The Ernest Foundation is run from a tiny, overcrowded living room on the top floor of a high-rise block in the heart of Peckham, south London. Desks, computers and a tangle of wires are crammed in among family photos and Ghanaian flags. Posters about treating HIV and Aids line the walls alongside press clippings of Barack Obama and Michael Jackson.

“We do what we can,” says Ernest Nkrumah, the organisation’s director, with a warm grin and a loud African shirt. This small man set up the Foundation in his home in 2006 when he realised there was a gap in services for the West African community. Now he sits taking calls at any time of the day or night on a small Bluetooth mouthpiece fastened to his head. On his sofa, many young Ghanaians have spoken for the first time about their diagnosis and regularly ask for advice.

“It has to come from me. Even if a doctor gives advice, they won’t believe it,” says Mr Nkrumah. “A lot of people are listening to Ghanaian radio stations that tell them people with HIV deserve it. But they trust me and know me. They won’t go to their pastor, but they’ll come here.”

His words speak to a growing realisation among experts that, if we want to reduce HIV, we must empower communities to take on the fight. According to Mr Nkrumah, any solution that felt imposed from the outside would be rejected outright. With the increasing need to save money, there is now a greater appetite for revolutionising services and models of community empowerment are gaining ground.

Garry Brough, membership and involvement officer for the Terrence Higgins Trust (THT), who was diagnosed with HIV 20 years ago, says that such models are even more powerful when led by people living with HIV. When you sit on that hospital chair and first receive your diagnosis, it’s common to feel a rush of hopelessness and fear. But by plugging into communities facing similar challenges and helping to run campaigns, a feeling of agency can be restored, he says.

“People listen to me more because I am also living with HIV,” he says. “When a big organisation gives you information, you think it’s because it’s what the government or the NHS wants you to do. Other patients are trusted a lot more because they don’t have an agenda.”
Although Mr Brough nearly died from his condition, he managed to recover and wanted to give something back. He gave up his job in the film industry and now oversees a THT 2,500-strong online peer support network, which allows people diagnosed with HIV to share their thoughts, experiences and solutions. He also helped set up a patient network at the Bloomsbury Clinic in central London. Now every time a patient receives a diagnosis, they don’t just talk to a doctor, they also meet someone who went through the same thing.

Such schemes seem to be more efficient. If support workers weren’t on hand to offer advice, doctors would have to do it which is more expensive for taxpayers and less meaningful for patients. At a time when health services are being forced to make huge savings, it is not surprising that other clinics are starting to replicate the Bloomsbury model.

Community-based projects also appear to be better at delivering behavioural change. Because there is still no cure to HIV, combating the disease relies solely on people taking responsibility for their actions – using condoms, clean needles and getting tested, to name but a few examples. This won’t happen if people are sitting on the sidelines. It can only happen if people are engaged in the fight against HIV – and community projects help with that.

Perhaps most importantly, community-based responses offer a sense of power. Alvaro Bermejo, executive director of the International HIV/Aids Alliance, says he sees examples of this all over the world. In the UK, user-led campaigns were what first forced the government to recognise the illness and provide treatment. More recently, in Ukraine, patients have led successful campaigns to reduce the charges for anti-viral medication, allowing many more patients to receive treatment.

As Mr Bermejo puts it: “When you’re diagnosed, you can feel worthless and marginalised, but joining campaigns has turned people, who felt vulnerable, into powerful health advocates and activists. I don’t think governments or the voluntary sector have taken this seriously enough in the past. Now they are waking up to the possibilities.”

Picture credit: Design Pics Inc/Rex Features