At first sight this year’s World AIDS Day theme might seem vague - ‘Reality’. Well, yes, I suppose it’s better to live in the real world, but what has it to do with HIV?

The answer is that the whole subject of HIV is surrounded by myths, outdated information, presumptions about the kind of people who get the virus and magic-bullet solutions to the epidemic, none of which have any basis in reality.

Every time a judge jails someone for passing on HIV because “HIV infection is a death sentence”, they’re living in a reality that’s 15 years old rather than one of today. Equally, underestimating the difficulty of preventing of HIV is also not facing reality. One example is to expect that testing everyone for HIV will provide a solution to the epidemic in itself.

Last month we looked at expanding HIV testing; but this month we find that receiving a positive test is not the end of the story. As Chris Morley and I discover (See Lost to Care) a significant minority of people then disappear from HIV care, perhaps preferring to live in an unreality in which AIDS will never happen, just as they thought HIV never would.

While people’s right to not seek medical support must be respected, it’s possible that some patients may be scared off by myths and outdated information around treatment, such as the idea that all HIV drugs inevitably have awful side-effects. Others, having gathered the courage to test, suddenly find themselves defeated by the stigma and isolation they face and feel.

Many people vulnerable to HIV will never be completely happy to test, and many people infected will never be at peace about having the virus, until we see the end of HIV stigma. But, as we find out in Punching Fog, stigma is a slippery concept. It’s very difficult to fight something that saps the self-esteem of the fighter.

The solution the Stigma Index people came up with was radical: the problem is the solution. Get people with HIV to help other HIV-positive people talk about their experiences. The victim of stigma becomes its chronicler. Do it in as many countries as you can. Then repeat the exercise every few years so you have a story of the way HIV stigma develops and changes over time. We hope funders will enable the Index to keep telling it.  

If HIV was curable rather than just treatable, it might neutralise some of the stigma. As Derek Thaczuk discovers in How does HIV make us sick? scientists continue to probe the mystery of how a weak little virus gets its teeth into our immune defences and just won’t let go. If we know, we might be able to prevent or eliminate HIV altogether, as we will explain in the next issue.

Till next time, our World AIDS Day wish for 2010 is more progress towards both a cure and a world without stigma.