Global History of HIV/AIDS Activism

Rebecca Mbewe 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: Let me start by asking how you would like me to address you, please.

Rebecca Mbewe: I’m happy for you to call me Rebecca. I’m not, with all the respect, a fan of the pronouns, but I’ll tell you anyway. I’m She/Her.

Nikos: And if you would like to describe briefly yourself, how you would like me to present you?

Rebecca: Okay. I’m a black African heterosexual female, originally born in Zambia. Migrated to the UK in 1996 or 95. So long ago I forgot, which makes me wonder how old I am now. I am 57. My day job is a researcher with the Queen Mary University. I have lived experience of HIV for 28 years. I’ve been living with HIV for 28 years. I’m on treatment for that. Everything is going very well. I have two grown-up children, so one is 34, and the other is 24.

Nikos: Rebecca, I have also read your interview as published in your book Our Stories Told by Us. You mentioned some key organisations, including Positively Women and Positively UK, in which you have been involved. Would you like to elaborate on some key moments of your participation?

Rebecca: Sure. I’ll start with Positively Women. Positively Women have now rebranded to become UK Positively. So it’s one and the same organisation. They were the first peer support organisation that I was referred to when I got my diagnosis way back in 1996. And it was at that point that it was primarily focused on women. So that’s where we got our peer support from. This is where I met other women living with HIV. The other people who supported me through my diagnosis and all of that kind of thing. That was my sort of introduction to the HIV community, which means it holds a very special place in my heart because I think without that organisation, maybe my trajectory would have been very different. But because my first encounter was with a group of women who had a very positive outlook on life, that is what shaped how I then went on to develop my understanding around HIV, my management of HIV. So I’m very grateful to them as an organisation, and as much as I can, I always go back and volunteer, or I work. My work history within HIV actually started in Positively UK. So, before I was diagnosed, I used to work for a legal company. I was in the corporate sector, and for a number of years, I did that. I lived two lives. I went to work, came back, and then in the evening, I was this woman who was living with HIV. I would access my support through Positively Women. I used to do things like being the service user rep.

Then I thought, I’m tired of the corporate sector. I went back to university, and when I was studying psychology, I had a bit of time. And then I started to volunteer with Positively UK, helping them with their women’s support group. And then when a job came up, I applied, and I got the job as a caseworker, and that’s how I then got involved in supporting other women living with HIV. And I haven’t looked back since. I worked with them for about five to six years. Then I left because it depended on the funding. Funding then became quite tight. So then I got another job with another HIV organisation. Over the years, I’ve sort of volunteered on different projects that Positively Women did. And my last involvement with them was sort of co-leading on a project called ‘The GROWS Project’. It’s called Growing Older, Wiser, and Stronger. It was focused on developing a peer support network, training and development for women ageing with HIV, women over 40, and to train them up to then become peer supporters and support other women also growing older with HIV. That’s when I left, then came to work for the university. That’s my involvement with Positively UK in a nutshell.

Nikos: You also mentioned the UK Community Advisory Board if I am correct.

Rebecca: Yes, I did. The UK Community Advisory Board, UK-CAB is a community organisation of people living with HIV, which has grown quite exponentially. It’s a very strong community group because they have training on various issues. If there’s a new treatment around, there are people that will bring it up in their UK-CAB meetings. So it’s a national community organisation that is quite formal. I think twice a year, there’s a BHIVA conference, it’s the British HIV Association. Every time they have a conference, the UK-CAB has an information day or a meeting day.

I’ve been a member with them, I think, for over ten years now as a UK-CAB member, community representative. That has enabled me to sit on the British HIV Association’s substandard audit committee. I sit there to look at the various to help, look at audits or reviewing standards. I sit on that and have been on there for maybe just about as long as I’ve been a UK-CAB member.

Nikos: Rebecca, do you remember any specific moments of your engagement with those groups that were empowering for you, that you felt were life-changing in a positive way?

Rebecca: I think it’s been a gradual process. I think the biggest moment for me was actually at the very beginning, when I met women from Positively Women, now called Positively UK. That moment for me was the catalyst for, you know, how I then moved forward with my own diagnosis. Then, along the line, obviously, there have been other moments, for example, when you are given the opportunity to be involved in a community in a panel discussion. So, it has been quite gradual. But the defining moment for me was that one encounter right at the beginning, 28 years ago.

Nikos: Were there also any moments where you experienced prejudice or bias against parts of your identity as a black African, as a woman, or for another reason, if I may ask?

Rebecca: Of course. So, for me, and I’m not quite sure if it’s because I wasn’t brought up in this country, my views around prejudice and race are very skewed. I didn’t even register those things before I came to this country. It’s in this country that I realised that some of these things have racial slurs, for example. I am in a position where, rather than being offended or being aware of all of those things, I sort of use it as a learning curve. I’ll give you a very good example. When I first arrived, I worked in the corporate sector, and we had a lot of people who would say things like, ‘Where did you learn how to use a knife and fork?’ But it didn’t register to me at that point. I just thought, they’re a bit ignorant. And I’d answer with a very straight face: ‘Back home, we use knife and fork’. It’s much later on than you start to realise, maybe that’s not quite appropriate.

That was like later on in terms of HIV itself. I personally have been quite fortunate. I think I’ve had two encounters specifically over the course of my HIV life, and one was when I went to a GP, not feeling very well, and I think he just brushed me off, and he said to me, ‘you’re probably lying about your symptoms’. And that was on a Monday when I went to my GP. On Tuesday, I went to my local clinic, and I didn’t come out of the hospital for six weeks. So that’s how serious I was feeling. I made an official complaint. But, you know, at that point, I thought he disregarded whatever my views were. And I think the other occasion was when I’d gone to see an immigration lawyer, because as a migrant, obviously, you have to go through the process of renewing your visas and all of that. And I’d gone to see this migration lawyer. And the first question she asked me was, ‘Well, where did you get HIV’? That was not what I came there for. I’ve come for an immigration matter. Suffice to say, I never stayed. I took my file and I said, I’ll find another lawyer. That’s how I dealt with it. But in my everyday life, people have actually been quite good in terms of how they’ve acknowledged my HIV or how they’ve treated me as a Black African woman. I’ve never felt the prejudice, per se. There’s been no specific thing that has made me feel like, ‘Oh my God’. And that’s not to say there isn’t any, because I have a lot of colleagues and friends who actually encounter this on a day-to-day basis. It’s maybe it’s my approach to how I view things. I tend to use the approach of educating someone rather than getting angry at them. And very often those are few and far between.

Nikos: Rebecca, in the HIV campaigning groups, did you sometimes feel that your voice was not taken as seriously into account as it should have been?

Rebecca: Yeah. I think there are many instances where you can say they haven’t listened to women’s issues, for example. And I think in this country, in the UK in particular, we have the gay community to thank a lot for where we are in terms of treatment, in terms of anything to do with HIV, because they’ve been at the forefront of fighting for rights and privileges. And within that, they’ve collectively included people living with HIV, regardless of your race, colour and whatever it is. So we’ve piggybacked onto them.

On a more granular level or more individual level, there are so many instances where, you know, you don’t get listened to. For example, in my clinic, we have an in-house gynaecologist, and I’m trying to explain something to her. And she just said, ‘Oh no, no, no’, she’s very flippant and just brushes you off like I’m talking nonsense. I would like to think I was empowered enough to raise it with her and say, ‘But this is what I would like, or this is what I’m trying to tell you.’ Whereas a lot of my colleagues and other female friends feel, ‘I can’t speak’, which is why I’m so passionate about advocacy, because then I can try and speak on behalf of the other women.

Nikos: If I may ask, is that Doctor white?

Rebecca: No, she’s Asian actually.

Nikos: That’s interesting.

Rebecca: Yeah. My view is that she’s probably been in the system for so long. And she comes from the old school thought of, ‘Well, I’m the doctor. You can’t tell me anything’. To change that mindset is very difficult. By contrast, the younger HIV consultants are very often quite open to you having a conversation with them. ‘I’m not quite sure about this treatment. What can you tell me?’ And it’s very, very much a two-way conversation with them. In the case of the old-school doctor I mentioned, I’ve encountered her at least 3 or 4 times and realised it’s just her character. It is the way she is. ‘Oh, but I’m telling you this. What kind of nonsense is that?’ That’s how she speaks. So, you know, it’s about finding the balance.

In general, I think we’re very lucky in the HIV community. You have that one consultant. You have them for years. They become like part of your family because they’re so engaged in your care and what they can do to support you and you have they’re always encouraging you to have conversations. There’ll be very, very few consultants that will tell you, ‘Well this is the way it is’. A lot of the time they’re quite receptive to having two-way conversations.

Nikos: Let me please ask you about ZZUK. It’s the same group with Our Stories Told by Us?

Rebecca: So, Our Stories Told by Us sort of grew from ZZUK. ZZUK is basically a group of us that were accessing peer support primarily through Positively Women. This is how we met. And then you get we all got to a point where we thought, ‘I’ve accessed as much support as I can from the organisation on a peer support level. Now I know how to deal with my HIV. I want to grow. I want to go and do other things. Bye’. So it became quite limited in the services they could offer. And as a result, we built what we call external peer support. So, the five of us sort of got together and just became friends over the years. And, you know, we started off by doing this thing where we’d meet every month at one of our houses and have something to eat and just engage. And that’s how it’s grown. And then it just suddenly became slightly more formal, but still informal, if that makes sense. It became sort of crystallised over the Covid period, because one of our friends, just before Covid, was very ill, and she spent a long time in hospital. And as she was coming out of that Covid hit, and then we were all told, ‘You can’t go anywhere’. So there was no way we could go visit her, support her, or whatever else. And we thought, ‘Well, how do we then manage this? We’ll do zoom calls every Saturday’.

And that’s how we started at 4:00, like clockwork every Saturday. We sat there, and initially it was an hour. ‘How are you doing?’ We check in with everybody. ‘Do you need any food?’ You know, and we’d arrange it if somebody did and they couldn’t go out, one of us would go and do the buying and drop it off at the door. And that’s how it developed. And then we thought, okay. It led to women socialising and gossiping for one hour. It was then two hours. And we thought, ‘Right, we have quite a bit of time here. What else do we do?’ We started a book club. So, you know, one of us would suggest a book. We’d read it, and then we’d review it, and sometimes we’d call the authors to come and join us. ‘Would you like to join us?’ And that’s how it grew. That idea is just sort of flourished. ‘Oh, what shall we do next?’ We started off by doing a photo book about our journey as friends. That was done. We completed that. And then, Our Stories Told by Us was born, post Covid. We just continued doing this. Every once in a month, we’d still meet on Zoom. We still continue with the book club today.

Then, Winnie attended, I think it was a couple of years ago, the anniversary of the first case of HIV in the UK. Someone asked her ‘It’s all well and good, but where’s the voice of the African people in here? What are you guys doing?’ So she came, and she said, ‘You know what? We don’t have a voice. We don’t. We haven’t said what kind of work we do within the HIV sector. And it’s a lot of work. So what do you think we should do? We could write a book, we could collect 40 stories.’ And that’s how the topic came up. And we just ran with it.

The five of us have got very different strengths. So as we sat there, one was like the project manager of the whole thing. The other one was dealing with the finances. And we sat down and discussed, okay, ‘How do we approach this? Who do we approach to interview?’ We designed some questions to send out to people. We realised we’re not a formal entity. If we did get money, we needed to raise money. How are we going to do it? Where are we going to keep it? So we brought on two other people. One’s already written a book before, and she was like our guide in terms of what you need to do, publishers here and all of that. And then the other one is, um, the CEO of another HIV organisation, Positive East. His name is Mark. The other author is Michelle. So, we brought them on. Mark was very kind to hold the money within Positive East. And that’s how it grew. We ended up interviewing people or people writing their stories. We decided to self-publish because you have a little bit more control.

That was it. We launched, I think, a couple of years ago. Now it’s gone very quickly. But that’s how Our Stories Told By Us was born. The idea was that we could tell our own stories in our own words. Very often, people tell our stories for us. We thought we’d tell it the way we want, how we want, but we were also trying not to focus on all the negative things people always talk about. We wanted to make it about life, and sometimes it’s joyful, and there are good things that come out of it and all of that. And that’s what you’ll find: a lot of the stories bring out that in some ways, some of them are sad, some of them are funny. But that was the idea, just to give it a really good, wholesome picture, I guess.

Moving on from here, what we’ve done now is produce a journal. I’m hoping to go and get a copy, which I might be able to give you, but the journal basically talks people through. We’re going to use it to deliver workshops, so people can write their own stories in the same way we did ours. The journals are ready. They’ve been printed, and we have them with us, and we are aiming to do our first workshop in May.

So we’ve been everywhere literally. Nationally, I’m also trying to think where else. We’ve also gone to Geneva. We were invited by UNAIDS to come and talk about the book, and how important stories are. And yeah, that’s where we’re at the moment. But we’ve been literally everywhere. Glasgow, Edinburgh, you know, everywhere. Manchester, Brighton, we’ve been literally everywhere in the UK to talk about the book.

Nikos: That’s great. I remember the event in Edinburgh, actually.

Rebecca: Oh, do you?

Nikos: Do you feel happy about the reception of the book and your work?

Rebecca: I think we’re more than happy because it’s gone beyond what we expected it to do. For us, it was a passion project. We just wanted to get our stories out there. We just wanted to put a face to a name. I mean, you’ll see in the book that everybody who’s written has actually got their picture on there. And that was really important for us. I think we got interest from about 100 people who wanted to write. But then there were different approaches. We needed to make sure that we had the right balance, enough men and enough women, but also enough allies, because the journey is not just ours, it’s people who have helped us along the way, right from the beginning. So, that was the plan. But then some people said, ‘Oh, can I write under a pseudonym?’ And we thought about it and thought, well, part of the reason we’re doing this is to put HIV on the map, to put a face to HIV in a sense, try and fight stigma in our own small way. And if we then want to talk about it, and we don’t put our face, we are feeding into the stigma narrative. So, we made it a point that everybody who writes has to put their face there so that they’re openly talking about HIV and their experience. So that’s what we’ve done.

Nikos: Speaking of allies, Rebecca, do you remember any important allies for yourself? Anybody you would like to particularly highlight?

Rebecca: I mean, and again, it’s a bit like the defining moment allies have grown over the years. So, my first and foremost ally would have probably been my clinician because that was my first point of contact, the person I talked to is a person, that I’ve known for this many years. So that’s like my key ally when it comes to anything to do with HIV. And then the more embedded you get in, the more you realise there are so many. There’s, you know, people who are really passionate about women’s rights. You have Professor Jane Anderson, who is another consultant, but her work is wide. It’s like she’s so passionate about HIV and anything to do with women’s rights. You have Doctor Vanessa Apea. She’s also a great ally. Rageshri Dhairyawan. All of these are consultants, and they’ve all written in the book. Also, Professor Kevin Fenton. His journey with HIV has been right from the beginning. And then you have people that are, you know, within the clinic setting, our nurses and doctors, but they themselves are living with HIV. All of those are great allies. I’m trying to think in terms of the political side of things. Florence Eshalomi, she’s an MP. She’s always chasing the HIV agenda. We’ve got to keep it on the map. There are many, many allies. They keep our voices alive.

It is since HIV treatment has become available, everybody thinks that everything is okay, and you can carry on. All you have to do is go to work. But I think people tend to forget that HIV treatment works, but not for everybody. And there are lots of other, you know, social, economic stuff that you have to deal with as well. So, it’s that and then I think the most important thing, to take it back to our stories told by us, our allies as well. The gay community held an event, raised quite a bit of money, and donated it to us for the book. That, in itself, was a gift. We thought, ‘Oh my God’. It was, you know, it was a surprise that they even thought this was what we’re going to do with it. But then that also just emphasises the fact that we’re not alone in this. Everybody was walking the same journey. So that was really, really appreciated.

Nikos: Let me now ask you about your influences, especially from the Global South. Any ideas coming from Zambia or other parts of Africa or the Global South that have shaped your thinking about HIV?

Rebecca: I think when I got my diagnosis, I had very little knowledge around HIV. I think in terms of over the years, in terms of influences or anything like that, it’s been more, South Africa. That’s where they’re really active when it comes to or that I know of. So you have lots of organisations there that I’m trying to think what comes to mind now? Treatment Action Campaign. They’re very vocal when it comes to issues around HIV.

In the beginning, Uganda was also quite influential because they got hit the hardest, and they managed to deal with HIV in a manner that stabilised them. You know, any new infections or anything like that. They got it dealt with very quickly. So, for me, that was quite a wow moment. On a personal level with Zambia, it would be the fact that I think I recall there was one particular person, a gentleman who openly declared that ‘I’m living with HIV’ and he’s doing very well. You know, and for me, that was like coming from an African country where this is not even discussed or talked about. I thought that was quite influential in how he then did all of this. But yeah, that’s as far as I can remember and recall.

Nikos: What about faith leaders in Africa and in the UK as allies?

Rebecca: So my viewpoint would be the same. I’ve been away from Africa for such a long time, and faith is a huge issue. It’s everybody’s first port of call with anything, not just HIV. Anything is to do. It’s, you know, the faith approach. And we have the same here, particularly amongst black African people. That’s your go-to, or you know what I will. And over the years, we’ve had some problems in that people will go to their faith leaders and in the hope that they will be supported, and sometimes get very disappointed because then they’re ostracised. Or the flip side is that the faith leader will then say, “We will pray for you.” You will get healing. Therefore, you stop taking your medication. I remember there was a year I can’t remember when, but there was a year that was quite an issue because a few people died. There were no repercussions to that, unfortunately. But then there was this big drive to try and educate faith leaders or, you know, create an awareness within the church. I remember that I was working, so this must have been about 2016, 2017, 2018, because then I was working on the NAZ project. We had a very good sort of faith-based program. And the idea was that we developed a training program specifically for faith leaders in the hope that they would then gain an awareness and an understanding so that they could then have those conversations with the congregation or deal with their congregation in a slightly more positive manner.

And it was very successful. Unfortunately, as it is, funding was limited. We were able to engage a lot of faith leaders, including Muslim communities and work with them to create a better awareness around HIV and treatment options. And sometimes they’d have these conferences or health days within the church, and you’d be called to come and do some testing there. And it was a really good program.

I think we still have quite a lot of issues around faith because people then use it depending on the church you’re going to. People may use it as a platform for shame and guilt, and they will ostracise you, and you cannot come back. We know some churches will tell you, ‘Well then, in that case, you can’t get married’, because they do their pairings within the church. Or, you know, this person would like to marry this person. But first, we need to have HIV checks or sexual health checks. And obviously, if you’re living with HIV, that makes it extremely difficult. Then you have the side where they tell you, ‘God will heal you’. So and people believe it. People really do believe it. And they stop taking their medication, which is regressive. The idea is that we’re trying to get to a point where people can live, have a good quality of life. If you stop your treatment, of course, you’re not going to have a good quality of life. So it’s trying to marry the two [HIV treatment and faith] and make sure that people understand that. But those conversations remain very difficult in a faith setting. Very difficult.

Nikos: Rebecca, if I may ask about art from sub-Saharan Africa, like theatre, music, storytelling, how important they have been for your own HIV experience and HIV campaigns in the UK?

Rebecca: I think with that, I can relate to the fact that coming from an African background, we sort of just embed that within our day-to-day lives or in the events that we do. For example, when we did the launch [of Our Stories Told By Us], we made sure we had drummers, we had storytelling, we made it a very African experience, and people can relate to that a lot. I think it’s becoming more and more common to adapt that to how we engage the African community. So, in focus group discussions, there’ll be elements of storytelling, because they recognise that that is how people remember things. That has a huge impact. I think we’ve embraced it as Africans is what we brought with us as part of our journeys with HIV. I think it’s terribly important. And nowadays you get a lot of arts therapy, for instance. I know of an approach that they use in research where there’s a name for it that I can’t remember, but the idea is that you get people to sit down and do some creative project, whether it’s writing poems or whatever else, but within that, that’s where your data collection is happening because people are having conversations. So, you know, art from Africa becomes more and more of a thing to use within the HIV sector.

Nikos: Did African art play a role in the activities of Positively Women or Positively UK?

Rebecca: Sometimes. So it depends on who is leading. But there were quite a lot of creative events. Creative writing, or sort of days where you would come together with a whole group of women and just have conversations, doing your hair and all of that kind of thing. So they were very centred around activities that women or African women enjoy or do. I mean, using art from Africa was not as popular as they are now. Now it has become more important: we can do a creative writing session, or we can do a poem writing and then produce something. I know now, for instance, Positively UK did a Catwalk4Power. Yes, it is something that they sit around the table and design their own outfits and it’s an empowerment thing. And then at the end of the whole thing, they do a strutting session. So, it’s become a lot more common feature in HIV campaigns.

Nikos: What about therapies for mental health issues, for instance, coming from sub-Saharan Africa? Have they played a role in HIV campaigns in the UK?

Rebecca: I think it’s something that we still battle with if you’re an African. I remember watching something quite recently where it says that there is no depression. Where we come from, people don’t recognise all the unseen conditions, like Alzheimer’s. So, in sub-Saharan Africa, we’re actually just learning that these things exist. It’s when you come here, then you realise that actually, I might be struggling with my depression, which is actually a thing. But sometimes even as an African, because of what we’ve been socially conditioned to, unless you hit rock bottom, sometimes you don’t even acknowledge that I might have some mental health. You might need some therapy. You might need some support, but that’s often offered through the clinical settings. You have to be diagnosed with it or, you know, referred to it for that support. And the waiting lists are like really, really long. But that’s another matter for another day. But yeah, in terms of tying the two together, I think that for Africans per se, it doesn’t matter whether you’re sub-Saharan African or whatever: Mental health is just a very difficult concept to try and understand; that actually we do have challenges with mental health. That’s the beginning. It’s when you get exposed to the West, that’s when you realise, ah, I might actually have an issue.

Nikos: Rebecca, on another note, speaking of sub-Saharan African communities, would you feel that there is a sense of unity within those communities in the UK, or would you say that it’s quite a heterogeneous diaspora?

Rebecca: I think it’s heterogeneous. I say that because even as I speak, I think I can count on one hand the friends that I know that come from my region, even from Zambia. A handful. Then my other friends are from the neighbouring countries. But I also think there’s a lot of mistrust. When you arrive as a migrant in this country, your instinct is to seek out people that you’re familiar with or that you know. But then those are the same people who might sell you out to the home office or whatever else. So, people tend to then either engage with people from other countries and other communities and not engage with your Zambian community at all, unless you have that one person that you’ve built a trust with.

Nikos: I was particularly wondering about the effort in the 1980s to bring together women from sub-Saharan Africa, but also from South Asia. And there were moments of strong alliances, but also of conflicts. So I was wondering whether those activist initiatives of the 80s have had any influence on you.

Rebecca: I think they’ve been influential, as I’ve been here in the UK as a person from sub-Saharan Africa. Recognising that, much of the initial activism and advocacy has actually come from women in the likes of America. And, you know, that’s where they’ve actually had groups of people fighting for treatment and all of that. And that’s spilled over into the UK.

Even today, we have alliances, this is another organisation I should have mentioned earlier, the 4M Mentor Mothers, on which I’m a co-director. But our remit is to provide mentoring and support to women living with HIV, going through the perinatal journey. So any issues around pregnancy. If you’re living with HIV and you’re considering getting pregnant, we can provide support. Because sometimes people get diagnosed during pregnancy or someone is getting pregnant for the second time and they said, I’d like to breastfeed this time. So we formed collaborations and alliances with women in America, Switzerland, and Germany, and also connected with women in sub-Saharan Africa, because we have the same things to talk about and to advocate for. Surprisingly, as an example, the women that we deal with in the US, weren’t as far ahead as the people in the UK. And so they, you know, and we in the UK have gotten to a place where actually you can breastfeed if you’re well supported by your healthcare team. They were far from that. They were almost ten years behind the UK. We’ve had a consultant who is very well-versed in all of this on a webinar. And we’re all talking about this, and they’ve campaigned, and they’ve also now gotten to a point where they can also breastfeed if they are supported. Well, so there are sort of pockets where you really band together because you’re all fighting for the same thing, whether it’s women’s rights or PrEP for women. PrEP is pre-exposure prophylaxis.

And then there are, for example, on a more national level, within Positively UK, we had the African Women’s Support Group, because the issues were very different. And those, you know, women from other nationalities and races didn’t necessarily feel comfortable sitting within the African support group because their needs were very different. A lot of the time, the African women would be talking about migration, maybe lack of housing, domestic violence and a whole range of things. And then these other women probably had just HIV to worry about, and maybe the stigma around that. So, you know, there was a need to then separate the two. You had an African support group, and then you had your general women’s support group held on two different days.

Nikos: On another note, Rebecca, do you still have contacts with campaigners in Zambia and other sub-Saharan African countries?

Rebecca: More on a social level. So, for example, in Africa, we have what they call AFROCAB, which is the African side of the UK-CAB. It is the African Community Advisory Board, which I think covers sub-Saharan Africa, Zambia, Zimbabwe, Malawi, and a few other countries. Another ZZUK member would be able to feed you more about that. My knowledge around that is very, very vague. But I meet people from AFROCAB at conferences and stuff like that, but on a day-to-day work level, I wouldn’t be able to claim that.

Nikos: Rebecca, these are the topics I would like to discuss with you today, but are there perhaps any moments, any experiences of yours, you would like to elaborate on which you have not discussed so far?

Rebecca: I think I’ve learnt over the years how powerful campaigns can be. Whether it’s across the borders, whether it’s in Africa, whether it’s over here, they can be very powerful and that we’ve got learnings to do from both sides. But it has also made me understand that we’re fighting the same fight. So, if you think about treatment, even treatment options, it is also very different here from where I’m from in Africa, because the cohort that you’re dealing with is very different. The healthcare systems are very different. But again, you can still have lots of cross-border learning from all the campaigning that we do over here. And, you know, you can apply it back home and vice versa. There’s a lot of learning that we can do from across the seas.

Nikos: Is there anything particular you would like to highlight in terms of this cross-border learning, what you can learn from Zambia, from Africa, sub-Saharan Africa, to implement here in the UK?

Rebecca: I’m speaking from a very broad perspective because there’s a one of my friends who does a lot of groundwork. But I think there is a lot to learn in terms of how engagement is done on the ground, at the grassroots level, back home, wherever in sub-Saharan Africa. We could learn a lot from them [here in the UK] about how to apply that to engage our communities here. Because here, we’re still trying to an extent to get over the perspective that this is a group that’s very hard to reach. No, it’s not that. It’s just not knowing where to reach them from, whereas back home, people are actually on the ground doing the 1-to-1 conversations. And, you know, if we can implement that here, I think then we do a much better job of making sure people are engaged in care. So for me, that would be a really good learning. Embed yourselves on the ground so that you can then reach all of these people that you’re trying to make sure remain in care.

Nikos: Thank you so, so much, Rebecca.

Rebecca: You’re very welcome.