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Ep1: Where research transforms HIV treatment and prevention
Host and Producer
- Dr Rosie Anderson, Research Fellow, Public Health Policy team, UCL
Guests
- Bruce Richman, Founder and Director, Prevention Access Campaign
- Professor Alison Rodger, Institute of Global Health, UCL
Transcript
Rosie Anderson 0:06
Hello, and welcome or welcome back to the podcast where research transforms lives. I'm Dr. Rosie Anderson, and every Thursday this summer, I'm inviting you to take a deep dive with me into the UCL research that has changed the world around you. This episode is the first of a double bill that's going to look at how cutting edge medical research has transformed not just people's health, but the way we understand what it means to be healthy. They're both stories about how seeing patients as people and not just bodies, has inspired our researchers work and lead to massive changes in the health, wellbeing and dignity of millions of people around the world. We're starting this time with the long fight for recognition of the fact that if you can't detect the HIV virus in someone because they are on antiretroviral meds or AR T, then they can't pass it on to others. In fact, we've known for over 20 years that AR T can reduce that risk. But more recent studies like the one we're going to talk about today have shown for sure that suppressive AR T can eliminate HIV transmission risk completely. U equals u is a global campaign to spread that simple but revolutionary message undetectable equals on transmissible. Yet for millions of people in very different places with very different lives, the fear and stigma of the HIV diagnosis continues to affect not just their health, but everything, from their jobs, to the friendships, to their ability to love and be loved. Even sometimes their freedom. Proving something in a lab and showing it works reliably in everyday life are two very different things. To make real change happen, a huge trial was needed with real couples, one HIV positive one HIV negative. This was the challenge that professors Alison Rodger and Andrew Phillips set out to conquer at the Institute for Global Health at UCL. Thanks in part to the proof from the UCL partner study. Today U equals U has over 1000 member organisations based in 105 countries, and its message is embedded in HIV treatment guidelines around the world. I spoke with the people who made the U equals U campaign possible a pioneering partnership between Professor Alison Rodger, whose groundbreaking research first proof the science behind U equals U and Bruce Richmond activist and founder of the prevention access campaign. Bruce has been living with HIV for almost 20 years. Bruce, I just wanted to start by asking you, if I was to go back to say the year 2002 have asked you then what it meant to be diagnosed with HIV what it meant to live with HIV. What kind of things would you have told me?
Bruce Richmond 2:45
Well, thanks, Rosie, for thanks so much for having me here. It's great to be with you. And so excited to to share this this podcast with my dear friend and my hero, Alison Rodger, I just this is really wonderful. Um, so I you know, back when I was diagnosed around, you know, in 2003, it was it was a very different time. I, I didn't know that much about the treatment for HIV, of course, I grew up in the 80s and early 90s with the fear of, you know, terror of acquiring HIV and, and just also feeling that ultimately it was, it was something that, you know, everyone who was gay would end up getting, I sort of had that grew up with this internalised homophobia, and it was a very small town that was fairly conservative and un-accepting. And, you know, when I, when I was diagnosed with HIV, it was this, this sort of this double whammy of, you know, here I am, person who is, is gay and now has HIV I'm, you know, I'm I'm a failure, I'm, you know, I'm responsible and terrible I am for this, it was sort of the self hating thing. But I also didn't really know as much about treatments being available, at least in the parts of the world, higher income parts of the world. Fortunately, I was in a place where I could have taken medication that your early testing in early treatment wasn't the the common thing at that time. But, you know, there were places in the world where access to treatment was was extremely much more limited than it was today. Because like we're seeing with COVID higher income countries, were hoarding the medications, and we're concerned about how the medications would be used in lower income countries, if people would understand how to use the medication. And when people stop being adherent, and there'd be, you know, resistance. So there's this, this whole colonialist kind of greed around access to treatment that was was was happening around that time in the early early 2000s When I was diagnosed, but being that I was fortunate to have treatment I didn't I didn't want to start treatment, I didn't want to deal with being positive, I didn't want to talk about it, I stayed in the closet. And I really didn't allow myself to love. I didn't, I didn't want to love someone and be intimate with someone and have that fear. So I, I completely withdrew in until roughly nine years later, when I learned about U equals U in 2012. And my doctor told me that I couldn't pass it on, it was possible, I was taking medication at that time I just started I was, I was undetectable. And, and that changed, that changed everything. For me, it changed my my perception about my opportunities to love, to have children, to have sex without terror without this fear. And, and that really got me sort of this, on this path to want to share that with everyone. You know, now that I knew I was very privileged to know, I was connected to the medical establishment and doctors who, who were very familiar with the research at that, at that time, there wasn't there wasn't, you know, certainly wasn't the groundswell of evidence that there was, there wasn't the last the last five years. But I had a doctor who was, you know, was was sort of competent enough in his own analysis of the of the, the research at the time to be able to share it with me. And, and that's when I sort of started this crusade.
Rosie Anderson 6:33
Bruce it's a very powerful testimony, I think of, of how, you know, the world we grow up in shapes our own understanding of who we are, and of why things happen to us and what that means about us, which we all have, but this was something which was so as you again, powerfully sad it was so acute, it was so dangerous. So it was just that much more pointed. And I wondered if you could tell me a little bit more about how the world around you had shaped that. That internalised fear that internalised stigma.
Bruce Richmond 7:13
Yeah, I mean, around that time, I mean, there was still the there still is to a large extent today, the, the, you know, misperceptions and stigmatising articles in the media and popular culture. And just a lack of lack of understanding basic understanding of even how HIV is transmitted. I mean, we even today, people still are unaware that you can't get HIV from a kiss, you know, there was a recent study, and in the UK that showed 50% of adults thought that you could still get it from from kissing. So, you know, at that time, it was it was it was still considered as you know, a disease that were you know, it was what, ultimately to a tragic and horrible death. So there was, you know, if people would stay around, stay away from people who are HIV positive, wouldn't date people were HIV positive, the criminalization laws started really going into effect around that time, where people were, you know, subjected to, to lengthy prison sentences for non disclosure of their their status, even if there was no transmission and note, no possibility of transmission. Like that still continues today. So the popular culture messages and around HIV were were really, very negative and fear based, still coming out of a time in the 80s, where the government was just not, you know, responsive, and things have changed a lot, but the stigma is still enduring lack of education is still fairly severe. One study recently in the United States showed that 30% of young Americans who were not living with HIV would rather not socialise or date someone who is living with HIV. And these are young people who expect to be more, you know, accepting and kind of progressive at this younger generation, so that the stigma is still existent stigma, discourages people from getting tested stigma discourages people from getting the treatment going to clinics to get the treatment that we need, just discourages us from sharing our status. So it's something we really need to continue to work on the stigma was, was really horrendous back when I was diagnosed, but it's still continuing. And we have a lot of data to show that.
Rosie Anderson 9:49
Could we go back to that moment where you were told by your doctor about U equals U and you were finding out about this? What was the general reception of that research at the time?
Bruce Richmond 10:00
I mean, in 2012, there really wasn't the evidence base, the partner study hadn't been presented yet. I think Alison presented that in 2014. You know, there were these doctors like mine who was very well connected in the field who could, you know, look at the evidence that was there and, and draw conclusions, but there really wasn't, I wouldn't blame anyone for not talking about it in 2012. I think that, you know, they really didn't, I wouldn't expect public health authorities, like the, you know, the CDC or World Health Organisation or than any of these to have made a confirmation back then. There was the swiss statement in 2008, which was a very bold statement confirming that when someone was was virally suppressed, and didn't have any CO occurring STIs that they were not able to transmit the virus, but that was widely discredited.
Rosie Anderson 10:58
Alison, as a researcher, what led you to be doing this work and working in the space in general? And yeah, what was the evidence base that you you were building on? As we head into the 2010s?
Alison Rodger 11:10
I think I mean, it's just Bruce's made, made the reason behind the research, and the reason why he wanted to do the research really powerfully. So I think I mean, I'm sure Bruce, you'll agree that, you know, most of the best research, HIV works slightly differently to other fields, and that we all kind of work together that people with lived experience are very much involved in a lot of research. And that's how we've always worked. So we knew that this was a really important question. We knew that stigma was a major issue, and we knew that it impacted in all areas of people's lives. As Bruce said, you've got the shame and fear of sexual transmission, and you worry about telling people you get HIV and in some areas of the world, you know, you can be criminalised just for having HIV. So there's a lot of areas that impact on people living with HIV. And as Bruce said, the Swiss statement came out in 2008. And as he said, they, they basically stated these were well respected Swiss scientists and researchers. And they stated that if you were suppressed, it wasn't possible to transmit sexually. And there was a huge amount of discussion and debate and a lot of people felt the evidence just wasn't there. So we knew that viral load is the single biggest determinant of transmission risk for HIV. We've known that since 2000. But saying that it reduces transmission risk is really different to saying it eliminates transmission risk. So I think when the switch statement came out, I was chatting to Andrew Phillips, who was involved in the research, he's a colleague of mine, and we just sort of saying, if you really need the evidence to underpin the statement, because if you're going to change people's hearts and minds around this, and actually impact on HIV stigma, you really need to provide the evidence, and you're gonna need big, well designed studies to do this, that Bruce mentioned was, you know, it was the landmark study in this field, which they broke the bind of the study, and 2011, because they could see the impact, and there's a 93% lower risk of giving your partner HIV if you're on treatment. But that's not U equals U. That's not 100%. And also people used condoms, and there was very few gay men and oh, five, two, I think there was 33 couples wasn't their Bruce out of 1800, or something. So we really very much felt that there was a role for the partner studies, but we're going to have to be really big, really well designed studies to get the answer to this to be able to convince not just people living with HIV, but the general population. I mean, the study Bruce talked about about teenagers still thinking you get HIV from kissing is quite shocking.
Rosie Anderson 13:31
Yeah, I mean, what you're talking about is doing a study that will change a culture, aren't you? Really, when when when you put it like that, that's a huge burden of proof. You've got to have a really, really, you know, watertight, and really, really comprehensive study that is going to be able to shift that mountain. I wonder if you could describe what you designed them in order to be able to respond to that challenge. What did the partner study look like?
Alison Rodger 14:04
Yeah, we were, we were basically interested in what was the risk of within couple HIV transmission through sex when they didn't use condoms. And when the positive partner was on what we call suppressive antiretroviral therapy, so that's when they're on treatment for HIV. But it suppresses the copies of virus in their blood to what we call undetectable. And that threshold can vary depending on your lab assay, but we use less than 200 copies and that's well established. That's a threshold. And we didn't want to do a randomised control trial because you can't randomise people to use condoms or not. So what we did was called an observational study. So phase one, we recruited different couples that were gay couples and couples that heterosexual sex, and that was the first four years from 2010 to 2014. And then the second phase we just looked at gay people, with different couples up to 2018 and as we said, we presented earlier results 2014 And the final phase one results 2016 made about 550, or different heterosexual couples and about 350 gay couples. And there was no HIV transmission within couples. And we know that because we looked at the linkage, the viruses. And that was despite, you know, having sex 58,000 times without condoms. So we got to the end of that, overall. So we got to that study. But what you have to have, just because you don't find any transmissions doesn't mean that it can't occur. So what you do is you have to look at the precision of your estimate, you'll get your confidence around that estimate. And so for people having heterosexual sex, because they were more of them in the study, we were much sure of the result. And it was something like, you know, you'd have to have condomless, sex for 150 years, to have the outside possibility of one transmission. So that that's that was effectively the study done, but we just didn't have the numbers of gay couples in the study to provide the same level of evidence for gay men. So that's why we kept going.
Rosie Anderson 15:57
I was thinking actually, as I was listening to you discussing the representation of of the participants in that in those studies, particularly the ones that had come before yours, some people who are listening to this might find it surprising that there was an under representation of same sex couples, and particularly men who have sex with men, and why that might be and then how you went about engaging the community in that recruitment process?
Alison Rodger 16:21
No, it's a great question. So when we set up the study, we the question came from the community. And we had two people with lived experience who were HIV positive on the executive committee, who very much advised us throughout the whole thing, setting up the study and recruiting. Obviously, when we set up the study, the first phase in 2010, the research wasn't there, you obviously go through ethics committees. And we very much had to make it clear that this was a transmission study. And we recruited people who've chosen not to use condoms, and we just observed we collected information, we did blood tests, on both partners, when the negative person to make sure they were negative, and the positive person to look at the viral load. They didn't use condoms, they didn't use prep, but these are people who had chosen to do that. And if you think about it, we spent 20-30 years saying to people, you must use condoms. You know, HIV is highly infectious people had a lot of, you know, self perception of stigma. It was just very, we knew it was going to be a challenging study to recruit to. But you know, we just, we very much used the community to publicise the study, people wanted to come into the study, you know, we were very welcome. It was a very sort of light touch study, it didn't take a lot of time or a visit. But it took a lot of time to recruit people. And so at the end of phase one, that would that was the grant funding that we had. And so by the end of it, we just knew we hadn't got the answer for gay men, we had to provide absolutely rock solid evidence. So I got another grant. And we continued with gay men for another four years. And that's what gave us the partner two results, just in gay men. And basically what that showed was, we had about 800, couples by that stage. And overall, they had sex without condoms, 36,000 times and again, no link transmission, some of the negative partners did become positive. But by looking at the virus in the negative partner who became positive and the positive partner treatment, we could see that it came from outside the relationship. So that was really it. You know, it was a massive, massive study, the precision around the estimate was really tight. And so we knew that was it, that was the end, there was zero risk, and to be able to say that, as a scientist, you know, to prove a negative is quite something. But I think we got there. I think you agree, that risk that I think the partner study was the tipping point, wasn't it? In terms of our approach to messaging and belief about U equals U and that was it. And I think the shift happened, didn't it? That it actually just became accepted? I think it was Matthew Hodgson, he's got such great quotes doesn't mean where he talked about. He does do to, you're amazing. But Matthew, I think you said that 2018 would be forever remembered as the conference when U equals U moved from an activist rallying cry to the scientifically established position. And I think we all felt that didn't we.
Bruce Richmond 19:02
2018 is what we needed as as the U equals U movement. We, we had been, you know, fighting for people to say this and talk about U equals U clearly, and we were still at that time, in 2018. We had we had people threatening to sue the campaign, because they didn't, you know, believe that they thought we were saying something that was harmful and not science based. We had a journalist who was coming after us from every angle to kind of disprove that, that we were, you know, the campaign and also to say that there was there was still a risk there was there's no residual risk in science we'd hear people say, so when you took the initiative, and we're so proactive to integrate the U equals U messaging to be clear in every aspect of you know, the Press, release the press conference, the journal article, and then saying from stage in front of 1000s of your peers that it's very, very clear that risk is zero. And at the time for excuses is over, that was a major shift in the history of the epidemic with those words that you said, you know, the time for excuses is over were, were taken to the streets in Kampala and a march and they were in campaigns in Australia, and in Spain and all the you know, so that act of, I would say, it's tremendous courage to come out. And in particularly saying zero risk, the risk is zero in a field that is pushing so hard against the concept of of zero risk and is stuck in, you know, statistical origami around it, and you made it so, so clear. So we, you know,
Alison Rodger 20:44
you're very first but I'm just a foot soldier, I just did the work and find out you're late. You're the ultimate communicator?
Bruce Richmond 20:54
How often do activists, you know, we appreciate people who have pictures of you on their profiles of, you know, you do, they're so proud to have met Alison Rodger, or just your photo op, and, you know, using your quotes around the world, in their advocacy, to, you know, to get the truth out about our bodies. So I think people, you know, the, the impact of, you know, your, your, the science could have just stayed on the shelf? Really? I mean, it really could it could,
Alison Rodger 21:22
it didn't just because of the way you did it to, you remember at the end of the conference, I think for both of us, that was quite an emotional conference, wasn't it? And presentation? Because it was it was it was just shifting into that scientifically established and and we both knew with research, and then you asked that question, at the end.
Bruce Richmond 21:38
the conference was, it was a World AIDS conference. So this is the conference where a lot of the community is present. It's not just the research conference, but it's certainly the most, you know, important AIDS conference in the world that happens every two years. And so we had, a lot of our activists were there from from many parts of the world. And you know, these are, these are people who are, you know, risking their personal professional reputations, and sometimes their lives to talk about U equals U, we were there. And still still in the midst of a lot of fighting, we knew partner was the big buzz at that conference. And, and the in all of us were, were really anticipating on the edge of our scene of how this would be presented, you know, it was surreal to cure, Alison, talk about how the science validates you equals you during the press conference ending on that, and being so clear, and and then on stage in front of 1000s and 1000s of people in front of her peers, you know, who are you No, a scientist in front of the community, to be so clear and say that, it's very clear the risk is zero. Time for excuses is over, was it was almost out of one of those out of body moments. Is this, is this really happening? Or did we? How did we get here? It was, you know, I showed that video of our conversation. You know, I went as I asked, Alison, what would you say, to health care providers who are still withholding this information, her response was absolutely unequivocal, that this we have to promote this, it's very clear that when someone is virally suppressed, or sexually noninfectious, the risk is zero. And the time the time for excuses is over, she repeated that. And then she acknowledged the campaign from the stage and this led to having a researcher acknowledge, you know, a movement led by people living with HIV meant so much to so many of us who, you know, this is this is a very radical movement. And we that validation was just, it was, it's hard to even explain, I don't have the words to explain how important it was. I usually cry when I show that video presentation.
Rosie Anderson 24:04
Alison, what, what is it like as a researcher, but just as a person, to know what, what that means to so many people,
Alison Rodger 24:16
As, as a researcher, as an academic, and as a clinician, you, you just try to want to make lives a little bit easier for people who are living with HIV, and it was such an important question, and we have got the answer that we needed. And you suddenly realised I think that's really Bruce, when you and I really started trying to think about how we could get the results as wide as possible because you saw the impact. And it was really, it was really hard, wasn't it in presenting a scientific conference, which can be quite staid, I presented the results and then people stood up and clapped. And they were the activists and you suddenly realised how much this meant to people. And I think I made it through to the end of the presentation. But it was just the knowledge and even now when I'm in clinic, even Now, you know, that was 2018, four years later, and you know, you meet someone for the first time, they usually talk about U equals U, you know, if I diagnose another new patient, or you know, I haven't seen them before, and so many people still don't know. And you still get people crying in clinic, because it's like this weight is lifted, isn't it? Bruce? It's just, yeah, it's remarkable. And I think, yeah, I just feel a bit a bit lucky that I was involved in this. And actually, you know, we got the result that we needed. And that was really thanks to all the 1000s and 1000s of couples as well, who came into the study, it was a big study
Rosie Anderson 25:32
Well it's a very powerful story of how, you know, that relationship between researchers and the community can bring about remarkable things. I think I want to just pick up on something because I'm really keen to talk about the campaign actually, in about how you have worked together, because I think lots of people find that very interesting. It would be quite surprising, perhaps, to some, to hear that, even though there was this increasing body of evidence behind you equals you that you needed to say, you know, the time for excuses is over that, you know, this this information should be made available. And that it, it implies it wasn't. And I want to just talk a little bit now about, yeah, the campaign and the political, the political side of this. Why weren't health providers? Why once clinicians or, you know, governments being bolder with this, why were they holding back? And you alluded to this a little bit, Bruce before? And how did that inform how you two work together going forward? Well,
Bruce Richmond 26:41
I was told very directly by folks in public health and head of a very large clinic in DC, which they'd say, no, look, we we believe U equals U is true. But we don't want to share it with people. And there are two reasons number one is that our patients will stop using condoms. And there's already a rise of syphilis and resistant Gonorrhoea and all these concerns about STI. So that's number one. Number two, we're worried that our patients who lose their health insurance or stop their medication, for some reason, will think that they're still undetectable, and then they'll transmit HIV. So number one, lie to people so they don't get another STI. And try to control their behaviour instead of educate them and let them know that you know that being undetectable doesn't prevent other STI. So number one, is sort of the social engineering and control people with HIV, rather than giving them the information that they we need to make our own health decisions. And then number two, was people with HIV are just too stupid to understand what u equals u mean. So as health educators, let's just give up and not tell them. The other area, which I really think that Alison had the most to do with she sort of put this to bed was the the not believing the science. Now we can, you know, point to the evidence, particularly, you know, really the partner study showing that so it's, it's but the paternalism still continues. So what are you seeing because you speak with clinicians?
Alison Rodger 28:12
Yeah, no, I do. I mean, I think I think I think the issue is that scientists and clinicians are kind of trained to be cautious, aren't they? So they usually need to be completely super convinced by any evidence before making sort of factual statements. And I also think you're absolutely right, Bruce. I mean, people were placing moral value and data, which is not their job. I mean, the job is just to communicate how robust the sciences, but I think there was some key opinion leaders, weren't they Tony Fauci was great. You know, once Tony Fauci started saying concept of vehicles use a foundation to end the HIV epidemic, you know, CDC shifted, and it was just always these incremental steps wasn't really sort of based on your, your drive to get this out. And actually just there were a couple of key moments weren't there? And I think particularly Tony Fauci was pivotal in this.
Rosie Anderson 28:58
How do you work together? And and obviously, it's not just you two, but how do you work to translate those scientific findings into things that can be used by a policymaker? Or, or, you know, a health services planner, or indeed somebody living with HIV? To take Tony Fauci, for example, how how did that come about that he had the evidence in front of them from you?
Alison Rodger 29:31
I mean, the presentation 2018 And then we did the lancet publication 2019 I think we really thought about how to maximise impact French and access campaign were involved and UCL and different organisations and really trying to blitz media, I think for 24 hours, it was global wall to wall wasn't it? And I certainly got asked to give a lot of media presentations and the reason I could see it was successful. This is just my small aspect was actually I was being asked to talk on television channels and radio channels that were really nowhere near this world. And you know, people phoning in who had never heard of, of this and who's really view of HIV was stuck in the 80s. And it was really just trying to, obviously, it's really important for people living with HIV and partners and the community, but actually just trying to get it out into the general public just trying to de stigmatise HIV. And I think that was really important, as we obviously, Bruce is amazing. And this, he has really enabled all of the things to happen, including Tony Fauci. I think Tony Fauci being a scientist, I think having the level of evidence he could understand and he could see, and he was very happy to make the jump with, you know, to the risk of zero. So I think I think the evidence, you have to have that in place, and then Bruce, and prevention, access campaign, communicating and really just persevering against quite strong opposition. And then you just gradually people tip and all of a sudden, a few years later, it's it's generally accepted. That the way I work, I mean, I only do what I can do, I talk about the science a lot. I talk anywhere that I'm asked to talk and go through the science because I think if people understand how robust it is, then I think people have confidence. The British HIV Association, I've done a lot of work in terms of how to communicate it. Michael Beatty, who's head of THD has done a lot of work in terms of you know, how to communicate with people living with HIV. So there's a lot of people in this field, and we're all just trying to do what we can. And I think that's fair, isn't it?
Bruce Richmond 31:26
Yeah, I think that's, that's really well said, and, you know, I can I can't talk about the science and that sounds a bit self interested, as someone with HIV saying I can't pass it on. But when you have such a brilliant scientist speaking and being able to explain, and bring that credibility, whether it's to policymakers who need to know, about u equals u, if they're deciding to allocate funds, for access to treatment, or other kinds of services, that help people with HIV stay healthy. The policymakers need to know that when people with HIV are healthy and undetectable, we also can't pass it on. And that's science, that's, that's a great public health strategy, it's so effective to go to a whether you know, to, whether you're talking to HIV clinicians, or just to community members, or to government officials, you know, we need that credibility to show that the science is real, and that they need to make decisions about informing people with HIV about u equals u or, or encouraging clinicians to talk about it, or expanding access to treatment and care that the science is real.
Rosie Anderson 32:38
what I'm, what I'm hearing is that, you know, it's sort of like, I don't know, two wheels of a bicycle, if you want to put it that way that, you know, these are two different types of expertise. And they come together, you know, the lived experience and the scientific knowledge come together to create a really powerful message, I want to just finish up by asking about how you take that global, because, you know, the lived experience of people living with HIV is such a massive part of why campaigns like yours are so hard hitting where they are so credible, as well as there being the strong partnership with the scientific community. But obviously, you know, the message and the messenger are so entwined when it comes to HIV, campaigning and access to treatment, and all the rest of it. And actually the stigma as well, which we started with. And that looks different in different places. So I would really love to hear about how you equals you and you Alison, you know, on the global stage, how you translate this work across different contexts, how you engage with people living in very different places, living in very different society sometimes,
Alison Rodger 33:51
Bruce you're the one to answer this. I mean, you you can communicate effortlessly across but it's also involving people with lived experience in different communities, who can speak successfully to their own, but I think it's a universal message. And it's so simple. But so sort of liberating for people who hear and understand that I'll hand over to Bruce because he is the master communicator.
Bruce Richmond 34:11
Well, I first will say I my quotes have not been going around the world as I have. So I write back after your thank you for that. And also I really have to credit Gus Kerr and the journalists from from AIDS map who brainstorm the whole concept of u equals u with me in February of 2016. Yeah, it's exactly how Alison was saying is that it communities really are translate the message so we work with people on the ground, the campaign is now in 105 countries. And we we've we've now actually worked in 28 different countries, still a lot many more to go with, with organisations on the ground to help them you know, understand the science and to translate the science into ways that work with their particular culture. So for instance, in some places where there You know, it's very religious and conservative, they don't really talk about sex, they talk about babies, and they focus more on the story about people can have can have babies and that children, you know, conceive children, we say, focus on the policy aspect of the prevention access is when people are on treatment they can't, you know, are passing it on, it's kind of like understanding who are the right messengers, there's in Kampala, Uganda, the government said this was a campaign that was pushing the Gay Agenda, and was run by, you know, white gay people. So we really stay away from doing presentations in Uganda. And we make sure you know, until it's really about having the right, the right messengers and partners on the ground, who are really the experts and in translating the science in ways that will be understood by the communities they serve,
Rosie Anderson 35:54
I'm going to ask you about what your hopes are for your work together in the future. And if there's any words of wisdom that you can pass on to anybody who's trying to follow in your footsteps, about how to have an impact in this way.
Alison Rodger 36:12
I think as I said, at the beginning, it's listening to people with lived experience, you know, what questions matter them, I think that's why I've always been a sort of clinically active researcher of law base, which is obviously hugely important, but it's understanding the issues and questions that matter to people. And that makes you research relevant from the outset, and also involving people living with HIV and your research from the very beginning. And then the one thing I've really learned from Bruce is thinking about how to maximise the impact of your research. You know, it's not just about the science, it's actually about the impact or the benefit for people living with HIV. And I guess the final word is find a Bruce makes your communication a lot more effective and a lot more fun.
Bruce Richmond 36:51
For us, it's finding your champions in unexpected places. My old sort of activist mind, you know, wouldn't think that a cisgender, HIV negative woman, white woman, from Scotland, living in England would be such a tremendous champion and an ally, and have such an impact on on this global movement. And I think, you know, knowing how to how to cross over to find and hold on to those allies who had had to make those bridges between activism and science, we need, we really need each other. And you can see from the really the impact of this, the relationship between between Alison and the movement of u equals u how much how much the world is changing, and will continue to change it together.
Rosie Anderson 37:47
Wonderful. Well, thank you both so much for your time and for sharing your story. It's really inspiring and very moving. And it's been an absolute pleasure and a privilege. Thank you.
Alison Rodger 38:01
Thank you, Rosie, for asking us. It's been great to talk about this.
Bruce Richmond 38:05
Yes, thank you. Thank you. It's really wonderful to be here. I can keep talking all day.
Rosie Anderson 38:09
That's all for now. I hope to see you next time where I will be talking to oncologist Professor Jayant Vaidya about what inspired him to create a one shot breast cancer radiotherapy machine. If you can't wait until then, want to hear more about the impact of UCL research on society in the world, then why not take a listen to Made at UCL presented and produced by our students. Finally, I want to thank Professor Alison Rodger and Bruce Richmond, our guests, and of course you our listeners
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