Interview with Robin Gorna

Nikos Papadogiannis: If I may start, Robin, with a broader question, please. Would like to refer to some background information about you, where you grew up, about your education, please?

Robin Gorna: These days I often describe myself as a bit of a nomad. I was born in Manchester, the UK, and I’m born to an Italian immigrant family on my mother’s side. My father’s side is English, but I grew up principally with my mother and didn’t really know the English side of my family. It’s probably relevant because when I now tick the ethnic monitoring forms, I always want to say white European, rather than white British, because I don’t feel particularly British in myself. So, we moved from Manchester to Leicester where my mother worked in race equality. I grew up around a lot of Caribbean and Asian immigrants to the UK and then moved to London when I was 15. I was principally state educated, but then I went to a private school, a girls’ school for three years, which I found very strange. And then I went to Oxford, where I studied theology, and my main interest at university was drama and the arts. I’d been very much involved in theatre, in the arts as I was growing up, and I hoped to go on and have a career in the arts, particularly in theatre; it was where I saw my future. And then I became an AIDS activist at the end of my second year because my best friend at Oxford died in a car crash. After he died, I went with his family to see The Normal Heart by Larry Kramer – all part of my passion for the arts and theatre. And as a consequence of seeing that play, I became a volunteer with the Terrence Higgins Trust (THT). And that was that, really.

Nikos Papadogiannis: Thank you very much, Robin. That brings me seamlessly to my next question. So, what would you describe as landmarks in your engagement with HIV & AIDS activism?

Robin Gorna: Landmarks in my AIDS activism. Goodness, what a great, great question. Well, I think the first one was absolutely signing up as a volunteer. It was 1986 and so at the time that I volunteered AIDS was just beginning. And it was really a shocking time. There was a lot of death. We didn’t have HIV. We were talking about HTLV-III and LAV. And so I remember my training very acutely and I remember sitting there scribbling away lots of scientific terms. I was very much an arts person so it was quite a challenge to learn all this science, but it felt very, very urgent to learn the science.

I think the next landmark for me was then when I became involved full time. I left university a year later and realised I didn’t want to do any of the jobs that they were pushing me towards. It was a very old-fashioned time at Oxford. There were very few women at Oxford and so we were being pushed into very traditional careers and I realised that I wanted to do more with the Terrence Higgins Trust.

Perhaps the biggest landmark after that was when I was asked to go to work for the European Commission, I suppose, or actually before that: my first International AIDS conference in 1989. I went to the Montreal AIDS Conference, and that was a very striking moment. I remember Michael Callen, who was the founder of the US PWA (people with AIDS) Group, and I remember Cheryl Overs who was one of the most vibrant of the sex worker activists. I recall their work, how they were responding, and it all started to glue together with what we were doing in the UK. And back in those early days I was with the Terrence Higgins Trust, but THT also hosted Frontliners, which was the UK network of people living with AIDS and ARC. We talked about ARC at the time – it stood for AIDS Related Complex – and that was far more significant than HIV because HIV had not yet been identified, and we were very cynical about testing. Few people were testing. We were really just engaging with people when they had symptoms. That conference was the moment when I started to understand better what we were doing and to see the connections.

And then I was sent off to the European Commission by THT. By then I was on the THT Board of Directors and I was working in Oxfordshire, being responsible for the AIDS programs of the local government and Oxford Health Authority. And because I speak French very well and I have a bit of a knowledge of other languages, I was sent off to do that, which is kind of crazy when I look back now. I think they thought, well, I was quite clever, and I could speak French and so I would be the person who would be seconded to the European Commission, and I went to do that. One of our hidden agendas was to get money to the European AIDS Treatment Group. Nick Partridge and others at the Terrence Higgins Trust had been meeting up with mainly gay doctors in other countries. And I’d become a treatment activist in the early days, especially for my friends who were women with HIV. I don’t have HIV, but I was very involved with them and supportive of and concerned about their lack of access to the right treatments. And so, I think we saw that the European AIDS Treatment Group (EATG) needed money, and the best place to get that money was going to be from the European Commission. So that was a sort of hidden agenda when I went to Europe. When I got tired of being a bureaucrat (I was never a very good bureaucrat, I’ve tried it many times in my life) I joined the board of the EATG Board of Directors and that became a really significant moment. Again, not one particular landmark, but I have very many memories of sitting at the back of conference rooms, learning from people, doctors principally, about how things worked and the science of HIV.

Then the Vancouver International AIDS conference (1996) is another particular milestone. I still recall sitting in the conference plenary session when they announced HAART (highly active antiretroviral therapy) and weeping because it was so obvious that this was a game changer. But it was also obvious to me that it wasn’t going to work for many of my friends. By then I had been spending quite a lot of time in New York, which is where I spent time writing my first book on women and HIV. And I was right (with my fears) in that my friend Dean, who was one of the people I dedicated the book to, he died a few months after HAART was announced – a year after my kids were born. Whereas my friend Kate, who, I also dedicated the book to, is still alive and kicking and doing a lot of work. So yes, that was another big milestone.

And then following that, I was asked to be the first community chair of an international AIDS conference. It was the 1998 conference next and it happened in Geneva, but this was the first time that they had had anyone from the community in a leadership role. And I think there was a little bit of (well there always is), politicking going on under the surface and the community groups like GNP+ (Global Network of people living with HIV), the International Community of Women Living with HIV, ICW (which was very lively at the time) wanted the person who did this role to be someone who was well-known and trusted in the community. There had been a politician from Geneva had been proposed but – long story short – I was elected to that role, and I felt very honoured to be so trusted. But that went on to be quite a significant game changer for me in that as a consequence of that I ended up moving to Australia. I became pregnant (unexpectedly) during the process of chairing that conference and partly because my children’s father is Malaysian, I thought he might be more involved if we moved to Australia. So I moved to Australia to lead the Australian Federation of AIDS Organisations and I guess that was really putting in stone the fact that my interests were very international. Up until that point I had been perhaps more focused on being a UK activist or a European activist, but then it really became international. And when I moved back, the next big milestone was when I was appointed to set up the UK global AIDS policy team at the Department for International Development. I remain intensely proud of that role, even though it was very tricky. A few too many milestones. I’m sorry, you probably just wanted one, but there you go. You’ve got a lot.

Nikos Papadogiannis: And that’s really, really interesting. And if I may ask about some of those milestones. About the European Commission, for instance, do you remember having contact to doctors or other people from specific continental European countries? Any meaningful contacts in this respect?

Robin Gorna: Yes, very much so. Through my European Commission work – I moved there in 1991. It just as the UK was acceding to the European Union (EU), there were to be 12 countries at the time in the EU and I was there as a bureaucrat. In respect of my work on the inside of the European Commission, there were not really any doctors. It was very much a bureaucratic process. My role was about engaging with the civil servants, and I was very much kind of lone player. It was just, it was me; I was the only person working on HIV and AIDS, with two people above me in the hierarchy, who were permanent civil servants. Most of the time what I was doing was travelling country to country and helping the community groups to link up. My role was “Consultant: AIDS, drugs and NGOs” because in Southern Europe, in particular, they had a really overlapping issue with drugs. This was before Eastern Europe was a part of the EU. I also worked very closely with Henning Mikkelsen at WHO/Euro. We shared a similar passion even if we used to fight a little bit because he was “Big Europe” (and physically very tall whereas I’m very small). I had the 12 EU countries, and he had a bigger expanded remit, and we would really just try to help networks and community groups to work effectively together. I’d say where the doctors came in was with the European AIDS Treatment Group. And as I mentioned initially, we (THT) sort of secretly had them in our mind. They were part of why I was seconded, in order for those connections to grow and flourish. And so, they are the people who were most important in terms of doctors. Dr Matthias Wienold is phenomenal. And he may have told you about Dr Jürgen Poppinger, who was a remarkable human. The Germans were very strong on these issues, and they had a lot of activist doctors like Matthias, and Jurgen, who had a large practice in southern Germany, and Stefan Dressler. There were then people like Didier Lestrade in France, not doctors, but very active in the European response. In addition, we had Dr Eugenio Teofilio (who is Portuguese) and there were other doctors. The Germans have been very good at archiving what they did with the EATG, but it wasn’t just about Germany. From the UK it was myself, Nick Partridge, Jonathan Grimshaw, Keith Alcorn and Edward King. In France they were again mainly community people, like Nathalie Dagron (one of the few women with HIV to get involved in treatment activism) and not so much doctors. Eugenio in Portugal with the only other doctor I recall as being particularly active. In the UK we had Dr Mike Youle who was quite involved.  Many of us were from the community who were doing the more active work. And I think what was particularly striking. I gave a talk last week where I spoke about the way that our American friends, particularly the people who went on to create TAG (the Treatment Action Group that grew out of the embers of conflict in ACT UP New York), and who came and trained us. That is also another one of my milestones;  I guess it was 1993. We had an EATG training in Budapest, Hungary with Keith Alcorn, Nick, myself and Matthias and everyone, and Mark Harrington and Gregg Gonsalves and Lynda Dee, all came with David Corkery to train us and that was remarkable. Lynda is one of the perhaps less prominent of the early AIDS activists, but really very important, she led AIDS Action Baltimore. And with Mark and Gregg, who have maintained a high profile, she came with David and they basically shared with us how they were working in this treatment area. I would say that if the European AIDS Treatment Group has gone on to do much good in the world, it is in many ways because of the partnerships that evolved at that time. That was sort of the most important side of how we worked together globally at the time.

Nikos Papadogiannis: Robin, may I ask in relation to what you mentioned about ACT UP, how close was your personal collaboration with ACT UP activists in London or elsewhere?

Robin Gorna: You know, if I’m honest, in the UK there were other good activist groups. Lesbian Avengers was good, Outrage was good. Personally, I was never so much the person on the streets. Although I had the t-shirts, I tended to use my skills and connections to be more of an insider lobbyist, as it were. It’s always easy to see the kind of excitement in the activism on the street, and the person who was very good at doing both is Will Nutland. Simon [Watney] had really strong relationships to ACT UP New York and I spent quite a lot of my time in New York. It was by chance (it was a bit left field, but I suppose it shows a little bit how all these connections tended to happen). What happened was that when I was at the Terrence Higgins Trust, the New York City Gay Men’s Chorus came to the UK, and they were doing some performances giving their profits to different European AIDS NGOs. This was back in 1988 and I became their tour guide (it’s been very handy for me that I spoke French). So as a consequence, I made friends with a lot of gay men in New York, nearly all of whom have now died. And that led me to end up spending a lot of time in New York. And through that connection, I became friends with people in ACT UP. I think that Simon’s route into ACT UP most likely was through gay activism and art history, but in a different way several of us made those connections with that early activist New York community. So, I went to ACT UP meetings in New York many times.

I don’t recall ever going to an ACT UP meeting in France or in the UK. I do remember quite good connections with the Paris group, including though a particularly fine woman called Nathalie Dagron who sadly died many years ago and she was in EATG as well as ACT UP Paris. But I didn’t get involved in ACT UP London. They were often, it seemed, louder than they were useful, if I can say it that way. But it is also just about styles of working and how different people have the best strategic impact. By the time they became established, I already was quite embedded in the AIDS work that I was doing. It was more than full time and I didn’t much need to be part of ACT UP in order to get things done. I had other ways of getting things done. I suppose one of the threads of the ways in which I have worked through the years is to be a sort of insider activist, whether that is through being seconded to the European Commission or (which happened a few years later) being seconded from THT into the Department of Health to draft a strategy on AIDS, which was a rather smart strategic way of getting the UK government to put more money into community organisations. And we did that by writing this document for the UK Government. So, I kind of had that access, I didn’t need to campaign in the street, but it’s no lack of respect for people who did. I don’t think, however, that anyone claims that ACT UP London created the kind of change that ACT UP New York did. They worked in different ways, and they made some noise, which was good. But by then, a lot of the other stuff was happening in different ways. Frontliners was really a very important part of it – but sadly their role has been very much forgotten in the history of AIDS in this country.

Nikos Papadogiannis: That’s very interesting. So then if I if I may ask Robin, concerning your contact with ACT UP New York and ACT UP Paris, did this influence your campaigning in relation to AIDS in any meaningful way?

Robin Gorna: It’s just a part of what we did. I mean, we were all connected at the time. I think one of the things when we look back that is worth remembering (and I’ve just been writing about this in respect of how movements work and how they construct themselves) that you can never underestimate friendship, and that includes sexual relationships in terms of how we were all very connected with each other in lots of different ways. We were trying to make sense of an extraordinary and strange situation where nobody had the answers. We didn’t know what we were doing. It wasn’t as if there was you know, some kind of hidden answer. We were trying to figure it out together, and I suppose I couldn’t say that in the UK ACT UP was more influential than anything else. We were all very similar and would tend to do the same kind of work. ACT UP Paris were vibrant and useful in terms of the ways in which they worked around the issues in a similar way to what we were doing as European AIDS Treatment Group.

I’d say in many ways, the New York crowd were more influential to me because I was especially working on women’s issues, which were quite niche, and they were niche for a reason, which was that there weren’t very many women with HIV at the time and especially in Europe. So inevitably those of us thinking and acting around women and trying to understand the treatment needs and trying to push for a better focus on women, we were a small group. And that’s why we needed to link with the activists in the US – because there were more women there. It was a numbers game. I think one of the challenges perhaps for those of you looking back is that it was never one group. And often the groups that have received a lot of focus may not have been the ones that were really the most important at the time. But that said, there’s no doubt that ACT UP New York was really fundamental. And the fallout that occurred in ACT UP New York, which led to the Treatment Action Group being founded, was really very important, a sort of ideological shift. What remains of ACT UP in the US is the side that was becoming so broad and so inclusive of a wide range of issues – and that got in the way of some of the more immediate focuses that needed priority attention. But at the time, we didn’t have treatment. At the time, a lot of people were dying. I’m in no way underestimating the importance of these social issues and their relationship to HIV (many of which are issues that I feel very passionately about personally). But you know, it’s hard to explain now. In my twenties, I was very, very, very used to going to funerals. It just became what I did. And I think that that’s where things got a bit complicated with ACT UP, because the focus on so many social issues, social determinants, challenges of the world, for many people, became a distraction from the urgency of fighting actually to get some money for AIDS treatment and AIDS research, for example.

Nikos Papadogiannis: I see. So, while you were working for the European Commission or during your collaboration with EATG, do you remember any particular campaigns which you find as very important concerning treatment issues or housing issues? Something that you would like to single out, perhaps?

Robin Gorna: EATG, I mean, certainly not in terms of housing. I’m not going to say that we did anything particular related to that. That’s really where I’m saying that New York sort of headed in that direction. In EATG, we were particularly concerned with research and engaging with the pharmaceutical companies – and that’s always been a challenging issue. From a European perspective, it was actually really quite fundamental as to why we created the EATG, because even before all of the structures that we have now in Europe, it was clear that we were going to need to engage differently from our American friends because their approval processes were inevitably American and ours were not. And so one of the things that we got involved with was that we set up a European Clinical Advisory Board, and I believe the EATG still has some structure of that type. One of the main things that we were doing was sitting on clinical boards. For example, I sat on the Clinical Advisory Board for the AZT-3TC trials in Europe. It’s important to remember when EATG got started, we were in the days of monotherapy. AZT was the only drug, and that wasn’t even available when I initially started my AIDS work. So, we were trying to position what we needed from the perspective of the community and how we needed those trials to be run and in such a way that they would get results and pass through to regulatory approval quickly. That was the approach that we were taking and it was complicated because the European structures were quite new. And so everyone was sort of building the plane as you fly it, it was that kind of model of working out what was going to be possible in this new European way of working. I remember it more in terms of individual campaigns that we were part of. And we were also doing an awful lot of education of each other as well. A lot of my time was spent writing, which ultimately became my first book. Keith Alcorn, Edward King and I were very much involved in the writing, but especially Keith – and I was really doing all of it for women with HIV. I recently found a lot of the old AIDS Treatment Updates (by National AIDS Manual, NAM) and they were great examples of how we were trying to use our capacity to summarize, synthesize information so that people had safe access to the information they required. But it was rather different from the US because the US has always been a bit more combative in their approach. And I don’t know whether we needed to be in that way. It wasn’t quite as simple, maybe because we were a smaller population, I don’t know, but we just didn’t have that same combative, competitive approach.

Nikos Papadogiannis: So, then you have mentioned, Robin, your involvement in women dealing with HIV & AIDS issues. Some other interviewees of mine, women, told me that they sometimes felt somewhat marginalized within those campaigns. They felt that these campaigns were male dominated and not really in the UK or internationally. Is this something that you perhaps felt at times or not really?

Robin Gorna: Oh, yes, absolutely. I mean, that’s where I was coming from. I was battling on behalf of women who were not being well regarded. And I suppose it’s interesting that your lovely way of doing this interview started by asking me about the context of my life. As I told you, I was at Oxford at the time when women were absolutely in the minority. It was all male dominated. It was very posh. And the reason I mention that is that I think it stood me in great stead because of having to then stand up to doctors – who were very privileged and had worked their way up through a very masculinist patriarchal society – I had already learnt how to do that over three years in a minority in a very privileged and elite institution. In some ways what I brought to the AIDS movement was my confidence in dealing with those situations. So, yes, – the idea that at this time women were really marginalized – is how I frame where I was coming from. There is absolutely no doubt that this was really problematic. And for my friends, women living with HIV, they felt absolutely marginalised from the situation and there was really very little of any attention paid to the fact that that women might have different bodies, as well as perhaps children. I did some early writing on children with HIV and looking at the needs of kids, and kids were treated as little adults (which, from a medical perspective, they simply are not). Women were treated as not having different bodies. The difference in biology for the norm (men) and people assigned female at birth was not respected in the trials. We didn’t even think about transgender. I noticed I had something about transgender in my book and I am quite proud of myself because 30 years ago the community were hardly thinking about these issues – they were really totally hidden and marginalised. And, also, the numbers of women with HIV were tiny in Europe, which is where people like Kate Thomson and Nathalie Dagron and others were very significant, because they were speaking out about their own infections and their own realities and starting to mobilise. But it was not a straightforward situation by any stretch.

Nikos Papadogiannis: Did this situation [marginalisation of women in HIV & AIDS activism] change at all during the eighties and nineties, or was it more or less the same?

Robin Gorna: It did begin to change. I hope that those of us who made a lot of noise had some kind of an impact. There were also always amazing doctors. People like Dr Jane Anderson was always very involved of working with women with HIV. So I think it did evolve. Before I moved to Australia, one of the last things I did for THT (in 1996 I think) was to organize a conference which brought together gay men and African women. It became a very toxic conversation in the early nineties as we had more and more people from Africa diagnosed with HIV in the UK and it was predominantly women who had HIV. Conflict started to emerge between groups of (mostly) white gay men for whom HIV was “their” epidemic, and they were often quite antagonistic to the women from Africa. There were very different challenges in the UK for those two communities of people with HIV: gay men and African women. Edward King’s book, Safety in Numbers, was quite fundamental and started as an attempt to shift a conversation where the Terrence Higgins Trust had become almost quite homophobic. There was a time when it failed to really engage with the fact that that gay men were disproportionately affected by HIV and somehow had got caught up in trying to make HIV a rather polite illness, a framing that many of us could fall back against. That did start to shift in the mid nineties and again I think it was very much the numbers game because when I started HIV was about (mainly) white gay men and white gay men needed great care and they weren’t getting it. So, there was nothing wrong with the fact that we were fighting hard for white gay men. But I recall when the first drug user activist, John Mordaunt, became involved in the Terrence Higgins Trust and Frontliners and how challenging it was for the staff and volunteers to engage with the needs of drug users back in the day. So the evolution of the approach in respect of marginalisation of women was really about the evolution of the epidemic here in the UK. And then from my perspective, having been involved in different countries, the difference was that when you got to Southern Europe, Spain and Portugal, in particular, because of the drug use epidemic, we saw a different gender balance going on and, therefore, it was a different kind of conversation.

Nikos Papadogiannis: Very, very, very interesting. So that brings me to the question of how close or how smooth was your collaboration with people of colour in Britain or in continental Europe at that point.

Robin Gorna: This is very much part of my personal family history: my kids are mixed heritage; my stepfather is black. The work we did was mostly about the African epidemic, not so much about Black British early on. The reality is that in the early days of HIV, it was predominantly a white male issue in the UK. There were some good thinkers unpacking what was going on. The Chirimuutas (Richard and Rosalind) wrote their book AIDS, Africa and Racism back in the eighties. You know, they were thinking about race, but we didn’t even know the epidemic was going to take the trajectory it took. And I think one of the failings of (the recent TV series) “It’s A Sin” is that overstates the relationship with African gay men. You know, it presents an image of gay life in the eighties, which I don’t recognize. Of course I’m not a gay man, but I was pretty much around the gay scene, and I don’t think that’s what it looked like. But there were clearly always black British activists, people of Caribbean heritage like Marc Thompson, who’ve been very much around and came more to the fore in the early nineties (when I was leading the Terrence Higgins Trust Health Promotion Department). That was the time when I went and did a secondment in the Department of Health, which led to setting up the CHAPS program where we very deliberately created a relationship with the Black and Asian communities in the UK: the organisations BIG UP and NAZ were central to that. But it was a sort of, it was very much an evolving conversation. It wasn’t something well thought through at that time by the sort of structures, but it was also again, it was a numbers game and I think what Blackliners – which was the network of Black people with HIV at the time – and others did, was very important. By the mid-nineties really the shape of the epidemic had changed, and people were beginning to notice and be thoughtful about that level of diversity. I don’t know what the situation was in other parts of Europe. Probably it wasn’t something that was really particularly on anybody’s radar that I recall in terms of how colleagues were thinking about this from other countries. And I guess, to be frank, you have to remember that we were sort of, we were so busy, focused on the complexity of the science that we probably were not thinking as deeply about the social issues as we would be doing now. And as I mentioned, that ICA conference (that I did just before I went off to have my babies in 97) brought together Noerine Kaleeba from Uganda with a bunch of the African women with HIV in the UK, plus Mark Harrington from New York and a bunch of the gay men. We very deliberately brought in people from overseas because it helped to neutralise what was becoming quite a toxic conversation, and it was becoming toxic at a very personal level. For example, you would have a Christian black woman with HIV sharing an office with a very sex positive white gay man from the UK who also had HIV. And they would object to sexualized gay images on one wall and Christian images on the other wall. And both, you know, obviously had a legitimate right to their perspective. So, it was that micro human conflict was playing out at a political conflict. And the UK authorities and I would say the European authorities were not thoughtful about the disaggregation of race or indeed of gender in data, and still are not. One of the things we still fight about a lot on the Global Fund is to get properly disaggregated data and for it to reach us in the way it should. So while I’m proud of what we did in 96, trying to bring the communities together, I don’t think it was a particularly prominent issue. As a side comment, Noerine and Sam Kalibala – who were the founders of TASO [The AIDS Support Organisation] in Uganda – became involved with THT early on; I met them in the late eighties. So, there was a connectedness there. And one of the debates we had on the Board of Terrence Higgins Trust (and I lost that argument) was whether we should have a formal relationship internationally. People didn’t agree to do that because I suppose we just had so much on our plates that it just felt like a step too far, which would distract us.

Nikos Papadogiannis: That’s extremely interesting. I was just wondering about another point you made earlier about your contact with people from Southern Europe, like Italy or perhaps also Portugal. So, were there any difficulties and perhaps misunderstandings in your contact with them?

Robin Gorna: I mean, again, remember that HIV was a minority issue at the time. So, it was really something we were all struggling to understand. So, the people we were engaging with, I guess, were the people who were already feeling marginalized. You know, we were all stumbling around trying to find our way, and we were happy to find any fellow spirits. There were different types of networks that we set up and really EATG is the one that has remained. We had a European network on helplines. We had a network on care. We had a network on drugs, we had one on migration and we had one on human rights and the law. And those were all in 92. They were all European. And yes, of course, there was quite a difference between the sort of northern European approach of, like our Dutch colleagues, for example, and our Southern European friends. And this was as much about, I suppose, cultural traditions and the ways of operating as also about how the epidemic was playing out. And so, we had stronger and better responses to care in Southern nations and more thought and focus on the law and so forth in the in the northern nations. The UK was very dominant and there were the inevitable conversations about French language and English language, and probably our Southern European colleagues contributed less because of language as much as anything else. And knowing you are Greek, I have to say, I think we had very few connections with Greek colleagues. I was working for a Greek commissioner, Commissioner Papandreou, when I was at the European Commission, so inevitably she was very interested in Greek institutions receiving finance, and they did mainly for my medical work. But I didn’t see the kind of Greek activism that I know is now prominent. So it’s more about the different focus. And of course, you know, our friends from Paris, they had both the kind of ACT UP approach, which was very exciting, but they also had that rather intellectual cultural studies type of legacy of Foucault for very obvious reasons because of the personal connections there. But they were very different in style. And inevitably in the UK we were engaging with the US and that was because people like Simon [Watney] had those pre-existing relationships and we have the shared language. There was some relationship with Australia but less. What I recall was that relationship with the US, New York and indeed with San Francisco. Now that I work more internationally, I’m sort of very conscious of the relationships in the Hispanic world and that was not something that was very much on our radar back in the day if I’m honest.

Nikos Papadogiannis: What about contact with Central Eastern Europe in the eighties and nineties?

Robin Gorna: So, this is where this is where our friend Henning comes into play because Henning was very focused on that because WHO Euro had the mandate across continental Europe. Whereas I was representing the European Commission and I only had the 12 member states. At that time there were no Eastern European or Central Asian members states in the EU. It was an institutional issue in that I was only allowed to deal with at 12 countries, and he was understandably focused on the larger Europe. So, we were aware of the coming changes, the challenges of the epidemic, but it was all a bit of a distant threat; it was not an obvious one. You had these two fault lines across Europe: the drug driven epidemic – the South and East; and the spectre of an epidemic of northern Europe, which was so heavily connected to the US. And those two were interfacing and also had the immigration link to Africa, also that was very nascent when I was there. The person who really led on this was Richard Rector, an American humanitarian who sadly died very early in the epidemic. He ran a superb group called HIV and Migration with Mary Haour Knipe, who worked at the UN’s International Office of Migration. They really saw the migration line and how this was going to play out, from being very much involved in the Red Cross, Red Crescent Societies, as well as the UN. At the time we thought it was all about Europe. We didn’t really understand this to be a global epidemic, because it wasn’t yet a global epidemic. It was still very much a rich world epidemic. We could see what was possibly about to break out in Eastern Europe, and Henning was always ringing the alarm bell; he’s the one who had that perspective. I was busy enough just trying to deal with my 12 countries, being the bureaucrat in an organisation that didn’t really want bureaucracy on this.

Nikos Papadogiannis: Did the discovery and circulation of more effective forms of AIDS treatment in the mid to late nineties have an impact on your campaigning?

Robin Gorna: Yes! Being in the room in Vancouver when highly active antiretroviral therapy was announced in 96, was a complete game changer. I guess the shift that occurred was personal and political. We had been fighting, as the European AIDS Treatment Group, for effective treatments. The kinds of activism I had been doing was all about that need. Prior to 96, I was sitting on advisory scientific committees writing, trying to figure out what was the best possible way forward within a very constrained range of treatment options. How could you manage? Almost like I’m doing now with my own Long COVID. We don’t really have anything now. Suddenly we have something. And then the question was, how do we get it to the right people? And also, how do you deal with people who have been pre-treated? So, my friend Dean, who died in New York, he had AZT monotherapy for many years. So, by the time HAART came along, he was heavily pre-treated, and HAART just didn’t work for him. So, there was that fight. But, of course, the global inequities became very important. And when I co-chaired the International AIDS Conference in 98 that was the first time that someone from the community had taken such a high profile and formal role. It was an honour but also it was terrifying. What became important is that we focused the whole conference around “Bridging the gap”. It was very deliberately around the fact that many of us left Vancouver (the AIDS Conference in 1996 that announced HAART) saying that while the 1996 theme was “One World, One Hope”, only one side of world will get access to this hope. And so, in the Geneva conference in 98, we were very deliberate in seeking to have a conversation about how could these very expensive and very effective treatments be made available to people who needed them. It was not a great conference, but it was a very necessary conference because without it, we would never have had the conversation in 2000 (at the Durban AIDS Conference), which is perceived as being the moment when activism shifted its centre of gravity to Africa and to the majority world with HIV. Those four years were very significant years, and personally they marked the time when I moved from being UK-Europe focused to being globally focused – and I moved from the UK to Australia and that had me then focus on the emerging epidemics in Asia-Pacific because of AFAO’s geographic location. Then I came back to the UK and stayed really focused on the global picture ever since and particularly Africa. I think many of us who stayed with our work on HIV went through that kind of journey in terms of moving our perspective as the epidemic evolved.

Nikos Papadogiannis: And simultaneously during those years, Robin. Were you involved in any political party?

Robin Gorna: Yes, I’ve always been a member of the Labour Party and just finished a piece writing about my friend Jonathan Cooper, who died late last year, whom I met back in the early days as an AIDS activist and who went on to be a human rights lawyer – fired up by his early activism. For a while we were two of the three political officers of the Labour Party branch in the small area of London where we both lived. I can’t claim that we did very much in the Labour Party, but Jonathan worked very closely with (now Sir) Keir Starmer – the two of them trained together as barristers – and so I know that Keir and others are very  sympathetic to the HIV agenda and always will be, because they saw it through our eyes in the early days of the epidemic. When I was at THT in the early nineties, we used to go to political conferences and predominantly we went to the Labour conference. So, I think Labour has always been quite involved. But you know, much of the great change in the UK occurred under the (Conservative) Thatcher Government and that is, I believe, because of (now Lord) Norman Fowler on the one hand, and also the All-Party Parliamentary Group on AIDS, which was founded in the late eighties. It was certainly always a very significant part of the work we did, maintaining a cross-party approach to HIV. And I think that’s a really good start and something we should be incredibly proud of in the UK response. Even though I have always been a Labour member, I am a really passionate believer in cross-party work and not politicizing AIDS wherever possible. I think that was important that AIDS didn’t get dragged into party political tussling. The UK has subsequently done really great stuff because Labour has taken this on board and certainly in the international field. The work I was able to do at DFID [Department for International Development] was because the Labour Party took on Universal Access to Treatment as a rallying cry, and some of the more progressive Tories fell in behind that.

Nikos Papadogiannis: Thank you very, very much indeed, Robin. I don’t have any more questions, but is there anything that you would like to add in relation to transnational contacts during the eighties and nineties and the HIV & AIDS campaigning?

Robin Gorna: Well, two things. I don’t think any of our responses to HIV would have been so strong if we hadn’t worked internationally. And I think many of the early organisations that did a lot are no longer with us. EuroCASO, (European Council of AIDS Service Organisations) for example, was a very significant and genuine network. I think all those things were very important. I think the other thing that’s important to remember is that we didn’t have Internet. You know, it was evolving, but it was slower and that meant that organising was much more personal. We had to communicate by telephone or in person. We could write to each other, but we didn’t so much. That changed the nature of some of it. Of course, it was less effective for those reasons, but also there was a sense of pulling together against something quite unknown. It also meant that there was often interpersonal conflict. I don’t think one can ever underestimate the importance of that, both the positives of the friendship and the potential relationships that were often underpinning some of that, but also the real challenges that emerged through that side of it just all being very, very personal for people.

I think you might say looking back with the current optic, and our very correct focus on race and gender and diversity in human rights and so forth, that we didn’t do enough. But I also think that might not be true, and that we were addressing these issues in a different way. It’s important to remember how the epidemic looked and was moving forward. Marc Thompson may tell you something very different, but I think that we mostly did the right thing for the epidemic that we had. If that makes sense. And the epidemic changed. It changed a lot. And I don’t think we’ve ever done the right thing for women, by the way. I think that now everybody talks about women and HIV, but we still don’t really engage with what’s going on. Throughout the history of the epidemic, it’s been a matter of women being used as a sort of a smokescreen to make it seem as if AIDS is a respectable epidemic rather than actually engaging with what women need.

Nikos Papadogiannis: I see what you mean. Well, thank you very, very much indeed for everything, Robin!

Robin Gorna: Well, good luck. I look forward to reading what you say in the end. Good luck with your work. Bye bye.