Russia’s denial syndrome

Photo (CC) en.kremlin.ru

Natalya Ladnaya, a senior researcher at the Federal AIDS Centre with Rospotrebnadzor (a federal agency responsible for consumer protection and welfare) has repeatedly stated that in 20 regions of the Russian state the epidemic has reached a generalised level according to the World Health Organisation and the Joint United Nations Programme on HIV/AIDS (UNAIDS) criteria. More than one per cent of pregnant women were infected in these regions, which means the epidemic has moved beyond traditional risk groups and is now rapidly spreading among the heterosexual, sexually active population.

Against this backdrop, government officials have declared their intentions to devote more attention to the problem. Yet in reality no effective changes have been implemented. As a result, the problem is ignored and stigmatised, despite its increasing societal pertinence.

Growing problem

According to official statistics, the number of people carrying HIV in Russia has already exceeded 1.2 million and, according to the United Nations, Russia is now the third largest country in the world in terms of the number of new HIV infections (after South Africa and Nigeria). In 2017 a number of Russian regions saw more new cases of HIV infections than in 2016. According to the Russian ministry of health, the number of new HIV diagnoses increased in Moscow alone by 20.4 per cent (2,900 new diagnoses in 2017 versus 2,400 in 2016). In the Chukotka Autonomous District, the rise was as sharp as 151.7 per cent, while in the Republic of Tyva it reached 133.3 per cent. The number of new HIV carriers in Tambov oblast, Ivanovo oblast, the Republic of Mari El and Karelia rose from 50 per cent to 66 per cent.

In recent decades the social picture of a Russian HIV carrier has changed dramatically.  During the 1990s, HIV mainly spread within at-risk groups, such as drug abusers. Today heterosexual contact is the primary mode of spreading the virus. According to Vadim Pokrovsky, head of the federal research and methodological centre for prevention and control of AIDS, 1.2 per cent of people ages 15 to 49 are HIV carriers in Russia. The most affected group are men aged 35 to 39 (3.3 per cent). At the same time, more than half of the cases are associated with heterosexual transmission – 54.4 per cent of all new diagnoses registered during the first half of 2018. By contrast, 42.8 per cent were infected through the use of needles and only 2.1 per cent of new cases were the result of homosexual intercourse.

The rise in HIV-related mortality has also reached new levels. In just ten years it has increased more than tenfold, and continues to grow. The average age of death for someone infected is just 35, which means that the country with an aging population is losing even more of its workforce. This dynamic is unlikely to change in the foreseeable future because of an unwillingness of the Russian leadership to adopt methods proven to be effective in other countries, such as the introduction of substitution therapy for drug addicts and the inclusion of sex education classes into the school curriculum. Only about a third of HIV carriers in Russia are receiving antiretroviral therapy, and amid the current economic crisis there is a growing problem with access to medicine. According to the social movement Patient Control, many regions in Russia have already faced serious interruptions in the supply of essential drugs.

The number of HIV carriers might be much higher than the official 1.22 million since statistics only take into account officially registered cases. At the same time, the authorities often point out that around 20 per cent of Russians are tested for HIV each year. However, this figure is largely made up of the same people who are obliged to undergo annual medical checks such as law enforcement officers, blood donors, medical personnel and prison inmates. Therefore we can speculate that the true scale of the epidemic remains unknown. The results of rapid HIV tests in Novosibirsk, for example, revealed that the virus was present in 40 out of 888 tested individuals. Among those who tested positive, five out of six did not know they were infected.

Political activity

The current round of confrontation between the Kremlin and the western world has also affected HIV-positive Russians. With a shrinking state budget, defence spending became an instant priority while non-governmental organisations involved in HIV prevention and care have seen cuts in funding. What is worse, any NGO looking for support from international donors has to register as a “foreign agent” under Russian law. In fact, in 2016 the ministry of justice added eight non-profit organisations that deal with HIV prevention to the list of foreign agents. The reasons for including these organisations in the register are quite symptomatic. According to Russian law, in order to be labelled a foreign agent, the organisation should be engaged in political activities. Yet due to uncertainties in the law, almost any type of activity can be interpreted as political.

Take the example of Sotsium, an NGO based in the Saratov region. The district court has decided that conducting surveys among HIV-infected persons and distributing 100,000 syringes and 10,000 condoms (allegedly bought with funds obtained from abroad) is considered political activity. The prosecutor’s office referred to the expert opinion submitted by Ivan Konovalov, a professor of history at the local law academy, who concluded that Sotsium “can be regarded as a participant of the hybrid war against Russia aimed at changing the political regime in our country”. According to the same expert, the distribution of free condoms and syringes “destroys both our traditions and our national values”.

The current policy affects not only organisations directly involved in working with HIV-carriers but also NGOs that focus on education. The Russian Orthodox Church and a number of high-ranking conservative politicians are some of the strongest voices against removing sex education in schools. In May 2017 Roskomnadzor experts concluded that a training programme for 10th and 11th graders in Chelyabinsk schools, conducted by an NGO called Compass, violates federal law. “Experts” especially stressed the link between the programme and western structures that allegedly develop such programmes in order to “destroy chastity in children” and reduce the birth rate.

The language used in both cases is unfortunately not that rare. In 2016 a state think-tank called the Russian Institute for Strategic Studies (RISS) presented a report to the Moscow City Council on HIV in Russia. Its main topic was not the growing epidemic, but an illusory intervention of the West. The report stated that western countries “are using the HIV/AIDS problem as a weapon in the information war against Russia” while the contraceptive industry is “interested in engaging the maximum number of minors in early sexual relations”. According to the same report, sex education for schoolchildren is imposed by the West as a means of “demographically deterring countries seen as geopolitical competitors”. What is their recipe against AIDS then? “Abstinence and the monogamous, heterosexual family”.

It is quite likely that the few remaining independent NGOs dealing with HIV in Russia will see further complications. In September this year, the ministry of justice drafted a bill on a new procedure for conducting foreign-funded programmes aimed at stopping the spread of HIV. The ministry proposes that all NGOs that conduct HIV prevention programmes in Russia and receive money from abroad notify the state of its activities. The state will have a month to consider whether to issue consent (or refusal) for the work. If the NGO continues to work on HIV prevention after receiving a refusal, it will be closed down. Should this bill be adopted, it may lead to the closure of the majority of NGOs working on HIV in Russia.

Conspiracy theories

The use of conspiracy theories by authorities and the state-owned media has become commonplace in Russia, especially when concerning the image of the West as an enemy. According to recent polls conducted by VCIOM – a Russian public opinion research agency – the number of Russians who believe in the existence of a secret world government has increased over the past four years from 45 to 67 per cent. Another survey conducted by the Levada Centre in March 2017 showed that the share of Russians who believe the 1917 Bolshevik Revolution was a plot against the Russian people has risen by 20 per cent. Another conspiracy that the collapse of the Soviet Union was the result of a “plot of foreign forces hostile to Russia” is also gaining popularity. In December 2006, around 18 per cent of those surveyed by the Levada Centre thought so; after the annexation of Crimea, that number grew to 28 per cent (decreasing again to 23 per cent in 2016).

Therefore it is no surprise that a similar trend can be seen in the debate around the HIV epidemic. In fact, one recent study carried out by Medialogy – a media research group – together with the newspaper Vedomosti highlights this trend. The study, which analysed the use of conspiracy theories in the Russian media between January 2011 and December 2017, found a total of 36 different conspiracies. Two of the most widespread conspiracies, according to the study, include a plot of historians against Russia and that a world government order exists. The third most popular conspiracy theory is that HIV/AIDS are not real. This conspiracy has grown 36 times over the past seven years within the Russian media.

Therefore, HIV deniers (or dissidents) – those who do not believe in the existence of the virus and consider it to be a part of a pharmaceutical plot (or an American one – it depends on who you are talking to) – has become a very visible force in Russia. The Svecha Foundation – a charity that works to prevent HIV infection – conducted a study that claims there are more than 15,000 HIV deniers in Russia who actively spread their views online. They sometimes succeed in reassuring newly-diagnosed people that the virus is not real and there is no need for treatment. Many of the HIV deniers are active on social media, and considering that some people who have just discovered they are HIV positive are likely to go through a stage of denial, they are offered a convenient answer: “There is no virus, what kills is the treatment itself.”

This problem was widely publicised in 2017 when it was reported that several resonant cases of death in HIV-positive children whose parents were HIV deniers and refused antiretroviral treatment. One of the most high-profile instances was a criminal case against the foster parents of a ten-year-old girl who died of AIDS. The foster father of the girl and his wife did not treat her since they believed HIV was something that was made up by the pharmaceutical industry. What makes the story even more remarkable is that the father was not only an HIV denier but also an Orthodox priest. Officially, the church does not deny the existence of HIV. But according to Archpriest Georgy Pimenov, there is still “a semi-underground movement of HIV deniers” within the Church.

Easier to deny

On Russia’s most popular social networking website, Vkontakte, there are a number of popular communities where HIV deniers openly propagate their ideas and discuss the need to refuse any treatment. Pavel Chikov, the head of Agora, an international human rights organisation, pointed out that one of the groups called “HIV/AIDS – the greatest mystification of the 20th century” (with 16,837 members), had an interesting member. Anna Kuznetsova, the Children’s Rights Commissioner for the President of the Russian Federation and wife of an Orthodox priest, was following the group. The second most popular HIV denial group on Vkontakte, called “A movement against HIV/AIDS fraud”, has over 8,000 followers and over 3,000 followers on their YouTube channel. The motto of another group (with 3,794 members) is “Do not test for HIV – be safe”.

Many of the members of those communities are HIV-positive themselves and, naturally, the ideas that are being propagated are harmful, especially for those who are HIV positive, but in denial. Some former HIV deniers eventually start treatment – most of the time when their health has already deteriorated – and some are too late. There is a group that tries to work with HIV deniers on social media. The “HIV/AIDS dissidents and their children” social media community has collected open source data on the number of deaths within the HIV-denier community. Since 2015, 93 people within the Russian HIV-denying groups on Vkontakte have died, including children. This is only a fragment of the full picture; the overall numbers are still unknown. Clearly, those who do not believe in the existence of the virus, and those who do not seek medical treatment not only hurt themselves but also their sexual partners by infecting them with something that has no cure.

Current Russian laws do not regulate the propaganda of HIV/AIDS denial. Those who actually contributed to the death of someone by convincing them that HIV does not exist risk very little. The same is true for doctors promoting these ideas via online consultations. The most vivid and deadly example of a conspiracy physician is Olga Kovekh, or, as some in the media call her, Dr Death. It is known that Kovekh consulted at least 50 HIV-positive people, and five of them have died. She was fired from her position in 2017, although she started her “dissident” activity much earlier, presenting her ideas on Russian television. Her medical degree has not been revoked.

Medical professionals like Kovekh also believe in other conspiracy theories, such as that a one-world government order exists or that there is an international plot against Russia, an idea often perpetuated in Russian media. The difference is that Russian media does not deny the existence of HIV. In the spring of this year the government proposed to ban public information that denies HIV and AIDS. The bill proposes to block HIV-denying websites. However, the initiative (if approved) could still be useless. As long as the media continue to propagate other political conspiracy theories, the Russian consciousness will continue to be framed by conspiratorial thinking. In that case this law will not be of much help. 

Olga Irisova is a political analyst and editor-in-chief of Riddle (ridl.io), an online journal of Russian affairs.

HIV/AIDS, Russia