Monday, 01 December 2014 09:24

Reflections on World AIDS Day: Pierre

Written by  Pierre Brouard

World AIDS Day 2014In some ways it feels surreal to be writing this – it is over 30 years since I first started hearing about a new disease which seemed, then, to only be affecting gay men. Then there were stories about sex workers and drug users also getting ill. For Americans and Europeans it was not only a disease of the marginalised, it was also a disease of Africans from the “dark” continent. For many Africans it was a western disease imported from, or deliberately spread by, the United States or some other racist scientific clique. In short, it was a disease of someone else, not me, not us. When it became clearer that haemophiliacs who had blood transfusions were also getting HIV, and that mothers could pass the virus onto their babies, and that “faithful” wives could get infected by their “unfaithful” husbands (or vice versa), and that “ordinary” people were not immune or exempt, the picture became more complicated, and our judgements became less certain.


And in the beginning as I saw people dying and I lost friends and acquaintances, and then clients as I began to work in the field in the late 1980s, it was hard to keep hopeful and to believe that something could be done to reduce the deaths and the impact. I can remember telling friends “don’t test for HIV, there are no treatments and there is a lot of stigma – just be careful, use a condom and look after your health”. It was a time of depression, fear and suspicion – and life seemed very precarious, as it always is when you are in the middle of a “war”. And we don’t have a shortage of war and conflict in many parts of the world today, where there is still despair and life is still very uncertain, not to mention outbreaks like Ebola which frighten and unsettle a lot of people.


But in many ways, where HIV is concerned, there is so much more reason to be optimistic. I am not saying it’s good to be HIV positive today, but I am saying the picture is improving. And in South Africa we have a lot to be grateful for. Even though we have over 6 million South Africans living with HIV, over 2 million of them are on treatment. And we have reduced mother to baby transmission rates to around 4% at 6 weeks. We know that over 10 million South Africans tested for HIV in 2011, largely a result of making testing more available to us. We know that nurses are being trained to initiate people onto treatment and that the government is committed to making ARVs available for the foreseeable future, especially as prices have gone down. We are more committed to tackling TB so that people who are co-infected have better survival rates, and we know that death rates related to HIV are generally dropping. I would speculate that stigma and discrimination have lessened too, partly because we have an excellent human rights framework around HIV and partly because we have begun to see HIV as part of our personal, social and political landscape. HIV is more “normal” now than it has ever been.

These are things to celebrate.


But there are things to work on too. And we need to be vigilant and challenge complacency, because HIV and AIDS are dynamic and changing, as is our society.  HIV incidence rates are still higher than we would like, and HIV prevalence rates in gay men, and other men who have sex with men, are astonishingly high here. In some studies figures of up to 50%, compared to less than 20% in some heterosexual samples. This tells me something about the homophobia and rejection these men still experience, and a health care system and HIV response which has been reluctant to deal with this “community”. Lesbian women are not safe either, as our sorry record of rape and attacks on them show. While treatments are now more accessible than ever, we have had stock and supply problems, and our monitoring and support of people on treatment is less than it should be. As our medical interventions get better and grow in number –like ARVs for positive people, ARVs for negative people to prevent transmission, ARVs after accidental exposure, making testing more accessible – we run the risk of forgetting that behind these important and necessary initiatives are people: humans with lives, loves, beliefs, stories, families, fears, struggles and dreams.


We must never forget the human element. We are all on this precarious journey of life and all of us, HIV positive and HIV negative and HIV affected, have challenges and joys. Sometimes we can forget, in our important focus on people with HIV, that everyone has “stuff” that they deal with every day, and their own share of heartaches and loss, along with joys and successes. Some of you reading this may be living with HIV, some of you may have other chronic diseases which you manage, sometimes well and sometimes not so well.


And many of us will have experienced some form of discrimination or rejection – after all as humans we seem to be quite good at judging and labelling. It is human to speculate and gossip and chat, that’s often how we deal with our fears and anxieties. But when the speculation, gossip and chat turns into rejection and devaluation and harm, then that’s a problem. This is why, even in 2014, it is useful for people living with HIV to weigh up an HIV disclosure very carefully and thoughtfully. This can also be helped if they have had a chance to process their “internalised” stigma, often a profound barrier to accessing, and asking for, help.


There are many kinds of disclosure – some people want to become activists and wear their status on a T-shirt, some want to tell their colleagues to build a more inclusive work place, some will only confide in their close family and friends, some may tell no one. I think all of these are OK – it’s not always easy being defined by your “condition” and it can be tiring to always be educating someone about a condom, or seeing in their eyes the question “I wonder how they got it”?


For me, this pressure should not only be on the person living with HIV, it’s also about us as lovers, partners, family, friends and colleagues. What have we done to create a safe and respectful space – not only for people to confide in us about health, but for our children to talk about sex and sexuality, for a friend in a difficult relationship to say she has had an affair, for a junior colleague to say they feel bullied in the workplace?


So for me, World AIDS Day is not just about people with HIV and those affected by it, it is also about how we build a society which rewards, personal, social, economic, organisational and political integrity. It starts with me and with us, today.

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