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How to measure HIV stigma

Daniel Reeders |  01 September 2014

Measuring tape

Over the past few years, the rhetorical response to the HIV/AIDS pandemic has become progressively stronger. At the AIDS 2014 conference held in Melbourne in July, UNAIDS director Michel Sidibé announced the strategic goal of 'Ending HIV by 2030'. The overflowing plenary session heard bold new targets for testing and treatment, as well as stigma reduction. Global targets can be used to benchmark countries – but measuring a reduction in stigma is harder than it sounds.

At a subsequent session, the cavernous chamber was almost empty as a sparse crowd listened to an expert panel on 'evidence based stigma reduction'. As one of my colleagues asked, 'what's the international standard unit for one stigma?'

Dr Taweesap Siraprapasiri spoke that night about a systematic effort in Thailand to measure stigma towards people living with HIV. This involves developing panels of eight to twelve standard questions that can be dropped into nationwide telephone surveys or interviews with healthcare practitioners. They ask about attitudes like whether people with HIV should feel ashamed, and practices such as clinicians typically wearing double gloves when caring for people with HIV. Around half the participants (48 per cent) answered yes to both questions during pilot testing in Bangkok.

Are those questions adequate? In my writing about stigma I often describe it as a complex social process. The word 'complex' has an etymology that combines the senses of being folded – having multiple levels – and plaited – weaving different strands together. In stigma, dynamic processes from different levels are interwoven: stigma emerges from the interaction of individual emotions and moral judgments, personal interactions and group identification, cultural stereotypes promoted by media narratives, and political beliefs about social order and inequality.

An example can be found in new criminal laws recently passed in Uganda in response to moral panics about homosexual sex and deliberate HIV infection. In a country once considered at the forefront of the global HIV/AIDS response, these laws reflect new prejudices beaten up by American evangelical missionaries and the uptake of British-style tabloid print and television news coverage.

Research in different countries suggest that as antiviral treatments make it possible to live without visible signs of HIV infection, attitudes often harden against people with HIV. This paradox may explain the rash of new laws criminalising HIV transmission, drafted in such haste that some would apply to a mother whose baby was born with the virus – even though it is due to systemic failure to provide drugs that prevent transmission.

More than any individual attitudes, it is these media, cultural, religious and political dimensions of stigma that will matter as we work towards 'bold new targets' to bring the HIV epidemic to an end. That's for a very simple reason: in health systems under economic pressure, they dictate patterns in who gets seen as 'deserving' resources for prevention, treatment, care and support.

In her book The Wisdom of Whores, epidemiologist Elizabeth Pisani notes that funders and governments have long preferred to focus on women and young people – even in places where HIV is more prevalent among gay men and transgender people, sex workers and people who use drugs.

It was therefore heartening to see a renewed focus on those 'key populations' at this year's AIDS conference. Heartening and sometimes heart-breaking. Michael Ighodaro talked about having to flee Nigeria when anti-gay laws were passed there. Ighodaro was 'outed' in his home country by a Washington Post article that named him as a delegate to the AIDS 2012 conference in Washington DC.

First harassed and then brutally attacked, Ighodaro was denied medical treatment, because he could not obtain a police certificate stating he was the victim of a crime. His experience demonstrates the wide-reaching and interlocking structural effects of stigma, which he encounters as a gay man, a person living with HIV, and now, an asylum seeker.

But people living with HIV also spoke of their success in measuring and addressing stigma. Eddie Banda from Malawi described training peer volunteers to interview fellow people living with HIV about their experiences for the global Stigma Index survey. Armed with the results, they submitted a policy brief that led to the health ministry discontinuing the use of older HIV medications that have disfiguring side effects.

Closer to home, the ENUF campaign by Living Positive Victoria provided a platform for people living with HIV to tell powerful stories of resistance and resilience.

As the global response marches on towards the bold new targets of the day, it may prove to be these local, participatory responses that do most to challenge stigma.

Daniel ReedersDaniel Reeders is an HIV prevention researcher at the Australian Research Centre in Sex, Health and Society at La Trobe University. He blogs about stigma in public health.

Disclosure: Daniel wrote a campaign brief for the Living Positive Victoria ENUF Stigma campaign.

Eureka Street has permission from Michael Ighodaro to include his story in this piece.
Image via Shutterstock.


Daniel Reeders


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Submitted comments

Thanks Daniel for your compassionate article - and a look at the desperate plight of HIV sufferers in developing countries.

AURELIUS 01 September 2014

I remember when my children were young and one of them was attending pre-school there was a media-driven frenzy about a young child with HIV attending pre-school. It was heart-breaking for her parents. Attitudes continue to be in need of change especially in developing countries. Thanks for this article.

Pam 02 September 2014

The description of stigma is just brilliant! Thanks Daniel

Bernadette 02 September 2014

Great article Daniel. I believe that one of the very important components to reducing stigma for those living with HIV and AIDS is for religious leaders to educate themselves and act to confront stigma. Church leaders in the Pacific region have had to undertake such an education and when they have there is an increse in trust by the community in which they have authority to access church based services providing screening and treatment for those lving with HIV. The same was the reality nearly 30 years ago in Sydney when the Sisters of Charity and the clinicans opened the doors of St Vincent's in Darlinghurst to those living with HIV when so many others let their ignorance and prejudices create fear and stigmatise those facing the reality of HIV and AIDS in a time when there was no effective treatment. It was an important expression of compassion that confronted and challenged stigma.

Jack de Groot 02 September 2014

Stigma can have such hidden but destructive consequences. Prevention of stigma needs to go hand in hand with treatment and prevention of HIV/AIDS. Well written Daniel.

Ceciliasomali 11 September 2014

Splendid article Daniel which gives food for thought and ideas for action. I intend to quote it in my presentation next week the local hospital panel that aims to transform it's older people's services. They will soon encounter older people living with HIV...and I intend to see that we are treated with dignity and respect.

Maurice Greenham 06 November 2014

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