Global History of HIV/AIDS Activism

Winnie Ssanyu Sseruma is a London-based HIV activist and, among others, a co-author of Our Stories Told By Us, a book which highlights the African contribution to the HIV response in the UK. Interview with Nikolaos (Nikos) Papadogiannis, April 2025. #Africa #UK

Nikolaos Papadogiannis: Winnie, let me thank you once again very much for our discussion. If I may start by asking you the usual question of how you would like me to address you. A brief description you would like to give about yourself.

Winnie Ssanyu Sseruma: Just call me Winnie. I’m proud to be an HIV activist. In my regular job, I do international development work and I monitor and assess community health projects, mostly in Africa. I am very proud of that work. But just call me Winnie for today’s purposes.

Nikos: Sure. Thank you very much. And I have to say, I’m really excited about our discussion. So, my project is about the significance of people and ideas from the global South on HIV work in the UK and Europe more broadly. I’m keen on finding more about the history of particular ideas, art patterns for various ways in which ideas from Africa helped change HIV work in the UK. I would like to ask you about some key moments of your HIV work.

Winnie: AHPN was significant. You know, the African HIV Policy Network at that time was significant because it was the first national policy network in the UK, representing all of the African communities. It was good in that particular way because we realized that we couldn’t just do the work on the ground and then not have a policy organization where we could actually influence policy. And we realized that that was, you know, an important connection. We just didn’t want to do the community work and get absorbed in it without it informing policy. So that is why it was created. But the other reason, which we do not talk about a lot is, we were forced into this position by the Department of Health, who did not want to deal with just one specific African community at a time. They forced us to have this representation so that they could support us with funding, which we were grateful for, but it wasn’t a lot of funding. It was like asking European countries to band together and be supported like that. And we didn’t have, you know, a lot of leverage in terms of arguing back and forth and all that, sort of thing. So in terms of funding, we got peanuts, literally. And that is part of a cycle in this country around, you know, how immigrants are treated, a little bit of racism. For us, it was important to do the work for the communities and for me as an individual, becoming the Chair of the African HIV Policy Network was really a huge sort of learning curve. It was huge. I became the Chair, I was the first openly HIV positive person ever to be Chair of a national organisation. But at that moment, at that time, I didn’t really envision what that meant. And I met a lot of people who had, you know, similar views, wanting to do the work. We all really wanted to do the work for our communities because the 90s were very difficult. Yes, they were very difficult because HIV was really, really impacting our communities. We lost a lot of people. And so it was a very difficult time. The stigma, the stigma attached to HIV was at its height, the national newspapers, what they were writing about immigrants with HIV, with this, with that, the newspapers in the UK, were challenging for me. It was really challenging because although I was born in the UK. I didn’t grow up in the UK and I only returned in the mid 90s. I literally actually came for a two-week vacation. And I, well I’m still here in the UK. But it was a real turning point in my life, because I had been HIV positive for eight years. I’d never accessed a support group until I got to the UK. And, when I arrived in the UK, I was at my worst in terms of health. I had AIDS at that time. So being able to access treatment allowed me to contribute in a way that many other people were afraid to contribute, because many people were, you know, migrants and they didn’t have their legal status sorted, plus they lived with HIV. And so there were a lot of people who were afraid that if they raised their heads above the parapet, so to speak, they would be deported if they spoke up. So I was able to speak up. And, you know, I enjoyed stepping up. But the community that we built around the AHPN for me was the most significant thing. You know, the people who were there, who contributed, the people who started, really had a good vision. And that really helped at that time when we needed this organization. What has happened since is a whole other issue that I would not necessarily want to get into, but I felt that as a national organization, we didn’t transition well from focusing on HIV to integrating other health issues that we could have dealt with. We needed to transition, but because of lack of funding, and lack of a proper strategy, the organization didn’t transition well, even though it still exists in some form, even up to now. So that was the AHPN. Christian Aid: I got into Christian Aid completely by fluke. I was working for an organization called Partners in Evaluation.

And at the time, I think it was mid 2000, Partners in Evaluation decided that they didn’t want to have two different offices. They had one in London and one in Edinburgh. They decided they wanted to shut the London one down and just keep the one in Edinburgh. It was a collection of consultants. And we used to work on different social issues related to social justice. We got a Sure Start contract at some point. Sure Start was about schools and providing services to vulnerable children in schools and stuff. It was a huge campaign in England. But we did a number of things and we were a small group. We were about seven, and the people who started it are still friends of mine. And we’re still really, really incredible friends. They knew I couldn’t move to Edinburgh because first of all, I don’t like the cold. So I said, no, I’m staying in London. So I had to find a job.

And basically, on my last day at Partners in Evaluation, I was walking down the market in Waterloo and I bumped into somebody I had met in parliament, when we were again advocating on HIV issues. I told them that, you know, I was looking for a job, and then they told me that they were looking for somebody to join their HIV team at Christian Aid. Would you be interested? I’m like, yes, and I sent them my CV. I was interviewed and the rest is history. I joined what I felt was one of the strongest teams at Christian Aid at the time, because HIV was a priority issue at that particular time. The HIV team was quite significant. We were doing a lot of work because we had a lot of partners in different parts of the world, especially where HIV was starting to be of high prevalence. And those countries were mostly located in Africa. I was very intrigued. This was my first sort of stint in the international development world. I knew very little about the world of international development. Even though I felt that it was ironic, because most international development work actually happens on the African continent. It was almost like learning a different language. It was so different from what I had experienced before, although the issues were the same. It was just about how you articulated them, how the different issues connect. But once again, in an organization like Christian Aid, at the time, I was the first openly HIV positive person. Christian Aid is in Waterloo had about maybe 300 to 400 staff working there. And it’s the main office for Christian Aid. And one of my roles was to train every staff member on HIV. It was mandatory training for every new staff member at the time and old ones who wanted to retrain on HIV. But also one of the specific things that I added to that training was the treatment aspect, HIV treatments, and how they would work in the body, how they would impact people’s lives and all of that. And at every training, at the end, I would hand out an evaluation form. Nearly 90% of the people would say, the HIV treatment was the most interesting aspect. And I thought, yes. So I felt like that was something small that I contributed and where I had an impact. And what was actually quite interesting is that the head of the team was a doctor. But I was an activist, a person affected by HIV and explaining to people how that worked. And I think people really appreciated that. So I felt that was, you know, the thing that I was really proud of.

And then I transitioned from Christian Aid to work for the Stephen Lewis Foundation.  It’s been ten years now since I started working for the Stephen Lewis Foundation. And also that work came, through, in a very roundabout way. It was through networking that I met someone I knew who used to work for the Stephen Lewis Foundation. I didn’t know they were working for them. And when I talked about wanting to do consultancy work, they said, ‘oh, I’ve been working for this organisation, but I don’t want to travel anymore. I want to do different things. I can recommend you if you send me your CV’. I sent my CV, I was interviewed, and hired.

And for me, the Stephen Lewis Foundation has been an amazing organisation to work for. First of all, I admired Stephen Lewis from afar because he had served as a UN envoy on HIV in Africa for about ten years before establishing his foundation. He was incredibly vocal on issues around, you know, how HIV impacted African women. And through that, through his learning, the way he set up his organisation was phenomenal. There was an international Aids conference in 2006 I think in Toronto Canada. And he gave the closing speech. Wow. He was amazing! The words he used, the way he put things. And I was like, wow. By that time, I didn’t know him. But what he said and how he said it stayed with me. So, I admired him from afar. But to be hired by his organisation and to meet him in person and to have his book signed and given to me was just like, wow. So that blew my mind already. From the very beginning, once I started to work for the organisation, I was impressed by the way that the Stephen Lewis Foundation works. They focus on community-led organisations, very small organisations that probably couldn’t access a lot of funding. And then they would support them in actually accessing that funding. These community organisations are usually led by women. And they do a lot of significant work in the community, sometimes the work goes unnoticed, yet its women most affected by HIV. Mostly in southern Africa and eastern Africa, where HIV was predominantly affecting women in those regions. They [the Stephen Lewis Foundation] only have one office in Toronto. They have no offices anywhere else. Just really so that the money that they get goes to the organisations that they support.

And they fund the organisations consistently from one year to the next. Most of the organisations have been funded for more than ten years consistently by the Stephen Lewis Foundation (SLF).

So the model and the way that they work and having us, a group of consultants, as field or community representatives, all from different African and Caribbean countries, is all very impressive. And we visit the different partners in the different countries at least once a year to catch up to, you know, to see what’s going on, but mostly in a supportive way to help strengthen the organisations, to know where to focus the financial support, and all of those different things. So they fund fees for orphans and vulnerable children. They fund HIV positive support groups for women. Mostly, they fund social enterprises, fund grandmothers who are left with grandchildren but have no income. They also support a huge grandmothers’ project. The foundation (SLF) is unique. I love working for them because of the way they work, but also the work that I do for them combines three things that I really love. I love doing HIV work. It’s become a passion for me, especially as I’m affected, I can speak passionately about it and how my life has turned around. Secondly, because of their focus on Africa, that for me is bonus. I’ve travelled to many different African countries. I love Africa. It is my homeland. I learn, I feel like I learn more than I give. The third, I love to travel. So what’s not to love? I feel, and I tell them (SLF) that I have a dream job. But of course life has evolved. You know, things before the covid pandemic were different, and things after the pandemic are still evolving, and lots of changes have happened. At the same time there are also lots of opportunities. But I still love to do the work that I do for SLF even though, I am travelling less frequently.

Nikos: Have you been involved in international Aids conferences? Perhaps already from Durban, 2000 or later on? If so, how significant has this been for you?

 

Winnie: I was very much involved in conferences, mostly as a participant. I would go, I would attend, I would listen, I would network. And I did a lot of learning and a lot of connecting with different people, individuals, different groups. For me, it was really when I arrived in the UK. Let me just back up a bit. When I arrived in the UK in 1996, I didn’t know anything about how the UK worked. I never thought I would live in the UK even though this is where I was born. It wasn’t something that I aspired to. So I came [to the UK] from Uganda to recuperate due to ill health. I had been ill for the better part of the two years before arriving in the UK. And then, through accessing the support group, I met somebody who asked me, ‘lets go to these sessions, to learn about HIV treatment’, highly antiretroviral treatment (HAART), the stuff that works. It had become accessible in the UK for a couple of years or so – mid 1990s. People living with HIV who were accessing it were reporting how their lives had been turned around. And so I began to access HIV treatment. The treatment sessions that were being facilitated by regular HIV positive people who had learned about treatment through their own research. And it was fascinating. So, I learned how the UK works and I made friends through those networks. This group became the AIDS Treatment Project that later evolved into HIV i-Base, led by a good friend Simon Collins. I went on to work for HIV i-Base to train people on treatment and learning about HIV treatments and how they work in people’s bodies, and how they continue to transform lives. HIV treatment literacy is something that I have gravitated to ever since. I learnt a lot and managed my own treatment incredibly well because I knew what was happening, and I informed myself. However, that kind of information was not, how can I put this, well-funded. And so, there’s not a lot of HIV treatment literacy groups around now. Many people living with HIV, I don’t think are being educated on new HIV treatments. Sometimes, I hear some patients saying, ‘my treatment works, my doctor does this and that’s fine. I don’t need to know’. But when you know, it is so eye-opening and it’s so amazing how it can actually make you feel like you’re really an informed patient and an advocate for yourself. You ask the right questions, and you feel involved in your own health care. So for me that is really important.

I still admire the Treatment Action Campaign in South Africa and how they went about educating people living with HIV, many of whom had never been in school. They educated each other about their treatment and how that works. I hope one of these days we get to see a documentary or something about how that happened, because it’s such an important story. And for me, I always wanted to learn from projects like that and to be able to get that information over here in the UK.

Nikos: So, were you in contact with the Treatment Action Campaign when you worked with Christian Aid?

Winnie: Through interactions at conferences, through the Durban conference in 2000. I learned a lot about what TAC [Treatment Action Campaign] was doing. The influence that they had in making sure people were able to access treatment. (Since working for SLF, I actually got an opportunity to meet some of the staff, hear about and see some of the work that they do. I did a monitoring & assessment visit with them, since SLF funds them. It was a privilege to engage the organisation in this capacity). There was so much to learn.

In terms of access to treatment, as HIV activists, we were mostly advocating from different points of view depending on where we are residing. For instance, in the UK, we had to make sure that people who were asylum seekers, but were HIV positive, could access treatment. Some of the advocacy that the AHPN was involved with was the HIV policy as it applied to people living with HIV with uncertain or no legal status in England. In a nutshell – the policy stated that people living with HIV who had been in England for more than six months, and were accessing treatment, couldn’t be deported as they had to be able to stay in England to have access & to take their treatments. And if people didn’t have a definite [legal] status in England, they could stay on their treatment until their status was sorted out. It was deemed inhumane to deport people living with HIV who would otherwise have no access to life saving treatment in the countries they were deported to. So, we were able to influence and help put those kinds of policies in place to support already vulnerable HIV positive people.

Nikos: Absolutely. So, if I may also ask about global influences, are there other groups in Africa, such as TASO in Uganda or Kenya, or any other groups that you would like to mention as influences for you?

Winnie: TASO, I am actually aware of – it is the Aids support organisation which was started in Uganda, which is my ancestral home. I’m very proud of the lady who started it. I went out of my way to make sure she was part of the book that my co-authors and I  put together, Our Stories Told By Us.  And now I can’t even think of the name. Please let me look at the book and find her name. Uh, that’s aging for you. You can’t remember stuff off the tip of your tongue!…Noreen Kaleeba, just remembered, without looking at the book. I love Noreen. I’ve been in contact with her over the years. I remember inviting her to speak, to inspire members of an organisation I helped to start in Uganda. She was the main speaker at the tenth anniversary of Bridging A Gap Community Initiative (BAGCI), an organisation I co-founded with community members, in the village where my parents built a home. BAGCI started as a breakfast centre, where vulnerable kids from an informal settlement in the village come to have porridge. Porridge has a lot of protein and stuff. So, they come and they have porridge and perhaps sometimes something to eat before they go to school. This is something that I learned through my work at Christian Aid, through my work with the Stephen Lewis Foundation, through my work on HIV. Generally, you know, breakfast is important. There are a lot of people who can’t afford to have breakfast. And there are a lot of orphans and vulnerable children who were suffering. I had friends in the village who I knew had a little extra income. I invited about 20 to 30 men and women to my family home, on one of my trips to visit family. And I basically said, we have to do something to support vulnerable people in this village. We don’t need a lot of money but we cannot wait for funding from Western countries. We have to do the work ourselves. After a lot of talking, we met with the head of the informal settlement in the area and told him what we wanted to do. And his ideas revolved around school for children and enough food for them. He was seeing children dropping out to school, not having enough to eat & being malnourished. I told him, ‘find us a room. We’ll rent it. We’ll buy the cups. We’ll buy the porridge. Ask the parents of the children to help us cook the porridge, and the rest we will do’. So about 40 children registered. Before they went to school they stopped by the breakfast centre to have porridge. This went on for many years now, it’s been 20 years since this project has been running. Almost 200 children are feed breakfast every morning. Together with community members we’ve built a community centre, three floors high. We’ve been feeding, treating kids, de-worming, focussing on feeding, health, education, building connections with health centres, making sure children get their vaccines. Building resilient  communities. Now that I’m talking about it, I want to write about it. It is very important because if I don’t do it, no one will. So that is my homework. I will have to write about that. But yes, I invited Noreen Kaleeba to talk to the BAGCI members about how she managed to start TASO, and her story, which has been published in a lot of different books, and just to speak to the community members. So, in that way, I knew about TASO because of her

But there are a lot of different influences. And there was a flurry of community organisations. I believe my exposure to the US, through studying at university and living there also helped. That exposure to race issues influenced me so much in terms of really appreciating my heritage, my ancestry and becoming more patriotic about it. I took it for granted until then, but I became more patriotic.

The other influence for me was growing up in Uganda and going to boarding schools. I went to boarding school since I was five in primary school, secondary school and university in America, so far from home. Boarding schools, made me very independent, and confident, I learnt a lot. Networking was the most useful skill, I picked up in the US. Even before it became a thing, people in the US used to network. I like to talk to people a lot and learn about them. I like to learn while I’m doing. I don’t want to sit and learn in school. I like to do and learn at the same time. And I feel that that’s a better way for me to learn, anyway as an individual.

In terms of learning, the other thing that, I feel I’ve evolved into is learning and leading without formal authority. I like to build connections. I don’t like to have power over people. I want to be able to introduce ideas and debate them, and work with like-minded people (informal leadership – influencing and inspiring others towards a common goal without relying on hierarchical position). Through that evolution, I’ve done things depending on what is going on at different stages of my life. So I say to myself, where am I now in my life? What am I doing? What is happening? HIV has been really significant in my life, because of how my life has been impacted. Through my journey with it, through my engaging with the HIV community, you know, which is so broad. But which is also so rich with information, with connections with different groups of people that I don’t feel that I would have engaged with if I didn’t work or wasn’t affected by HIV. So it’s been fascinating. It’s been enriching, really really enriching. It has been absolutely, amazing. Money could not buy the kind of learning that I’ve done, through the process of living with HIV, a condition which could have killed me a long time ago! The one thing that I would also like to talk about, which I don’t want to miss, and I know it was one of your questions, it’s about ZZUK.

Nikos: Yes.

Winnie: ZZUK is our group of five women, who actually put together the book – Our Stories Told By Us. And that is a good example of informal authority. So the group came about, through my learning experiences in Africa, where I am constantly talking to people in different positions in the communities, in organisations and government officials. I would often ask CEOs, ‘Do you have mentors? Do you have a group of friends you network with? Who is your support? And then I would sit back and think, I’m advising this person but what about me? I need to think about how I’m networking. You know, I’m creating the kind of support I need. So, through accessing the different support groups in the UK, I identified people with whom I felt we had values and other things I liked, in common. HIV activism is important to me so I felt I really needed African support in this area. The other thing was the love for African contemporary art and fashion. Fashion and also women’s issues, around how we support each other and grow as women, especially at the different stages of our lives, especially through menopause. So all of those ideas influenced how our group came together and we limited it to five [members]. Since then, every member of the group has had a lot of influence on how we have moved forward. We all have different roles we play. We tap into our strengths. I’m the ideas person. I come up with ideas. Angelina is the project manager. Charity: the art, the fashion. She’s very creative, incredibly creative. Memory, the finance and IT person. Rebecca will be the resource person. Rebecca will find anything that we need. She’s incredibly resourceful.

So in 2021, during the covid pandemic, we heard (mostly from the gay community) about how HIV first arrived in the UK and when it was identified. We (ZZUK) became involved individually in various commemorative events, commemorating 40 years since HIV arrived in the UK. I was involved in a documentary, which I think was shown on Sky TV platform. It was a documentary, highlighting how far we’ve come in terms of HIV. And I was asked by the journalists about what was happening in the African community around this particular commemoration. And I thought to myself, I don’t think anything is happening because, as migrant communities, these are not issues that we particularly focus on. I said that as migrant communities focus on, getting their lives together economically, staying legally in the country & getting their children in school. Surviving as a migrant, dealing with everything that comes with that can be very challenging. But because I work on HIV, because I am passionate about where we’ve come from in relation to HIV, where we are and as a person living with HIV, commemoration is important. I thought, oh my God, we have been doing all of this work in the African communities. Some of it has disappeared. There’s no trace, there’s no documentation, there’s nothing. But we’ve been here and we’ve contributed to the UK HIV response. And it is important for us to share this and to be acknowledged. We need to do something. So with this thought going around in my head for days, I decided to share it with the other ZZUK members. I knew that they would get it. Once I presented it, they responded, ‘great idea!’. How do we go about it? Where do we get all the information that’s not there? You know, such a big project. During this time, we could only speak on Zoom because it was the period of the covid lockdown. We couldn’t really meet in-person, especially as we were all deemed to be in the vulnerable category in relation to covid. To cut the long story short, we decided we were going to do 40 individual stories of people living with and affected by HIV, but also those working on HIV from other communities, like the LGBTQ communities as long as there was a connection to African communities. As a group, we have so many friends, colleagues [from all communities]. We decided on a diverse group of people (representative of the HIV community) to focus on uplifting experiences, resilience and contribution of African communities to the HIV response.

So we had everybody we identified write their own story. We had to raise money to be able to put the book together. We contacted Positive East, through the CEO Mark Santos and he loved the idea. I’ll support you, he said. Positive East, will hold the finances for you. We raised more money than we anticipated and we got the book done. It was an amazing experience and achievement. The book elevated us as leaders in our communities, lateral leadership, which I love. Because leadership comes in so many different forms. Many of us don’t think of ourselves as leaders but we are.

Nikos: Let me please ask about leadership, and faith leaders in particular. If I remember correctly, you have worked on programs with faith leaders and HIV. I was wondering whether you would like to elaborate on this experience.

Winnie: Faith leaders are a significant part of the Black communities. If I may start by saying that, a lot of African people find solace in their religion, whatever religion that might be. Even though in the beginning of the HIV epidemic, many people living with HIV who were going to churches got a message of not being wanted in the churches. Let’s be truthful, there was a lot of rejection in places where we thought we could seek solace. It was important to work with faith leaders as the HIV epidemic progressed, to be able to challenge the negative views towards HIV, to support people with their faith as many still wanted to be part of the church community. So we had to work with faith leaders because they occupy an important space of leadership in African communities. We needed to work with leaders who have influence to be able to get the message of HIV prevention, treatment, care and to get the communities educated about, all of the different aspects in order to embrace people who are living with HIV, and not to stigmatize us. You know what I forget sometimes, especially because I live as an openly HIV positive woman, is that HIV is still quite a stigmatizing condition. And there are many people who don’t want to talk about their HIV because of that. The stigma is still there, manifesting itself in different ways. Some of the HIV stigma is very subtle, some not so subtle. But the stigma is still one of those challenging things that we have to work on constantly with individuals, with organisations, with different people. A lot of the organisations we’ve been working with have evolved as the HIV epidemic itself has evolved.  

But perhaps it is also important to talk about the challenges of being an HIV activist. The struggle around being an active, and many of us didn’t set out to be activists. We just found ourselves in these positions. You know that struggle is constant. It’s every day. It’s manic. Dealing with your own individual experience of HIV is never easy, what is easy though is to get consumed with activism and forgetting to look after yourself. You have to look after yourself. But you also feel like you have to do the HIV work because you feel it’s important. So, between that, you can easily get burnt out. HIV activism (mostly volunteer work) can be all consuming yet all of us have to earn a living and pay our bills. Yet earning a living can also be complex, HIV related stigma in the work place still happens to this day. Activism involves a lot of passion, emotion. It is challenging work and it is important to get support. I’ve come close to, you know, being burnt out and I had to step away from a lot of different formal leadership positions. I had to step away when I felt like I couldn’t cope anymore. But it took time, and it impacted my health in a negative way until I thought, oh, my God, I fought too hard to live, I can’t neglect myself. I feel that it’s important to talk about some of those things, because people have different perceptions of the kinds of life that activists lead. They’re not easy lives. But we have to continue to fight because HIV is still with us.

And it is important to continue to advocate for everyone to access the treatment that they need in order to live. We need to advocate for the services that we need. We’ve seen that these things can be taken away just like that, which is a shock to our systems, even though we know that we had to fight a lot for these sorts of things. And we know that the world has moved on, and HIV is no longer a priority in many countries. So it is really important to regroup as HIV activists to see how and who we can work with others to get us to where we need to get and that is where no one acquires HIV anymore. Hopefully this day comes soon.

Nikos: Can I ask you a very specific question about the program? Inspired from practices in East Africa, mainly in Kenya and Uganda, on voluntary counselling, there was an effort to use those ideas also for HIV work in the UK. I was wondering whether you were part of this effort.

Winnie: I have to confess, I wasn’t very much part of that effort, but voluntary counselling and testing really, really worked. There were some campaigns that were a bit controversial, especially around abstinence. But as they say, in whatever world you’re in, you have to pick your battles. So, on the whole, voluntary counselling and testing really worked in getting people to test and to deal with internal and external HIV related stigma. I mean, I still go to Africa, in my capacity as a field representative for the Stephen Lewis Foundation and I talk to those I engage if HIV is still an issue? Yes, it is. It’s mainly impacting young people, especially girls. There are a lot of young people who are involved now in campaigns of HIV testing, and talking to other young people, peer educators. Additionally, there is also PrEP, which, I’m happy to say, I’ve heard lots of young people talking about in Africa. But HIV is still circulating. And with what has happened with the funding freeze through the USAID funded programs, there’s a lot of nervousness and concern. There’s a lot of stress and confusion about what that means, whether people are going to continue to receive their treatment long term. In that confusion, the work that we’ve invested in for a very long time will suffer. And it’s very unfortunate, but we are not defeated. And we won’t be defeated. We will continue with the work in different forms. There are opportunities to do HIV work even better. To think of what we have learned and how we can incorporate it into better programs, into better collaborations. Who else can we work with who we haven’t worked with before? We have to get to where people cannot get HIV anymore. As for those of us living with HIV, we need to look after ourselves the best way we can as HIV treatments keep improving. Talking to each other, not discriminating against each other. Working with everyone in their capacity and listening. I still feel very hopeful. And I know that we’ll get through this very challenging period of time.

A lot of work has been done, but I feel that perhaps we might lose it because there’s so much that hasn’t been documented, especially in the Black communities. We need to get better at documenting things in the Black communities. We need to get better at working together for common goals. We need not be afraid as migrant communities. There’s a lot that we contribute wherever we are in the various countries we visit, acquire education and live. And it is important to work with each other.

Nikos: Thank you so, so much for our discussion, for your work. That’s really a source of inspiration.

Winnie: Thank you. I hope I’ve given you enough to work with.

Nikos: Absolutely. Absolutely.

Winnie: Is there anything you would like to add?

Winnie: Probably there is, but we might need another hour. And you don’t have it.

Nikos: Thank you so much. I hope I have not evoked difficult memories.

Winnie: Not today. Not today, Nikos.