Microsoft word - rosengarten paper for reframing the social

Reframing the social dimensions of HIV: the case of PrEP

Marsha Rosengarten, Centre for the Study of Invention and Social Process, Department of
Sociology, Goldsmiths, University of London.
The question that I’m to address in the next 10 mins or so is: how do I see the relationship
between biomedical prevention (ART for prevention) and social research?

To do this I’m going to focus primarily on PrEP –pre-exposure prophylaxis—as ‘one pill a day’
comprising of either one or two HIV antiretroviral drugs. i
In 2008/9. I interviewed the PIs involved with trails already taking place and as a result I have
begun to think it may not be a question of whether PrEP will work but, rather, how will it work?ii
There is already convincing evidence to show that the drugs can prevent mother to child transmission and may be effective as a form of post exposure prophylaxis (AVAC, 2005). Moreover, the existing availability of the drugs used in PrEP means that, if their efficacy is established through RCTs-efficacy which is anticipated to be partial—their legitimate prescribing for prevention would be immediate (AVAC, 2008; Paxton et al., 2007). However, the challenges of PrEP seem to be immense and in a way they are a perfect illustration the inter-relational nature of the field that I want to stress in this paper. To summarise these in the brief time available, key issues/questions noted amongst researchers and advocates are: Risk of drug side effectsiii Potential disinhibiting effect on condom use leading to HIV transmission and/or other STIs Likely partial efficacy and partial effectiveness giving rise to infections and, linked with this and possibly disinhibition, infections that become drug resistance due to presence of antiretrovirals at the outset of viral replication. How would it be paid for and how could necessary medical infrastructure be provided to deal with potential side effects and monitoring of HIV incidence. Potential black market/unorthodox use. If considered sufficiently efficacious, it will be offered to participants in vaccine trials with the effect of reducing infection rates and making it even more difficult to conduct vaccine research.
This painting by Goya has been used by Michel Serres, a theorist in Social Studies of Science
and Technology, to draw attention to the inter-relational nature of human and non-human
entities (Oswell 2006). To read this as an image of just two men fighting is to ignore the role of
the clubs and the mud as active in the outcome. With every blow which the peasants give each
other, the deeper in the mud they sink. As an allegory for HIV, it won’t come as a surprise that
we need to account for the contributory presence of the virus and also technology, here
analogous to the clubs. Yet although it seems almost absurd to actually state that we are all
here because of the actions of the virus, it is easy to leave aside its contributory presence and
that of antiretrovirals in our notion of ‘the social’.
What I am proposing is that by being more attentive to the dynamics of human and non-human interminglings, we may better understand the workings of our interventions. Two examples that helpful for illustrating the intermingling of human and non-humans are the viral load test and increases in unprotected anal intercourse amongst gay men. A viral load test result is a mix of viral particles and the particular design of the testing technology plus whether antiretrovirals are present, if so, whether there has been good dosing adherence, whether the virus has mutated. Increases in unprotected anal intercourse emerge from the coming together of gay men and science, which has reconstituted risk as variable in the presence of antiretrovirals. This more collaborative view of the field—with its attention to more than human relations—
enables us to get away from the deficit model, that is, the presumption of neoliberal agents
noted by Sue Kippax in her paper (2010) and Barry Adam (2005) that tends to responsibilise
those affected by HIV and is evident in concepts such as ‘disinhibition,’ ‘risk compensation,’
‘imperfect dosing adherence,’ ‘complacency’, or promiscuity. Secondly, and this is what I think is
especially valuable, it enables us to think of the field as emergent rather than given and offers a
methodology suited to the changing nature of the epidemic.
Slide 4
In a study of the contraceptive pill, Keulartz and colleagues (2004), state that
‘technological artifacts embody particular options and restrictions: they invite certain kinds of action or behavior and discourage other ones, and thus reinforce or alter existing role divisions and power structures. The normative ramifications of technological artifacts are rarely limited to the practice for which they are intended but often also filter through into associated or adjacent practices.’ We can see the ramifications of the contraceptive pill filtering into all aspects of life through its change to gender roles and expectations. Antiretrovirals also embody particular options and restrictions and their effects filter into other areas. The requirement of near perfect dosing adherence is one example; the prevention of vertical transmission which also requires prohibiting breast feeding is another. PrEP, in particular, will similarly ‘invite certain kinds of action or behavior and discourage other ones’. For instance, it could enable some women to protect themselves in a manner not otherwise available and this could have important associative effects with the status of women as well as the epidemic more generally. But some worry that it could also result in women becoming burdened in a new way, their bodies—in contrast to their male partners—being subject to the risk of drugs in a manner analogous with the contraceptive pill. It might also invite what is anticipated as ‘disinhibition’. But we could also ask if a dislike (to put it mildly) of antiretrovirals amongst those wishing to prevent becoming infected could be harnessed to reinvest condoms as preferable? To take up Sue Kippax’s argument for the inclusion of social research in clinical trials, it is apparent that the design of any antiretroviral technology incorporates certain expectations of the user. For Keulartz and colleagues (2004), it would be appropriate to incorporate into trials a study of the normative dimensions of PrEP: how it constitutes a certain requirements, including
expectations of sole agency and the implications and potential in this. This seems especially
important given the expectation of ‘partial efficacy’ –due to bodily differences such as size,
gender, genetics (Grant et al 2005)—and, more certainly, ‘partial effectiveness which is
attributed to poor adherence on the part of the user.
If we did undertake such research, what would or could be the outcomes?
Again drawing on the contraceptive pill, it is possible to observe how a biomedical intervention
can be modified to incorporate lifestyle requirements. Hormonal implants have been devised
which do not rely on user adherence. The implants also incorporate providers in their design
and, arguably, repositions providers and the pharmaceutical component as accountable or
responsible in addition to or, in place of, the lay user (Keulartz et al 2004). With antiretrovirals
we can see that the issue of adherence has been taken up by some pharmaceutical companies
and certain niche markets have been obtained by repackaging different drugs into one pill,
where possible (Rosengarten, 2009). However, I want to add that I do not see this shift or those
with contraception as ideal. As we know antiretroviral drugs can still be quite nasty, not effective
against drug resistance and/or expensive in low and middle income countries. Nevertheless we
can see from these changes do show us that biomedical interventions can be modified. They
are not as fixed as they may seem and therefore efficacy testing as an activity that precedes
evaluations of effectiveness may leave us short.
Kane Race says in reference to how the internet is changing sexual and risk subjectivities
that it is not that sexual subjects are incorporating new technologies and discourse into their
prevention repertoires but, rather, new sexual subjects are emerging in relation with
ongoing technological production and mediation.’ (2010:7). This requires giving up the idea—
well entrenched—that bodies, drugs, virus, sexual acts—exist in ways that matter before they
come into relation with each other. Bodies (and drugs, virus, sexual acts) may be ‘interpreted
not so much according to prior meanings or identities but, instead, with reference to what
they do.’ (Potts, 2004:22).
SLIDE 5

In relation to PrEP, this suggests we replace the idea that there is a person at risk (eg
‘woman’, man who has sex with other men) who may or may not be able to use PrEP
effectively with the person and PrEP as a hyphenated (and multiple) entity, an association
which enables and disenables possible prevention outcomes (Potts, 2004:22). In short, the
PrEP user will emerge in association with multiple phenomena including those noted by
Grant et al when they say:
‘ efficacy [of PrEP] may differ depending on .differences in transmission efficiency, drug penetration into tissues, or the types of cells that are first exposed to virus. Body size . directly affects drug levels that may impinge on efficacy and side effects. Other variables may be gender, genetics, adherence, gray [sic] and black markets for drugs, access to safe storage, and social circumstances. (Grant et al., 2005: 2171). In conclusion, by shifting our conceptual understanding of the social and biomedical, interventions become available to be known and worked in different ways. References:

Adam, B.(2005) ‘Constructing the neoliberal sexual actor: responsibility and care
of the self in the discourse of barebackers’. Culture, Health & Sexuality 7 (4), 333–346.
AVAC (AIDS Vaccine Advocacy Coalition). (2005). Will a pill a day prevent HIV?
Anticipating the results of PREP trials. New York: AVAC.
AVAC. (2008). Anticipating the results of PrEP trials: a powerful new HIV prevention
tool may be on the horizon. A publication from AVAC’s Anticipating and
Understanding Results series, August 2008.
Grant, R.M., Buchbinder, S., Cates, W., Clarke, E., Coates, T., Cohen, MS., Delaney, M.,
Flores, G., Goicochea, P., Gonsalves, G., Harrington, M., Lama, J.R., MacQueen, K.M., Moore,
J.P., Peterson, L., Sanchez, J., Thompson, M. and Wainberg, M.A. (2005) ‘AIDS: Promote HIV
Chemoprophylaxis Research, Don’t Prevent It.’ Science 30, September, 2170-2171.
Keulartz,J., Schermer,M., Korthals, M. & Swierstra, T. ‘ Ethics in Technological Culture: A
Programmatic Proposal for a Pragmatist Approach’ Science Technology Human Values 2004;
29; 3.
Kippax, S. (2010) ‘Reasserting the Social in a Biomedical Epidemic: The Case of HIV-
Prevention’ Paper given Reframing the Social Dimensions of HIV: the case of treatment as
prevention’ London, March 5, 2010
Oswell, D. (2006) Culture and Society An Introduction to Cultural Studies Sage Publications Ltd.
Paxton, L. A., Hope, T., & Jaffe, H. W. (2007). Pre-exposure prophylaxis for HIV
infection: what if it works? Lancet, 370, 89–93.
Potts, A (2004) ‘Deleuze on Viagra (Or, What Can a ‘Viagra-body’ Do?) Body & Society Vol
10(1):17-36.
Race, K. (in press) ‘Click here for HIV status: Shifting templates of sexual negotiation’ Emotion,
Space and Society
Rosengarten, M (2009) HIV Interventions: Biomedicine and the Traffic in Information and Flesh,
University of Washington Press.
ROSENGARTEN, M. & Michael, M. (2009) ‘The performative function of expectations in translating
treatment to prevention: the case of HIV pre-exposure prophylaxis or PrEP’ Social Science &
Medicine, Volume 69, Issue 7, October:1049-1055
i Tenofovir on its own, or Tenofovir combined with Emtricitibine (FTC) and called Truvada. Both drugs are nucleotide reverse transcriptase inhibitors. Both drugs are manufactured by Gilead Sciences and Gilead produces the product and the placebo for trialling. However, Gilead is not directly involved in any of the trials. We were hoping to have Mike Youle here to provide a biomedical view of Prep but he is in fact in the US talking to Merck about running trials for Prep using their drugs. The rationale for trialling these drugs as a form of pre-exposure (chemo)prophylaxis is based on the following: Continuing high rates of infection (4.5 to 5 million people each year), despite existing prevention technologies, namely condoms and clean needles. it is unlikely that an HIV vaccine will be available in less than 10 years, and topical microbicide candidates still in early stages of development. evidence that antiretrovirals can prevent infection from mother-to-child during pregnancy and labour (MTCP); and may prevent infection post exposure if a course is commenced within 72 hours. a small number of relatively convincing animal studies of PrEP. the antiretroviral drugs proposed for PrEP have relatively favourable drug resistance profiles and fewer side effects compared to other antiretrovirals and, importantly, the drugs are already licensed for prescribing (Gilead has given over licensing agreements for their production in 97 low and middle income countries). (AVAC, 2005) ii See Rosengarten, M. & Michael, M. (2009) ‘The performative function of expectations in translating treatment to prevention: the case of HIV pre-exposure prophylaxis or PrEP’ Social Science & Medicine, Volume 69, Issue 7, October:1049-1055. iii Noted side effects are nauseau, diarrhea, vomiting and intestinal gas. There is also some evidence that Tenofovir may affect the liver or kidneys in people with HIV, or result in a small decrease in bone density in some patients (see Paxton et al., 2007).

Source: http://www.odi.org.uk/events/docs/3820.pdf