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Communicating Disease: The Silenced Epidemic in Russia

Photo by Klaus Nielsen from Pexels

By Ksenia Kogler, BA

HIV/AIDS represents a major global health issue. According to the World Health Organization (WHO) about 38 million people in the world were diagnosed with HIV at the end of 2019. By June 2020, already 26 million of them had access to the antiretroviral therapy (ART), but unfortunately due to the COVID-19 pandemic there is a decrease in the progress of providing the therapy to people.[1]

In the Russian Federation, the number of infections is increasing since the beginning of the epidemic. By the end of 2019, the total number of Russians living with HIV reached 1.1 million according to the statistical data provided by the Federal Research and Methodological Centre for AIDS Prevention and Control. The HIV prevalence in the population increased accordingly, approaching 0.75% of the general population and 1.42% of the population aged 15-49 years[2], the highest number in Eurasia.

Mass media often uses the term “silenced epidemic.” The problem of communicating the disease lies also in the statistics. Officially, the term epidemic is used only when the amount of infected people is over 1% of the population, but in Russia, only in 13 regions more than 1% of residents are infected and in general in 35 regions HIV prevalence is above 0.5%, which makes it more difficult to use this term. However, in official documents the term epidemic has been used more often over the past years.

There is no doubt that one of the main steps for defeating the disease is to inform the population. In Russia, not only public awareness is insufficient, but also the state is reluctant to include the issue on the national agenda. Mass media, on the other hand, frequently uses misleading clichés, such as “plague of the 20th (21st) century” and “at-risk groups,” as well as discriminatory labels such as “homosexuals,” “drug addicts,” etc.

This negative framing has a history. In the second half of the 1980s and early 1990s, the common stereotype was that AIDS was a threat coming from the United States and Western countries as “a focus of the evils of the capitalist system.” In the headlines of articles from 1986 to 1994, the expressions “American syndrome,” “AIDS truck” and “plague from the West” were used. This representation of the disease has formed the opinion in the society that people with HIV/AIDS are very contagious, dangerous and dirty, which has entailed a certain “AIDSophobia,” as well as discrimination against people at risk and people living with HIV as well as their isolation. There is still a lack of awareness in the population about what HIV is, how the latter is different from AIDS and how the HIV virus can be transmitted. Furthermore, it is still little known that it is not a problem limited to homosexuals, drug users or sex workers.

In 2016 the Government of the Russian Federation approved the “State Strategy 2016: Countering the spread of HIV in the Russian Federation for the period until 2020 and beyond”[3], which declared HIV outreach a priority for primary HIV prevention. This strategy contained a specialized federal information resource to counteract the spread of HIV, which included large-scale communication campaigns, comprehensive communication projects, nationwide events, annual specialist forums, and the operation of a specialized information online portal on HIV and AIDS. Unfortunately, there is still no official data available about the results.

Vadim Pokrovsky, head of the Federal Research and Methodological Centre for AIDS Prevention and Control, commented in an interview in 2019 on another important problem that makes government officials reluctant to conduct extensive information campaigns. He explained: “The bet is on the religiosity of the population. The rules of behaviour should be in line with Christian traditions, which in itself, as some believe, should reduce the spread of HIV infection. But, as we can see, the epidemic does not depend on the fact that the so-called spirituality and ideology are promoted in Russia. Not a single official in our country has yet uttered the word “condom” in public. And condoms, by the way, are unaffordable for many in Russia. If it costs the same as a bottle of beer, then there is no telling what people will be more willing to buy with that money. It is necessary to lower the price and increase their availability to low-income people.”[4] The lack of sex education in Russia is one of the reasons why it is difficult to discuss the issue. Even within families, parents often avoid talking to their children about sex, hoping that the child will somehow find out on his or her own.

An excellent example to see the strong difference in discourse across different media platforms were two films on HIV released in 2020. The first film was released on 11 February on the YouTube channel of the well-known Russian journalist Yury Dud, who has become popular with his interviews with celebrities from various fields. The film features the stories of real people, explores the problem of stigmatization, and discusses not only preventive measures, but also testing and treatment methods. In addition, the contact details of the responsible centres and a strategy for dealing with a positive test result are given. In the documentary, accessible, simple, precise, and open vocabulary is used. The film went viral and has been watched by almost 20 million people. What is more, the film inspired a panel discussion on HIV prevention and treatment in Russia that was held in the State Duma on 21 February.

The second example is the HIV/AIDS prevention film, “AGAINST AIDS: The View of Two Generations. A value-based navigation” produced by the Moscow City Health Department on 1 December 2020. This film is aimed more at parents as it calls on them to talk more to their children about the issue in question. However, although the usual stereotypes are explained in the film, they still remain a focus. It also remains unclear, which role the state structures will play in providing this information to more parents, as this film was shown for discussion within universities.

Overall, a positive development can be seen in the provision of reliable information about HIV in Russia. Unfortunately, so far only outbreaks of public outcry have forced representatives of the authorities to pay more attention to the problem. In the meantime, much of the outreach work is done by NGOs in the Russian Federation, which actively use Instagram accounts as well as other social media to educate young people about the disease and its prevention, and to inform them about news and upcoming events related to the topic.

Bibliography:

AGAINST AIDS: The View of Two Generations. A value-based navigation. 2020 URL: https://youtu.be/_vcXKC0KJvA [Accessed: 07.02.2021]

Barysheva. E., Deutsche Welle. Why HIV-related deaths are on the rise in Russia. 2019. URL: https://p.dw.com/p/3NG65 [Accessed: 29.01.2021]

Federal Scientific and Methodological Centre for AIDS Prevention and Control., (2020) “HIV-INFECTION.” Information bulletin No 45. Moscow.

Government of the Russian Federation (2016). No 2203-r, Moscow. “State Strategy 2016: Countering the spread of HIV in the Russian Federation for the period until 2020 and beyond”

HIV in Russia (Eng & Rus subtitles). 2020. URL: https://youtu.be/GTRAEpllGZo [Accessed: 07.02.2021]

World Health Organization. HIV/AIDS. 2020. URL: https://www.who.int/news-room/fact-sheets/detail/hiv-aids [Accessed: 28.01.2021]

Yasaveev I.G., (2006) “The media and the HIV/AIDS situation in Russia.” Sociological Studies no. 12, pp. 89-94


[1] World Health Organization. HIV/AIDS. 2020. URL: https://www.who.int/news-room/factsheets/detail/hiv-aids [Accessed: 28.01.2021]

[2] Federal Scientific and Methodological Centre for AIDS Prevention and Control., (2020) “HIV-INFECTION.” Information bulletin No 45. Moscow.

[3] Government of the Russian Federation (2016). No 2203-r, Moscow. “State Strategy 2016: Countering the spread of HIV in the Russian Federation for the period until 2020 and beyond”

[4] Barysheva. E., Deutsche Welle. Why HIV-related deaths are on the rise in Russia. 2019. URL: https://p.dw.com/p/3NG65 [Accessed: 29.01.2021]