Surviving, thriving and supporting others, by Winnie Ssanyu-Sseruma

Published: 09 December 2013

Some thoughts on the occasion of the final ever issue of HIV treatment update (HTU), from Winnie Ssanyu-Sseruma, senior policy and advocacy officer for community health within the Africa Division at Christian Aid. Back in 1996, Winnie was the first African openly living with HIV in the UK to appear on the cover of a national magazine. Winnie's comments form part of a feature article, All change.

The advances in HIV treatment have fundamentally changed the lives of many people living with HIV and, to a great extent, the global health landscape. In the 1980s, anyone who was known to have HIV not only had a short life expectancy, but many experienced stigma and died horrific deaths.

When I was diagnosed with HIV in 1988, I felt like death wasn’t far off; I was filled with fear, really not living but just going through the motions.

In the 1990s, when combination therapy arrived, there was much-needed hope. Although physically my treatment worked liked a charm, what I didn’t count on was how difficult it was psychologically to shift my mind from wondering when HIV was going to kill me, to living longer with it. Through therapy and other social support I was able to live again.

Twenty-five years on from my initial HIV diagnosis, the last decade has been about supporting others to access the services they need, speaking up and moving from working on HIV at a national level to an international one. I have learnt a lot through HIV activism (not all the learning has been about HIV), enabling me not only to get my life back, but to thrive.

Despite lingering challenges of HIV-related stigma and late diagnosis, I have seen a transformation in attitudes within the African communities in the UK. Some faith leaders have become HIV activists, something seen as close to impossible in many people’s books. Because African and gay communities have been most affected with HIV, it made common sense to work together. I really feel that this partnership has helped to put a dent in homophobia in African communities, although I admit there is still a long way to go.

There are still a few worrying issues. HIV information campaigns and testing levels are nowhere near where they should be. We know that those living with HIV who are not aware [of their status] or not on treatment are more likely to pass on HIV than those on treatment. And there are millions around the world who need treatment now and are unable to access it. But funding levels for anything HIV-specific have declined and HIV support organisations are either cutting back or closing down altogether. The stigma attached to living with HIV is still rife, especially in rural areas – not just in the UK but in various parts of the world.

I am concerned that if there isn’t the same level of investment in HIV globally there might be another HIV epidemic on the horizon. Many funders have now moved on, way too quickly, to funding other health issues. HIV remains an unfinished agenda and, if not dealt with properly, may unleash a second wave of HIV that may be more lethal than what we have been dealing with for the last three decades.

For more information

The final issue of HIV treatment update is out now and available online at:

Winnie Ssanyu-Sseruma is senior policy and advocacy officer for community health within the Africa Division at Christian Aid. You can find out more about its work at:

Community Consensus Statement on Access to HIV Treatment and its Use for Prevention

Together, we can make it happen

We can end HIV soon if people have equal access to HIV drugs as treatment and as PrEP, and have free choice over whether to take them.

Launched today, the Community Consensus Statement is a basic set of principles aimed at making sure that happens.

The Community Consensus Statement is a joint initiative of AVAC, EATG, MSMGF, GNP+, HIV i-Base, the International HIV/AIDS Alliance, ITPC and NAM/aidsmap

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