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World Aids Day: Address stigma or reaching zero will remain a fantasy

Winnie Ssanyu Sseruma

The latest HIV statistics by UNAIDS illustrate that the number of people living with HIV has risen to a staggering 34 million globally – a figure that reflects those who became newly infected last year but also those who are already HIV positive living longer thanks to the scaling up of ARV treatment. But while new infections have fallen in some countries in Sub-Saharan Africa such as Ethiopia and Zimbabwe, in places like the UK, despite consistent access to treatment for the majority who need it, new infections have been rising steadily over the past decade.

Of course, exactly how the current UN figures are broadly interpreted depends upon who is doing the analysis. What I would personally like to acknowledge is that in countries with significant epidemics, the intensity of HIV prevention and treatment interventions and the money spent on them finally appear to be paying off. It is really important that investment continues. However, what is not evident from the statistics is how HIV-related stigma is being addressed, and many people working on HIV agree that it is going to take a lot more than HIV medication to stop HIV dead in its tracks. Indeed, there is an urgent need to tackle structural barriers which prevent people from accessing and utilising HIV prevention, including stigma, discrimination, criminalisation and harmful gender norms, if HIV is to be eradicated.

Over the three decades since HIV was identified, there have been many and varied efforts to educate people about the disease and to try to change the negative attitudes towards those living with it. However, as the science of ARV treatment continues to transform the lives of many, the prejudice and discrimination attached to HIV positive people persists. Although there is a certain stigma attached to other diseases such as tuberculosis (TB), there is something unique about HIV which creates an irrational fear of those living with the disease. Many people argue that HIV stigma is perhaps fuelled by the association of HIV with sexual transmission, death, emaciation and significant weight loss in the end stages of disease, all of which seem to evoke this emotional and sometimes personal projection of fear and discrimination.

I can clearly remember attending an African social event in London a few years ago when, whilst enjoying myself talking to a group of men, one onlooker took serious offense. A friend later told me that when one of the men had gone to the bar to get a drink, the barmaid told him that she hoped he realised I was HIV positive. I immediately took this to mean that people should not have been talking to me at all, or that I should not have been attracting the attention of the opposite sex, let alone anything more intimate. Even though I talk and live openly with my HIV status, I was taken aback by that particular situation.

HIV-related stigma and discrimination manifest themselves in many different ways and can be subtle or blatant, depending on the situation and social environment. It is not only the preserve of those living in places where HIV is most prevalent – stigma is a global issue, embedded in everyday life, and cuts across racial, ethnic, cultural and gender divides.

Even though many people know how HIV is transmitted, once it becomes a reality in their lives, somehow the knowledge they have acquired becomes irrelevant. That is when you find families hiding affected relatives away and treating them like animals, passing food under the door to avoid contact with them, and some employers suddenly becoming afraid of someone dying on the job from a HIV-related infection and using any excuse to fire them. Likewise, paranoid governments impose visa restrictions on HIV positive travellers, even though there are many more infe

ctious diseases that do not carry the same constraints.  Opportunists prey on vulnerable HIV positive people by counselling them not to take their ARVs but place their faith of being healed in a higher power alone. Some health care providers even forget the code of ethics they signed on to when it comes to how they treat and care for people living with HIV. The impact of these attitudes and actions continue to destroy people’s lives and, unfortunately, also allow HIV to keep flourishing.

Amazingly, nearly half of all HIV positive people worldwide are estimated not to have taken an HIV test at all due to the stigma surrounding the disease and their very real terror of what it might mean for them, their families, and their livelihoods once they do. Then there are those who have tested positive already and are petrified of telling their partners and/or family members for fear of blame and exclusion or even being disinherited. Many children born with HIV struggle to get the truth out of their parents and usually find that information elsewhere, which can have devastating consequences for families. Many are unable to access the care and support they need, preferring to become ill and die than face the discrimination they would probably have had to face. HIV related stigma and

discrimination also negatively impacts on the ability of governments to effectively respond to HIV because the exact magnitude of those infected and in need of treatment remains unknown.

The lesson that we all have to learn is that addressing HIV-related stigma effectively is in the best interests of everyone. There simply isn’t enough investment in interventions that work to eradicate the discrimination surrounding HIV, and in an era of reduced funding and world recession, it is only going to get harder to make decisions on what to prioritise. The impact of not properly addressing stigma is that reaching zero new HIV infections and AIDS-related deaths will remain an aspiration and never a reality.

134276801 World Aids Day: Address stigma or reaching zero will remain a fantasy

Dozens of volunteers join a human chain in the form of a red ribbon in Taiwan, a symbol of 'love and care' for HIV and AIDS carriers worldwid.

Christian Aid has partnered with Magnum Photos to launch ‘Stigma under the lens’, a series of powerful audio-photographic slideshows for World AIDS day featuring brave people around the world living with HIV under the shadow of stigma. The stories examine how stigma manifests itself in everyday life for someone who has HIV, and go some way to explaining why thousands of people would rather not know their status than face discrimination at home, in their community, at work and within their faith. See ‘Stigma under the Lens’ at www.christianaid.org.uk/hiv

A photographic exhibition will be at Rich Mix (35-47 Bethnal Green Road, London E1 6LA) until 11 December.

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  • dr prem raj p pushpakaran

    On December 1st, public should make a pledge to fight against this deadly virus.

    dr prem raj pushpakaran
    http://www.incredb.org/investigator.php?incredb_id=373&prev=prev

  • http://www.facebook.com/abraham.motsoane Abraham Motsoane

    Hi Winnie,
    An excellent post!  I was compelled this morning to write one on my education protal: http://www.learningevarsity.com, and I could not help but give reference to your article here.  I love your sincerity and honesty, this is very important for the African continent and the world as a whole.  Your wealth of knowledge and reseaarch is clearly immense, and this speaks directly to Education!!  Keep up the good work!!!

    Best regards,
    Abraham “Abie” Motsoane, Business Manager – Learning e-Varsity
    http://www.learningevarsity.com
    abiem@learningevarsity.com

  • http://www.facebook.com/pippa.woods1 Pippa Woods

    Tackling stigma is hugely important.  Stigma creates shame, fear and prejudice and it’s only by changing public perception of HIV/AIDS that it is possible to begin to dismantle these things.  The road from shame and fear to rampant paranoia and prejudice is very short and stigma makes it shorter still.

  • NeverMindTheBoll

    “nearly half of all HIV positive people worldwide are estimated not to have taken an HIV test at all ” – it makes you wonder how the number of people with HIV is actually calculated.

  • anacoluthia

     HIV has visual indicators.

  • anacoluthia

     And it’s pretty easy to make estimates based on previous results in certain areas. If 1/3 people you test in a certain area have it, you can assume that will hold true for a larger sample.


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