The importance of assessing self-reported HIV status in bio-behavioural surveys

In bio-behavioural surveys measuring prevalence of infection with human immunodeficiency virus (HIV), respondents should be asked the results of their last HIV test. However, many government authorities, nongovernmental organizations, researchers and other civil society stakeholders have stated that respondents involved in such surveys should not be asked to self-report their HIV status. The reasons offered for not asking respondents to report their status are that responses may be inaccurate and that asking about HIV status may violate the respondents’ human rights and exacerbate stigma and discrimination. Nevertheless, we contend that, in the antiretroviral therapy era, asking respondents in bio-behavioural surveys to self-report their HIV status is essential for measuring and improving access to – and coverage of – services for the care, treatment and prevention of HIV infection. It is also important for estimating the true size of the unmet needs in addressing the HIV epidemic and for interpreting the behaviours associated with the acquisition and transmission of HIV infection correctly. The data available indicate that most participants in health-related surveys are willing to respond to a question about HIV status – as one of possibly several sensitive questions about sexual and drug use behaviours. Ultimately, normalizing the self-reporting of HIV status could help the global community move from an era of so-called exceptionalism to one of destigmatization – and so improve the epidemic response worldwide.