By Annie Howard

HIV-related stigma and discrimination remain major barriers to accessing HIV services for people living with HIV worldwide. Understanding and addressing stigma is critical to achieving the zero discrimination element of UNAIDS’ vision and successive strategies to end HIV and AIDS by 2030.

To improve understanding of HIV stigma in the community, The European Centre for Disease Control (ECDC) – alongside the European AIDS Treatment Group (EARG) and AIDS Action Europe (AAE) – initiated an exploratory survey in 2021 to measure HIV-related stigma across Europe and Central Asia. As consultants for ECDC, members of National AIDS Trust’s Policy and Research Team were integral to the project management and execution of this survey, as well as analysis and reporting of results. The finished report “Stigma: survey of people living with HIV – Monitoring implementation of the Dublin Declaration on partnership to fight HIV/AIDS in Europe and Central Asia: 2022 progress report” has been published this month after two years of work.

A look at the data shows that stigma and discrimination is far too rife among the HIV community. A total of 3,272 people living with HIV from 54 countries across the region responded to the survey. Nearly one in three respondents had not told a single family member that they were living with HIV, and one in five had not told a single friend or current sexual partner. Nearly one in four respondents reported being rejected by friends because of their HIV status. Within the year prior to completing the survey, one in four respondents were worried about being treated differently by healthcare staff, and one in seven avoided healthcare services altogether for fear of being treated differently. One in five respondents reported having been verbally harassed at some point in their life because of their HIV status.

These figures are unacceptable, and illustrate the crucial need to ensure that education, awareness and other interventions around stigma meet the needs of all people living with HIV. It is important to note that due to the nature of recruitment, the findings in this report are not representative of the mix of all demographics, but show particular need to reach LGBT+ people and key populations such as ethnic minorities, prisoners, people who inject drugs and sex workers. For this reason, we must work to collect more data around stigma and discrimination, including qualitative data, to explore how HIV-related stigma operates in different settings and across population groups, as well as to strengthen education programmes and raise awareness of HIV in different communities.

You can read the report in full here. If you have faced any kind of stigma or discrimination because of your HIV status, we provide advice and support free of charge, with the support of the National Lottery Community Fund. You can contact the service here or by emailing us.