ICRW and Partners Expand Landscape for Monitoring HIV-related Stigma and Discrimination

In recent years, a number of biomedical technologies have emerged that could lead to large reductions in new HIV infections.Governments around the world have been working to make sure these new technologies, like pre-exposure prophylaxis (PreP), anti-retroviral therapy (ART) as prevention, and voluntary medical male circumcision (VMMC), are widely available to their citizens. However, evidence is emerging globally that social harms, such as the stigma and discrimination associated with HIV, pose a major challenge to uptake of and adherence to these life-saving technologies.

As a result of stigma, people refrain from getting tested, often out of fear that if they are HIV positive, they’ll be ostracized from their families, discriminated against by members of the community, or will be subject to judgement or persecution. Additionally, stigma can also lead those living with HIV to discontinue taking their medication, or interrupt their treatment, for many of the same reasons stated above.

Because stigma is such an important factor in people’s decision to test for HIV and seek care and treatment services, it is imperative that we have valid and reliable measures of the key aspects of the stigmatization process that can be mitigated through intervention. This data can be used to: (1) help national governments make evidence-based choices about how to target government health spending so that it most efficiently and effectively addresses the HIV epidemic; (2) assist researchers to better understand whether stigma-reduction interventions are working so effective interventions can be taken to scale; and (3) indicate how well a state is fairing in terms of respecting, protecting and promoting human rights and achieving the immediate obligation of non-discrimination, as provided for in all the key international and regional human rights instruments.

To this end, ICRW, together with partners from the Global Network of People Living with HIV, International Planned Parenthood Federation, John Hopkins Bloomberg School of Public Health, Futures Group and the Joint United Nations Programme on HIV/AIDS (UNAIDS), has been working to develop new measures of stigma and discriminatory attitudes for inclusion in the Demographic and Health Survey (DHS), a USAID-supported survey conducted every three to five years in more than 90 countries around the world.

The DHS contains hundreds of questions about people’s lives and serves as a standard measurement tool that provides a snapshot into a country’s demographic and health trends. The survey allows governments the opportunity to understand challenges facing the population and how a country is progressing – or regressing – in a number of areas.

Previously, questions around discriminatory attitudes, which is just one of the ways stigma manifests, have helped shed light on the challenges faced by people living with HIV and AIDS. But other aspects of the stigmatization process were entirely missing from the questionnaire. Now, this new series of questions and the indicators that go alongside of them will shed light on the drivers of stigma in society, such as the fear of becoming infected with HIV from casual contact with people living with HIV, or other important manifestations of stigma, like perceptions about the ways in which people living with HIV are treated by others in the community, and shame of having a family member infected with HIV. We also worked to improve the questions assessing discriminatory attitudes to better reflect the changing epidemic. For example, a new question about discriminatory attitudes towards children living with HIV is now included.

The data that will be emerging soon from the updated survey will help researchers develop and evaluate interventions that target key drivers and manifestations of stigma, including stigma in the education sector, and will allow governments to strategically target the combination of interventions needed to get to zero new HIV infections, zero AIDS deaths, and zero discrimination in their country.

Alongside of this important development, ICRW, UNAIDS and other partners also ensured that the same indicators were endorsed by the Indicator Working Group of the UNAIDS Monitoring and Evaluation Reference Group and included in the UNAIDS indicator registry, which houses validated measures that countries can use to understand their HIV epidemic. Additionally, the indicator on ‘discriminatory attitudes’, constructed from two of the new DHS measures, is now included in Global AIDS Response Progress Reporting (GARPR) and the World Health Organization’s 2015 strategic information guidelines for HIV in the health sector. As a result, every single UN member country has to collect and report on HIV stigma and discrimination on a routine basis.

This crucial information gleaned from the DHS survey, and reported widely through GARPR, is yet another tool in public health workers’ arsenal to combat the spread of HIV.

When we better understand what types of stigmatizing beliefs and behavior are preventing people from getting tested or properly taking life-saving medication, we’ll be able to help those living with HIV lead better, healthier lives and ensure we stem the further spread of HIV.