World Aids Day; Beyond Statistics, The SILENCE

World Aids Day is an important reminder of the devastation on a catastrophic scale that has shocked the world into silence. If it is not something which affects our family we don’t think about it. Of course we know that medicine has progressed so far that although there is as yet no known cure, people can live with HIV almost normally, can’t they?

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The statistics are grim in whichever way they are presented: Worldwide there are 36.7 million people living with HIV,  25.5 million of these are living in Sub-Saharan Africa.

The annual number of new HIV infections among adults has remained static, at an estimated 1.9 million a year since 2010. Moreover, there has been resurgence of new HIV infections among key populations in some parts of the world.

Stigma and Discrimination

One of the biggest challenges in addressing the HIV/AIDS epidemic in South Africa is the stigma and discrimination surrounding the disease.

What many people are not waking up to is that we don’t talk about it. The stigma and shame exists amongst people living with HIV in the UK just as it does in South Africa. Here are some quotes from people living with HIV in the UK:

‘To have HIV is also to know one’s fair share of isolation and marginalisation within a society that blames us, to begin with, for having it.”

‘HIV is still intrinsically linked with somehow you having done something wrong, because it’s sexually transmitted. I think that we assume that it’s our fault that we got it. That’s the self judgement of it. If I didn’t have sex, I wouldn’t have HIV, – fact.”

People living with HIV in the United Kingdom continue to feel stigmatised and experience HIV related discrimination.

‘Survey findings show that while two-thirds of the 1576 participants felt overall positive about their life and in control of their health, in the past year around half reported feeling shame, guilt or self-blame in relation to their HIV status and one in five had felt suicidal. These feelings are more likely to affect people recently diagnosed with HIV. ‘  (The People Living With HIV Stigma Survey UK 2015 )

It’s not about Blame

But it’s not about blame, it’s about a terrible virus that happens to be sexually transmitted. When people are not accessing screening or treatment the results are devastating for everyone in the community. If we are not talking about the possibility of transmission of the virus we are risking our young peoples’ futures.

In a world where media and social media networks have become background to our lives, we are used to open discussions and images of sex, pornography, homosexuality and gender reassignment but we still cannot talk about the effects of Human Immunodeficiency Virus. In the UK we act as if it doesn’t exist and in South Africa it is too terrible to talk about.

Do you remember, if you are old enough, in the sixties some people used to talk about the Big C, (Cancer) in hushed voices. Now the media share loved one’s journals and experiences of cancer and films are made about how it affects individual’s lives.

Moving on from statistics and whether we talk about the disease or not, I refer back to that last phrase, ‘it affects individual’s lives’

This year in a huge gathering in Durban entitled, “WAKE UP THE WORLD” campaigners voiced their frustration about denial, stigma and inequalities affecting people with HIV unequal treatment.

“Rights activist Nana Gleeson said that in neighbouring Botswana, health worker prejudice against those on the margins of society like prisoners, foreigners and transgender people was widespread.

“It’s actually stigma that’s killing people. It creates an opportunity for people to then not give people access to treatment or whatever they need,” she said.”

A review article, states that People living with HIV experience stigma throughout their lifetime. Stigma prevents the delivery of effective treatment and care and escalates the infection rate of HIV. (Journal of Tropical Medicine Volume 2009, Article ID 145891, 14 pages doi:10.1155/2009/145891 Stigma of People with HIV/AIDS in Sub-Saharan Africa:)

In isolated rural areas of South Africa the silence that perpetuates the transmission of HIV more often leads to full blown AIDS before a diagnosis is made. There are reckoned to be a million AIDS orphans in South Africa and the extent to which the stigma affects their young lives is only now beginning to be reckoned. Imagine a scenario where members of your family and community are dying and no-one talks to you about what is happening. How can a young child begin to voice their fears if no-one admits there is a problem. How can learning, healthy mental, physical and social life develop?

The Effects of Stigma on Children

In an important new study on the effects of stigma on AIDS orphans, the authors highlight the incidence of PTSD (post traumatic stress disorder) anxiety peer problems, issues of self esteem and a whole catalogue of psycho-social ills.

Zeenat Yassin & Charlene Jennifer Erasmus (2016) The impact of HIV related stigma on the psychological well-being of children who have been orphaned by AIDS,  Vulnerable Children and Youth Studies, 11:4, 297-323, DOI: 10.1080/17450128.2016.1214769

On World Aids Day we are often reminded of the statistics of AIDS but we need to think about the impact on individual lives and how that affects the future. ‘Silence’ is the real killer because people are denied or even deny themselves treatment because of society not speaking about HIV/Aids.

Just as we now talk openly about ‘The Big C’ we must learn to speak out about HIV Aids. We must include the children in these conversations as they are the ones who pay the very real price because of OUR Silence.


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