chapter  1
19 Pages


AIDS out of control – this description of a rampant HIV/AIDS epidemic in Russia 2010 was not written today, but nearly 20 years ago. It is part of a scenario, prepared by economist Daniel Yergin and political scientist Thane Gustafson. In their book Russia 2010: And What it Means for the World (1993), the two experts on Russian affairs use the method of scenario planning in order to investigate the country’s struggle to make the transition from a Communist past to a new future: Will Russia manage to develop into a functioning democracy? Will it succeed in reforming its economy and overcome the perils of transition? Will it slide into chaos and conflict or regain strength on the basis of a new state identity? And what role, ultimately, can Russia be expected to play in future world politics? All these questions remain as relevant today as they had been in 1993 when the book was published. In the context of post-Soviet transition – discussed by Yergin and Gustafson – the issue of HIV/AIDS is just one challenge among many. Viewed separately, the authors argue, an infectious disease like HIV/AIDS is unlikely to determine Russia’s path into the future. However, in combination with other factors, the epidemic has the potential to be a catalyst: It might affect the course of Russia’s socio-economic development by placing an enormous strain on health care services and by aggravating divisions in society. Given the vulnerability of the country to health problems in general, an emerging

HIV/AIDS epidemic could thus have huge political consequences (Yergin and Gustafson 1993: 200). Indeed, when reading Yergin and Gustafson’s scenario in retrospect, it is striking how much it resembles today’s reality. Many aspects of Russia’s current HIV/AIDS epidemic are already mentioned in their prediction: a risk environment facilitating the spread of HIV/AIDS in Russia, including population mobility, commercial sex and the frequent re-use of hypodermic needles, low public awareness concerning the transmission of HIV, overstrained public health services, as well as the incompetence or unwillingness of the Russian government to adequately respond to the growing epidemic. Many of the barriers that hamper the implementation of effective HIV/AIDS policies in today’s Russia are already described in Yergin and Gustafson’s scenario. Even the authors’ prediction about the number of Russians living with HIV by 2010 (“over a million”) comes close to what is given today as the official estimate (980,000 according to the Joint United Nations Programme on HIV and AIDS (UNAIDS) in 2009).1 This accordance between scenario and reality, however, is less the result of the authors’ ability to look into the future, but rather the fact that the spread of HIV/ AIDS in Russia was already predictable at the beginning of the 1990s. The real concern therefore is that for so many years so little had been done to effectively prevent Russia’s HIV/AIDS epidemic from reaching crisis proportions. The story of HIV/AIDS in Russia is thus largely a story of policy failure. According to UNAIDS, the country is currently facing the biggest epidemic in all of Europe.2 Responsible for this development is a lack of effective prevention programmes, particularly with regard to vulnerable population groups such as drug users and sex workers who carry the main burden of Russia’s HIV/AIDS epidemic. Although many health experts emphasise the need to introduce targeted programmes to reach these groups, their implementation often fails due to political and institutional opposition related to the stigmatisation of marginalised groups of society. Overall, there is no consensus in Russia as to how the epidemic should best be addressed. Despite the fact that socio-political issues – whether Russia’s alarming demographic decline, the situation of children and adolescents, or health problems such as HIV/AIDS, as well as hepatitis and tuberculosis – have become part of the political vocabulary of Russian decisionmakers, the country still lacks a comprehensive approach to the alarming social problems it is confronted with. In the case of HIV/AIDS, this means that the epidemic will likely continue to grow in the future. However, despite these grim prospects, there is also another side of the story: In many cities and regions of Russia, citizens have organised themselves in order to deal with the problem of HIV/AIDS. In the context of a collapsing social system, they have taken matters into their own hands by creating civil society organisations that respond to the unfolding epidemic. By setting up social services and drawing public attention to the issue, these organisations – mostly emerging at the grassroots level – have played a pioneering role in the response to HIV/AIDS in Russia. Today, throughout the country, non-governmental organisations (NGOs), social movements, civic associations as well as initiative

groups are active in the field of HIV/AIDS prevention, treatment, care and support. Some of these organisations conduct HIV/AIDS prevention campaigns for young people, others offer social and medical services to vulnerable groups or represent the rights of those directly affected by the epidemic. Notwithstanding the difficulties of civil society development in post-Soviet Russia, HIV/AIDS NGOs over the past two decades have made remarkable progress in addressing the epidemic. Most prevention programmes in Russia have been developed by civil society organisations which therefore can be considered as key actors in the response to the epidemic. The organisations are more and more accepted as partners of the state. This allows them to play an active role in HIV/AIDS policymaking. The story of HIV/AIDS in Russia is thus also a story of civic action. It shows that Russian citizens have joined together in bottom-up initiatives in order to respond to a common problem. Understanding how this remarkable development has come to pass, and what it means in the context of Russian politics and society, is the motivation for this study.