Alexander Meienberger examines the ongoing cultural and societal stigmas surrounding HIV/AIDS in Russia, highlighting the efforts of cultural initiatives to challenge these barriers and bring visibility to marginalized voices.
In contemporary Russian culture, several topics remain under tacit prohibition and are therefore virtually excluded from public discourse. Among these are physicality and sexuality—both in their general manifestations and in specific forms such as prostitution, homosexuality, and non-normative gender expressions. These topics are not only culturally sensitive but also politically charged, often stigmatized or ignored in mainstream narratives.
A particularly telling example of this broader silence is the cultural and political treatment of HIV/AIDS. The disease is not only a medical condition but also a symbolic nexus for many of the taboos surrounding sexuality. Because HIV/AIDS is frequently associated with marginalized sexualities and behaviors deemed socially deviant, it inherits and intensifies the same social stigmas (Godlevskaya and Meylakhs 2022). As a result, public discourse on HIV/AIDS is suppressed not simply because of the illness itself, but because it forces engagement with the very forms of sexuality that Russian society is reluctant to confront. In this way, the taboo surrounding HIV/AIDS is inseparable from the broader cultural silence on sexuality.
Although over four decades have passed since the discovery of Human Immunodeficiency Viruses (HIV) in 1983, and antiretroviral therapy has transformed HIV from a fatal disease to a manageable chronic condition, the topic continues to be heavily stigmatized and deliberately repressed out of the Russian public discourse. These observations raise significant questions: How can there be such a striking absence of discourse surrounding the stigma associated with HIV/AIDS in a country with a substantial number of individuals living with the condition—estimated at approximately 1.1 million Russians (Pape 2022)? Moreover, how is it possible to sustain such censorship while actively disregarding the epidemic’s impact?
Historical background: illness, sexuality, and ideology
When examining the stigmatization of HIV/AIDS in Russian literature, it becomes evident that literary representations of illness have undergone significant transformations over the centuries. In 19th-century literature, for example, tuberculosis—the illness of the century—was often portrayed not merely as a physical affliction but as a symbol of the inner conflict between spirit and body. Illness became a form of spiritual revelation, in which the body gradually wasted away, revealing the human soul in all its complexity.
With the rise of Soviet power and the formation of the “New Soviet Man” ideology in the 1930s (see Kelly 2016), illness came to be viewed in a radically different light. It was increasingly perceived as a sign of deviance, social dysfunction, or moral failure—incompatible with the image of the healthy, productive, ideologically sound Soviet citizen. Sexually transmitted infections, in particular, became highly stigmatized, associated with shame and linked to “anti-Soviet” elements such as sex workers, criminals, and so-called enemies of the people. In this context, any reference to sexually transmitted or infectious diseases was pushed out of public and cultural discourse or accompanied by strong moral condemnation and social stigma.
Therefore, when the HIV/AIDS arrived in the USSR, it was often depicted as a “Western” problem or associated with what Soviet newspapers typically described as morally deviant behavior. This perception distanced the issue of the virus’s spread from the collective cultural imagination, rendering it an individual misfortune rather than a shared societal concern. As a result, the epidemic was relegated to the private sphere, obscured by silence, shame, and prejudice.
In terms of the genealogy of the stigma attached to the virus and people who contracted it, the outbreak of HIV/AIDS in the USSR was heavily shaped by silence, secrecy, and a culture of blame, which perpetuated myths and prejudices that still hinder discussions about the epidemic in Russia today. According to Douglas Selvage (2019) and Thomas Boghardt (2009), the Committee for State Security created and launched a disinformation campaign, spreading the idea that HIV had been artificially created as a bioweapon in secret Pentagon laboratories. Other Soviet authorities argued that the virus posed a threat only to specific at-risk groups, such as homosexuals, drug users, and female sex workers. The prevailing narrative suggested that, unlike in the West, sexual promiscuity was not characteristic of the society; therefore, the virus was not considered a significant threat (Roldugina and Suverina 2024). After the collapse of the Soviet Union, this stigma, created in the late 1980s, continued to spread.
These established misconceptions gained prominence during a period when intravenous drug use was a major driver of new HIV infections. Throughout the 1990s, the escalating prevalence of injection drug use, combined with high-risk behaviors such as needle-sharing and the lack of comprehensive harm reduction strategies, led to a significant increase in HIV transmission (Bobkov et al. 1997). This was further compounded by the absence of comprehensive public health initiatives to address the crisis. As a result, these stereotypes reinforced societal stigma and marginalization, perpetuating harmful misconceptions.
Over time, these misconceptions became deeply embedded in public attitudes, leading to an ongoing misunderstanding of HIV/AIDS that continues to persist. In this context, unlike in Western countries where activists and celebrities played a pivotal role in altering perceptions of HIV/AIDS stigma and promoting awareness, Russia witnessed minimal to no high-profile advocacy. The absence of institutional support, coupled with a pervasive fear of association with the HIV/AIDS epidemic, effectively stifled potential voices that could have challenged misconceptions and promoted greater awareness.
State policies and legal reinforcement of stigma
In Russia, the stigma attached to HIV/AIDS is reinforced by a cultural discomfort with openly addressing issues that challenge traditional narratives and social norms like sexuality and addiction. These taboos marginalize the epidemic, keeping its stories untold and overshadowed by historical expectations that resist confronting its realities. The Russian government reinforces stigma through its laws.
The law on “Infection with Human Immunodeficiency Virus” (Article 122 of the Criminal Code) imposes penalties of up to five years for knowingly transmitting HIV to another person. Meanwhile, the law on “Advocating Non-Traditional Sexual Relationships among Minors” (Article 6.21 of the Code of Administrative Offenses) prohibits any positive discussion or representation of non-traditional relationships, further marginalizing affected communities. Combined with the state’s condemnation of “Western” lifestyles, these policies contribute to discrimination and show a clear lack of interest in addressing or reducing the stigma surrounding HIV/AIDS.
Despite this grim reality, there are reasons for cautious optimism. In recent years, Russia’s cultural landscape has begun to address the issue of HIV/AIDS more openly. It appears that individuals within the creative fields are now acknowledging the increasing relevance of the issue. This recognition has emerged particularly in the context of a broader conservative shift in Russia, characterized by the marginalization of discussions around sexuality and the suppression of other sensitive topics, such as abortion and sexual abuse. Consequently, two factors converged: an extended period of societal silence on the matter and a creative imperative to address it (Roldugina and Suverina 2024).
Literary engagement with HIV/AIDS: a new cultural vocabulary
Books, films, and other creative projects have explored themes related to the epidemic, raising awareness in subtle but meaningful ways. One significant approach to raising awareness of HIV/AIDS in contemporary discourse is through Russophone literature. Recent works in this tradition have provided profound insights into the lived experience of HIV/AIDS, delving into themes of illness, stigma, and resilience. These literary explorations not only reflect the personal and social challenges faced by individuals living with HIV/AIDS but also engage with broader cultural and political implications, offering a nuanced portrayal of the disease and its impact on identity and society. Kristina Gepting’s fictional novel Plus zhizn’ (Plus Life, 2019) and Oksana Vasyakina’s autofictional work Step’ (Steppe, 2022) will serve as key examples in the following analysis, each offering distinct perspectives on the lived experience of HIV/AIDS.
In her book, Gepting portrays the life of Lev, a young man born with HIV, who aspires to become a doctor and lead a meaningful, fulfilling life. Despite his ambition and resilience, Lev faces systemic barriers that make his goals unattainable—Russian legislation prohibits people living with HIV from entering certain professions, including medicine. This legal restriction underscores the institutionalized discrimination that continues to shape the lives of HIV-positive individuals in Russia. Gepting uses Lev’s story to explore broader themes of agency, survival, and hope in the face of chronic illness. Lev actively manages his condition and refuses to define himself by his diagnosis, embodying a proactive approach to living with HIV.
His story challenges persistent misconceptions about the virus, offering a humanizing and nuanced perspective on what it means to live with a chronic, but manageable, condition in today’s world. For a general reader, the narrative serves as both an educational intervention and a call for empathy. Gepting’s central message is clear: in contemporary Russia, the true danger of HIV lies not in its medical implications—which, thanks to modern antiretroviral therapy, can be effectively controlled—but in the cruelty, ignorance, and stigma that still surround the diagnosis. Gepting’s work thus invites readers to reconsider outdated assumptions and to recognize the social and legal structures that continue to marginalize people living with HIV.
In contrast, Vasyakina presents a deeply personal account of her father’s experience with HIV, which he contracted through needle sharing during a period of drug addiction. Rather than responding to the diagnosis with proactive treatment or self-care, her father met it with psychological denial and resignation. For him, HIV was not a condition to be managed, but an ordinary illness that signaled the closing chapter of his life. He accepted it as an inevitable fate and made no attempt to preserve his health. More troublingly, he continued to engage in unprotected sex, knowingly exposing others to the virus.
Through a nuanced examination of his decline—from diagnosis to the development of AIDS and ultimately to his death—Vasyakina explores the emotional and psychological mechanisms that shaped his choices. Her narrative reveals how denial, internalized stigma, and a sense of hopelessness can undermine both individual well-being and public health. By situating her father’s story within the broader socio-cultural context of HIV in Russia, Vasyakina offers a critical reflection on how stigma, shame, and structural neglect contribute not only to personal tragedy, but also to the ongoing spread of the virus. Her book underscores the complex interplay between personal agency, illness acceptance, and mortality, challenging simplistic narratives of blame and instead calling attention to the conditions that make meaningful engagement with illness so difficult for many.
Conclusion
In summary, the cultural and societal stigmas surrounding HIV/AIDS in Russia remain deeply entrenched, making it exceedingly difficult to challenge the epidemic’s marginalization. While the books addressing HIV/AIDS represent a courageous and necessary intervention, their overall impact remains limited. Despite their limitations, however, these initiatives are not without value; they signal a growing shift in cultural engagement with HIV/AIDS, creating spaces for narratives of vulnerability and offering visibility to marginalized voices. While they may not immediately dismantle the structural silence surrounding HIV/AIDS in Russia, the emergence of these discourses suggests a gradual, though significant, transformation in public awareness and a challenge to longstanding taboos.
About the author
Alexander Meienberger is a postdoctoral researcher at the University of St. Gallen, Switzerland, specializing in Eastern European literature from the nineteenth century to the present, with a focus on contemporary Russophone literature. His research examines cultural identity, historical and social influences on literary expression, and the intersection of literature, medicine, and the humanities. He explores contemporary narratives of illness, health, and the body, analyzing how modern authors engage with trauma, care, and medical discourse within broader socio-political contexts.
References
Criminal Code of the Russian Federation. 2018. Article 122, “Infection with Human Immunodeficiency Virus.” World Intellectual Property Organization. https://wipolex-res.wipo.int/edocs/lexdocs/laws/en/ru/ru080en.html.
Code of Administrative Offences of the Russian Federation. 2001. Article 6.21, “Advocating Non-Traditional Sexual Relationships among Minors.” Garant. https://base.garant.ru/512125267/1da89c63f6dc9c97c8b9f2240da2118c.
Bobkov, Aleksei, Rachanee Cheingsong-Popov, Ludmila Selimova, et al. 1997. “An HIV Type 1 Epidemic among Injecting Drug Users in the Former Soviet Union Caused by a Homogeneous Subtype A Strain.” AIDS Research and Human Retroviruses 13 (14): 1195–1201. https://doi.org/10.1089/aid.1997.13.1195.
Boghardt, Thomas. 2009. “Operation INFEKTION. Soviet Bloc Intelligence and Its AIDS Disinformation Campaign.” Studies in Intelligence 53 (4): 1–24.
Godlevskaya, Maria, and Anastasia Meylakhs. 2022. The People Living with HIV: Stigma Index 2.0. Russian Federation. https://www.stigmaindex.org/wp-content/uploads/2022/04/Russia-SI-2.0-Report-2022_English-1.pdf
Gepting, Kristina. 2019. Plus zhizn’. Like Book.
Kelly, Catriona. 2016. “The New Soviet Man and Woman.” In The Oxford Handbook of Modern Russian History, edited by in Simon Dixon, pre-print. May 2, 2016. https://doi.org/10.1093/oxfordhb/9780199236701.013.024.
Pape, Ulla. 2022. “The Silenced Epidemic: Why Does Russia Fail to Address HIV?” Georgetown Journal of International Affairs, January 31, 2025. https://gjia.georgetown.edu/2022/01/31/the-silenced-epidemic-why-does-russia-fail-to-address-hiv.
Roldugina, Irina, and Katerina Suverina. 2024. “The USSR recorded its first HIV infections three years earlier than most people think. Why didn’t it help stop the spread?” Meduza, December 13, 2024. https://meduza.io/en/feature/2024/12/13/the-ussr-recorded-its-first-hiv-infections-three-years-earlier-than-most-people-think-why-didn-t-it-help-stop-the-spread.
Selvage, Douglas. 2019. “Operation ‘Denver’: The East German Ministry of State Security and the KGB’s AIDS Disinformation Campaign, 1985–1986 (Part 1).” Journal of Cold War Studies 21 (4): 71–123. https://doi.org/10.1162/jcws_a_00907.
Vasyakina, Oksana. 2021. Step’. Novoe literaturnoe obozrenie.
