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Discrimination and the social exclusion of people living with HIV are undermining efforts to respond to AIDS, according to a new report “Living with HIV in Eastern Europe and CIS: The human cost of social exclusion”, which is being released today by the UN Development Programme (UNDP) in conjunction with both World AIDS Day and the 60th Anniversary of the signing of the Universal Declaration of Human Rights.

“The region is now ‘living with HIV’ in ways similar to individual people who live with HIV”, said Kori Udovicki, UNDP Regional Director for Europe and the CIS, during the launch. “Just as HIV transforms the lives of people living with HIV – who must come to terms with their HIV-status, identify coping and health promotion strategies, and follow life-saving treatment regimes for the rest of their lives – so too must states and societies in the region undergo transformations in the way they care for their populations and relate to each other for generations to come”.

The region of Eastern Europe and the CIS remains one of the few areas in the world where HIV prevalence continues to rise: from an estimated 630,000 people living with the virus in 2001 to 1.5 million as of 2007 – a 140 percent increase. Nearly 90 percent of newly reported HIV cases in the region are from the Russian Federation and Ukraine. In Central Asia and the Caucuses, the number of newly reported HIV diagnoses is also rising rapidly, with the highest incidence rate found in Uzbekistan.  

According to UNAIDS estimates, about 1.5 million people are living with HIV across Europe & the CIS. Click here to access the report

At the same time, the epidemic is ever-changing. Increasing access to anti-retroviral therapy is allowing more and more people to live with HIV as a chronic, yet manageable disease. And HIV is increasingly associated with women and children as well as men. People living with HIV now represent the full diversity of the region. Some are teachers or students, lawyers or clients, parents or children, patients or health care workers, old, young or newborn, employees, unemployed or employers. This makes policy debates around HIV more complicated, due to the multiple ways in which the epidemic affects society. As the number of people living with HIV grows, the scale of stigma, discrimination and rights violations takes on increasing proportions, serving to undermine hard-won achievements in many countries of the region and jeopardizing prospects for meeting the Millennium Development Goals.

The report draws on data from an innovative six-country research study conducted by UNDP together with Oxford University researchers and local social research institutes and organisations of people living with HIV that looked at exclusion in the health, education and employment sectors from the point of view of people living with HIV.

The report also consults the views of people representing institutions in three key sectors that, where not properly addressed, generate much of the vulnerability that people living with HIV face on a daily basis: health care (doctors, nurses and other staff), education (administrators and teachers) and the workplace (employers and co-workers). Together, these sources provide comprehensive insights into the HIV challenges faced in the region, and the need for state responses to address these issues.

The lack of basic training on HIV epidemiology, transmission and prevention, explicit biases against patients being treated for AIDS and unclear policy guidelines are among the key factors contributing to the unpreparedness of employers, educational institutions and health service providers outside of specialized AIDS centres to accept and serve people living with HIV.

According to a teacher from Ukraine: “When asked, “Would you like your child to be in class with HIV-infected kids?” parents typically answer, “No, it would be better to create a boarding school for them, so that they could be educated separately.” Parents are more frightened than students and children. Like parents, health care workers who have no understanding of this issue say, “Why should the children be together?” Yet as the report highlights, over two and a half decades of international experience has demonstrated that exclusionary approaches in any environment, whether in school, health care settings or the workplace serves no public health benefit and can only weaken the response.

The report highlights one more troubling finding:  many people living with HIV fear social stigma more than the health consequences of the disease. The fear of stigma and discrimination is a major cause of reduced up-take of prevention, care treatment and support services, even when free, by people living with HIV or at risk of infection, which in turn diminishes the effectiveness of national responses.

The report concludes that rights limitations can fuel the spread of the epidemic and exacerbate the impact of HIV. Consequently, respecting people’s individual rights and improving the status of historically marginalized populations can lead to lower rates of HIV transmission, fewer health disparities in society, and improved socio-economic and human development outcomes.

The report calls for concrete efforts focused on adjusting health, social and other services to accommodate the needs of the growing ranks of people living with HIV and of populations at risk, including injecting drug users, sex workers, men who have sex with men, migrants and their spouses and partners.

“Social inclusion for people living with HIV means that we can lead longer, more productive lives as individuals and citizens, that we can better serve our families and better help prevent further HIV transmission. I think, what is good for people living with HIV and populations at risk is good for society as a whole”, said Vladimir Zhovtyak, Head of the Eastern Europe and Central Asia Union of People living with HIV, one of the organizations that contributed to the report.

The analysis was based on research conducted in Estonia, Georgia, Russia, Turkey, Ukraine and Uzbekistan, which represents the range of epidemiological situations in the region: higher-level concentrated, emerging concentrated and low-level epidemics.