When the first World AIDS Day took place, in 1988, having HIV meant getting AIDS and dying of it, quite rapidly. It was essential to raise awareness, both to try to prevent the spread of the disease and to push the medical community into coming up with effective treatments. Today, with the rapid improvement of medication to control the HIV that leads to AIDS, and with the number of AIDS deaths on the decline in many parts of the world it may seem to some people that it is no longer very necessary to shine such a light on the issue. People who have access to Anti-Retroviral Treatment (ART) can live normal lives, aside from taking medication and medical check ups, of normal length. But that is not all there is to it.
First of all, not everyone has access to ART, or even to getting a diagnosis, particularly in low-income countries. This means that over there being infected with HIV is still a death sentence. And the disease is spread through unprotected sex by people who may not be aware that they have it themselves. More still needs to be done to change this situation.
Secondly, while medication has improved and the health aspects of the disease are having less of an impact on the lives of people infected with HIV, something else still has an enormous impact on their life: the stigma attached to HIV. This is still a very big problem, all around the world, and it destroys lives.
Because of a lot of misunderstanding or misinformation going around about the disease, there is a fear surrounding it that is completely out of proportion. It causes families to be thrown out of their community, children to be left on their own when one or both of their parents have died of AIDS. Even doctors, who really should know better, refuse to treat patients with HIV for fear of getting infected. I have seen a dentist refuse to extract a rotten tooth, causing a lot of pain, because the tooth belonged to a boy who had HIV.
I, myself, have been asked how I protect myself, when I work with children with HIV, by a healthcare professional in Europe. That question really left me in shock. I protect myself by not having sex with the children and not sharing needles with them, it is not a huge challenge. Too many people are unaware of how hard it is to get infected with HIV when sex and shared needles are not involved.
You cannot get it through normal daily interactions. Including if you get vomited on, drooled on or even bitten by a child – and I should know. Outside of sex, shared needles and contaminated blood transfusions, to have a chance – not a guarantee! – of being infected, both the person who has HIV and you need to have a large, actively bleeding wound and the two wounds need to come into direct contact with each other. That is it, that is where the risk lies. And that is a pretty far-fetched situation, to be honest.
And yet, people with HIV continue to be shunned. When I am involved in a process of moving children from institutions to family-based care, if there are any children with HIV involved, this requires a long and thorough awareness raising campaign. Before we can even think of announcing that we are going to move the children back into the community and that we are looking for foster parents to care for them, we face a long, uphill struggle to raise awareness and break down the myths and the stigma surrounding HIV and AIDS.
The problem of stigma is not just something ‘over there’. It happens ‘here’ too. I have friends in Europe who are HIV positive and who received some heart-breaking reactions when they told their friends. Clearly, we are all in need of making sure we are better informed about the realities of HIV infection and of the need for acceptance of people who live with HIV.
I will be at a fundraiser today, as a trustee of Snehalaya UK, I will try to help spread knowledge and understanding, while we raise money for Snehalaya, an Indian organisation that provides support for people living with HIV, including providing doctors willing to treat them.
I hope you will also do your bit. Whether by donating, or even better by accepting that someone you find out has HIV is no different from before you knew and allowing them to stay in your life in the same way.
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