Although initially isolated from the global HIV pandemic by draconian Soviet restrictions on contact with foreigners and harsh social control, there has been a growing epidemic in Eastern Europe since the mid-1990s. The first outbreaks were reported in 1995 among injecting drug users in Odessa and Mikolayev in southern Ukraine. They were rapidly followed by other drug-related HIV outbreaks, notably in the Russian territory of Kaliningrad in 1996, and a few months later in other regions of the Russian Federation (Krasnodar, Rostov on Don, Tver) and in neighbouring Belarus and Republic of Moldova.

Since then, the situation has continued to grow rapidly worse, affecting more regions and countries. UNAIDS and WHO stated that, with an estimated 1.2 million HIV-positive individuals at the end of 2002 (compared to only 30,000 at the start of 1995), Eastern Europe and Central Asia are the regions of the world with the fastest growing HIV epidemic. Russia is facing an HIV epidemic of such proportions that the World Bank predicts that, unless the government quickly undertakes pragmatic prevention and treatment interventions, the Russian economy will suffer tremendously.

There are big differences in wealth and poverty, HIV prevalence and access to treatment between the Eastern European countries of the Warsaw Pact (e.g., Romania, Bulgaria) and the Newly Independent States that were once part of the Soviet Union, such as Ukraine, Belarus and Russia. Since a total of 291 million people live in the EE/NIS region, 1.2 million means that 0.6% of the adult population is HIV-positive. The average national spending on health care per capita in these states ranges from US$ 16 to US$ 181 per year. Only a couple of thousand people are using antiretroviral therapy. According to the Central and Eastern European Harm Reduction Network (CEE-HRN, see Box), countries where injecting drug users make up two-thirds or more of the total number of HIV/AIDS cases provide almost no ARV treatment at all, and if treatment is available, injecting drug users are often excluded. Existing barriers to access to care and treatment include inadequate government policies, high costs of drugs, and lack of technical capacity and appropriate infrastructure to manufacture and distribute these drugs.

One step beyond

Scaling up ARV therapy goes beyond the mere availability of antiretroviral medicines: also issues such as infrastructure, skills-building of health-care providers, and treatment education of patients, their families and the larger public is necessary in order to ensure safe and high-quality use of ARVs and increased usage. So far, limited efforts have been undertaken in the EE/NIS region to prepare the community and PLWHA for antiretroviral treatment. Among others, there is a high need for treatment education.

Recent research in the US showed that HIV-infected people with lower health literacy levels had lower CD4 cell counts, higher viral loads, were less likely to be taking antiretroviral medications, reported a greater number of hospitalisations, and reported poorer health than those with higher health literacy levels. Treatment literacy for both health-care providers and PLWHA is essential if we expect treatment to be effective. Treatment literacy for the government and the public is also essential. Knowledge that effective treatment exists will alleviate the fear and stigma associated with AIDS and encourage people to learn about HIV, and utilise counselling, testing, care and support services. Finally, science represents our greatest advocacy tool. Advocates' efforts are supported by scientific evidence that confirms the importance of health literacy in maintaining the well-being of PLWHA. To be effective and develop sound policies, advocates should first learn, understand and disseminate scientific knowledge on HIV/AIDS.

The European AIDS Treatment Group

The European AIDS Treatment Group (EATG) was founded in 1991 as a group of people affected by HIV/ AIDS in Europe and concerned about treatment issues. Over 100 people from 20 different countries are individual members, and the majority work for AIDS Service Organisations in their own countries. The EATG was the first, and is still the only, pan-European organisation advocating for the interests of PLWHA on treatment issues in Europe.

From 3-5 October 2003, the EATG held a regional conference on Access to Treatment and Harm Reduction in Kiev, Ukraine. The seminar was designed and organised in full cooperation with the All-Ukrainian Network of People Living with HIV/AIDS. The meeting provided advocacy and treatment literacy training, and allowed participants to further develop their advocacy agenda and strategise toward the implementation of that agenda. This seminar was part of a broader strategy undertaken by the EATG to give technical assistance and support to the growing PLWHA advocacy movement in Eastern Europe.

The development and dissemination of treatment education materials and training specifically designed and culturally adapted to meet the needs in the region will represent a crucial component of our ambitious programme. The European AIDS Treatment Group does not consider ‘stand-alone' trainings, where a group from a developed nation comes in, provides some brief training and then leaves, useful and cost-effective. The need to provide ongoing support and have training tied to longer-term efforts will be thus essential to meet the above mentioned goals.

The HIV epidemic arrived in Eastern Europe later than in other parts of the world. This gives the region a unique potential and the opportunity to take advantage of lessons (as well as of the many mistakes) already learned by the global community and to prevent the death toll that has been seen in other parts of the world. Although this potential has still to be realised, actions must be promptly undertaken to increase treatment literacy, capacity building and community mobilisation to secure the region free and universal access to treatment and good health for those living with HIV/AIDS.