Somewhat daunting to find myself speaking right after someone with three honorary doctorates and a knighthood last week – especially when Noerine Kaleeba opened her talk wondering why anyone would use Powerpoint (‘Where is the power… and where is the point??’). Needless to say, the rest of the day – a seminar on HIV prevention organised by my former employers, BTC – was somewhat Powerpoint-heavy (presentations, including mine, available on their website).
As is often the case, the most interesting stuff came during the discussions. The formidable Ms Kaleeba, who founded one of the first AIDS support organisations in Africa and was once a lonely voice speaking out about the disease that claimed her husband, is still trampling over taboos. Back in Uganda, she told us, where homophobia is an accepted political weapon, Noerine invites politicians to her house, where – oh, what a surprise: one of her openly gay friends happens to be visiting too.
Noerine was closely involved in the start up of the UN’s agency dedicated to fighting the pandemic and worked at their Geneva HQ for many years. She gave it up, she told me – because for all that she was doing on a global scale, “I was not helping my village”. She felt more powerless, ironically, in contributing to the worldwide response to HIV/AIDS, than she does now at home, surrounded by family and neighbours – many grieving for those they have lost to the disease.
Because it’s still causing huge grief, even in Uganda, the supposed AIDS ‘success story’. Just recently, the UN announced that global AIDS-related deaths among adolescents have actually risen by 50% since 2005 (compared to a 30% decline among the general population). And this is despite all the tools we now have – pervasive mass media, hugely popular social media, universal primary education, and decades by now of talking about AIDS. But perhaps that’s unsurprising, since knowledge does not actually mean being more careful. Tanzania’s prevention strategy recognises that there’s ‘no statistical association between high knowledge levels and behaviour change’. In fact, educated, wealthy and urban residents – who tend to be more knowledgeable about HIV/AIDS – actually have higher rates of risk-taking behaviour and HIV infection. (Making that link between knowledge and behaviour change was one of the main objectives of the project I presented – more info here.)
So, big efforts needed, still. But where will the money come from? In Tanzania, 95-98% of funding for HIV/AIDS comes from outside donors, some of whom will withdraw from the sector in the next few years. The Global Fund (of which Tanzania is the second-largest recipient) has just announced fresh funds to take it to 2016; but even that is short of what was needed (searing criticism from Jeffrey Sachs: ‘World to Poor: Drop Dead’). Costs of managing AIDS are rising, not falling, as governments roll out testing and counselling services, and as they try to to treat all those who need it. As Olivier Koole told us in Brussels, new World Health Organization guidelines mean that 9 million more people will be eligible for anti-retroviral treatment. Great news – if they can actually afford the pills, that is.
Making treatment available is one thing; making sure people stick to it is another. There’s a troubling drop-off rate, Koole told us, even if today only one pill is needed compared to the 20+ per day some years ago. People may no longer notice the benefits to their health after a year or two; they may not be able to make the regular journey to a clinic; or they may feel the stigma of collecting and taking medication. Under-18s are significantly less likely to be getting treated.
Stigma sticks. The young Ugandans I worked with recently chose to make a short film about a young HIV positive man. The story shows that despite people’s initial prejudices, ‘Alex’ is able to contribute something to his community and through his musical talent, to help other young people. All sounded great – till we had to cast Alex, because even these people (peer educators or volunteers with an organisation set up to help HIV-affected people) were reluctant to play that role. ‘What if it comes true??’, said one, only half joking.
There’s a gap, it seems, between talking about things and shifting a mindset. It needs to be tackled at the most local level, influencing the people right next door.
Inviting them to your house, even. We need more Noerines.