Improving policy and practice: HIV/AIDS NGOs in
On 28 October 2010 a group of about 20 HIV/AIDS activists gathered in front of the building of St. Petersburg’s Health Committee. Their objective was to protest against disruptions in the supply of antiretroviral drugs which are vital for the treatment of PLWH. Throughout Russia, ARV drug shortages occurred in many cities in 2010. The reasons were believed to lie in the inefficiency of the central procurement system resulting in frequent delays in the deliveries of ARV drugs to Russia’s regions. These disruptions in supply do not only endanger the life of HIV-positive patients who are dependent on daily treatment, but also carry the risk of causing HIV drug resistance and fuelling a further spread of Russia’s HIV/AIDS epidemic. The activists in St. Petersburg – disguised symbolically as Russian bears and as nurses – carried banners criticising the policies of the regional health authorities: “Broken promises kill!”, “No therapy – we die!”, “No treatment – growing epidemic!” and “Our deaths are your shame!” (interview 33). According to one of the participants of the protest, PLWH in St. Petersburg had no other choice than to go out on the streets: “The Ministry of Health denies that drugs are out of stock. And that’s why we ask for help from people, as we ourselves cannot cope with what is happening, and without pills we die!” (interview 33). The HIV/AIDS activists’ demonstration in St. Petersburg did not have much effect. Contrary to the hopes of the protesters, the city’s Health Committee did not react in any form, and a couple of days later, Russia’s Ministry of Health and Social Development even declared that “in the vast majority of the regions, there are no problems with ARVs provision for patients” (European AIDS Treatment Group, 2010). All in all, the protest leaves us with many open questions: How can it be that in a relatively wealthy city like St. Petersburg many patients are apparently left without life-saving treatment? How is it possible that Russian health care institutions can uphold their version of “no problem with antiretroviral treatment” against the evidence from many regions in Russia? And why do PLWH and their advocates – despite rising infection rates in St. Petersburg and many other cities of Russia – still find it so difficult to raise public support for their concern about access to antiretroviral treatment? In this chapter we continue our investigation of HIV/AIDS NGOs in the city of St. Petersburg. In contrast to the region of Tomsk, where HIV infection
rates are about average, St. Petersburg is one of the hotspots of Russia’s HIV/ AIDS epidemic. In 1987, the country’s first case of HIV infection was diagnosed there. Just over 20 years later, in 2010, St. Petersburg had already registered more than 46,000 HIV-positive people (within an overall population of 4.6 million), being one of the worst affected regions in Russia (Federal’nyi Tsentr SPID 2011). The development of HIV/AIDS in St. Petersburg has serious implications for the economic and social development of the city. However, the epidemic also gave rise to many social initiatives, self-help groups and NGOs which are dealing with the impact of HIV/AIDS. The Data base of Organisations Working in the Field of HIV/AIDS in the Russian Fed eration lists 15 HIV/AIDS NGOs in St. Petersburg (Baza dannykh organizatsii . . .). Furthermore, the city accommodates a number of health care institutions and research institutes in the field of HIV/AIDS. Getting an overview of the organisational landscape in St. Petersburg was thus much more complex than in the case of Tomsk, where the HIV/AIDS sector consisted of the Regional AIDS Centre, plus two local HIV/AIDS NGOs and a project group at the Information Centre for PLWH. In order to deal with the organisational diversity in St. Petersburg, first, an overview of all HIV/AIDS NGOs in the city was made, and all organisations – insofar as establishing contacts was possible – were visited and interviewed. For the case study, however, only six organisations were chosen for detailed discussion, as they seemed to be best placed to provide insights into the work of local HIV/AIDS NGOs in St. Petersburg. These organisations include the grassroots NGO Humanitarian Action, the policy/advocacy NGO Stellit, the drug-rehabilitation centre Return, as well as three initiatives that represent the rights of PLWH: Positive Dia logue, Positive Wave and Balance. The structure of the chapter follows that of the previous chapter. First, the HIV/AIDS situation in St. Petersburg and the specific risk environment in the city are characterised. Then, the work of the organisations is described and discussed by using the general framework of analysis. The focus here is on the ways the NGOs have framed the epidemic and positioned themselves in the fight against HIV/AIDS. Moreover, the chapter investigates how the organisations have mobilised resources, cooperated with state institutions and generated societal support for their work. Finally, the chapter discusses the organisations’ influence strategies with regard to HIV/AIDS policy-making in St. Petersburg, which makes it possible to assess their contribution to the fight against Russia’s HIV/AIDS epidemic. Field work in St. Petersburg was conducted in May, September and October 2008. The case study draws on interviews with representatives of HIV/AIDS NGOs, as well as staff members at governmental health care institutions and other health experts in St. Petersburg. Additionally, statistical material from the Regional AIDS Centre, project documentations from the NGOs, information material, research reports and newspaper articles were analysed. Project visits, e.g. to a harm reduction project and a local self-help group for PLWH, completed the picture.