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.
If we want to reduce HIV, we must empower communities to take on the fight
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.”
STIGMA AND DISCRIMINATION
Almost two thirds (64 per cent) of Britons believe that stigma and discrimination against people with HIV remains high in the UK, according to a public attitudes survey conducted by Ipsos Mori for NAT (National Aids Trust). Although this figure is down from 85 per cent of people ten years ago, campaigners say there is still a great deal to be done.
The survey, which gathered almost 2,000 responses, found that 67 per cent of people would be comfortable working alongside someone with HIV, down from 70 per cent the year before. Yusuf Azad, NAT policy and campaigns director, says the organization continues to see serious cases of discrimination, including children who are excluded or segregated in school and funeral homes that refuse to touch the bodies of those with the condition.
NAT says that, shockingly, one in three people who report discrimination had experienced it in healthcare. Mr Azad says that this kind of stigma “leaves us all more at risk” because it stops people coming forward for help and advice that could stop the spread of HIV. To become a tolerant society, we have to become an “HIV literate society”, and increase public education and engagement, he says.
FACT FILE
HIV stands for Human Immunodeficiency Virus. HIV infects and gradually destroys an infected person’s immune system. Initially, someone living with HIV may not show symptoms as their immune system manages to control the condition. However, in most cases, their immune system will need help from anti-HIV drugs to keep the infection under control.Aids is short for Acquired Immune Deficiency Syndrome.
Aids is not a single disease or condition. It is a term that describes the point when a person’s immune system can no longer cope because of the damage caused by HIV and they start to get one or more specific Aids-defining illnesses.There is no cure or vaccine for HIV, but treatments have been available since 1996 that help people with HIV stay healthy for longer.
A person diagnosed early with HIV can expect to have a relatively normal life expectancy. Testing technology now means that some HIV tests can be done in under an hour with just a finger-prick test. Most HIV results are given within a maximum of a week of the test and a negative result will not affect your ability to get insurance.
