Distraction Free Reading

PrEP on Trial: the Future of HIV in Indonesian Policy Worlds

In 2012, the first pre-exposure prophylaxis (PrEP) drugs, billed as a pill a day to prevent HIV, were authorized for use in the United States. Heralded as a transformative prevention technology for gay men and trans women in particular, one that encouraged new forms of self-management and risk mitigation practices alongside condoms, testing, and treatment, PrEP has since been incorporated into the global HIV prevention toolkit. In reports, policy documents, and community organizations, PrEP is uniformly described as necessary to accelerate the HIV control response and meet the global target of the “end of AIDS” by 2030.

In line with this dominant policy narrative, governments reliant on international donor funding for HIV programs are now encouraged to incorporate PrEP into HIV programs for MSM, transgender women and other “key populations” assessed as meeting a specific risk profile. This is the case for Indonesia, which formally approved PrEP for a trial in 2021 (United States Agency for International Development (USAID) 2021). Although initially announced in 2019 with a considerable degree of community support, Indonesia’s PrEP trial was postponed both due to the COVID-19 pandemic and subsequent bureaucratic delays. Nevertheless, with significant pressure from international donors and support from the Global Fund, USAID, and Australia’s Department of Foreign Affairs and Trade, a PrEP trial commenced in April 2022 across seven provinces in Indonesia. Key populations who agreed to undertake an array of tests and routine clinical monitoring, would obtain access to a 30-day supply of a single pill combining tenofovir disoproxil fumarate (TDF) and emtricitabine (FTC) – generic Truvada – from one of 34 primary health clinics at no cost. As it circulates in policy, clinical, and community spaces, PrEP is transforming the temporal horizon for HIV in Indonesia and other postcolonial settings where access to healthcare remains thwarted by entrenched global inequalities.

When PrEP began to circulate in Euro-American gay communities in the mid-2010s, it was seen as having a transformative effect on sexual cultures, concepts of risk, and forms of morality. Tim Dean proclaimed the role of this new technology in establishing an “antiviral paradigm” in which incorporation into biomedical HIV technologies established new, individualised forms of surveillance via “quantifiable indicators of health” (2015, 17). Kane Race described PrEP as a “reluctant object,” a status conferred by its, “putative association with the supposed excesses of unbridled sex” (2016, 6). Race identified how the scientific field of HIV operates to manage the possibilities of sex as an “event” – roughly, a transformative encounter that might be generative of alternative forms of community and relationship – a frame that prevents not only alternative ways of considering the meanings of sex, but of conducting scientific research. This early queer theoretical interest in PrEP considered how “subjects and objects are coproduced” in doing so highlighting “a more active role for research practices than might usually be assumed” (Race 2016, 25). As an ethnographer following the PrEP trial in Indonesia, I am interested in what it reveals about a specific “problem in the social arrangement of knowledge” (Race 2016, 9), albeit one embedded within specific Indonesian histories. What kind of queer theoretical frameworks might be gleaned from addressing an emergent PrEP trial in Indonesia?

In this essay, I draw on a range of ethnographic data, including grey literature and participant observation in webinars and meetings with various actors involved in the PrEP trial since it began in April 2022. The research in this essay emerges out of my participation as an ethnographer of HIV testing and treatment, primarily with MSM and transgender community organizations, with whom I have worked since 2014. I therefore draw on a long-term ethnographic engagement which overlaps roughly with the period that saw emergence of the widespread rollout of testing and treatment in Indonesia (Lazuardi 2019). As a result, I consider the implementation of the PrEP trial within the longer historical arc of the consolidation of a dominant global policy framing commonly glossed as the “end of AIDS.” This concept, usually assessed in light of a reliance on biomedical technologies, emerged out of complex shifts in the political economy of HIV in the 2000s and 2010s. Thurka Sangaramoorthy (2018, 983) has described the centrality of a “chronicity model” to understanding an incipient “end of AIDS,” one in which HIV moves away from a death sentence to a manageable condition. Yet as Sangaramoorthy describes, this re-scripting obscures how, “HIV chronicity [is] induced by biotechnological advances and as on-going crises in particular communities” and in turn “masks the continued disadvantaging of those who are poor and socially marginalised” (2018, 984).

Indeed, the global inequality of the HIV response is central to shaping opportunities for participation in the very format of the “PrEP trial” (percontohan PrEP) in 2021, and the ongoing inequalities of access to the “treatment as prevention” technologies that preceded it. A requirement that nations plan for PrEP as part of prevention strategies to be eligible for funding from USAID’s U.S. President’s Emergency Plan for AIDS Relief (PEPFAR) from 2020 onwards appears to have accelerated the rollout (FHI 360 2020). As a result of initial delays in implementation, the medications first procured for the trial have an expiry date at the end of 2022, and although more appear to be on the way, this date looms large as a major imperative to accelerate the pace of the trial. These political and economic dynamics of the PrEP trial, in which national interests are pitted against those of international actors, bring to mind longer colonial histories that position Indonesia unequally in access to medical and scientific knowledge. Celia Lowe (2019, 115) outlined how Indonesia’s response to preventing the H1N1 epidemic lay in it asserting “viral sovereignty,” wresting control of avian influenza from the international community, “by positing a unique Indonesian body” which was “both resistant to influenza and imbued with the historical memory of Indonesia’s colonial experience” (2019, 115). HIV and AIDS in Indonesia too has historically been framed in similar terms, frequently in terms of a recourse to distinctions drawn between Indonesian and Western norms of sexuality and morality (Kroeger 2003). Yet even as global health apparatuses sit in a tense relationship with national health authorities, HIV paradigmatically involves a wide range of actors, specifically communities of MSM and trans women, who actively contest and reframe such narratives.  In Indonesia, and potentially other postcolonial contexts, queer methods for addressing PrEP must grapple with dynamic relations between scientific objects and social subjects in light of ongoing forms of colonial, racial and economic inequality.

One gets the sense from official reports that Indonesia has been anticipating PrEP for some time. Even as Indonesia faced some of the highest reported rates of new infections among MSM in the mid-2010s, PrEP received a relatively cautious reception from government officials. The mid-2010s was also the moment when middle class MSM in began purchasing PrEP from abroad, particularly from Thailand (Irwanto et al. 2017). Although a handful of conservative health officials and religious figures referred to PrEP in moralistic terms, suggesting that it would promote “free sex,” critiques from the government appeared on the whole to be much more muted. In 2016, Wiendra Waworuntu, the Director of Prevention and Management of Infectious Diseases at the Department of Health said, “I can’t say whether PrEP is good or not, because we haven’t yet had a trial… although we are in the process of starting preparation for the trial” (Hidayat 2016). The technical guidelines for the PrEP rollout published by the Ministry of Health reiterate the need to advance it as part of Indonesia’s HIV prevention strategy. As an epistemic object, then, PrEP was more often framed on de-politicized and technical terms that facilitated its incorporation into existing bureaucratic technologies. In a context where Islam is a growing source of political authority and the criminalization of same-sex sexuality remains on the legislative agenda, such recourse to scientific neutrality might be glossed as a strategic effort to ensure the smooth passage of PrEP.

My interest in PrEP in Indonesia began in 2020, when condoms began to disappear from funded outreach programs. They did not return to programs until the middle of 2022. Although the origins of the condom shortages were complex, and related to a series of bureaucratic processes, supply chain issues, as well as a politics of morality, their disappearance was also tied to PrEP by the community workers I spoke to over this period. Although condoms often circulated as a comparison with PrEP in popular reporting, they did so in ways that sat distinct from Euro-American contexts, where they had long “manage[d] communal fears about sexual excess in the era of AIDS, providing not only a latex barrier but also symbolic reassurance that gay sex might in some way be made ‘safe’” (Race 2016, 14). After all, widespread access to condoms for MSM and trans women through programs was never assured in Indonesia, as condom stock outs in 2020 and 2021 demonstrated clearly. One person, who imported generic Truvada prior to the trial from Bangkok independently, likened Indonesia’s slow rollout of PrEP directly to historical concerns about condoms: “It’s the same argument people often have about condoms, that giving condoms means encouraging people to have free sex” (Azwar 2021). One activist reflected on the condom stockout directly in relation to the anticipated PrEP trial at a webinar in April 2022, suggesting in somewhat conspiratorial tones that it reflected a wholesale abandonment of prevention aimed at key populations by the government: “Apart from PrEP, keep using condoms [we are told]. PrEP is currently not running. Condoms, which are even cheaper than PrEP, are not provided either. If the patient contracts HIV and STIs, the treatment is much more expensive than the provision of condoms. This country has never thought about preventive measures. However, it always seeks out expensive treatment” (PPH UNIKA Atma Jaya Catholic University 2022). In this context, condoms circulated in a distinct way in relation to PrEP, one that reflected Indonesia’s unequal position in the global political economy of HIV prevention.

As it was framed in Indonesian policy contexts, PrEP was also enrolled into a logic of preventing future chronicity of HIV. By this I mean that PrEP was positioned as a means to prevent the financial and health burden of future HIV infections by restricting it to MSM, transgender, and sex worker populations. Such a framing had emerged in the years leading up to the trial. One international organisation staff member had described PrEP in terms of a future where it was constrained to key populations, explaining that “if we can control the epidemic within the key population and stop this transmission to general population it is going to be so much easier to stabilize this epidemic” (Irwanto et al. 2017, 82). In popular discourse among the community since this time, PrEP has been not so much compared to condoms as it has anti-retroviral therapy (ART) for people living with HIV. In addition to widespread discussion of side-effects from the drugs among the community, I have heard experts express concern about PrEP in precisely the same terms as ART adherence, in which MSM might become “bored” of treatment and therefore stop taking the drugs. Another international agency official, speaking at a webinar in August 2022, referred to PrEP as naturally attractive to the government for the reason that it was a “preventative” (pencegahan) in line with broader shifts in understandings of health at the national level. Explaining PrEP’s many merits, he explained the task ahead of HIV practitioners and community as one of integrating a preventative logic into the broader transformation of the Indonesian healthcare system. Contrasting it with other campaigns for obesity and cancer, he said, “prevention is going to be much cheaper than dealing with the costs of treating people living with HIV – if HIV continues to spread so widely, we could go bankrupt.” Dispelling the idea that PrEP would just be “handing out pills,” he emphasized the centrality of clinical oversight, including meeting certain risk criteria, maintaining a negative status, and enrolling in periodic STI screening. Accompanying his and several other presentations that day was a cascade that was not necessarily describing past incidence, but aimed at measuring the future, with enrolment in PrEP serving as a proxy for the number of people who did not contract HIV. In such a framing, chronicity was extended even to key populations not currently living with HIV.

A slide projected onto a white screen with a graphic of a pill inscribed with the hashtag PrEP Works and a subcaption reading: "The time for debate on the effectiveness of PrEP is over.

An image taken by the author while attending a workshop with PrEP policy makers and stakeholders. Photo credit: Author.

Such forms of inequality remain acutely felt by Indonesian transgender and MSM populations. Against the backdrop of the PrEP trial, even earlier forms of testing and treatment, as well as other forms of hospital care, are by no means assured. In Indonesia, viral load testing remains rare, given that patients must pay for themselves, and medication stockouts are not unheard of. Laboratory equipment needed to undertake viral load tests are often unavailable or broken. At the same time, tidak terdeteksi (undetectable) has emerged as an important moral force for people living with HIV in Indonesia, even as it circulates alongside a widespread concern for managing outer bodily signs of the virus, tied to the quality of skin tone, hair, and weight (Hegarty 2021). Yet even as they circulate as a part of global discourse, giving rise to new forms of morality and personhood, the technologies that give rise to being “undetectable” are – like PrEP – not available to everyone and on the same terms. As such, HIV technologies such as PrEP do not represent a teleological progression towards self-surveilling subjects but emerge against a backdrop of persistent forms of global inequality and their colonial histories that unfold in the present.


References

Azwar, Amahl S. 2021. ‘Better Late than Never: Indonesia Readies HIV Prevention Drug PrEP’. The Jakarta Post, 28 July 2021. https://www.thejakartapost.com/life/2021/07/28/better-late-than-never-indonesia-readies-hiv-prevention-drug-prep.html.

Dean, Tim. 2015. ‘Mediated Intimacies: Raw Sex, Truvada, and the Biopolitics of Chemoprophylaxis’. Sexualities 18 (1–2): 224–46. https://doi.org/10.1177/1363460715569137.

PPH UNIKA Atma Jaya Catholic University. 2022. Diskusi Kultural #9: “ Tidak Ada Lagi Kondom” (Cultural Discussion #9: “There are no more condoms”). June 22. Accessed 18 August 2022. http://pph.atmajaya.ac.id/event/diskusi-kultural-9-tidak-ada-lagi-kondom/.

FHI 360. 2020. ‘Epic Spotlight on PrEP.’ Meeting Targets and Maintaining Epidemic Control (EpiC) Project. https://www.fhi360.org/sites/default/files/media/documents/epic-spotlight-prep.pdf.

Hegarty, Benjamin. 2021. ‘The Biosocial Body: HIV Visibility in an Age of Pharmaceutical Treatment in Indonesia’. Ethos 49 (4): 460–74. https://doi.org/10.1111/etho.12325.

Hidayat, Rafki. 2016. ‘Mengapa obat pencegah HIV sulit didapat di Indonesia?’ (Why is the medication that prevents HIV difficult to access in Indonesia?) BBC News Indonesia, 2016. https://www.bbc.com/indonesia/majalah/2016/10/161007_majalah_obat_pencegah_hiv.

Irwanto, Evi Sukmaningrum, Gracia Simanullang Valeska, Sari Lenggogeni, Kevin Suhardjo, and Eriando Rizky Septian. 2017. Knowledge and Attitudes Regarding HIV Pre-Exposure Prophylaxis among MSM and Transgender in Jakarta, Indonesia. Jakarta: PPH UNIKA Atma Jaya Catholic University. https://pph.atmajaya.ac.id/media/document/KM/publikasi/Knowledge_and_Attitudes_Regarding_HIV_Pre-Exposure_Prophylaxis_among_MSM_and_Transgender_in_Jakarta_Indonesia.pdf.

Kroeger, Karen A. 2003. ‘AIDS Rumors, Imaginary Enemies, and the Body Politic in Indonesia’. American Ethnologist 30 (2): 243–57.

Lazuardi, Elan. 2019. Navigating the Social Dynamics of HIV Care: A Qualitative Study in Urban Indonesia in the Era of Scaled-up Testing and Treatment. (Unpublished PhD Thesis). University of New South Wales Kirby Institute. http://handle.unsw.edu.au/1959.4/68979.

Lowe, Celia. 2019. ‘Viral Sovereignty: Security and Mistrust as Measures of Future Health in the Indonesian H5N1 Influenza Outbreak’. Medicine Anthropology Theory 6 (3): 109–132. https://doi.org/10.17157/mat.6.3.662.

Race, Kane. 2016. ‘Reluctant Objects: Sexual Pleasure as a Problem for HIV Biomedical Prevention’. GLQ: A Journal of Lesbian and Gay Studies 22 (1): 1–31. https://doi.org/10.1215/10642684-3315217.

Sangaramoorthy, Thurka. 2018. ‘Chronicity, Crisis, and the “End of AIDS”’. Global Public Health 13 (8): 982–96. https://doi.org/10.1080/17441692.2018.1423701.

United States Agency for International Development (USAID). 2021. USAID Indonesia Annual Report 2021. Jakarta: USAID Indonesia. https://www.usaid.gov/sites/default/files/documents/USAID_Indonesia_Annual_Report_2021.pdf.

 

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