Why it’s time to let communities lead

Centering community needs and letting communities lead the HIV response is the only way AIDS will end. That’s why the communities most affected by HIV are at the heart of what we do at Avert – co-creating content and amplifying community voices to ensure our brands and platforms have the greatest impact

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Published on 30 November 2023 | Yael Azgad and Lucy Gale

This World AIDS Day the message is simple: let communities lead. In one form or another this has been the rallying cry since the early days of the HIV epidemic. But this is beyond ‘nothing about us without us’. It demands that the people and communities who live every day with the realities of HIV must not only be involved in the HIV response, but must lead it.

Avert exists to provide people most affected by HIV with knowledge about all aspects of sexual and reproductive health and rights so they can make informed choices and live healthily. We are only successful because communities most affected by HIV are at the heart of what we do. Young people, people with HIV, women, sex workers, LGBT+ people, community health workers and others co-create content on our platforms Be in the KNOW and Boost. Their voices and views are shared on these platforms and shape them. This means our content is relevant and useful to the people it needs to reach, and those most affected by the HIV epidemic are able to have their say. If the global community is serious about ending AIDS, taking this approach – letting communities lead – is the only way it will happen.

If the global community is serious about ending AIDS, taking this approach – letting communities lead – is the only way it will happen.

The voices and views that matter

In Be in the KNOW’s first-hand blog series we hear from young people in countries where the HIV epidemic is far from over. Joyce Ouma, a young woman from Kenya, talks about how, when she was first diagnosed a decade ago, the support group she was assigned to did more harm than good; how doctors refused to use the same cups as support group attendees. Joyce, who now works on advocacy and campaigns at Y+, the Global Network of Young People Living with HIV, says things have changed since then but there is still a lot that needs fixing, and the answers are more complex than often presented. Giving the example of peer support, viewed as a silver bullet by many, Joyce’s take is more nuanced: “As young people we are not a homogeneous group…Some young people do not like to be handled by other young people because they worry they will talk, so they prefer to be handled by someone who is a bit older and looks more professional.” If we want to end AIDS, this type of insight matters.

This series also features Tonderai Mwareka from the Zimbabwe National Network of People Living with HIV. He describes how simple things like having separate queues for people getting HIV services means many won’t come for those services because they fear being judged. Then there is Phumlani Kango from South Africa who has been taking PrEP since 2017 and understands first-hand the challenges and benefits of doing so. And we hear from Luann Hatane, director of PATA, who has worked in countless health facilities and has seen the difference it makes when young people’s sexual and reproductive health is approached with openness and positivity, not judgement and shame. If we want to end AIDS, these insights matter.

Changing HIV services for the better

As well as individual experiences, Be in the KNOW presents views from communities on the solutions that can make a difference. The Community Voices series gives gay men, sex workers, trans people, young people, women, men who have sex with men and human rights activists a platform to highlight the things that could make HIV and sexual health services more accessible for marginalised and often criminalised communities. If we want to end AIDS, this insight matters.

Graphic with pictures of Community Voices acitvists and text 'Community voices matter'
Community Voices activists

Looking at things from a different angle, Boost, a digital job aid co-created by community health workers in southern Africa, has nine Your Community education units. Each is designed to help community health workers and educators understand why certain groups are more at risk of HIV and how to provide specific HIV services for each group.

Rather than lecturing health workers, these units bust myths and misconceptions to provide accurate information that community health workers and educators understand, engage with and trust, precisely because it has been co-designed by people who work in their roles. These units tackle difficult topics, including how a community health worker should treat a gay man if they think homosexuality is wrong, whether it is okay to provide harm reduction to people who use drugs when drug use is illegal, and if prisoners still have the right to health. Addressing the real questions and knowledge gaps that people on the frontline of the HIV response encounter means they are able to provide more effective support and services. If we want to end AIDS, this matters.

This World AIDS Day we stand with all communities affected by HIV. The global HIV response must do more to ensure each and every one of these communities has the respect, leadership opportunities and platforms they need and deserve – and which are vital to ending AIDS.

Photo credit: Hilton Matyatya