
4. See documents referred to in note 3.
5. For a discussion of scientific categories of disease versus lived experiences of illness, see for
example Frank (1995), Helman (1990) and Kleinman (1988; 1995).
6. There is still a great deal that is unknown about lipodystrophy in terms of its causes and prevalence. Two people taking the same HIV drugs do not necessarily experience the same kind or degree
of symptoms, if any at all. Considerable research has taken place to determine whether lipodystrophy
is a single syndrome or a number of conditions caused by different classes of HIV drugs. For example,
it is still unclear whether lipodystrophy and lipoatrophy are two separate phenomena. A common
theory is that protease inhibitors play a role in lipodystrophy (fat redistribution), but nucleoside
analogues are also thought to play a role, particularly in relation to lipoatrophy (fat loss). As is the
case with many HIV treatment-related effects, it is also unclear to what extent these conditions are
caused by the drugs or by HIV itself, or a combination of both. In addition, some changes in body
fat are common features of normal aging. Generally, experts agree that the possibility of developing
body shape changes increases with age and length of HIV treatment. On the whole, it is likely that
these body shape changes are a result of complex interactions between a number of co-factors (age,
body mass index, gender, different classes of drugs, length of infection, length of treatment, lifestyle
and family history) that are yet to be fully understood (e.g. Bass, 2001; Carr, 2003; Carr et al., 2003;
Carter et al., 2001; Miller et al., 2003; Nass, 2003). In this article I will refer to body shape changes in
general as lipodystrophy, except when referring to fat loss specifically, in which case the term
lipoatrophy will be used.
7. Other metabolic complications associated with lipodystrophy include insulin resistance and high
levels of harmful fats in the blood (cholesterol and triglycerides), which increase the risk of diabetes
and heart disease respectively. The sometimes astonishing levels of cholesterol may also erupt as white
lumps on the surface of the body and face.

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8. For a discussion of war metaphors and other forms of significations in HIV medicine, and in
immunology and medical science generally, see Crawford (1994), Haraway (1989), Martin (1992,
1994), Rosello (1998), Sontag (1990) and Treichler (1991).

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Asha Persson is a social anthropologist and ethnographer by training and a research associate at the
National Centre in HIV Social Research at the University of New South Wales. Her research interests
include the interface of society/medicine/bodies in the production of meanings, practices and experiences of health and illness.