Adherence and the Lie in a HIV Prevention Clinical Trial

Adherence and the Lie in a HIV Prevention Clinical Trial.pdf Jonathan Stadler, Fiona Scorgie, Eirik Saethre Medical Anthropology, 2016; Read full journal publication online

The lie has been presented as a performance that protects identities against moral judgement in the context of power imbalances. Within doctor-patient interactions, lies can reinforce but also challenge power relations:

By not fully disclosing diagnoses or side effects, medical practitioners exert their authority, but there is scope, too, for the patient’s resistance: the patient can remain silent or lie.

Taking inspiration from conceptualisations of the lie as a source of power and as a performance, this paper explores allegations of lying that were made about a HIV prevention clinical trial.

The VOICE trial

The “Vaginal and Oral Interventions to Control the Epidemic” (VOICE) trial took place between 2009 and 2012 in 15 clinic sites in South Africa, Zimbabwe, and Uganda and enrolled 5029 HIV negative women. It tested the effectiveness of a daily dose of antiretrovirals in tablet form or as a vaginal gel by comparing these to matching placebos. In March 2013 the final results of the trial—that none of the products tested were effective in preventing HIV acquisition—were made public. This was attributed to insufficient adherence to the study drug, although participants reported good adherence, defined as daily application of the gel and daily tablet use.

Findings

Following in-depth qualitative research, the authors found that VOICE women presented in interviews as fully adherent only occasionally missing a dose, yet biological testing contradicted their statements – with an average plasma drug detection level of 33%.

Conclusion

VOICE was more than a clinical trial to test the effectiveness of HIV prevention technologies. It became an opportunity for women to assert credibility, to perform a respectable reputation in the face of anticipated moral judgment. In the context of relentless unemployment and financial insecurity, and in the uncertain, transient spaces of migration, women could forge new moral subjectivities. They did so with a keen awareness of the gendered moral scripts that continue to be embraced by local AIDS discourses.

Trial participants sought to (re)define themselves as virtuous women, using the apparatus of the trial to do so. Reputations were managed and promiscuity scripts rejected, as women crafted an image of themselves as responsible agents looking toward a better future. Crucially, this rested on a performance of being the ‘perfect trial participant what is relevant about women’s socioeconomic context is not only poverty, migration and social inequality, but also the influence of a profoundly stubborn AIDS stigma and of gendered scripts that define female and male sexualities in particularly restrictive ways.

Online journal publication available here.

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