Othering discourse and stigma amidst the identity formation process among gays, bisexuals and other men who have sex with men on HIV pre-exposure prophylaxis (PrEP)

Discurso do Outro e estigma no processo de formação de identidade entre gays, bissexuais e outros homens que fazem sexo com homens que utilizam a profilaxia pré-exposição ao HIV (PrEP)

Roberto Rubem da Silva-Brandao Aurea Maria Zöllner Ianni About the authors

Abstract

With the global emergence of the HIV pre-exposure prophylaxis (PrEP), questions have emerged on which ways the social identity formation process among gays, bisexuals and other men who have sex with men on PrEP arise and constitute beyond exclusive sexual orientation expressions. We conducted a content analysis with thematic categories in a PrEP online group guided by group-web affiliation and individualization approaches. Individuals identify themselves as PrEPsters as part of a PrEP club, while dealing with conflicts on serosorting sexual partners and stigmatizing reactions towards people living with HIV/AIDS (PLWH). Self-worth and othering discourses towards PLWH emerged as complex themes in men’s production of identity processes across four overlapping domains: (1) self-worth as a strategy to challenge individual HIV-acquisition-related anxiety and fear, (2) group-worth and group empowerment, (3) body control and reclaiming power on sexual health, and (4) othering discourses, HIV/AIDS stigma and criminalization of PLWH. Paradoxically, internal and external discourses to the group constitute and challenge identity differentiation; individuals on PrEP claim to fight against the HIV/AIDS stigma, while this reverberates alongst HIV-related discriminatory expressions in their discourses.

Key words:
PrEP; Identity; Stigma; Othering discourse; Individualization

Resumo

Com o avanço global da Profilaxia Pré-exposição ao HIV (PrEP) questões sobre a formação do processo (bio)identitário de gays, bissexuais e outros homens que fazem sexo com homens usuários de PrEP complexificam-se para além de expressões de orientação sexual. Realizamos uma análise de conteúdo com categorias temáticas em um grupo online de usuários de PrEP orientada por abordagens de redes sociais e individualização social. Os indivíduos veem-se como PrEPsters como parte de um clube de PrEP, enquanto lidam com conflitos nas relações sexuais soro-discordantes. Discursos de autovalorização e de estigma contra pessoas que vivem com HIV/Aids (PVHA) surgiram como temas complexos na produção dos processos de identidade em quatro domínios interconectados: (1) autovalorização como uma estratégia para minorar ansiedade e o medo relacionados à aquisição de HIV, (2) valorização de grupo e expressões de empoderamento individual, (3) controle do corpo e poder de decisão sobre saúde sexual, e (4) discursos de diferenciação, estigma e criminalização das PVHA. Paradoxalmente, discursos internos e externos ao grupo constituem e desafiam a diferenciação de identidade; indivíduos em PrEP afirmaram lutar contra o estigma do HIV/Aids, enquanto reproduzem expressões discriminatórias relacionadas a HIV/Aids em seus discursos.

Palavras-chave:
PrEP; Identidade; Estigma; Diferença; Individualização

Introduction

The United States continues to see growing rates of HIV transmission, with a persistently disproportionate burden of new infections among gay, bisexual, and other men who have sex with men (gbMSM)11 Centers for Disease Control and Prevention (CDC). Preexposure Prophylaxis for the prevention of HIV infection in the United States-2017 Update: a clinical practice guideline [Internet]. 2017 [cited 2020 mar 18]. Available from: https://www.cdc.gov/hiv/pdf/risk/prep/cdc-hiv-prep- guidelines-2017.pdf.
https://www.cdc.gov/hiv/pdf/risk/prep/cd...
. To better address the HIV epidemic among gbMSM, there has been increasing use of the HIV pre-exposure prophylaxis (PrEP) as part of a biomedical approach to reduce transmission11 Centers for Disease Control and Prevention (CDC). Preexposure Prophylaxis for the prevention of HIV infection in the United States-2017 Update: a clinical practice guideline [Internet]. 2017 [cited 2020 mar 18]. Available from: https://www.cdc.gov/hiv/pdf/risk/prep/cdc-hiv-prep- guidelines-2017.pdf.
https://www.cdc.gov/hiv/pdf/risk/prep/cd...
. PrEP consists of an oral-daily combination of antiretroviral medications that prevents HIV infection. Clinical trials have demonstrated efficacy above 99% for preventing HIV among gbMSM when adherence is 4-7 doses of daily PrEP each week22 Grant RM, Anderson PL, McMahan V, Liu A, Amico KR, Mehrotra M, Hosek S, Mosquera C, Casapia M, Montoya O, Buchbinder S, Veloso VG, Mayer K, Chariyalertsak S, Bekker LG, Kallas EG, Schechter M, Guanira J, Bushman L, Burns DN, Rooney JF, Glidden DV, iPrEx study team. Uptake of pre-exposure prophylaxis, sexual practices, and HIV incidence in men and transgender women who have sex with men: A cohort study. Lancet Infect Dis 2014; 14(9):820-829.,33 Spinner CD, Boesecke C, Zink A, Jessen H, Stellbrink HJ, Rockstroh JK, Esser S. HIV pre-exposure prophylaxis (PrEP): A review of current knowledge of oral systemic HIV PrEP in humans. Infection 2016; 44(2):151-158..

Scholarly works have increasingly documented the identity formation process (IFP) among gbMSM in the ongoing biomedical prevention landscape. Studies have revealed unequal forms of biomedical self-governance towards people living with HIV/AIDS (PLWH)44 Young I, Flowers P, McDaid L. Can a pill prevent HIV? Negotiating the biomedicalisation of HIV prevention. Sociol Health Illn 2016; 38(3):411-425.,55 Girard G, Patten S, LeBlanc M-A, Adam BD, Jackson E. Is HIV prevention creating new biosocialities among gay men? Treatment as prevention and pre-exposure prophylaxis in Canada. Sociol Health Illn 2019; 41(3):484-501., whose bodies were seen as risky, accompanied by the responsibility to manage it44 Young I, Flowers P, McDaid L. Can a pill prevent HIV? Negotiating the biomedicalisation of HIV prevention. Sociol Health Illn 2016; 38(3):411-425.. Additionally, biosocialites among PLWH and those on PrEP point to conflicting views on the use of antiretrovirals for HIV prevention55 Girard G, Patten S, LeBlanc M-A, Adam BD, Jackson E. Is HIV prevention creating new biosocialities among gay men? Treatment as prevention and pre-exposure prophylaxis in Canada. Sociol Health Illn 2019; 41(3):484-501.,66 Jaspal R, Daramilas C. Perceptions of pre-exposure prophylaxis (PrEP) among HIV-negative and HIV-positive men who have sex with men (MSM). Cogent Med 2016; 3:1-16.. Particularly, negotiations of biosocial identities were linked to HIV serostatuses and managing treatment77 Young I, Davis M, Flowers P, McDaid LM. Navigating HIV citizenship: identities, risks and biological citizenship in the treatment as prevention era. Health Risk Soc 2019; 21(1-2):1-16., revealing perceived PrEP-related stigma44 Young I, Flowers P, McDaid L. Can a pill prevent HIV? Negotiating the biomedicalisation of HIV prevention. Sociol Health Illn 2016; 38(3):411-425.,88 Grace D, Jollimore J, MacPherson P, Strang MJP, Tan DHS. The Pre-Exposure Prophylaxis-Stigma Paradox: Learning from Canada's First Wave of PrEP Users. AIDS Patient Care STDS 2018; 32:24-30.

9 Franks J, Hirsch-Moverman Y, Loquere AS Jr, Amico KR, Grant RM, Dye BJ, Rivera Y, Gamboa R, Mannheimer SB. Sex, PrEP, and stigma: Experiences with HIV pre-exposure prophylaxis among New York City MSM participating in the HPTN 067/Adapt Study. AIDS Behav 2018; 22(4):1139-1149.
-1010 Hubach RD, Currin JM, Sanders CA, Durham AR, Kavanaugh KE, Wheeler DL, Croff JM. Barriers to access and adoption of pre-exposure prophylaxis for the prevention of HIV among men who have sex with men (MSM) in a relatively rural state. AIDS Educ Prev 2017; 29(4):315-329. as well as perceptions that PrEP leads to reduced condom use and greater sexual risk behaviour1111 Eaton LA, Matthews DD, Driffin DD, Bukowski L, Wilson PA, Stall RD, POWER Study Team. A multi-US city assessment of awareness and uptake of pre-exposure prophylaxis (PrEP) for HIV prevention among Black men and transgender women who have sex with men. Prev Sci 2017; 18(5):505-516.,1212 Grov C, Rendina HJ, Whitfield THF, Ventuneac A, Parsons JT. Changes in familiarity with and willingness to take preexposure prophylaxis in a longitudinal study of highly sexually active gay and bisexual men. LGBT Health 2016; 3(4):252-257.. These processes have informed understandings of emerging shifts on sexual practices, with great extension of biopower surveillance1313 Dean T. Mediated intimacies: Raw sex, Truvada, and the biopolitics of chemoprophylaxis. Sexualities 2015; 18:224-246., while dismantling previous conceptualizations and practices of bareback sex toward new intimacy codes1414 Silva-Brandao RR, Ianni AMZ. Sexual desire and pleasure in the context of the HIV pre-exposure prophylaxis (PrEP). Sexualities 2020; 23(8):1400-1416.. Upon this debate, there is a prevalence of the interplay between technoscience, knowledge and sexuality1515 Martinez-Lacabe A. The non-positive antiretroviral gay body: the biomedicalisation of gay sex in England. Cul Health Sex 2019; 21(10):117-1130.

16 Race K. The gay science: experiments with the problem of HIV. London, New York: Routledge; 2018.
-1717 Brisson J, Nguyen VK. Science, technology, power and sex: PrEP and HIV-positive gay men in Paris. Cult Health Sex 2017; 19(10):1066-1077. informing individuals’ experiences upon negotiating HIV prevention strategies and sociabilities44 Young I, Flowers P, McDaid L. Can a pill prevent HIV? Negotiating the biomedicalisation of HIV prevention. Sociol Health Illn 2016; 38(3):411-425.,55 Girard G, Patten S, LeBlanc M-A, Adam BD, Jackson E. Is HIV prevention creating new biosocialities among gay men? Treatment as prevention and pre-exposure prophylaxis in Canada. Sociol Health Illn 2019; 41(3):484-501.,77 Young I, Davis M, Flowers P, McDaid LM. Navigating HIV citizenship: identities, risks and biological citizenship in the treatment as prevention era. Health Risk Soc 2019; 21(1-2):1-16.,1818 Elopre L, McDavid C, Brown A, Shurbaji S, Mugavero MJ, Turan JM. Perceptions of HIV Pre-Exposure Prophylaxis Among Young, Black Men Who Have Sex with Men. AIDS Patient Care STDs 2018; 32(12):511-518..

As HIV/AIDS-related stigma and discrimination continue to thrive cross-cultural populations in the HIV chemoprophylaxis era88 Grace D, Jollimore J, MacPherson P, Strang MJP, Tan DHS. The Pre-Exposure Prophylaxis-Stigma Paradox: Learning from Canada's First Wave of PrEP Users. AIDS Patient Care STDS 2018; 32:24-30.,1919 Quinn K, Bowleg L, Dickson-Gomez J. The fear of being Black plus the fear of being gay: The effects of intersectional stigma on PrEP use among young Black gay, bisexual, and other men who have sex with men. Soc Sci Med 2019; 232:86-93.,2020 Seffner F, Parker R. The waste of experience and precariousness of life: contemporary political moment of the Brazilian response to aids. Interface (Botucatu) 2016; 20(57):293-304., these socio-structural problems invariably influence biological IFP. These situations are often articulated through othering discourses, commonly defined as the process in which powerful groups relegate often marginalized/stigmatized subordinate ones into a reductionist way, ascribing problematic and/or stigmatizing characteristics to these subordinate groups2121 Weis L. Identity formation and the processes of "othering": unraveling sexual threads. Educ Found 1995; 9(1):17-33.,2222 Jensen SQ. Othering, identity formation and agency. Quali Stud 2011; 2(2):63-78.. An study-sample of gbMSM overwhelmingly expressed reluctance to date or to have sex with PLWH, regularly describing them as sick1919 Quinn K, Bowleg L, Dickson-Gomez J. The fear of being Black plus the fear of being gay: The effects of intersectional stigma on PrEP use among young Black gay, bisexual, and other men who have sex with men. Soc Sci Med 2019; 232:86-93.; participants perceived PrEP to be offered to others in need, as they did not see themselves at risk for HIV1919 Quinn K, Bowleg L, Dickson-Gomez J. The fear of being Black plus the fear of being gay: The effects of intersectional stigma on PrEP use among young Black gay, bisexual, and other men who have sex with men. Soc Sci Med 2019; 232:86-93.. Othering discourses are linked to negative health outcomes, lower rates of HIV status disclosure, and expression of high-risk behavior among PLWH1919 Quinn K, Bowleg L, Dickson-Gomez J. The fear of being Black plus the fear of being gay: The effects of intersectional stigma on PrEP use among young Black gay, bisexual, and other men who have sex with men. Soc Sci Med 2019; 232:86-93.,2323 Smit PJ, Brady M, Carter M, Fernandes R, Lamore L, Meulbroek M, Ohayon M, Platteau T, Rehberg P, Rockstroh JK, Thompson M. HIV-related stigma within communities of gay men: a literature review. AIDS Care 2012; 24(3-4):405-412..

However, key relational and social domains about IFP on PrEP have been undiscussed in the literature: (1) while PrEP has been linked to more direct communication about HIV among sexual partners2424 Hannaford A, Lipshie-Williams M, Starrels JL, Arnsten JH, Rizzuto J, Cohen P, Jacobs D, Patel VV. The use of online posts to identify barriers to and facilitators of HIV pre-exposure prophylaxis (PrEP) among men who have sex with men: A comparison to a systematic review of the peer-reviewed literature. AIDS Behav 2018; 22(4):1080-1095. and reduced stigma against HIV-positive partners2525 Storholm ED, Volk JE, Marcus JL, Silverberg MJ, Satre DD. Risk perception, sexual behaviors, and PrEP adherence among substance-using men who have sex with men: A qualitative study. Prev Sci 2017; 18(6):737-747., it is unknown in which ways individuals on PrEP may contradict and/or benefit from these claims as part of their ongoing IFP; (2) while previous research had clearly identified othering processes linked to HIV/AIDS stigma and to a great self-worth expression of gbMSM who are not on PrEP1919 Quinn K, Bowleg L, Dickson-Gomez J. The fear of being Black plus the fear of being gay: The effects of intersectional stigma on PrEP use among young Black gay, bisexual, and other men who have sex with men. Soc Sci Med 2019; 232:86-93., there has remained a lack of knowledge on which ways gbMSM on PrEP may articulate stigmatizing othering discourses to differentiate their own biosocial identities; (3) the role HIV/AIDS stigma (and criminalization) of PLWH play on IFP through othering processes among concomitant biosocialities experiences are undiscussed; importantly, (4) studies have not yet explored the consequences of structural individualization, as a societal process rather than granted perceptions of individual choice/individualism/altruism, on this highly differentiated HIV-prevention landscape.

We here seek to identify and to understand in which ways othering discourses link to identity formation processes of individuals on PrEP in the context of the ongoing biomedical prevention landscape. We present new evidences that point to highly differentiated scenarios of biosocial identities, while we explore the central role of individualization in this process. Social individualization refers to an ever-increasing socialization process in the risk society in which the individual action is the core of contemporary contradictions among individuals, institutions and technological fabrications of post-industrial societies2626 Beck U. Risk society: towards a new modernity. London: SAGE, 1992.,2727 Beck U, Beck-Gernsheim E. Individualization - Institutionalized individualism and its social and political consequences. London: SAGE; 2002.. Within this theoretical landmark, we had analysed othering processes and their connections to IFP as discursive processes2222 Jensen SQ. Othering, identity formation and agency. Quali Stud 2011; 2(2):63-78.. We further advanced on discussing how individuals on PrEP produce social differentiation and recognition2828 Simmel G. Conflict and the web of group-affiliations. New York: The Free Press; 1964.,2929 Honneth A. The Struggle for Recognition: The Moral Grammar of Social Conflicts. Cambridge: Polity Press; 1995. amidst social attachments3030 Leeuwen B. A Formal Recognition of Social Attachments: Expanding Axel Honneth's Theory of Recognition. Inquiry 2007; 50(2):180-205. linked to major societal IFP in contemporary North-Western societies.

Risk society and social individualization: entangling the identity formation process

Risk society refers to a phase of the modernization process in which post-industrial societies radically confronts its successes and setbacks in the historical sense, producing more risks, uncertainty and new social forms2626 Beck U. Risk society: towards a new modernity. London: SAGE, 1992.. In this new social order, risks structure the material and social contradictions of late modernization processes mainly due to the increasingly scientific knowledge production amid uncertain challenges in contemporary society. This process overwhelmingly leads individuals to make decisions based on risk calculations and, very often, make them confused and without much direction.

The risk society produces at its core the societal individualization process2626 Beck U. Risk society: towards a new modernity. London: SAGE, 1992.,2727 Beck U, Beck-Gernsheim E. Individualization - Institutionalized individualism and its social and political consequences. London: SAGE; 2002.. This means that individuals become the core of social contradictions like-an-spiral into the structural domains of society - having to confront themselves with modern social institutions and all of their consequences and risks. While the distribution of risks differentiates societies themselves broadly, the individual is in charge of constructing their own (auto)biographical paths like never before. This sets ambiguity as a major societal contingent; while making decisions of their own, individuals deal with their consequences as they too produce more risks and uncertainties as products of their social action2727 Beck U, Beck-Gernsheim E. Individualization - Institutionalized individualism and its social and political consequences. London: SAGE; 2002..

Finally, as the individualization process also structures society, its consequences on IFP is immanent and overspread2727 Beck U, Beck-Gernsheim E. Individualization - Institutionalized individualism and its social and political consequences. London: SAGE; 2002.. As individuals seek more solutions or recognition for their lives - or to which they stand for - this is precisely the relational arena of choices, discourses and risks, particularly in health interventions like the use of PrEP. Within this biomedical landscape, issues like alterity, which is the capacity individuals have to make choices of their own and deal with the overseeing consequences2222 Jensen SQ. Othering, identity formation and agency. Quali Stud 2011; 2(2):63-78., is even more in charge amid the lenses of the other discourses and the risks as part of their lives. In this sense, discourses are understood as socio-political production that also orients and constitute relational IFP2121 Weis L. Identity formation and the processes of "othering": unraveling sexual threads. Educ Found 1995; 9(1):17-33.,2222 Jensen SQ. Othering, identity formation and agency. Quali Stud 2011; 2(2):63-78..

Within this analytical framework, the othering processes and their connections to IFP are entangled in risk society and the individualization process. In this study, the interplay between IFP - as a relational and discursive process -, risk and individualization is theoretically beneficial to understand the ongoing IFP in the HIV prevention biomedical landscape.

Methods

This study is part of a large sociological and public health interdisciplinary study that analyzed contemporary social change and individualization processes in public health. Based on the method of content analysis with thematic categories3131 Quivy R. Manual de investigação em ciências sociais. Lisboa: Gradiva; 2008.,3232 Joffe H, Yardley L. Content and thematic analysis. In: Marks D, Yardley L. Research Methods for health and clinical psychology. London: Sage; 2003., this study analyzed data collected from interactions of individuals on PrEP and their interlocutors in a Facebook® discussion group on PrEP and HIV/AIDS, which has thousands of members, predominantly gbMSM from the US. The group aims to discuss PrEP facts free from judgments on members’ experiences and sexualities. Members seek sharing experiences, reflecting on them, and being on the forefront of social advocacy in the HIV/AIDS epidemic. There is no recruitment for the group members, nor any funding backing their activities. This group was selected due to high and diverse number of members, and more importantly, intense posting and interacting between members on daily basis.

This study benefited from observational and community studies practices3333 Tripp G. Pesquisa-ação: uma introdução metodológica. Educ Pesq 2005; 31:443-466., as one of the authors is also an HIV/AIDS activist and long member of the group. Although there were no direct interaction with profiles in the scope of this study, nor any researcher’s interference upon the analyzed posts, we see that a public discussion on these issues is one of the commitments of critical thought that the group shares as a principle, which had been well accepted as a group practice throughout the years.

We have followed all local ethical guidelines regarding proceedings with non-human interaction under observational social-media research (OSR). Following international ethical principles - aligned with local guidelines on conducting research on social science and health-related areas3434 Guerriero ICZ; Minayo MC. A aprovação da Resolução CNS nº 510/2016 é um avanço para a ciência brasileira. Saude Soc 2019: 28:299-310. -, we ensured highly consolidated practices on OSR3535 Moreno MA, Goniu N, Moreno OS, Diekema D. Ethics of Social Media Research: Common Concerns and Practical Considerations. Cyberpsychol Behav Soc Netw 2013; 16(9):708-713.

36 Markham A, Buchanan E. Ethical decision-making and internet research: Recommendations from the AoIR Ethics Working Committee (Version 2.0) [Internet]. Chicago: Association of Internet Researchers, Research Ethics Working Committee; 2012 [cited 2020 mar 18]. Available from: https://aoir.org/reports/ethics2.pdf.
-3737 Zimmer M. "But the data is already public": On the ethics of research in Facebook. Ethics Inf Technol 2019; 12:313-325., particularly regarding contextual integrity of the group3838 Nissenbaum H. Privacy in context: Technology, policy, and the integrity of social life. Stanford: Stanford University Press; 2010. in order to build up our research protocol upon questions of consent, privacy and managing sensitive information; as such, group and profiles’ names were removed as any other information that might identify any of the members of the group, including all moderators under Facebook-site best OSR ethics orientation on privacy3535 Moreno MA, Goniu N, Moreno OS, Diekema D. Ethics of Social Media Research: Common Concerns and Practical Considerations. Cyberpsychol Behav Soc Netw 2013; 16(9):708-713.

36 Markham A, Buchanan E. Ethical decision-making and internet research: Recommendations from the AoIR Ethics Working Committee (Version 2.0) [Internet]. Chicago: Association of Internet Researchers, Research Ethics Working Committee; 2012 [cited 2020 mar 18]. Available from: https://aoir.org/reports/ethics2.pdf.
-3737 Zimmer M. "But the data is already public": On the ethics of research in Facebook. Ethics Inf Technol 2019; 12:313-325.. By acknowledging legal and contextual integrity of privacy3535 Moreno MA, Goniu N, Moreno OS, Diekema D. Ethics of Social Media Research: Common Concerns and Practical Considerations. Cyberpsychol Behav Soc Netw 2013; 16(9):708-713., we have followed all recommendations to securely protect and destroy the original reports in our archives, extending measures to protect identifiable content shared in all phases of the writing and publishing processes; due to the level of sensitive information shared within this group3636 Markham A, Buchanan E. Ethical decision-making and internet research: Recommendations from the AoIR Ethics Working Committee (Version 2.0) [Internet]. Chicago: Association of Internet Researchers, Research Ethics Working Committee; 2012 [cited 2020 mar 18]. Available from: https://aoir.org/reports/ethics2.pdf., all profiles’ direct quotes were edited and summarized within all thematic categories to prevent any remote chances of members’ identification under special conditions through site and engine searches3636 Markham A, Buchanan E. Ethical decision-making and internet research: Recommendations from the AoIR Ethics Working Committee (Version 2.0) [Internet]. Chicago: Association of Internet Researchers, Research Ethics Working Committee; 2012 [cited 2020 mar 18]. Available from: https://aoir.org/reports/ethics2.pdf.,3737 Zimmer M. "But the data is already public": On the ethics of research in Facebook. Ethics Inf Technol 2019; 12:313-325.. Our institutional Ethical Board can be reached regarding further queries about all the ethical measures we adopted in this study.

Data analysis

The follow-up period for members’ posts occurred within a three-month period in 2017, including a preparatory one-month pilot phase. Data from the pilot phase were used as final data, since there were no significant changes in the data collection procedures, or in the previously established data collection script. We focused on the discussions content rather than on individual social location/status, checking in which ways individuals presented their personal issues, particularly their routines, conflicts, and successes on PrEP. Sociological theory upon conflict and the web of group-affiliation2828 Simmel G. Conflict and the web of group-affiliations. New York: The Free Press; 1964. and on the social individualization process2626 Beck U. Risk society: towards a new modernity. London: SAGE, 1992.,2727 Beck U, Beck-Gernsheim E. Individualization - Institutionalized individualism and its social and political consequences. London: SAGE; 2002. were utilized to ground the original methods in an online group and all data analysis proceedings. Further details are available at Silva-Brandao3939 Silva-Brandao RR. Profilaxia pré-exposicão ao HIV (PrEP) no contexto do processo de individualizacão e saúde [tese]. São Paulo: Universidade de São Paulo; 2018. and briefly schematized in Figure 1.

Figure 1
Flow diagram for data-selection and analysis from a PrEP Facebook group.

Results

We identified four overlapping themes across individuals’ discourses on PrEP referring to self-worth as a strategy to defy HIV-acquisition-related anxiety and fear, group-worth amidst their social expression and group empowerment, body control and power-dynamics on sexual health and othering discourses linked to stigma and criminalization of PLWH.

Self-worth: defying anxiety and fear

Individuals revealed anxiety traits while questioning themselves whether they would be HIV-positive being off PrEP. For many years, though, the question was not whether or not one would seroconvert, but rather the resigned curiosity of “when” the inevitable seroconversion would come. One contributor stated that before every test he was convinced he had seroconverted. As such, PrEP is viewed as a turning point to a better sexual life as individuals start to truly have the “best sex” of their lives.

To the same extent, they justify and encourage others to be on PrEP; the reduction or loss of anxiety and fear of acquiring HIV takes time and occurs differently for each individual. For some, it took a few months to embrace the freedom of no fear, while others believe that being “PrEPsters” has to do with having “faith” in it, implying that it will take longer to feel at ease. Contributors also show how much they have learnt to let go of the fear/anxiety that one may have hammered into oneself through years of scare HIV/AIDS campaigns. There is an idea that being on PrEP is like the sexual liberalization of the 1970’s again, where one can play with others at almost anytime, anywhere and enjoy the excitement of the spontaneity and adventure being shared with others. It is, for one of them, a “miracle really”.

Shared worth: social expression and empowerment

Individuals found these shifts on sexuality “revolutionary” and felt “empowered” both as individuals and as a group by being on PrEP. As one contributor said, losing the “PrEP virginity” feels really good and empowering. Freedom and liberation are also associated with being PrEP empowered. In this sense, being on PrEP has not only freed them from fear and shame, it has opened up a new world of intimacy and sexual self-expression that one had only hoped would be possible.

Empowerment is often linked to a common understanding of a group, community or movement of PrEP users. To some of the PrEP users, it feels great to take action and stand against the HIV crisis as they advocate for the “PrEP movement”, calling all the guys to protect themselves and others. Interestingly, one said he was proud to be HIV negative, and a proud user of Truvada. Many contributors are keen to use the word “club” to refer to their sociability and, for most of them, it has been a wonderful and life changing experience. Being on PrEP and embracing it is seen as an ongoing process and the emotional benefits were somehow unexpected for some of them.

“It’s about taking control”

Empowerment is conceived as a retaining power process to oneself, which freed up individuals from fear, shame and anxiety. As one summed up, being strong and independent means being smart about his health and body as it affects their lives and partners. Ultimately, PrEP is about taking back one’s inner power and taking ownership over their bodies. PrEP is about taking control of their sexual health.

Individuals believe PrEP offers greater safety, especially in cases whereby control over sexual health may be lost, such as in the use of recreational drugs. Men have found their ways to harder drugs because the anxiety that kept them away from the chemsex scene was based on a fear of “losing control”. As one contributor said, PrEP helps when you are “too trashed” to make informed decisions. PrEP, in this case, will not protect people from other consequences of being trashed but it will preserve them from that “cruel and unusual punishment”. This process is seen as a form of emancipation of a group; one contributor stated that if anyone tries to shame people for being on PrEP, he questions whether they say the same thing to women on birth control.

Othering discourses, HIV/AIDS stigma and criminalization

HIV/AIDS stigma is sometimes outlined in a simplistic way, leading more people to consider PrEP a way to overcome this social-cultural phenomena. As one contributor stated, since removing stigma is a long cultural process, bypassing it by simply restyling the chemical cocktail contained in Truvada® in order to make it look as if it were specifically meant for prevention/PrEP was brought up to discussion.

Othering PLWH is recurrent as one HIV-positive member on medication shares his experience of hunting a guy on PrEP is harder than it should be. He saw a hookup app profile of a guy on PrEP and, as soon as he disclosed being HIV-positive, the guy blocked him. He concluded saying that even the guys who do not have to worry about HIV still block him due to his HIV status. While discussing a case of a man that rejected condomless sex with an undetectable HIV-positive person prior to being on PrEP, someone explains this due to the fact that being PrEP people are “in control” of the prophylaxis because they take the pill - alluding to the fact the HIV-positive persons are subject of discrimination despite being undetectable and, thus, not offering risks of HIV transmission.

Questioning individuals’ adherence to medication also appeared over a seroconversion case of an individual on proper use of PrEP. Over the discussion, one contributor suspected that the guy was not telling the truth - “he is lying” - as he asserted the risk of contracting HIV when on PrEP is very small. He finally concludes by saying it is sad that HIV and sex itself still carry such a stigma and people feel they need to make up stories that will somehow “exonerate” them.

Diverse discourses arise when the issue of HIV/AIDS criminalization emerges. When discussing a case of a man living with HIV/AIDS, imprisoned in Toronto, Canada, for apparently infecting his sexual partners on purpose, individual’s perceptions on stigma arise objectively:

  1. (i) If people decriminalize these actions, there would be more instances of men lying about their status because there is no second thought of getting in trouble for their actions.

  2. (ii) Criminalizing HIV exposure does next to nothing to slow the epidemic. Would be far better by making testing and treatment easily accessible, and fighting the stigma that prevents people from getting tested.

  3. (iii) Individuals should take control over their own protection because they can never totally entrust their health to another person, whether a stranger or a boyfriend. As one contributor alerted, they can be HIV-positive with uncontrolled viral load.

  4. (iv) Disclosing HIV-status to hook-ups seems to be easy, at least until their hate and rumor mills start to swirl.

In this context, PrEP appears to many of its users as a strategy that, apparently, would resolve a great part of these conflicts. For one, this is why PrEP needs to be more widespread, and easily accessible. Amid discussing the given case of HIV criminalization, one contributor concludes by saying that if those two young guys were on PrEP, they would still be HIV-negative.

Discussion

Our findings suggest individuals’ discourses and group-affiliation dynamics are increasingly intertwined with IFP on PrEP. Individuals frequently described themselves as having higher levels of self-worth and shared great empowerment among group members. PrEP is perceived to be a tool that promotes sexual freedom by diminishing anxiety and fear for those who are not HIV-positive. We argue individuals articulated high levels of self-worth and empowerment partly because they belong to a group in which they can share common experiences by assimilating a sense of being between equals2828 Simmel G. Conflict and the web of group-affiliations. New York: The Free Press; 1964.,2929 Honneth A. The Struggle for Recognition: The Moral Grammar of Social Conflicts. Cambridge: Polity Press; 1995., expressing their subjective attachments to it3030 Leeuwen B. A Formal Recognition of Social Attachments: Expanding Axel Honneth's Theory of Recognition. Inquiry 2007; 50(2):180-205.. Self-worth among gbMSM on PrEP is well-documented1919 Quinn K, Bowleg L, Dickson-Gomez J. The fear of being Black plus the fear of being gay: The effects of intersectional stigma on PrEP use among young Black gay, bisexual, and other men who have sex with men. Soc Sci Med 2019; 232:86-93.,4040 Hammack PL, Toolis EE, Wilson BDM, Clark RC, Frost DM. Making Meaning of the Impact of Pre-Exposure Prophylaxis (PrEP) on Public Health and Sexual Culture: Narratives of Three Generations of Gay and Bisexual Men. Arch Sex Behav 2019; 48(4):1041-1058. though individual self-worth expression leading to a great group-empowerment is an emerging process we first identified in a PrEP online-group. This process may offer a number of individual benefits, such as gains in meanings of the intimacy88 Grace D, Jollimore J, MacPherson P, Strang MJP, Tan DHS. The Pre-Exposure Prophylaxis-Stigma Paradox: Learning from Canada's First Wave of PrEP Users. AIDS Patient Care STDS 2018; 32:24-30.,1313 Dean T. Mediated intimacies: Raw sex, Truvada, and the biopolitics of chemoprophylaxis. Sexualities 2015; 18:224-246.,1414 Silva-Brandao RR, Ianni AMZ. Sexual desire and pleasure in the context of the HIV pre-exposure prophylaxis (PrEP). Sexualities 2020; 23(8):1400-1416.,2525 Storholm ED, Volk JE, Marcus JL, Silverberg MJ, Satre DD. Risk perception, sexual behaviors, and PrEP adherence among substance-using men who have sex with men: A qualitative study. Prev Sci 2017; 18(6):737-747., the sense of not coping with anxiety associated with sex2525 Storholm ED, Volk JE, Marcus JL, Silverberg MJ, Satre DD. Risk perception, sexual behaviors, and PrEP adherence among substance-using men who have sex with men: A qualitative study. Prev Sci 2017; 18(6):737-747.,4141 Kwakwa HA, Bessias S, Sturgis D, Mvula N, Wahome R, Coyle C, Flanigan TP. Attitudes toward HIV pre-exposure prophy- laxis in a United States urban clinic population. AIDS Behav 2016; 20(7):1443-1450. and an eventual seroconversion that was deeply rooted in their imaginaries1414 Silva-Brandao RR, Ianni AMZ. Sexual desire and pleasure in the context of the HIV pre-exposure prophylaxis (PrEP). Sexualities 2020; 23(8):1400-1416.. Interestingly, individuals see themselves as part of a club that allows them to overcome perceptions of sexual ostracism linked to rooted sexual restrains over fear/anxiety of acquiring HIV; conversely, the group exacerbates an ideal of individuals being part of a revolutionary process, alluding to structural shifts in the epidemic, seeking to dismantle the long condom-code via condomless sex idealization1414 Silva-Brandao RR, Ianni AMZ. Sexual desire and pleasure in the context of the HIV pre-exposure prophylaxis (PrEP). Sexualities 2020; 23(8):1400-1416.,4242 Dean T. Unlimited intimacy: Reflections on the subculture of barebacking. Chicago: University of Chicago Press; 2009., particularly fostering their perceptions from the sex scene before AIDS.

Individualization is central for those on PrEP, while group-affiliation mediates sociability and recognition from one’s self. Individualization greatly accounts for power and control of the one’s self, which are two interchangeable concepts in group-members’ discourses; as individuals exert power to control their own HIV status, they produce a personal agency4343 Ybema S, Keenoy T, Oswick C, Beverungen A, Ellis N, Sabelis I. Articulating identities. Human Relations 2009; 62(3):299-322. that, apparently, is not regulated by external forces or negatively impacted by circumstances of uncontrolled recreational substance use. This contradicts classic-to-contemporary theoretical approaches that sustain the controlling dimension of the medical power via medicalization over the individual body in public health interventions4444 Foucault M. The birth of the clinic. An archaeology of the medical perception. New York: Routledge; 1973.,4545 Rose N. The politics of life itself: Biomedicine, power and subjectivity in the twenty-first century. Oxford, Princeton: Princeton University Press; 2007.. As such, individuals partly produce the individualization process by conflicting personal interests, i.e. condomless sex, drug-use, pleasure and intimacy, to given biomedical technologies2727 Beck U, Beck-Gernsheim E. Individualization - Institutionalized individualism and its social and political consequences. London: SAGE; 2002. through their own HIV prevention practices. As the individual action regulates the core of the HIV prevention, which is framed by great subjective dimensions, such as power, control, fear, this constitutes enormous barriers to find the other as proximal being, rather distant and, sometimes, derogatorily differentiated from the self3030 Leeuwen B. A Formal Recognition of Social Attachments: Expanding Axel Honneth's Theory of Recognition. Inquiry 2007; 50(2):180-205.. “It is the varieties of ‘self-other’ talk which emerge as the critical ingredient” in contemporary IFP4343 Ybema S, Keenoy T, Oswick C, Beverungen A, Ellis N, Sabelis I. Articulating identities. Human Relations 2009; 62(3):299-322..

While individuals relate to seemingly proximal biosocilities of PLWH, power-disputing discourse within and outside the group constitute a fundamental element of their IFP. Noting Truvada could be used both for HIV prevention and treatment, members feared being characterized and stigmatized in the same manner as PLWH. Similarly, noting PLWH could be potentially infectious despite of being HIV-undetectable, individuals reported rejecting sex with them44 Young I, Flowers P, McDaid L. Can a pill prevent HIV? Negotiating the biomedicalisation of HIV prevention. Sociol Health Illn 2016; 38(3):411-425.,55 Girard G, Patten S, LeBlanc M-A, Adam BD, Jackson E. Is HIV prevention creating new biosocialities among gay men? Treatment as prevention and pre-exposure prophylaxis in Canada. Sociol Health Illn 2019; 41(3):484-501.,1919 Quinn K, Bowleg L, Dickson-Gomez J. The fear of being Black plus the fear of being gay: The effects of intersectional stigma on PrEP use among young Black gay, bisexual, and other men who have sex with men. Soc Sci Med 2019; 232:86-93.,4646 Medina MM, Crowley C, Montgomery MC, Tributino A, Almonte A, Sowemimo-Coker G, Nunn A, Chan PA. Disclosure of HIV Serostatus and Pre-exposure Prophylaxis Use on Internet Hookup Sites Among Men Who have Sex with Men. AIDS Behav 2019; 23(7):1681-1688., amid expressing being proud to be HIV-negative. Such othering discourses affirm the legitimacy and superiority of the powerful self and condition identity differentiation among the subordinate - the other2222 Jensen SQ. Othering, identity formation and agency. Quali Stud 2011; 2(2):63-78.,4747 Jensen SQ. Masculinity at the margins - othering, marginality and resistance among young marginalized ethnic minority men'. NORMA 2010; 5(1):7-26.. However, within these seemingly dichotomic-polarizing discourses, the subaltern tends to be voiceless, restraining further relational exploration over IFP on contemporary societies2929 Honneth A. The Struggle for Recognition: The Moral Grammar of Social Conflicts. Cambridge: Polity Press; 1995.,4848 Bhatt C. The Fetish of the Margins: Religious Absolutism, Anti-racism and Postcolonial Silence. New Formations 2006; 59:95-115.

49 Cuche D. A Noção de Cultura nas Ciências Sociais. Bauru: EDUSC; 2002.
-5050 Kergoat D. Dynamique et consubstantialité des rapports sociaux. In: Dorlin E, organizador. Sexe, race, classe: pour une épistémologie de la domination. Paris: Actuel Marx Confrontations; 2009. p. 111-125.; contradicting postcolonial understandings on the othering process2222 Jensen SQ. Othering, identity formation and agency. Quali Stud 2011; 2(2):63-78.,4747 Jensen SQ. Masculinity at the margins - othering, marginality and resistance among young marginalized ethnic minority men'. NORMA 2010; 5(1):7-26., our findings point to political and discursive disputes/tensions between individuals over HIV/AIDS stigma and criminalization.

Parker and Anggleton5151 Parker R, Aggleton P. HIV and AIDS-related stigma and discrimination: a conceptual framework and implications for action. Soc Sci Med 2003; 57(1):13-24. had extended foundational concepts of stigma pointing out power-disputing and social inequities as core relational domains of stigma, which is a structural societal phenomenon. In this sense, stigma is more than a significantly discrediting attribute, rather, it is an intimately phenomenon linked to the reproduction of social difference that burdens those in positions of less power and recognition in society. In this framework, stigma is also presented in discourse and health policies across different levels of power dynamics. In our study, this inner conflicting process primarily accounts for structuring each party itself2828 Simmel G. Conflict and the web of group-affiliations. New York: The Free Press; 1964.,2929 Honneth A. The Struggle for Recognition: The Moral Grammar of Social Conflicts. Cambridge: Polity Press; 1995. and, paradoxically and simultaneously, questions the group differentiation by its pretense superiority over PLWH. While PLWH have expressed PrEP-related stigma66 Jaspal R, Daramilas C. Perceptions of pre-exposure prophylaxis (PrEP) among HIV-negative and HIV-positive men who have sex with men (MSM). Cogent Med 2016; 3:1-16.,5252 Hammack PL, Meyer IH, Krueger EA, Lightfoot M, Frost DM. HIV testing and pre-exposure prophylaxis (PrEP) use, familiarity, and attitudes among gay and bisexual men in the United States: A national probability sample of three birth cohorts. PLoS One 2018; 13:e0202806., others have indicated PrEP shortens HIV-serology distances1717 Brisson J, Nguyen VK. Science, technology, power and sex: PrEP and HIV-positive gay men in Paris. Cult Health Sex 2017; 19(10):1066-1077.. These paradoxical power-disputing relations within and outside the group constitute necessary elements of IFP on contemporary societies2929 Honneth A. The Struggle for Recognition: The Moral Grammar of Social Conflicts. Cambridge: Polity Press; 1995.,5353 Giddens A. Modernity and self-identity: Self and society in the late modern age. Cambridge: Polity; 1991.. Despite the undefined identity, PrEPsters encompass relational process related to agency-identity formation4343 Ybema S, Keenoy T, Oswick C, Beverungen A, Ellis N, Sabelis I. Articulating identities. Human Relations 2009; 62(3):299-322. in search for recognition and differentiation from other HIV/AIDS groups3030 Leeuwen B. A Formal Recognition of Social Attachments: Expanding Axel Honneth's Theory of Recognition. Inquiry 2007; 50(2):180-205.. Upon this context, stigma assembles political discourses and power dynamics altogether with IFP in an increasingly context of social individualization.

Individuals on PrEP share common codes with PLWH, which challenges an IFP’s analysis solely on othering processes. This points to an ever-increasing ambivalence over IFP in highly individualized societies2727 Beck U, Beck-Gernsheim E. Individualization - Institutionalized individualism and its social and political consequences. London: SAGE; 2002.,2929 Honneth A. The Struggle for Recognition: The Moral Grammar of Social Conflicts. Cambridge: Polity Press; 1995.. The theory of IFP via othering process assumes that subordinate people are offered, while being relegated to, subject positions as others in discourse/society. Arguably, these processes do not involve ambivalence, structural conflicts or the exoticism of the colonial gaze2222 Jensen SQ. Othering, identity formation and agency. Quali Stud 2011; 2(2):63-78.,5454 Spivak GC. The Rani of Sirmur: an essay in reading the archives. History Theory 1985; 24(3):247-272.. As we have shown, individuals confront these assumptions as they share common codes with the subaltern, such as the Truvada use, and perhaps social marginalization statuses5555 Shrestha R, Copenhaver M. Exploring the Use of Pre-exposure Prophylaxis (PrEP) for HIV Prevention Among High-Risk People Who Use Drugs in Treatment. Front Public Health 2018; 6:195.. Importantly, individuals’ differentiation lies on a progressive discourse to end AIDS as they consider themselves to be advocates fighting for ending HIV/AIDS. Both individuals on PrEP and PLWH may share the inequities to access Health Care facilities in their regions. Moreover, antiretroviral drugs to prevent and treat HIV/AIDS are not adequately available to all in need, where marginalized communities of gbMSM of color are disproportionately affected by lack of resources and health care, particularly in the United States1818 Elopre L, McDavid C, Brown A, Shurbaji S, Mugavero MJ, Turan JM. Perceptions of HIV Pre-Exposure Prophylaxis Among Young, Black Men Who Have Sex with Men. AIDS Patient Care STDs 2018; 32(12):511-518.. Thus, othering discourses might only be beneficial/opportune to individuals on PrEP as they sell themselves out of the AIDS stigma and criminalization PLWH are subject to, while utilizing the other as a beneficial artifact of social differentiation. As Parker5656 Parker R. Stigma, prejudice and discrimination in global public health. Cad Saude Publica 2012; 28(1):164-169. more recently pointed out, the dynamics of stigma are rooted in societal violence, in which the production and reproduction of inequities nurtures discrimination that, ultimately, aggregates to HIV/AIDS-related stigma. This process challenges modern-polar and non-ambivalent identity processes, as individual construct their autobiographical paths immersed in this conflicting arena2727 Beck U, Beck-Gernsheim E. Individualization - Institutionalized individualism and its social and political consequences. London: SAGE; 2002.,5353 Giddens A. Modernity and self-identity: Self and society in the late modern age. Cambridge: Polity; 1991.. This draws attention to the levels at which individuals negotiate/mediate their self-expression and societal locations amidst diverse biosocialities4040 Hammack PL, Toolis EE, Wilson BDM, Clark RC, Frost DM. Making Meaning of the Impact of Pre-Exposure Prophylaxis (PrEP) on Public Health and Sexual Culture: Narratives of Three Generations of Gay and Bisexual Men. Arch Sex Behav 2019; 48(4):1041-1058., while being highly integrated into current biomedical approaches77 Young I, Davis M, Flowers P, McDaid LM. Navigating HIV citizenship: identities, risks and biological citizenship in the treatment as prevention era. Health Risk Soc 2019; 21(1-2):1-16..

These social dynamics help to shed light on broader consequences upon individualization and IFP in the context of the ongoing biomedical prevention landscape. The subpolitics2727 Beck U, Beck-Gernsheim E. Individualization - Institutionalized individualism and its social and political consequences. London: SAGE; 2002. individuals perform mostly refers to individuating processes - which accounts for personalization, uniqueness and the ideal of individual emancipation2626 Beck U. Risk society: towards a new modernity. London: SAGE, 1992.,2727 Beck U, Beck-Gernsheim E. Individualization - Institutionalized individualism and its social and political consequences. London: SAGE; 2002. -, in conflation with biomedical productions and proximal biosocialities. Simultaneously, the identity subpolitics differentiates by aggregating groups as individuals respond to common patterns of consume that health providers and health systems offer as suitable prevention strategies; as Beck and Beck-Gernsheim claim2727 Beck U, Beck-Gernsheim E. Individualization - Institutionalized individualism and its social and political consequences. London: SAGE; 2002., the health sector plays a major role in producing the IFP within the individualization process, while very often dismisses the ways in which societal and negative outcomes, such as stigma and discrimination towards PLWH, ought to be addressed towards protecting marginalized populations2020 Seffner F, Parker R. The waste of experience and precariousness of life: contemporary political moment of the Brazilian response to aids. Interface (Botucatu) 2016; 20(57):293-304..

Final remarks

We aimed to identify and to understand in which ways othering discourses link to identity formation processes of individuals on PrEP in the context of the ongoing biomedical prevention landscape. We discussed the ways this process occurs by leading high self-worth individuals to differentiated scenarios of biosocial identities, in which they negotiate their inner interests upon conflicting discourses of stigma and discrimination towards PLWH.

In being highly interactive, contributors may have shown greater awareness to PrEP, reported an optimistic or positive outlook on PrEP as these were found on members of the LGBT identity Facebook groups5757 Young LE, Fujimoto K, Schneider JA. Facebook group affiliation ties, group topics, and HIV behavioral characteristics among young Black men who have sex with men: Potential for public health intervention. SSM Popul Health 2019; 2(9):100510.. Our approach emphasized in which ways individuals’ discourses tension both self-expression and group-differentiation amidst othering discourse and IFP, while it lacks the ethnic, socio-economic status and comprehensive cultural backgrounds of the group members, which may inform their positionality in discourse/society. Further research with gbMSM on PrEP across diverse realities and locations should advance understandings on IFP and experiences of stigma directed to PLWH. Considering the experiences and perspectives of gbMSM living with HIV66 Jaspal R, Daramilas C. Perceptions of pre-exposure prophylaxis (PrEP) among HIV-negative and HIV-positive men who have sex with men (MSM). Cogent Med 2016; 3:1-16.,1717 Brisson J, Nguyen VK. Science, technology, power and sex: PrEP and HIV-positive gay men in Paris. Cult Health Sex 2017; 19(10):1066-1077. it is also important to acknowledge that the given stigma and discrimination articulated through an othering process that mostly HIV-negative members expressed out, which have direct implications for awareness of health care providers, health policies and community education programs aiming at eliminating the HIV/AIDS stigma and criminalization amidst increasing biomedical approaches to HIV/AIDS prevention.

Acknowledgements

We would like to thank Richard Guy Parker (Columbia University), Myriam Mitjavila (UFSC) and Cristiane Cabral (USP) for reading the paper and providing suggestions at its very early stage as first author’s Master of Science Graduate Committee Members. Additional thanks to all anonymous peer-reviewers and to Felipe Oliva for their valuable and constructive contributions to this article.

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  • Funding

    The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: this work was supported by the Coordenação de Aperfeiçoamento de Pessoal de Nível Superior (CAPES) Agency; Fundação de Amparo à Pesquisa do Estado de São Paulo (Fapesp) under Grant 2015/16218-0.

Publication Dates

  • Publication in this collection
    04 May 2022
  • Date of issue
    May 2022

History

  • Received
    23 Feb 2021
  • Accepted
    07 July 2021
  • Published
    09 July 2021
ABRASCO - Associação Brasileira de Saúde Coletiva Rio de Janeiro - RJ - Brazil
E-mail: revscol@fiocruz.br