Winnie Sseruma: Involving and empowering people living with HIV

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  • Posted:Tuesday 25 April 2017

Winnie Sseruma, London HIV Prevention Program Evaluation Advisory Committee, UK-CAB, discusses the importance of involving and empowering people living with HIV, and promoting good quality of life as well as good clinical outcomes.

This presentation was recorded at our conference on The future of HIV services in England on 25 April 2017.


Thank you for the invitation to speak here today. My task is to speak about the importance of involving people living with HIV and empowering people living with HIV to do the work that we need to do. 

After 30 years of living with HIV and maybe 25 years of being an activist I’m exhausted. I’m exhausted but there is work to do and I can’t sit on my laurels.  Every time I think okay I’m done I feel like there’s so much more to do, but there’s very few of us to doing this work at the moment and many of them are in this room, they are in this room doing the work that they need to do.  I don’t want to stand up here and tell you who doesn’t know that it’s important to involve people living with HIV and empowering people living with HIV to do the work that we need to do in the HIV sector?  Who doesn’t know it?  We all do know it.  Why are we not doing it?

We need to step back and say what is it we are not doing and talk to activists, talk to people living with HIV and who are we? We are a diverse group.  We are a diverse group of black, yellow, green, red, brown people.  I’ve heard only two presenters talking about young people young people living with HIV, I’ve heard nothing said about that.  We need new activists, old activists talking to younger activists.  How do we as people living with HIV who are active now find the pathway of those who are not active and interest them in doing this work?  Because if we don’t we will fail and it won’t be just the failure of people living with HIV it will be a failure of everybody else who is working with us.

I don’t mean to preach to you, I know you are all doing everything that needs to be done but we need to bring in more people. We need to bring in more people, we need to fight.  We have great opportunities to continue to fight, I agree Deborah an election let’s continue to fight, let’s put HIV on the agenda, there is money out there.  The money is out there.  Where has it gone?  Where?  The money is there.  We’ve always said there’s no money and then it appears.  The money is out here let’s make it work for us.  Let’s make it work for us.  Let’s involve people living with HIV in everything that we do.  Think of us first.  Planning, development, evaluation, think of us. 

As people living with HIV let’s try and get over ourselves for a minute, let’s get out of our bubble and engage others. Let’s engage other patient groups.  Yes we are special but other people are special too and they need services.  If we don’t engage them we will lose out.  So let’s go out and engage them.  If we are asking for peer support let that peer support be peer support that’s reflecting the reality today.  I’ve been to support groups where I’ve wanted to slit my throat and I’m like if I sit here for another minute I’m going to commit suicide.  Please for organisations that are providing peer support let’s look at the relevance of the information that we are providing, the relevance of the capacity that we are providing people, empowering people.

I want to specifically talk to the African community because I'm African just in case you didn’t notice. We have no leadership within the African communities, it’s disappeared with many organisations that have gone before it, people don’t know where to go and black people keep joking, that’s black people.  That’s not a joke!  People are dying still at this particular time and we are the least engaged but the most affected.  We need to go back to basics.  When I say basics we all need to play our part.  What is it in your capacity, what is it that you can do?  We need to value the experience of people living with HIV that’s starting with GPs.  One time I went to my GP that’s not very long ago, two months ago actually, my GP wasn’t there saw another GP told them my bone hurts, I’m getting old, this experience of living with HIV for a long time, medication and all of this and the GP goes, “You’re a doctor then are you?” and I thought living with HIV for 30 years that experience gives me permission to tell you exactly what I know because I live with this HIV every day and that’s my doctorate, but it is that where people don’t feel valued where they go.  We need to go back to basics.  Once people feel valued, once people feel empowered, once people feel that they’re not a problem they’re not about the problem they are also the solution, that they are the solution, then they’ll start to act, but as Gary said not everybody as a person living with HIV is going to become an activist but we still need to find out what is it that actually interests them, what is the pathway?  For me the pathway was about treatment literacy.  Treatment literacy empowered me and that’s why I’m still speaking now.  That’s why I haven’t shut up about HIV and that’s why I still feel that it’s important for every patient, HIV patient, to know about their treatment so that they can be able to take it.

There’s so much that has been spoken and I didn’t want to repeat it so I came here very much on a personal mission. People living with HIV are important, we know that, how does that translate in actually valuing them, empowering them to do the work that they need to do?  How do we get more activists empowered throughout all the communities, throughout all the age brackets?  How do we get to do that?  If somebody tells me that there isn’t money I might throw something at them because there is money.  Let’s make it work for us.  Thank you.


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