Global History of HIV/AIDS Activism

Angelina Namiba 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: Thank you very much. Once again, if you would like to switch off the recorders at any point to say something more confidential, just let me know. So, if I may start by asking how you would like to present yourself in brief.

Angelina Namiba: Angelina Namiba. I’m a founder member of the 4M Network of Mentor Mothers living with HIV. And I’m a single mother, living with HIV for more than 30 years now.

Nikos: Building on your story from the book, Our Story Told By Us, you mentioned a number of key organizations in which you were involved, like Positively Women, and I was wondering about whether you would like to highlight some key moments of your involvement in those groups.

Angelina: Yeah. So I guess in terms of the involvement in the HIV sector, Positively Women was one of the first organizations I was involved in, although I got my support initially from an organisation called Body Positive. Because when I first got my diagnosis, a friend took me along to their place and I accessed peer support there. However, Positively Women was the organisation where I became really involved, as I decided to start volunteering after receiving the initial peer support. And then I got a job as one of the first two African Peer Support Services coordinators. Positively, Women was set up in 1987 by two women living with HIV who were drug-using women living with HIV, who felt that at the time, there wasn’t any specific support for women living with HIV. There were a lot of services for gay men because, obviously, the epidemic affected gay men a lot then. So, they had already set up services to support each other, but there weren’t any specific support services for women. So, the two women got together, wrote down handwritten flyers, and sent them around to clinics and hospitals because they knew there were women being diagnosed. But, you know, women were really not accessing services. So then, in 1989, Positively Women managed to get some funding to employ the first full-time paid workers.

And so then they started reaching out to women with HIV. By 1995, they were able to reach a lot of the white women being diagnosed at the time. But they realised that there were also African women being diagnosed, but there were not many who were accessing the service. And so they managed to put together two posts for African services coordinators. So, another colleague and I, who sadly passed away not long after we started working, were employed to specifically try and encourage and bring in and work with African women diagnosed with HIV. It became quite a special place. So that was my first paid role within HIV, and it became very important to me because working there felt like being with family. And I grew and learned and met other women living with HIV, and they mentored me to a point where I was able to be open about my status. That’s a very long story, but it was Positively Women that got me going and gave me the support and confidence that I needed to get to where I am today.

Nikos: Do you remember any specific moments in your involvement in HIV work?

Angelina: There are so many moments, but I think, maybe, I can mention two. The first one is something that still makes me do what I do. To this day, I can vividly remember one of the first women I supported, who had not been accessing any services but came to Positively Women. Very low, low self-confidence. You know, very fearful, very worried. We supported her to a point where, you know, we got her linked into services. And then later on, when she comes back, you can see her when she’s sitting, she sits up, she’s got makeup on, she’s happy, she’s living her life. Years later, I was working, and I used to be on the top floor, and there was no lift. And then I was at my desk, and I heard somebody walking upstairs. She was panting because she had come up all the way up the stairs, and she got to the door, I looked at her. I hadn’t seen her for many years. And then she said, ‘hello, Angelina’. I was passing here. I haven’t been here for a while. I was passing, but I just wanted to come up and say thank you very much for your support, because Positively Women gave me my life back. And then she left. She came all the way up the stairs to say that. And then she went, and I didn’t see her again. That is one moment.

The other moment is personally significant for me: when I started working at Positively Women, I was not open about my status. However, we had an editorial team that wrote a magazine, which was distributed to all the women who used the services. And so I used to write articles, and I remember the first article I wrote was by Angie, because nobody could recognise who I am, because I didn’t want anybody to know. The second article I wrote was by Angelina, so I’m still anonymous at this point. The third article I wrote was by Angelina Namiba, and by the fourth or fifth article, I was on the cover of the magazine. But that is one of the moments I remember how my journey changed, but because I felt very safe at Positively Women, I had a support network of women who’d been through it. And you knew even if I took this stage or this step, and if something goes wrong, I have all these women to support me. So those are some of the key moments.

And maybe the third one would be perhaps, many years later, after the government, the guidelines had changed to encourage all women who are going through the antenatal system, all women to be tested for when they’re testing for all the other tests, to include HIV, so to be offered. And so, this was around 2000-2001. And then what happened then was a good thing, because it meant that women who had HIV, who may not have been picked up before, were identified. So then that meant there were more and more women identified during pregnancy. There were a lot of services by then for gay men, for families, for children. But there wasn’t specific support for women diagnosed during pregnancy, tailored support, or for women who were planning to start families after an HIV diagnosis. And so at Positively Women, we identified this gap and we set up the project From Pregnancy to Baby and Beyond. This is where we trained mentor mothers to support their peers going through the pregnancy journey, and did workshops with parents to be pregnant women, or we did some with men as well. And so in a way, this was a really key moment for me because it was the beginning of where the 4M Network was born.

Nikos: What about the African HIV Policy Network?

Angelina: Ah so, the African HIV Policy Network, that’s AHPN. And it’s now called the African Health Policy Network. Although it then focused mainly on HIV prevention and worked with they did policy work, but they also had a program within it called NAHIP, which was a National HIV Prevention program which worked with different organisations, working with African communities around prevention work. I went to work there. I worked there for about I think two or three years as program lead for the National HIV Prevention program. So that was quite a change, it was slightly a change from what I was doing, but it was a good learning process, and I only applied for that job because I’d gone on a leadership training programme for African people living with HIV, which was actually organised by FFena, a project within the AHPN. I went on that leadership. It. was a weekend leadership programme for African people living with HIV. And when I left, we had to set some goals, and I said I was going to make a change in my life. And so I applied. When I saw the job, I applied and I got it, and it was interesting working there, but challenging. But because we were working on that project, we were working with about 16 African community organisations across the UK. There were lots, lots of good moments there. But one of the things I’m proud of was I was part of the team that developed the Faith Communities toolkit for Muslim leaders. They had already developed one for Christian faith leaders. So I was part of the team that developed that in partnership with the Department of Health and Muslim Faith Leaders, and also part of the team that rolled out The Knowledge, the Will and the Power, which was a prevention tool for African communities. But we enabled its rollout to the different community organisations who did prevention work with and in African communities. And I was part of the team. And that was approximately in the 2000s, or was it later? When I went into post, they had already worked on it with the Sigma research. They had developed this tool. And so when I came in post, it was at the stage where I needed to be rolled out. So I was only a small part of it.

Nikos: But it’s still very important to diversify the faith communities you’re working with. So if I may ask about this, Angelina, did you build on ideas also on ideas from sub-Saharan Africa or the global South in your engagement with Positively Women and AHPN?

Angelina: More in AHPN, because the communities that we work with were migrants from African countries, and so they were working with African communities, and inevitably they would work with people who had migrated from different countries. I wouldn’t like calling it sub-Saharan. I like calling it countries south of the Sahara, or the global majority south. That’s a better and better, more inclusive term. So inevitably, because I think there’s a thing about how oftentimes countries in the North think that it has to be a North South learning, but actually there’s a lot of learning we can get from African countries South to North, because African countries have been affected by HIV for many years, and they’ve had lots of different initiatives in place to work around prevention, around testing. And so there are a lot of things that we can learn from the African countries. And this is not necessarily specifically HIV related, but there’s a really great initiative called the Friendship Benches, which was set up. It’s an initiative set up by Dixon Chibanda in Zimbabwe. What he started off doing was training grandmothers to provide mental health support for people who are going through a difficult time. So all you have is the benches that are built outside of hospitals and in community areas, and the grandmother will sit on that bench. And anybody who walks by who has, you know, issues or challenges, anxieties, mental health issues can just sit with the grandmother and the grandmother will talk, talk to them and give them advice and support.

Nikos: Very interesting.

Angelina: This program [Friendship Benches] is now being introduced in areas of the UK, and in America. It’s an amazing project. So there’s a lot of learning to be done. It started off as training grandmothers, but now they’re training counsellors too. Because grandmothers are in the community, they have a lot of time, and they have a lot of skills. So this was a way to utilise that resource.

Nikos: Angelina, in terms of faith leaders and their training, are there ideas from countries south of the Sahara that you found inspirational?

Angelina: Yes, there is actually an organisation called Inerela+. It is an organisation of faith leaders who are all living with HIV. And so a lot of them are well, they are very open about their status. Because faith leaders have a huge impact. The congregation looks up to them. And so faith leaders are in a good position to actually share and preach the right message about HIV, whether it’s around prevention, testing or care. And so, where faith leaders are trained to preach the right message about HIV and treatment, and they talk to their congregation. It’s incredibly important that we don’t isolate faith leaders, because some people will say, ‘ Oh, you know, because, of course, we know there are certain faith communities that are preaching the wrong message.’ We know of people who’ve been told [by faith leaders], ‘don’t take your medication, you’ve been healed, etc.’. And so part of those projects was around working together with faith and saying, ‘look, you’re the people who are respected within your community. How can we work together to make sure that you’re delivering the right message?’ And so, there are many faith leaders within the UK and on the African continent who are doing amazing work. But it’s important that they are working together with HIV support organisations, with government, with the stakeholders that matter, because you can’t isolate people. I have worked with women who came and said, ‘oh, well, my pastor told me not to take medication. I’ve been healed.’ So I’ve over the years, I’ve had to find a way to be able to communicate with them because the immediate reaction for anybody would be like, ‘no, no, no, don’t listen to that, pastor. He’s wrong’. But you can’t say that to somebody who, particularly if you think about a lot of African communities, many of them have migrated on their own. They’ve left their families back home. So when they get here, they go to faith communities, and that becomes their family. That’s where they socialise. That’s who supports them. So I can’t say to somebody, ‘don’t go to church,’ because that’s their life. So we found a way.

And I remember years ago, the Mildmay Hospital developed a really lovely leaflet. And on it, there was a message around people who are saying, ‘Oh, I can’t take my medication’. A message saying, ‘If you want to go to the market to buy some groceries, do you stand at the bus stop and wait for God to deliver you to the market, or do you take the bus?’ You have to think about it like that. You know, God works through the doctors, so you have to speak their language. And also God helps those who help themselves. So you don’t have to choose between God or the medication. You have to work with the doctors and work with the medication to be well. So we had to find a way to talk to people. You don’t need to become a pastor yourself, but you have to recognise that the faith is important. So I’m not going to tell you not to follow your faith, but I will speak to you in a language that you can understand. For me, what I say to them is, if you break your leg or if you have a headache, don’t you take an aspirin or whatever, a painkiller? So you have HIV, take your medication

Nikos: It is so great to learn from and about your experience! And if I may ask, about your experience working with Muslim faith leaders? So how did you do that? Did you work with Muslim faith leaders in the UK, or also from other countries?

Angelina: It was mainly in the UK because I was then working with the African HIV Policy Network, and so we worked with faith leaders in the in mainly in London but in the UK. So, we got together with them and developed the Muslim Faith toolkit. We worked with them. It was here, but a lot of them were from African communities. So it was, I mean, it was good because what you need to do is just to find faith leaders who are decent and who preach the right word and who are open because that toolkit was going to be used. They were going to use it within mosques. So, we wanted to make sure that it is something they agreed with. It is something they could work with. And so, from the beginning, we worked with faith leaders all the way through to development, including design, everything.

Nikos: Were the faith leaders receptive to your work?

Angelina: They were very receptive because I think it’s about their meaningful involvement. We said, ‘how can we work together?’ I think when you say working together and working together meaningfully, then people are receptive. At the end of the day, as faith leaders, whether they’re Muslims, whether they’re Christians, whether they’re Jews, part of what their role is to support people, to live well, to care for people. And so this is something that is going to enable them to care for people living with HIV who are inevitably part of their congregation. Yes, there were those we worked with who were very receptive. And they were involved throughout, right up to the launch of the Toolkit, because then they would take it and use it in their mosque.

Nikos: What about also arts like theatre, storytelling or music from Africa in your activities in Positively Women?

Angelina: Oh, yes. There was a series of videos which are around testing and prevention, but I’ve forgotten what they are called. What you have to remember is Positively Women was not an African organisation. It was an organization that worked with women living with HIV. And in the beginning, there were a few African women accessing it. And then many more people started to access it over the years. So it’s not necessarily like an African organisation. I couldn’t really say that we were using arts and theatre from Africa. Um, just trying to think. It was more likely to be more with the. But again, I think you need to remember that it’s African communities here, not necessarily in Africa.

Nikos: Angelina, may I ask you about ZZUK, please?

Angelina: So ZZUK stands for Africa United. So Zambia, Zimbabwe Kenya Uganda UK. So basically, it’s just the countries that the five of us come from. And we got together some years ago. We’ve been friends for a long time. Our friendship just carried on and grew over the years, and in the process because we all like African-inspired things. So we’d get together and make artefacts and sell them. Charity would design them and would sell them, take them to markets and stuff. But the main thing was staying together as a group. We would meet at each other’s houses, and we’d take turns hosting each other. We’d have a meal and would rotate every month. And then once a year, we’d go away on a retreat together. And then just before COVID came, I was very ill. So I was in the hospital for about half a year. And when I came out, there was a lockdown. And so every Saturday, we’d do a Zoom call just to check in with each other, and we did that throughout the lockdown. And I think at one point, this is probably going into the next question, at one point, when Winnie was interviewed for World Aids Day, and the interviewer said to her, ‘So what about African communities? What’s going on there?’, she came back to us and said, guys, ‘what they said to me, you know, we should write a book’, and this is how the Our Stories Told By Us book was born. But the other thing was during the lockdown, because I read a lot of novels, I kind of encouraged them, we all got together and said, ‘let’s start a book club’. And so we’d read novels once a month and we’d all rotate. Everybody would choose a novel, and we would review it at the end of every month. And then, sometimes, I would reach out to the authors. But all the novels we are reading were either African, inspired by African authors, or set in Africa. The book club is still going strong to this day. And so sometimes I would reach out to the authors and we would have a Zoom call with the authors. When we’re having the review, we would talk to them and talk us. They’ll join the review. So that is like that. That has kept us going to this day. It’s a little less frequent now, but we used to meet every week and support each other in that way.

However, we’ve known each other for, I think, more than 20 years or longer for others, but we’ve known each other differently. So I think Winnie and Memory met earlier on. Rebecca and I met earlier on at Positively Women, and then Charity came later to access Positively Women. So then we just got together. We understand each other. We all have different strengths within the team. When we go away on a retreat, I don’t like sharing rooms, so I’ll sleep. I’ll have my own room. I don’t care what the others do. So I don’t speak to anybody before 11:00. But we all understand each other. We have our different strengths. And that the fact that we have different strengths, I think, is also what made us able to produce the book. Winnie’s the ideas woman. Rebecca is a resourceful one. Memory is the money woman and she does all the spreadsheets. And Charity is artistic one. And I am the one they call bossy, but actually, I prefer project manager.

Nikos: You also mentioned in Our Stories Told By Us, Angelina, the term Ubuntu.

Angelina: Yeah.

Nikos: So has this been a key concept for you and the groups in which you have been involved?

Angelina: So it’s a South African term. The full term is Ubuntu kumntu ka bantu. It just means we are who we are because of others. You know, none of us exists in a vacuum. And it embodies all the concepts of humanity, and just understanding that you cannot exist by yourself, and you need other people around you, and you need to build a community around you as well. It has been the same with ZZUK as well. We support each other with many organisations, such as Positively UK and Positively Women, as well as the 4M Network. We use this term to refer to women who access our services and our members, because it’s a family, and we all coexist together. So, for instance, at 4M Network, although Rebecca, our colleague Longret and I lead the organisation, we also have a steering group of healthcare providers who guide us. However, the women with whom we work, we always say we work with them, not for them.

So any of the projects that we do are informed by the women. And when we apply for funding to do a project. We always ask them. We’ve already asked the women, ‘what would you like us to do’. So anything that we do is with the women for the women. So Ubuntu is really important. I even have it tattooed on my arm. I mean, I love my own space and I love to do my things, and I love to go away by myself. My phone is always on silent because I like my space, and don’t need to be immediately available to whoever contacts me, for my own peace and mental well-being. But I am very aware of the fact that I couldn’t do what I do on my own.

Nikos: And is this an idea coming from South Africa? Ubuntu? Is it religious-related or?

Angelina: No, it’s a concept. It originated from South Africa. But it’s a concept that exists in most, if not all, African communities. Because if I think about I’m from Kenya, and up to if I think about up to today in Kenya, we have something called Harambee (it means – pulling together). Harambee means let us pull together. I remember even when I went to school, I went to a boarding school and you had to pay fees, even though it wasn’t a huge amount like what they pay here. However, some pupils in my school, as well as their parents, could not afford the fees. Therefore, the village would come together and raise funds to send their children to school. And it still happens today when somebody is getting married, they have a Harambee to raise funds for the wedding. When somebody dies, they have a Harambee gathering. When they’re building a school, they have a Harambee. Harambee is like something that has been happening in Kenya for years, spanning generations. Even if you’re that poor and you need things to happen, they will happen. Because when you say ‘I’m calling a Harambee to send my child to school’, people will donate. So Harambee is really important in Kenya.

And even when I was growing up. Our parents didn’t always look after us much because everybody else looked after us. If I were out in the streets with my friends and I misbehaved, somebody, an adult, could tell me off. And it was fine. So my mother didn’t have to worry too much. Because even if I did something wrong, somebody out there, even if they were not a relative, was still looking out for me. And they would tell me off.

So we grew up like that, being brought up by people around us. And I think we’ve carried it here as well, because my daughter, I’m a single parent, and I had to go back to work soon after I had her. But I always say that I could not have brought her up without the help of my friends, particularly someone like Rebecca. Rebecca is the godmother of my daughter, and her children are like my own. Um, so we all, you know, in terms of babysitting, in terms of bringing them up. In fact, I will send you a clip of a podcast featuring my daughter and Rebecca’s son. They were interviewed for a podcast for Positively UK, talking about growing up with mothers living with HIV, and the way the two of them talk is like I’m his mum and she is her mum. At home, when you have children, it’s very easy to find people to look after them, to help you. Here, you have to pay a childminder exactly more than what you earn. So it is your friends. And because we don’t have all our family here, it is my friends who help me to bring her up.

Nikos: May I also ask you about the meaning and significance of the concept “Umoja”?

Angelina: This is from the Kiswahili language. Umoja means togetherness. There is a retreat called Umoja where some of us, African women here in the UK, go away once a year. It is a retreat that is organised by one of the younger members [of the community] and we go and just to relax and do selfcare and fun activities. But we call it Umoja because it’s about us coming together and we do lots of activities. We do, masterclasses. For instance, we have therapies. But one day, we have a Master Cooking masterclass because we come from different African countries, and each of us teaches everyone else how to make a meal from our country. So Umoja means togetherness, which is again Ubuntu.

Nikos: Have organisations from various parts of the world, like ACT UP or the Treatment Action Campaign in South Africa been important for you?

Angelina: Very important. So I’m actually a member of ACT UP London. I always quote it because, if it wasn’t for those gay activists in ACT UP who fought and put their lives on the line for us to get treatment, we wouldn’t be here today. So I really respect their activism and take a lot of inspiration from them as well.

About the Treatment Action Campaign (TAC), it is another source of inspiration for me in terms of providing simplifying treatment information and making sure that people living with HIV have the right information, because not everybody can read a research paper. Not everybody can understand what goes on. And for me, that’s really important because also as part of my journey, I was also trained as an HIV treatment activist at HIV i-base, which works very closely together with TAC. Simon Collins is one of the founders, and he trained me and many others around HIV treatment advocacy. What they do, in brief, is that they take complicated scientific treatment information and put it into language and resources that a layman can understand, like what adherence is, what side effects are, and how treatment works. So all those things are important for people to know about treatment. They simplify it into language that you can understand. We did numerous treatment and research literacy sessions with the people, amongst other incredible work that they continue to do.

I still do that, I want to understand research. I learned a lot of things, including that there aren’t enough women involved in clinical trials. So, I learned about clinical trials, and I can do clinical trial literacy workshops for women. I’ve also been involved in clinical trials myself, for my own benefit, of course. But I also wanted to be able to explain what happens when you’re in a clinical trial. And this is why it’s important for women to be involved.

Because when I was working with Positively Women, which was a long time ago, I didn’t know much about TAC then. But I’ve since met people like Zackie Achmat who are, you know, very important in TAC. Yes. Yeah. In fact, Zackie Achmat is very interesting. He came to London one time to give a talk. And my daughter was young, a teen, 19, maybe just before teen, and I took her along to the talk, and I forgot about it. And then later on, when she had to do the exams to go to secondary school, I was taking her around to some schools and she did an exam. We were sitting on the train coming back to London and I said, ‘so how was it’? And she said, ‘Oh, in English, they asked us to write about somebody who inspires us’. And I said, ‘what did you write about’? And she said, ‘I wrote about Zackie Achmat’. I said, ‘Really?’ She said, ‘You thought I wasn’t listening, didn”t you’? Because what he had said on that talk, I remember, and which is probably what she remembered, was that in his early years, when treatment was not free in South Africa, even though he was well off and he needed to take treatment, he refused to take HIV medication until it was made free for everybody in South Africa. And I think she remembered that. And that’s what she wrote about in her paper.

So that’s one of the things I think is really important as well, because one of the things that African people, and people living with HIV in general, find very challenging is sharing their HIV status, which is why I’m open. I think it’s important for those of us who can do it safely to do it. It’s also one of the challenges that many people have: how do I tell my child I have HIV, or when do I tell them? So, I told my daughter very early on, which is why I was able to take her to that lecture. But years later, when she was about 15 or 16, I remember that Nigel Farage was talking about how people from African migrants were migrants coming to the UK to use the NHS, blah, blah, blah, blah. And one of my friends, Dan Glass, who is an ACT-UP activist in London, called me and said: ‘Have you heard what Nigel Farage said’? I said, ‘Yeah, I heard’. And he said, ‘Oh, I have a journalist who wants to do an interview with migrants from different regions, from Africa, from Europe, from Asia, who live in the UK, to show the real story and the true face of what migrants living with HIV look like, to kind of challenge what he [Farage] was saying. Will you do the interview’? I’m like, ‘Yeah’. And then I realised, oh, my daughter is about 15. She was a teenager by then, and she was at she did manage to get a place in boarding school after the 11th class. So, I rang her and I said, ‘Look, Dan wants me to do this interview’. And she said, ‘Oh, mum, just do it. You know, somebody’s got to do it’. And I said, ‘Yeah, but the journalist wants a picture and it’s going to be on the internet’. And she said ‘Mum, just do it’. And I said, ‘But if it goes on the internet, your friend, my friends might see me’. And she said ‘Mum, my friends all know you have HIV’. I’m like, ‘How do they know that?’ She said ‘I told them, because they come to our house, you cook for them, you do their hair, they sleep over. So if they don’t like the fact that you have HIV, then I don’t want them in my life’. I said, ‘Okay’, and I did the interview. But it’s a struggle for many parents to tell their children, because when do you tell them? And children are different, and carers have some children at nine, they are like sixteen-year-olds. Some children are sixteen, and they’re like five-year-olds. I’m glad I. I chose to tell her because I had told her when she was nine, which, I think, is part of why she was able to behave like that by the time she was a teenager.

Nikos: Speaking of international connections, Angelina, did you work with the International Community of Women with HIV and AIDS (ICW)?

Angelina: Yes. So I used to be on the board of ICW, which is the International Community of Women with HIV. I was there for a few years, but I am still connected with some of these women. We are part of a group called the Power Group (Positive Women Engaged in Research) It’s a group of women who are interested in research but then some members of ICW are also part of that. So, over the years, I was on the board of ICW, but I’ve been very lucky because over the years in my work, I’ve had the opportunity to work with activists and women living in different parts of Africa, but it’s also opened my eyes to some of the injustices that happen. For some women in some countries, because of criminalisation laws, it means that they can be criminalised simply for being who they want to be. So, I’m always aware of the privilege that I have, but I also learned a lot from the women, some of them through doing projects or working with them. I was on some of the WHO guidelines writing groups, but also one time in 2015 or 2016, the WHO (World Health Organization) commissioned the organisation Salamander Trust, which I was involved in, to lead on a survey with women living with HIV globally, so that the survey would then inform the sexual health and reproductive rights guidelines.

And, so, Salamander managed to conduct one of the largest surveys with women living with HIV across the globe. We managed to reach over 916 women via surveys and focus group discussions. So I got the opportunity to be on the  steering group of that survey. The results went on to inform the 2016 WHO Consolidated on the sexual and reproductive rights of women living with HIV.

Over the years, I’ve had the opportunity to work with so many international organisations. So I mentioned the ‘From Pregnancy Baby and Beyond’ project in  Positively Women. That was a pilot for one year, and then the funding finished, and then I left. That was funded by the MAC Aids fund. So I left, and that’s when I left and went to work at HIV I-base. And then a couple of years later, they managed to get funding to do the project [From Pregnancy Baby and Beyond] again. They tried to recruit, but they couldn’t get anybody. So, then, they contacted me, and that time I was ready to leave I-base because I’d done treatment training for a couple of years. So, I came back, and we did the pregnancy project again for two years, and then the funding finished. And so I had no job, so I had to leave. I left the organisation, I was unemployed.

So, then, I met up with Dr Alice Welbourn, who was working at the Salamander Trust, and we’ve done a project with her, where we were doing the pregnancy project with training mentor mothers to do filming and writing storyboards around how they support pregnant women living with HIV. So Alice says, ‘What is your dream? Because now I didn’t have a job’. And I said, ‘My dream would be to train a small pool of mentor mothers, kind of similar to what we’ve done at Positively UK. But I like us to do that in different areas of the UK, because it was a really good project’. And she said, ‘Well, we haven’t got any funding at Salamander Trust, but why don’t you and I sit together and see if we can write an application for a grant to do that?’ So, Alice and I sat together and we wrote an application to the Mac AIDS Fund, and they gave us funding for one year to do training for mentor mothers in eight regions of the UK. But we did it working with organisations there. For example, in Manchester, we worked with the George House Trust. So, they got the women together. We went and did the training for them. We did the same training in Leeds. We did this training in eight regions of the UK, including Brighton, Glasgow, Bournemouth, Bristol and Leicester, but always working with community organisations. We then adapted the training, we got more funding from Mac AIDS Fund again, and we adapted to the guidelines in Kenya for mentor mothers in Kenya and in Uganda.

So, I was just saying how I’ve been lucky to be able to work with different organizations. And again, we did the same thing. We worked with organisations on the ground. They got the women together, and we made sure we co-facilitated with some of the women there. So that was the whole point of the 4M Network is also around training mentor mothers to support peers, but also for their own personal development. So, we are constantly trying to make sure that the women we work with can do what they need to do. Then we also co-wrote a manual based on that training. It’s called ‘The Mentor Mother Trainers’ Guide’. So, it’s a training for guides, but it’s available on our website. And anybody, any organisation anywhere in the world can just take it, adapt it and train their mentor mothers. And it’s been translated into a couple of languages, at least a few years ago. An organisation in Sweden working with pregnant women living with HIV got in touch. So, they translated it. And a couple of my colleagues and I went over to Sweden, and we delivered the training of trainers for them. We just did one training. And since then, they’ve used the training to train two pools of women. When we left, that was enough because they translated the material I gave them. We gave them what they needed. They’ve also done the training in the US and other places. People can simply take the manual and do what they need to do with it. Because we knew that we could never guarantee funding every year, we wanted that training to be sustainable. So, we said, let’s develop the manual. At least, if we never get funding again, the manual is available for anyone who needs it.

Nikos: Angelina, if I may ask a difficult question, and please do feel free to ignore it. Were there any moments where you experienced prejudice in HIV work because of coming from Africa, because of being a woman or any other reason?

Angelina: I don’t know. I’m trying to think. I don’t know. Maybe it’s because of my attitude. I don’t know, and maybe it’s because of the support I’ve had. I mean, I think it’s clear that, over the years, women have had to fight more to be heard. Because even I remember when I first started working in the HIV sector, we would sometimes be called to do a talk or whatever, and you could see that it was very much tokenism just to tick a box. But over the years, with organisations like ICW, one of their mantras is ‘nothing about nothing about us without us’. So, over the years, lots of other organisations developed this attitude: if you’re going to involve women with HIV, then we need meaningful involvement. And so that has kind of changed over the years because now at least we’re more involved where it matters. Even if we look at research, women are not just participants. Women living with HIV have been calling for the involvement of women in clinical trials and other studies from the beginning, throughout the entire life cycle. So right from when you’re deciding the research question, when you’re making the application for ethics, when you’re putting the study team together, when you’re doing, you know, involving peer researchers, when you’re writing up papers, making sure that women are named on those papers, and when you’re doing the dissemination. So, I think the situation has changed much more now. We even wrote a paper called From presumptive exclusion to meaningful involvement of women living with HIV, including stakeholder views.

So, now there’s much more meaningful engagement. If you look at things like the Share Collaborative, they work with communities in East London. I think it’s a great example of meaningful engagement, real, meaningful engagement with communities that are affected, with whom they are working, and about whom they are working. We at 4M Network also wrote terms of engagement for collaborating  researchers who want to be involved with us. I can send you that as well.

I think in terms of work, I’ve been personally very lucky to work with clinicians and researchers like a network formerly known as SWIFT (focused on women’s research), now a Special Interest Group within the BHIVA (The British HIV Organisation), which is now part of Viva. They really want to make sure that women are equally represented. A lot of them are women clinicians, but there are also lots of men clinicians. I don’t know, maybe I’ve just been lucky. I’m sure many people experience stigma, but I think I’ve just been lucky to work with the right people, if that makes sense. But I know that all those inequalities exist today, and many people talk about them, so others probably may be able to speak better to that point.

Nikos: Well, thank you so much, Angelina. I don’t have any more questions, but is there anything that you have not discussed and you would like to highlight, perhaps?

Angelina: So here I am. I’m from Kenya. I spent my formative years in Kenya. So a lot of my thought processes, a lot of the things that I think about [come from Kenya], even though I went to university in Manchester. I was already an adult by then. So, I think a lot of the way we think and do things has its roots back home in Africa.

I think maybe one more thing I would like to stress is that it’s important that we have leadership of African people that is visible, which is part of also why we wrote the book. To illustrate that African people possess great strength, we have so much to offer. We have so much resilience. We have so much expertise. We have so much lived experience. We have a lot to offer. And we should not just be seen as statistics or as recipients of services. There’s a lot more that we can offer. We’re skilled. Many of us are skilled. So, it’s important to recognise that that’s a resource that is here in terms of whether it’s the prevention campaigns or the testing campaigns or treatment campaigns. It’s essential for African communities to be visible.

Just a quick example, I have a friend, a very close friend, who trained as a midwife in Kenya. She came to the UK, but the thing is, she trained and worked as a midwife there. They didn’t have a lot of resources, but they did amazing work. So, when she came here, it was very, very easy for her, because she had everything that she needed. She’s moved up the ranks. But it’s just to show the resilience and the expertise and the skill that we have, can do so much with so few resources. So, it’s about recognising that. We’re very adaptable.

Nikos: Thank you very much indeed, Angelina. Let me wish you all the best for your work .

Angelina: Thank you so much. And it’s lovely to meet you in person.

Nikos: Lovely to meet you too!