Eliminating the Stigma & Isolation Surrounding HIV

Kim Samuel shared during the 2014 Symposium an exchange she had with Madiba – Nelson Mandela.  She said to him, “I can imagine you know a lot about isolation.”  To her surprise, Madiba said, “No.”  But she quickly learned he wasn’t dismissive of the idea.   In fact it was quite the opposite. He explained that he was never really alone even in solitary confinement, yet he had indeed seen isolation.

In his words, “I know what that loneliness looks like. Isolation is the child with HIV in a village with no one to care for him, no one to feed him, clothe him, or touch him. I have seen isolation and it is very bad.”

Since the first cases of HIV and AIDS in the 1980s, stigma and discrimination have accompanied diagnosis – often overcoming people’s sense of compassion. Misconceptions and misunderstandings have surrounded those living with HIV like walls that refuse to allow people in or out. Not only are these misconceptions wrong, they also cause significant harm in the form of isolation.

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Getting to Zero

In 2014 the World Health Organization estimated there were 39.4 million people living with HIV or AIDS, with 2 million of those being newly developed cases. In many circumstances, those living with HIV are treated as social outcasts. This can lead people to disconnect themselves from their social circles out of fear of being ostracized or stigmatized by those around them. In a survey presented at the AIDS 2010: XVIII International AIDS Conference, “more than 1 in 3 — 37% — of all the participants agreed with the statement, ‘I often feel alone and isolated because I have HIV or AIDS’.

Isolation can cause further harm as those affected withdraw from the support systems that are there to help.

One of the most common misconceptions centres on how HIV is transmitted and the ‘type’ of people that transmit it. “According to the World Health Organisation (WHO), fear of stigma is the main reason why people are reluctant to get tested, disclose their HIV status and take antiretroviral drugs”.

Those living with HIV struggle with finding adequate healthcare and can face an “erosion of their human rights” (Avert).   Furthermore, misconceptions and prejudices may prompt people to feel discouraged and become dishonest with their healthcare providers due to fear of judgement— only further perpetuating the harm to themselves and to others.

Yet there is emerging evidence that progress is being made in eliminating stigma surrounding HIV/AIDS. With the help of organizations such as the National AIDS Trust and Positive Living BC, the barriers and that once surrounded those living with HIV are being addressed head-on.  There have also been initiatives and campaigns such as This Poster is HIV Positive, confronting and challenging misconceptions about the virus:

We must continue these efforts to ensure that the walls of isolation are removed and replaced with opportunities to connect and build communities of support.  On World AIDS Day let’s join organizations such as GIV and begin confronting the misconceptions surrounding HIV because as we know, “kissing and hugging doesn’t spread HIV… Ignorance does”.