ABSTRACT

This article describes and analyzes, from an ethnographic perspective, how people participating in the Loka de Efavirenz Collective perceive, experience, and face the effects of AIDS in their daily lives, in order to contribute to the understanding of the new forms of HIV/AIDS activism that emerged in the 2010s in Brazil and their relationship as processes of subjectivation and construction of informal care networks. We show how the members of Loka articulate themselves as subjects crossed by the HIV/AIDS stigma, claiming the exercise of their sexualities and identities marked by gender, race, and class. In this way, they enter the dispute for rights through the production of knowledge and actions that acquire strength in the production of a network of care beyond health services. The analysis of the Collective’s practices and elaborations highlights AIDS as a privileged lens to situate the challenges, struggles, discussions, and debates that cut across modes of regulating erotic-sexual practices and gender expressions, reflecting broader social tensions and changes.

KEYWORDS
HIV; Acquired Imunnodeficiency Syndrome; Social stigma; Caring; Policy

Introduction

Since its inception, the AIDS epidemic has triggered an epidemic of meanings in relation to the body and sexuality, redefining sexualized identities and tensioning processes of moral and sexual regulation. It gave rise to many forms of persecution, demoralization, and dehumanization of faggots, travestis, sex workers, drug users, black people, and immigrants¹1 Perlongher N. O que é aids . São Paulo: Brasiliense; 1987.,²2 Pollak M. Os homossexuais e a AIDS: sociologia de uma epidemia; tradução de Paula Rosas. São Paulo: Estação Liberdade; 1990.,³3 Aggleton P, Parker R. Estigma, discriminação e AIDS. Rio de Janeiro: ABIA; 2001.,⁴4 Mott L. A transmissão dolosa do HIV-Aids: relatos na imprensa brasileira. Impul Rev Ciênc Soc Hum. 2002 [acesso em 2022 set 10]; 1(32):157-174. Disponível em: https://silo.tips/download/a-transmissao-dolosa-do-hiv-aids-relatos-na-imprensa-brasileira.
https://silo.tips/download/a-transmissao... ,⁵5 Barata FG. A primeira década da AIDS no Brasil: o Fantástico apresenta a doença ao público (1983 a 1992), 2005. [dissertação]. São Paulo: Universidade de São Paulo; 2006. [acesso em 2019 maio 3]. Disponível em: https://www.teses.usp.br/teses/disponiveis/8/8138/tde-07072006-124258/pt-br.php.
https://www.teses.usp.br/teses/disponive... ,⁶6 Cavalcanti C, Barbosa RB, Bicalho P. Os Tentáculos da Tarântula: Abjeção e Necropolítica em Operações Policiais a Travestis no Brasil Pós-redemocratização. Psico Ciên Prof. 2018 [acesso em 2022 abr 29]; 38(2):175-191. Disponível em: https://www.scielo.br/j/pcp/a/MLLBpknvMfqdR66rvVGF3WD/?lang=pt.
https://www.scielo.br/j/pcp/a/MLLBpknvMf... ,⁷7 Oliveira PBG. HIV não é crime: processos de subjetivação de pessoas vivendo com HIV/AIDS, disputas políticas contemporâneas e estratégias de sobrevivência. [dissertação]. São Paulo: Universidade de São Paulo; 2021. [acesso em 2022 abr 29]. Disponível em: https://www.teses.usp.br/teses/disponiveis/8/8134/tde-07062022-150556/pt-br.php.
https://www.teses.usp.br/teses/disponive... ; as well as to survival and struggle strategies of People Living with HIV/AIDS (PLWHA), which developed civic and political mobilization tools to understand and face the political economy of stigmatization and social exclusion³3 Aggleton P, Parker R. Estigma, discriminação e AIDS. Rio de Janeiro: ABIA; 2001.⁽¹²⁾.

The Brazilian AIDS social movement, composed of Non-Governmental Organizations (NGOs), networks, foundations, and collectives, has played a fundamental role in strengthening the social groups most affected by the epidemic since its early days⁸8 Teodorescu LL, Teixeira PR. Histórias da AIDS no Brasil: a sociedade civil se organiza pela luta contra a aids. Brasília, DF: Departamento Nacional DST/Aids e Hepatites Virais; Unesco Brasil; 2015.. NGOs/AIDS were consolidated as spaces for political debates and the production of bioidentities ⁹9 Facchini R. Sopa de letrinhas: movimento homossexual e produção de identidades coletivas nos anos 90. Rio de Janeiro: Garamond; 2005.,¹⁰10 Ortega F. Biopolíticas da Saúde: reflexões a partir de Michel Foucault, Agnes Heller e Hannah Arendt. Interface. 2004 [acesso em 2022 abr 29]; 8(14):09-20. Disponível em: https://www.scielo.br/j/icse/a/KRqrqqJGqK6vshf4KKrkCbw/?lang=pt.
https://www.scielo.br/j/icse/a/KRqrqqJGq... ,¹¹11 Valle CG. Identidades, Doença e Organização Social. Porto Alegre: Hor Antrop. 2002 [acesso em 2022 abr 29]; 8(17):179-210. Disponível em: https://www.scielo.br/j/ha/a/HFxjkCBBsCnvHdN8Nfk7ncS/?lang=pt#.
https://www.scielo.br/j/ha/a/HFxjkCBBsCn... ,¹²12 Perrusi A, Franch M. Carne com carne: gestão do risco e HIV/Aids em casais sorodiscordantes no Estado da Paraíba. Rev Ciênc Soc Pol Trab. 2012 [acesso em 2022 abr 29]; 2(37):179-200. Disponível em: https://periodicos.ufpb.br/ojs/index.php/politicaetrabalho/article/view/14880/8440.
https://periodicos.ufpb.br/ojs/index.php... , articulating with other social movements ¹³13 Silva CLC. Ativismo, ajuda-mútua e assistência: a atuação das organizações não governamentais na luta contra AIDS. [tese]. Rio de Janeiro: Universidade Federal do Rio de Janeiro; 1999.,¹⁴14 Câmara C, Lima RM. Histórico das ONGs/Aids e sua contribuição no campo das lutas sociais. Direitos humanos, cidadania e AIDS. Cadernos ABONG. 2000 [acesso em 2022 abr 29]; 28:29-71. Disponível em: http://www.bibliotecadigital.abong.org.br/bitstream/handle/11465/183/ABONG_DIREITOS%20HUMANOS%2C%20CIDADANIA%20E%20AIDS.pdf?sequence=1&isAllowed=y.
http://www.bibliotecadigital.abong.org.b... ,¹⁵15 Valle CG. Apropriações, conflitos e negociações de gênero, sexualidade e sorologia: etnografando situações e performances no mundo social do HIV/AIDS (Rio de Janeiro). Rev Antrop USP. 2008 [acesso em 2022 abr 29]; 51(2):200-236. Disponível em: https://www.revistas.usp.br/ra/article/view/27292.
https://www.revistas.usp.br/ra/article/v... in a modality of service provision and peer prevention experience that puts Brazil as an international role model⁸8 Teodorescu LL, Teixeira PR. Histórias da AIDS no Brasil: a sociedade civil se organiza pela luta contra a aids. Brasília, DF: Departamento Nacional DST/Aids e Hepatites Virais; Unesco Brasil; 2015.⁽¹⁶⁾. Since the 2010s, the growth of the biomedical focus on Treatment as Prevention (TasP) strategies, supported by the advancement and increasing availability of Antiretroviral Therapies (ART), combined with changes in sources and forms of funding for community prevention actions, has shifted the centrality of NGOs/AIDS in the Brazilian response to the epidemic. In contrast, informal collectives, which gathers people with emphasis on the issue of living with HIV, gained space in the critical dialogue with the policies of Sexually Transmitted Infections (STIs/AIDS) in Brazil. In this scenario of diffusion of the idea of chronicity of AIDS¹⁶16 Borges RE, Silva M, Melo L. Mas não tive coragem de contar: a revelação da condição sorológica na experiência amorosa de pessoas que vivem com HIV. Saúde Soc. 2017 [acesso em 2022 jan 11]; 26(3):664-675. Disponível em: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0104-12902017000300664&lng=en&nrm=iso.
http://www.scielo.br/scielo.php?script=s... ,¹⁷17 Simões JA. Gerações, mudanças e continuidades na experiência social da homossexualidade masculina e da epidemia de HIV-Aids. Sex. Salud Soc. 2018 [acesso em 2022 jan 11]; 29:313-339. Disponível em: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1984-64872018000200313&lng=pt&nrm=iso.
http://www.scielo.br/scielo.php?script=s... , when the possibility of living with HIV with quality of life seemed to become the “definitive response in the field of prevention”¹⁸18 Cortez LCA. ‘Ou eu luto, ou eu morro’: ativismo em HIV/AIDS e processos de subjetivação na experiência da coletiva Loka de Efavirenz. [dissertação]. Natal: Universidade Federal do Rio Grande do Norte; 2019. 121 f.⁽⁵⁶⁾, as long as it adhered to ART, activisms such as that of the Loka de Efavirenz Collective emerged as dissenting voices that tension the narrative that “the epidemic is controlled because there is medicine available”.

From an ethnographic perspective, this article aims to understand how the people participating in the Loka de Efavirenz Collective understand, experience, and face the impact of forms of AIDS management in their daily lives. We seek to show how Loka people articulate themselves as subjects marked by the stigma of HIV/AIDS, claiming the exercise of their sexualities and entering the dispute for sexual rights¹⁹19 Weeks J. Sex, politics and society : the regulation of sexuality since 1800. London: Longman; 1981.,²⁰20 Carrara S. Moralidades, racionalidades e políticas sexuais no Brasil contemporâneo. Mana. 2015 [acesso em 2022 jan 11]; 21(2):323-345. Disponível em: https://www.scielo.br/j/mana/a/6D5zmtb3VK98rjtWTQhq8Gg/?lang=pt.
https://www.scielo.br/j/mana/a/6D5zmtb3V... through the production of knowledge and actions that go beyond the individual scope and produce a network of care in addition to the health services. We consider that the practices of the Collective contribute to an intersectoral and intersectional critique of the epidemic, ranging from problems of access to health services by black, indigenous, trans, and travestis people to difficulties in adhering to treatment in contexts of structural and institutional violence¹⁸18 Cortez LCA. ‘Ou eu luto, ou eu morro’: ativismo em HIV/AIDS e processos de subjetivação na experiência da coletiva Loka de Efavirenz. [dissertação]. Natal: Universidade Federal do Rio Grande do Norte; 2019. 121 f..

The concept of sexual politics¹⁹19 Weeks J. Sex, politics and society : the regulation of sexuality since 1800. London: Longman; 1981.,²⁰20 Carrara S. Moralidades, racionalidades e políticas sexuais no Brasil contemporâneo. Mana. 2015 [acesso em 2022 jan 11]; 21(2):323-345. Disponível em: https://www.scielo.br/j/mana/a/6D5zmtb3VK98rjtWTQhq8Gg/?lang=pt.
https://www.scielo.br/j/mana/a/6D5zmtb3V... , which underlies the analysis, emphasizes the complex and heterogeneous nature of the ways of regulating sexuality, allowing different forms of public intervention to be approached together, including several types of activism and social movements. In addition to arguments and concepts of a technical and scientific nature, moral values, principles, and political positions involving confrontations and coalitions of different subjects and social forces are at stake. Since its outbreak, AIDS has repositioned and changed questions about personal behavior, morality, and social policy, dramatizing tensions and collective anxieties accumulated around erotic-sexual practices and gender expressions. The experience of the Loka de Efavirenz Collective helps to capture part of the recent dynamics of the ways of regulating the epidemic, highlighting AIDS as a privileged lens to situate the challenges, struggles, discussions and debates that cross sexual policies, reflecting tensions and wider social changes.

Methods

The ethnographic research that underlies this article is part of the master’s dissertation of Pisci Bruja Garcia de Oliveira, supervised by Júlio Assis Simões⁷7 Oliveira PBG. HIV não é crime: processos de subjetivação de pessoas vivendo com HIV/AIDS, disputas políticas contemporâneas e estratégias de sobrevivência. [dissertação]. São Paulo: Universidade de São Paulo; 2021. [acesso em 2022 abr 29]. Disponível em: https://www.teses.usp.br/teses/disponiveis/8/8134/tde-07062022-150556/pt-br.php.
https://www.teses.usp.br/teses/disponive... . This research explored the increasing stigmatization of PLWHA in association with the resumption of attempts to criminalize HIV transmission, in a scenario of increased records of HIV infection in young populations of trans and travestis people, gay people, and other men who have sex with men (MSM).

To address aspects of the knowledge production, articulation, and activism of the Loka de Efavirenz Collective (hereafter referred to only as Loka), we used data obtained from interviews and conversation circles with participants, as well as observation reports and social media records, in addition to field notes taken by Pisci Bruja while participating in the 22nd International AIDS Conference (AIDS 2018) in Amsterdam.

The interviews and the conversation circle are inspired by the methodological proposal of co-research²¹21 Roggero G. Breves notas sobre o método. Produção de saber e copesquisa. Lugar Comum. 2013 [acesso em 2022 jan 11]; 1(39):91-96. Disponível em: https://uninomade.net/wp-content/files_mf/111206131220ProvaFinal2_LugarComum39.pdf.
https://uninomade.net/wp-content/files_m... , to highlight the shared, discussed, and jointly constructed character of Loka’s reading of AIDS, although its members are today in different places in the academia (anthropology, collective health, psychology, philosophy, geophysics, sociology, arts, languages), in institutional politics (one participant is a councilor in a joint mandate) and in the artistic and cultural scene, acting as performers, poets, and cultural producers, among others. The conversation circle is a form of debate and construction of shared knowledge that is part of the repertoire of several contemporary activisms. The conversation circle can pave the way to form, review, and change opinions with more depth and reflection, supported by the memory awakened by the dialogue, as a privileged and singular moment for sharing and exchanging experiences, speech, and listening, in which fraternization, venting, agreements, divergences, and ponderations can fit²²22 Moura AF, Lima MG. A reinvenção da roda: roda de conversa, um instrumento metodológico possível. Rev Temas Educ. 2014 [acesso em 2022 abr 29]; 23(1):98-106. Disponível em: https://periodicos.ufpb.br/index.php/rteo/article/view/18338.
https://periodicos.ufpb.br/index.php/rte... .

Pisci Bruja, the co-author of this article, also participates in the Loka, which gives the research a partially autoethnographic dimension. Although she mostly talks about her own experience with living with HIV/AIDS, the autoethnographer starts to analyze broader social and political issues, as she also refers to experiences shared and engaged with other PLWHA narratives and which, except for their intersectionalities, are similarly crossed by the power relations constituted by the different understandings of the epidemic. Thus, the exchanges generated from the conversation circles produce knowledge apprehended through the body itself that, in its movements and encounters with different environments, people, objects, experiences various emotions²³23 Gama F. A autoetnografia como método criativo: experimentações com a esclerose múltipla. Anuário Antropológico. 2020 [acesso em 2022 abr 29]; 45(2):188-208. Disponível em: https://journals.openedition.org/aa/5872.
https://journals.openedition.org/aa/5872... , thus enabling the re-elaboration of numerous processes around stigma and the formation of informal care networks.

What is Loka de Efavirenz?

Loka is a collective of young people (today between 20 and 35 years old) living with HIV/AIDS. The vast majority call themselves black, although the collective has some white people: Pisci Bruja, Ladyane Vieira, and Beatriz. Initially, Loka was composed of cisgender people, but this picture also changed when at least three members transitioned and became travestis. Most were born in São Paulo and live there. There are also members or collaborators from Maranhão and Bahia, as well as paulistas (those who were born in the state of São Paulo) who now reside in Rio Grande do Norte and Paraíba.

Loka emerged in 2016, from the course ‘Youth Participation, Activism, and Human Rights in HIV/AIDS in the State of São Paulo’, organized by Carolina Iara, Lili Nascimento, and Renan Moser. This course, promoted by the Rede de Jovens São Paulo Positivo, in partnership with the State Coordination of STD/AIDS of the State Secretariat of Health of São Paulo (SES-SP) and supported by the United Nations Joint Program on HIV/AIDS (Unaids), brought together young people with the objective of building mobilizations in the face of the new challenges of the epidemic. It was in this space that most of the current members met and started to collectively build a network of affective support, material strengthening, and subjective reconstruction.

In the beginning, it was not only AIDS that affected them, but also poverty, hunger, the side effects of medications, among other vulnerabilities. Living ‘illegally’ in the Residential Complex of the University of São Paulo (Crusp), those who studied at the university shared their plate with those who had nothing to eat. Or, when this was not possible, they would go to the street market called Ceasa, seeking and collecting leftovers of fruits and vegetables to feed the group. Thus, the bonds were established through nourishment and sharing of the pains and joys of lives affected by violence. Their union was necessary for them to go through the most difficult moments and survive. The Lokas, in their own words, came together to survive.

During almost three years (between 2016 and 2019), Loka was building itself as a sharing and intervention group, creating a Facebook page²⁴24 FACEBOOK. Loka de Efavirenz. [acesso em 2022 abr 29]. Disponível em: https://pt-br.facebook.com/LokadeEfavirenz/.
https://pt-br.facebook.com/LokadeEfavire... with collective reflections. The discussions, mostly about AIDS, used to take hours and usually occurred during special moments while cooking, which would make them ‘put AIDS on the table and transform pain into joke’. Mockery, a characteristic that has always crossed Loka, is a way to ease the pain and help to ‘heal the wounds of life’. Several opportunities for actions began to emerge beyond Facebook: invitations to discuss AIDS and develop activities on safe sex, performances and other interventions in universities, national and international conferences, sex parties in São Paulo, as well as to writing and reflecting on various digital platforms. Loka started to compose other institutional spaces, such as the Rede de Jovens São Paulo Positivo, and to build political articulations and interventions in the Legislative Assembly (ALESP) and SES-SP. Some members returned to university, to finish their undergraduate studies or start a master’s degree. In addition, they even raised funds from public notices, such as VAI 2019, from the Municipal Secretariat of Culture of São Paulo, in which they developed the project called ‘Avivamento do Corpo PositHIVo’ (‘Revival of the PositHIVe Body’, throughout the first year of the Covid-19 pandemic.

Most Loka members named this process of collective construction and strengthening as ‘aquilombamento,’ an ancestral strategy of social organization and production of technologies that allowed black and indigenous people to survive the genocide. According to Beatriz Nascimento²⁵25 Nascimento B. Quilombos: mudança social ou conservantismo? 1976. In: Nascimento B. Quilombola e Intelectual: possibilidades nos dias da destruição. São Paulo: Filhos da África; 2018., the word ‘quilombo’, which means ‘union’, refers to an African social institution that allowed the incorporation of people through relationships of ‘initiation’ that transversally cut the structures of lineage. In the context of diaspora and slavery, the quilombo became a symbol of black resistance to oppression and the projection of an autonomous form of social organization. Thus, by translating bonds created through the ‘initiation’ of living with HIV/AIDS into an instrument of affirmation and resistance, many of the Lokas were able to get back on their feet, dream, and prospect for the future.

As in other experiences recorded in the literature on HIV/AIDS activism, the act of sharing memories and meanings opened up new horizons and perspectives for what seemed to be a single path. With the construction of safe spaces, exchange, maintenance of care and production of knowledge, Loka also moved from ‘HIV-prophecy’ to ‘HIV-territory,’ from curse to access to health care, reception and exchanges²⁶26 Melo LP, Mariana GP, Jared WMS, et al. Do HIV-profecia ao HIV-território: um estudo de caso sobre juventude, subjetividade e ativismo em HIV/aids. Physis. 2021 [acesso em 2022 abr 29]; 31(04):e310406. Disponível em: https://www.scielo.br/j/physis/a/8PqhqfyLqTqPGkzXjMvzd7y/abstract/?lang=pt.
https://www.scielo.br/j/physis/a/8Pqhqfy... . Therefore, in general, Loka is understood as a space to produce knowledge, affection, and heal.

AIDS in question: crossings and perceptions of Loka

A conversation circle offered most of the issues discussed in this section. Marcelo Jardim, Lili Nascimento, Carolina Iara, Ramon Soares, Ya Mattos, Cadiva (Carlos Eduardo), José Daniel, and Pisci Bruja participated in the conversation. The triggering issue was raised by Pisci Bruja, who mentioned the main aspects of the criminalization of HIV transmission raised in her master’s dissertation. The construction of the categories ‘with AIDS’ and ‘risk group’, ‘AIDS policies’, the current LGBTQIA+ movement in Brazil and moral, political, and religious disputes motivated by accusations of alleged intentional HIV transmission were discussed.

Between 2010 and 2018, Latin America recorded an increase of 7% in the number of HIV infections, according to the 2019 Unaids report²⁷27 Unaids. Portal de Notícias. [acesso em 2022 abril 29]. Disponível em: https://unaids.org.br/.
https://unaids.org.br/.... . Although between 2010 and 2013 there has been a decrease in the number of infections in Brazil, the number of cases increased on the continent in the remainder of the decade, with an individual growth of 21%. The epidemic has become more concentrated again, with an increase in the number of HIV infection, especially in the younger population, between 20 and 34 years old, mostly black and brown people. Regarding AIDS mortality, between 2010 and 2020, there was an increase of 10.4% in deaths among black people, with black cis women presenting 62.9% of deaths²⁸28 Brasil. Ministério da Saúde, Secretaria de Vigilância em Saúde. Boletim Epidemiológico de HIV e Aids. Brasília, DF: MS; 2021.. Similarly, when looking at the population groups most vulnerable to HIV infection, an epidemic growth was identified among gay people and other MSM cis, with a detection rate of 18.4%²⁹29 Kerr LMD, Kendall C, Guimarães MDC, et al. HIV prevalence among men who have sex with men in Brazil. Medicine (Baltimore). 2018 [acesso em 2022 abr 29]; 97(1):S9-S15. Disponível em: https://pubmed.ncbi.nlm.nih.gov/29794604/.
https://pubmed.ncbi.nlm.nih.gov/29794604... . The population of transgender women and travestis was the most prevalent, with estimated rates above 30%³⁰30 Unaids. Dia da visibilidade trans: reunião técnica discute saúde, direitos sexuais e reprodutivos, trabalho, inclusão social e direitos humanos. 2020. [acesso em 2022 abr 29]. Disponível em: https://unaids.org.br/2020/01/dia-da-visibilidade-trans-reuniao-tecnica-discute-saude-direitos-sexuais-e-reprodutivos-trabalho-inclusao-social-e-direitos-humanos/.
https://unaids.org.br/2020/01/dia-da-vis... , while there are no epidemiological data on HIV/AIDS for transgender men and trans masculine people.

In this scenario, it has been quite common to encounter discourses stating that HIV infections would be advancing in young people because they have lost the ‘fear’ of AIDS, or because, as there is treatment, there would be no more danger of dying. These statements are widely questioned in the social AIDS movement and also contradict the experiences of Loka members, who recalled, for example, the occasions on which they were tested, when there is always tension in the air. As Ramon commented: “I find this moment of the exam curious when everyone is waiting there. You feel the tension on your skin… there is tenson in the air.”

Receiving the drugs at the antiretroviral dispensing stations is, likewise, a moment of distress and discomfort. As Cadiva reported:

The difficulties and emotions involved in the occasions of testing or picking up medication become a daily nuisance for people who experienced the haunting of having contracted HIV, such as an ‘HIV-prophecy’ (as Ramon mentioned: “In my mind, it is something… it is almost an equation: this is equal to this”); or, for the PLWHA, who pick up the medication or are simply in a specialized HIV/AIDS service these are embarrassments they wanted to avoid, as Pisci said:

Many PLWHA suffer numerous processes of mental illness and low self-esteem because they are ashamed and guilty of their condition. Therefore, it has also been common for this self-stigma – that is, this “limited capacity of a certain person to resist the symbolic apparatus that legitimizes inequalities of power”³3 Aggleton P, Parker R. Estigma, discriminação e AIDS. Rio de Janeiro: ABIA; 2001.⁽¹⁶⁾ – to become decisive in restructuring social relations³¹31 Corrigan PW. The Impact of Stigma on Severe Mental Illness. Cognitive behavioral practice. 1998 [acesso em 2022 abr 29]; 5(2):201-222. Disponível em: https://www.sciencedirect.com/science/article/abs/pii/S1077722998800060.
https://www.sciencedirect.com/science/ar... .

In addition, many labor relations are also impacted by the stigma of HIV/AIDS. According to the information released at an inter-ministerial meeting in 2016 between the Ministries of Health, Labor, and Social Security³²32 Brasil. Ministério da Saúde, Departamento de Doenças de Condições Crônicas e Infecções Sexualmente Transmissíveis. Inserção de pessoas vivendo com HIV é tema de reunião interministerial. Brasília, DF: MS; 2016. [acesso em 2022 abr 29]. Disponível em: https://telelab.aids.gov.br/index.php/2013-11-14-17-44-09/item/373-insercao-de-pessoas-vivendo-com-hiv-aids-no-mercado-de-trabalho-e-tema-de-reuniao-interministerial.
https://telelab.aids.gov.br/index.php/20... , between 60% and 70% of PLWHA do not have formal jobs³³33 Oliveira CI, Ricoldi A. Sem Loas na juventude e aposentadoria em risco: uma autoetnografia sobre o ativismo por direitos em HIV/aids. Saúde soc. 2022 [acesso em 2022 abr 28]; 31(1):e200460. Disponível em: https://pesquisa.bvsalud.org/gim/resource/zh/biblio-1352218.
https://pesquisa.bvsalud.org/gim/resourc... . According to Carolina Iara’s report – for whom AIDS has become a ‘travestility assumption’ due to the way it was built and considering the degree of marginalization of trans and travestis people – there are other concerns at stake:

According to the Stigma Index in relation to People Living with HIV/AIDS in Brazil, of the 1,492 research participants, about 379 (25.4%) claimed to have already avoided testing due to fear of the stigma of AIDS³⁴34 Unaids. Sumário Executivo: Índice de Estigma em relação às Pessoas vivendo com HIV/AIDS no Brasil. [s. l.]: [s. n.]; 2019. [acesso em 2022 abr 28]. Disponível em: https://unaids.org.br/wp-content/uploads/2019/12/2019_12_06_Exec_sum_Stigma_Index-2.pdf.
https://unaids.org.br/wp-content/uploads... . In this sense, the construction of an affective-political network, Loka, focuses on the transformation of this fear and guilt: “Loka’s work makes me understand that it is not my fault, I can have relations without being afraid of HIV,” said Cadiva.

When Cadiva mentions ‘having relations being afraid of HIV,’ she refers to everything that permeates the daily, sexual, and affective relationships and experiences of PLWHA. The issue of stigma and its consequent production of power asymmetries generates greater pressure around the responsibility for the prevention of the other, as well as organizes a new ‘risk management’ in PLWHA. This has developed in diverse ways: when ‘posithives’ begin to relate only to other ‘posithives’³⁵35 Silva LAV, Iriart JAB. Práticas e sentidos do barebacking entre homens que vivem com HIV e fazem sexo com homens. Interface. 2010 [acesso em 2022 abr 29]; 14(35):739-752. Disponível em: https://www.scielo.br/j/icse/a/nMhxxm3Rx44MvLV9StFGXmN/?lang=pt.
https://www.scielo.br/j/icse/a/nMhxxm3Rx... ; they transform their behaviors into a process of ‘personal self-modeling’³⁶36 Vale CG. Crime e castigo: sexualidade, moral e criminalização da transmissão do HIV/Aids. 35. Encontro Anual da ANPOCS, Caxambu: ANPOCS; 2011.; they apply to their lives a kind of ‘preventive altruism’³⁷37 Godoi AMM. Criminalização da transmissão sexual do HIV: uma abordagem bioética. [tese]. Brasília, DF: Universidade de Brasília; 2013.; they manage the possibilities of care and co-responsibility through an ‘ethics of transmission’³⁸38 Franch M. Do clube do carimbo à ética das relações: a criminalização da transmissão do HIV na mídia e nas experiências de pessoas vivendo com HIV/AIDS. In: Teixeira CC, Valle CG, Neves RC, organizadores. Saúde, mediações e mediadores. Brasília, DF: ABA Publicações; Natal: EDUFRN; 2017. p. 365-405., and they create strategies to expose or not their own serology to their partner¹⁶16 Borges RE, Silva M, Melo L. Mas não tive coragem de contar: a revelação da condição sorológica na experiência amorosa de pessoas que vivem com HIV. Saúde Soc. 2017 [acesso em 2022 jan 11]; 26(3):664-675. Disponível em: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0104-12902017000300664&lng=en&nrm=iso.
http://www.scielo.br/scielo.php?script=s... .

The issue of preventive liability is disproportionately charged to PLWHA, which is evident in the progress in the processes of criminalization of HIV transmission in Brazil. Between 2013 and early 2020, there was a proportional increase in the number of criminal cases for alleged intentional HIV transmissions three times greater than in the first 30 years of the epidemic⁷7 Oliveira PBG. HIV não é crime: processos de subjetivação de pessoas vivendo com HIV/AIDS, disputas políticas contemporâneas e estratégias de sobrevivência. [dissertação]. São Paulo: Universidade de São Paulo; 2021. [acesso em 2022 abr 29]. Disponível em: https://www.teses.usp.br/teses/disponiveis/8/8134/tde-07062022-150556/pt-br.php.
https://www.teses.usp.br/teses/disponive... .

This process of advancing the judicialization of health, accompanied by the increasing constitutionalization of social rights, becomes a double-edged sword, because, while it allows rights to be assured, it also contributes to these rights being increasingly subjected to the scrutiny of legal institutions. Thus, if there is, on the one hand, a power in the sense of claiming rights to health, there may be, on the other hand, a series of challenges, contradictions, and even a ‘suffocation’ of participatory mechanisms³⁹39 Asensi FD. Judicialização pode salvar o SUS. In: Pinheiro R, Müller Neto J, Ticianel FA, et al., organizadores. Construção social da demanda por cuidado: revisitando o direito à saúde, o trabalho em equipe, os espaços públicos e a participação. Rio de Janeiro: Uerj; Abrasco; 2013. p. 55-66., depending on how the judiciary is operationalized.

In this sense, the criminalization of HIV transmission goes against the rights of PLWHA by requiring that only them have to reveal their serology to their partners if they want to have sexual intercourse without using condoms, ignoring the stigma and the ‘undetectability’ provided by the adherence to antiretrovirals – that is, when the viral load in the bloodstream is zeroed through the regular use of drugs and the AIDS situation and the transmission of the virus itself is avoided. These are processes that use the stigma to control the sexual and social conduct of PLWHA in the name of the ‘social order’⁷7 Oliveira PBG. HIV não é crime: processos de subjetivação de pessoas vivendo com HIV/AIDS, disputas políticas contemporâneas e estratégias de sobrevivência. [dissertação]. São Paulo: Universidade de São Paulo; 2021. [acesso em 2022 abr 29]. Disponível em: https://www.teses.usp.br/teses/disponiveis/8/8134/tde-07062022-150556/pt-br.php.
https://www.teses.usp.br/teses/disponive... ,³⁷37 Godoi AMM. Criminalização da transmissão sexual do HIV: uma abordagem bioética. [tese]. Brasília, DF: Universidade de Brasília; 2013.. The intersection between transphobia, AIDS-phobia and racism makes Carolina Iara’s social, sexual, and affective experiences permeated by these tensions:

In criminal cases of HIV transmission tried in the court of appeals in four states (São Paulo, Rio de Janeiro, Minas Gerais, Rio Grande do Sul) and in the Federal District, which have been analyzed since the beginning of the epidemic until the end of 2019, there were no cases in which the use of biomedical discourse by the court system managed to advance and talk about prevention besides condoms and the false idea that AIDS no longer leads to death⁷7 Oliveira PBG. HIV não é crime: processos de subjetivação de pessoas vivendo com HIV/AIDS, disputas políticas contemporâneas e estratégias de sobrevivência. [dissertação]. São Paulo: Universidade de São Paulo; 2021. [acesso em 2022 abr 29]. Disponível em: https://www.teses.usp.br/teses/disponiveis/8/8134/tde-07062022-150556/pt-br.php.
https://www.teses.usp.br/teses/disponive... . The undetectability and untransmittability caused by the use of antiretrovirals were not considered to absolve any cases of supposed HIV transmission until that date⁷7 Oliveira PBG. HIV não é crime: processos de subjetivação de pessoas vivendo com HIV/AIDS, disputas políticas contemporâneas e estratégias de sobrevivência. [dissertação]. São Paulo: Universidade de São Paulo; 2021. [acesso em 2022 abr 29]. Disponível em: https://www.teses.usp.br/teses/disponiveis/8/8134/tde-07062022-150556/pt-br.php.
https://www.teses.usp.br/teses/disponive... .

Still regarding the legal aspects and the understanding of the epidemic, Carolina Iara said that she went to court to obtain leave from work (in the hospital) during the Covid-19 pandemic and believes that this was only granted because of how the court system sees the experience of living with HIV/AIDS.

Understanding that AIDS cannot be solved only with medication, but with policies of social reparation and combating stigma, Loka systematically criticized the biomedical approach of the epidemic present in the last decade, which fed the idea of the ‘end of AIDS’ as a possible strategy until 2030⁴⁰40 Unaids. Podemos erradicar a AIDS até 2030, mostra relatório do UNAIDS. 2021. [acesso em 2022 abr 4]. Disponível em: https://brasil.un.org/pt-br/129994-podemos-erradicar-aids-ate-2030-mostra-relatorio-do-unaids#:~:text=O%20pr%C3%B3ximo%20passo%20seria%20a,resultados%20na%20resposta%20ao%20HIV.
https://brasil.un.org/pt-br/129994-podem... ,⁴¹41 Associação Brasileira Interdisciplinar de Aids. 19º ENONG: Especialistas criticam a biomedicalização da epidemia de AIDS. 2017. [acesso em 2022 abr 27]. Disponível em: https://abiaids.org.br/19o-enong-especialistas-criticam-biomedicalizacao-da-epidemia-de-aids/30792.
https://abiaids.org.br/19o-enong-especia... ,⁴²42 Seffner F, Parker R. Desperdício da experiência e precarização da vida: momento político contemporâneo da resposta brasileira à aids. Interface. 2016 [acesso em 2022 ago 10]; 20(57):293-304. Disponível em: https://www.scielo.br/j/icse/a/MTZ5T7N97xXVjcGX5qxWsPh/?lang=pt#.
https://www.scielo.br/j/icse/a/MTZ5T7N97... . The name of the Collective questions this direction and seeks to resume the interrupted debate around the side effects of drugs⁴³43 Teixeira P, Paiva V, Shimma E. Tá Difícil de Engolir? Experiências de adesão ao tratamento antirretroviral em São Paulo. São Paulo: Nepaids; 2000., symbolized in Efavirenz, an antiretroviral widely used in Brazil in the form of a triple dose combined in a single pill. As a mockery, for a long time Loka has presented itself through her avatar photo on social networks with pills stuck in her nose and mouth, problematizing the routine medical advice that it is only necessary to ‘take a little pill.’

However, this does not mean that Loka does not recognize the immense importance that the use of antiretrovirals had in the reconstruction of their subjectivities and in the possibility of starting to think about a future again. Lili Nascimento, a person born with HIV, raised the issue of the differences she feels in relation to those who seroconverted at some point in life. She points out that “those who discover afterwards keep on saying ‘oh, I’m going to get the medication,’ ‘oh, AIDS…,’ ‘ oh, I can’t even talk about it…’”, and compares with what she feels as a person who has always lived with HIV:

Initially, the term ‘AIDS’ was very present in public discourses, which produced a subjectivity shaped by risk, danger, guilt, shame, and fear of death, whose understanding is still updated in some instances and institutions. As a reaction to the punitive process of subjectivation as a bioidentity risk⁷7 Oliveira PBG. HIV não é crime: processos de subjetivação de pessoas vivendo com HIV/AIDS, disputas políticas contemporâneas e estratégias de sobrevivência. [dissertação]. São Paulo: Universidade de São Paulo; 2021. [acesso em 2022 abr 29]. Disponível em: https://www.teses.usp.br/teses/disponiveis/8/8134/tde-07062022-150556/pt-br.php.
https://www.teses.usp.br/teses/disponive... , as an example of what should not be or do, there was a historical journey towards the humanization of PLWHA⁴⁴44 Silva CLC. Ativismo, ajuda-mútua e assistência: a atuação das organizações não governamentais na luta contra AIDS. [tese]. Rio de Janeiro: Universidade Federal do Rio de Janeiro; 1999., largely built by social movements.

Moreover, the evidence that undetectable is equally untransmittable has also emerged as a revolutionary aspect in the sense of transforming ‘posithive’ subjectivities. This recent bioidentity, made possible by the use and adherence to antiretrovirals, and brought by activists, researchers, and institutions through the ‘Undetectable = Untransmittable’ campaign (I=I), is beginning to grow in Brazil, and has acquired global status from the 22^nd International AIDS Conference held in Amsterdam in 2018.

According to studies conducted by Kane Race⁴⁵45 Race K. ‘Party and Play’: Online hook-up devices and the emergence of PNP practices among gay men. Sexualities. 2015 [acesso em 2022 abr 29]; 18(3):253-275. Disponível em: https://journals.sagepub.com/doi/10.1177/1363460714550913.
https://journals.sagepub.com/doi/10.1177... on the sexual practices of PLWHA that do not use condoms, in Sydney, Australia, ‘undetectable’ has been a category mobilized among these groups, including in place of ‘posithive’, since 2015. Similarly, as observed in the field while participating in the AIDS 2018 and the 4^th International Conference on Human Sciences and HIV, Pisci Bruja could note, when walking in spaces of gay sociability in Amsterdam, that the vast majority of cis gay men living with HIV/AIDS no longer identified themselves as ‘HIV positive’, ‘HIV seropositive’ or ‘people living with HIV’. They mostly referred to themselves as ‘undetectable’ people, which sounded almost like a new ontological status: ‘I am undetectable.’

Thus, this new bioidentity tries to resignify the notions of risk and transmissibility of the virus, and connects with the current biomedical and state discourses (as in the Brazilian case) of TasP, an approach that, paradoxically, tends to minimize the structural dimension of vulnerability to HIV and the participation of PLWHA as autonomous producers of prevention and care practices⁴⁶46 Calazans GJ, Pinheiro TF, Ayres JRCM. Vulnerabilidade programática e cuidado público: Panorama das políticas de prevenção do HIV e da Aids voltadas para gays e outros HSH no Brasil. Sexualidad salud sociedade. 2018 [acesso em 2022 abr 29]; 29:263-293. Disponível em: https://www.scielo.br/j/sess/a/bfYWcm96qhvs45Rby64xzgh/?lang=pt#a.
https://www.scielo.br/j/sess/a/bfYWcm96q... ,⁴⁷47 Monteiro S, Brigeiro M, Vilella WV, et al. Desafios do tratamento como prevenção no Brasil: uma análise a partir da literatura sobre testagem. Ciênc. Saúde Colet. 2019 [acesso em 2022 abr 29]; 24(5):1793-1807. Disponível em: https://www.scielo.br/j/csc/a/RNkwKrgv4Lqs7DB4QvGKmKH/?lang=pt.
https://www.scielo.br/j/csc/a/RNkwKrgv4L... . Evidence of undetectability and untransmittability is becoming increasingly familiar and appropriate in the daily lives of many PLWHA, in their sexual practices and affective relationships, as a new tool to cope with stigma⁴⁸48 Figueredo PR. I=I (indetectável=intransmissível): novos sentidos da infecção para quem vive com HIV/aids, novos desafios para a resposta à epidemia. [dissertação]. São Paulo: Universidade de São Paulo; 2019. [acesso em 2022 abr 29]; Disponível em: https://www.teses.usp.br/teses/disponiveis/5/5137/tde-09072020131940/pt-br.php.
https://www.teses.usp.br/teses/disponive... . Risk is being recalibrated, which now seems to be moving towards the notion of ‘no risk,’ transforming the sociability of living with HIV/AIDS.

Conclusions

This article sought to contribute to the understanding of the new forms of HIV/AIDS activism that emerged in the 2010s in Brazil, focusing on the experience of the Loka de Efavirenz Collective. In this effort, we also made a brief journey through the social dynamics and policies associated with the experience with HIV/AIDS.

The presence of the ‘AIDS device’¹1 Perlongher N. O que é aids . São Paulo: Brasiliense; 1987. in the fourth decade of the epidemic can be understood as an integral part of the new cultural and sexual wars that have recently intensified with the advance of various modalities of moral and religious conservatism in Brazil and worldwide. The current attacks of conservative and religious fundamentalist sectors, in their resumption of discourses of blame, mistakenly supported by the increase in HIV infections in a concentrated way, have disturbed the processes of ‘citizenship of sexual subjects’²⁰20 Carrara S. Moralidades, racionalidades e políticas sexuais no Brasil contemporâneo. Mana. 2015 [acesso em 2022 jan 11]; 21(2):323-345. Disponível em: https://www.scielo.br/j/mana/a/6D5zmtb3VK98rjtWTQhq8Gg/?lang=pt.
https://www.scielo.br/j/mana/a/6D5zmtb3V... , aiming to dismantle the notions of human rights, especially in relation to sexual and reproductive rights. Parallel to the hegemony of biomedical discourse on AIDS, we live in Brazil in contradiction under constant disputes for the maintenance of the Unified Health System (SUS) and AIDS policies, seriously impairing treatment and prevention due to the lack of or the division of medication, lack of viral load tests and CD4.

In this scenario, a daily dimension of the criminalization of PLWHA persists, which transforms apparently simple situations into major problems, constraints, and afflictions, such as performing HIV tests, withdrawing medications, relating sexually and affectionately, going to school, working, attending toilets, sharing objects, and even talking about AIDS. The persistence of stigma in relation to PLWHA in social relations and institutional treatment, despite all biotechnological advances and the production of knowledge of the social AIDS movement is strongly allied to the production and cultivation of hatred against some groups and populations, marked especially by their sexual and gender expressions, in the defense of a specific morality that does not hinder the advance of criminalization, but produces and feeds on it. The AIDS epidemic is not increasing because young people have lost their fear of AIDS, but because they are not recognized as subjects of their sexuality nor have their rights to integral health guaranteed.

It is in this scenario of moral and political disputes that Loka de Efavirenz emerged. From precarious lives, an affective-political network was formed, producing knowledge and elaborating strategies to face the multiple forms of segregation, demoralization, and dehumanization of experiences with HIV/AIDS. Since the middle of the last decade, Loka has been articulating and developing collective strengthening strategies, now considered a reference in youth activism in HIV/AIDS. By supporting themselves daily in multiple spheres, they have built a network of care based on the construction of safe relationships and sharing spaces aimed at forging new possibilities of life.

References

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