Measuring HIV-related stigma: Why, How and What’s next Susan Timberlake Senior Human Rights and Law Adviser, UNAIDS

Stigma Negative beliefs, feelings and attitudes Discrimination Unfair and unjust treatment (act or omission) Human rights violation HIV-related stigma and discrimination

 Harsh negative impact on quality of life of person  Seriously impedes the response to AIDS (uptake of HIV prevention, testing, adherence to treatment, disclosure of HIV-status, etc.)  Highly prevalent in communities, work places, education and health care settings  Those most at risk of HIV, such as men who have sex with men, sex workers, people who use drugs, experience the most severe forms Why do we care about HIV-related stigma and discrimination?

Measure what is measurable, and make measurable what is not so Galileo Galilei

Government commitments to reduce stigma and human rights obligation not to discriminate Cannot manage it unless you measure it To track progress in programmatic efforts to reduce stigma and discrimination Follow the money! – pressure to show results  funding directed to areas that can be measured Why measure stigma and discrimination

For every complex problem, there is a simple solution that is wrong George Bernard Shaw

Complex reality: S&D indicators at outcome and impact level complicated – cannot be reduced to one measure To understand S&D and design effective S&D reduction programmes: –Need to measure different aspects/forms of stigma and discrimination –Need to measure S&D among different populations How to measure stigma and discrimination

Many scientific studies on S&D using different measures (i.e. cannot compare results) Very few commonly used indicators in national M&E frameworks Current outcome level indicators: –Accepting attitudes towards PLHIV (DHS) –PLHIV Stigma Index Current output level indicators (collected through the National Composite Policy Index, Global AIDS Response Progress Reporting) –Non-discrimination laws –Laws that present obstacles –Mechanism to address discrimination –Programmes to reduce stigma and discrimination –Legal services –Training for judges Reality check!

PLHIV: The PLHIV Stigma Index General public: New draft indicators developed by expert group in in several domains: anticipated stigma, perceived stigma, fear of infection, prejudice and stereotypes, discrimination –Field tested in 2011 (results available soon!) Health care settings: standardised questionnaire currently being field tested Towards standardised measures on S&D

Knowledge is of no value unless you put it into practice Anton Chekhov

Avoid data silos sitting on a shelf: combine data collected among different populations; by government and by affected communities Build the capacity of community groups to collect and use good quality data Package data for different audiences and use in evidence based advocacy to influence: –policy decisions –programming priorities –funding allocations Data for action!