Jeff Galvin: Pleasure's all ours. You have a remarkable background, of course. You know, 30 plus years of advocacy after finding out at a time when there wasn't even an effective treatment available for HIV that you'd been diagnosed with HIV. And I would love to just, um, if you don't mind me diving into a little bit of the details about when you found out and what inspired you to just go public in the way that you did and to help other people, you know, sort of recognize the realities of HIV and to act intelligently within that environment. And also, it just seems like there have been so many changes when you think about 31 years, what it means to be diagnosed with HIV and how it has gone from a death sentence to a treatable disease, and most of the people I talk to say, 'Okay, you can live a full life with it.' But I'm just amazed. You know, okay, so here you are 31 years later, looking great, by the way.

Emma Cole: Thank you very much.

Jeff Galvin: And doing amazing stuff that we'll get into, but can we go back to those first days and tell me?

Emma Cole: Yeah, sure. I mean, obviously, I was never considered a person at risk of HIV, so I thought. You know, I grew up in the 1980s as a teenager seeing reports of this new disease, AIDS, but it seemed then to very much affect gay and bisexual men, injecting drug users, people with hemophilia. So, you know, I was, 'No, no, no, not going to affect me.' And although I'd picked up the safer sex message while at university, I never really thought this is going to have an impact on my life. In fact, the only thing I thought I'd do was probably volunteer to help people with HIV, bizarrely. 

And I'd met someone at a concert, just a random sort of, you know, eyes crossing room sort of meeting, and we started dating. And when we started to have a sexual relationship, my biggest concern was pregnancy. So, I'd asked Ian, 'Look, I'm not on the pill, so will you use condoms?' And he just readily agreed, and I thought, 'Oh, what a relief.' Then, on one occasion, a condom failed. So, I thought, 'You know, a bit of an inconvenience, but I know about the morning-after pill, no big deal.' And it was only at that point he disclosed he was HIV positive.

And, of course, my first thought was, 'You can't be. You look normal,' which is quite horrific to think I thought that way, but my only image of someone with HIV at the time had been very sick patients in hospital. And I was in bed with, quite frankly, a drop dead gorgeous guy, so you know the head didn't quite compute. 

And it was only when I spoke to an AIDS helpline that they said, "Well, you do realize that that's potentially put you at risk of infection." And I was absolutely clueless, I had no idea. And so I was told I'd have to wait three months before I could test, and I went for the test and they told me it was positive. 

I just still, even now, can't quite believe how unlucky I was to get infected from that one incident. And people often say, "Well, how can you be sure?" And I said, "Actually, before I met you, I was a regular blood donor here in the UK, and of course, they test after 1985, they always test for HIV. So it was actually probably, I think, a week before I'd met him that I'd done my last blood donation, so I could be absolutely certain I hadn't contracted it any other way before then." 

And so yeah, so I got my diagnosis on September the 11th, 1991, and I was newly graduated, 22 years old, about to start my life, and suddenly it felt like it was gone in about three letters, you.

Jeff Galvin: But remarkably, it wasn't gone. In fact, you were inspired to be open about your situation and start to advocate. How long did it take you to kind of come around to that thinking?

Emma Cole: Within a matter of months, because obviously, I suddenly thought, "Well, hang on, it can happen to anyone. If it's happened to me, it can happen to anyone." And the sort of messages weren't reaching people like me that we could be at risk of HIV. 

And so I saw a potential to say, "Hey, hang on a minute, it's not just these particular risk groups, it's anyone who's sexually active potentially." And I got straight involved with a charity called Body Positive in London. And they actually had a youth group, Positive Youth. And often, schools would contact the group, saying, "Have you got any young person who will speak about HIV?" 

Now, here in the UK, at the time, we were just coming out of the previous legislation called Section 28 that stopped the promotion of homosexuality in schools. So I was always seen as the sort of safe option to send in, rather than a young gay man with HIV. So that's how my education work started, by default, really, because I was seen as a safe option, not what anyone would expect, etc. And being only 22 at the time, I was literally a few years older than the people I was speaking to. 

So that's sort of how I threw myself in. And not just the education work, I was volunteering on the helpline that they had, I was running a women's group, I was just, I threw myself into the HIV world because I figured, "This is now going to be my life." And quite frankly, had I not had that original support from the gay men who'd gone before me, I probably wouldn't have survived. So, you know, I owe an awful lot to the sort of history of the epidemic in the UK and the people who went before me.

Jeff Galvin: Yeah, no, I think that's nice of you to do a shout out like that because I think the gay community frequently is like the canary in the coal mine. We're seeing the same thing with monkeypox, something that anybody can get, but, you know, they are actually dealing with this early on. 

And if we can throw away our prejudices, we can learn a lot, we can help them, and we can help ourselves. We're all in the virus game together, so good message to have on the Cure Chronicles. But tell me a little bit about, um, I do find it fascinating that they were reaching out for educational, uh, sort of options for students at that time, and I do understand why they targeted you. 

Emma Cole: Well, I suppose at the time, you know, we'd had the death of Freddie Mercury, um, Princess Diana shaking hands with an AIDS patient, and the late sort of, you know, it was five years before my diagnosis…

Jeff Galvin: …and the AIDS babies and…

Emma Cole: Yeah, so, so that, you know, I think Freddie Mercury died a couple of months after my diagnosis, so there was a lot of sort of attention again on AIDS at that time. So, I suppose it just followed from that that schools within, you know, probably getting asked by students or why, you know, we want to learn more about this, and um, so there wasn't that many people in the, you know, 1991 speaking publicly. Um, I would say I think I was just considered that the person who people would relate more to because if they'd sent a young gay man in, you know, a lot of students would have gone, "I'm not gay, so it's not my problem," whereas a lot of them could see me and go, "Oh my God, she could be my sister or my mum or whatever."

Jeff Galvin: And even the gay people could relate to you, right, because they were more… Yeah, I understand the effectiveness of having somebody, a spokesman, person like you, but I'm kind of surprised because I see a lot of people burying their head even today in the sand over HIV's existence, right? If you're not dealing with it, you don't want to hear about it.

Emma Cole: But even in the UK, I mean, obviously, I have got a far quite wide reach now, but you know, there are still pockets of the country that I've never visited, so I'm hopefully hoping that means there's someone else doing the work in those areas of the UK, but you know, there will still be communities who have absolutely no idea, and I think the problem is a lot of people, if you're working in HIV and you're in the community of people with HIV, it becomes quite insular, and you don't sort of out if the ripples out don't really get that far, whereas hoping doing the school work, you know, each person that hears me, they might go home and talk to their parents about it, and many do because I've had emails from parents thanking me and stuff, um, you know, and I think that's the way to reach the general public rather than a campaign that might be shared amongst people with HIV but not any further.

Jeff Galvin: Yeah, I remember some of the initial ads about HIV in New York and stuff, and they were so frightening that people just turned away.

Emma Cole: Yes, we have the tombstones and the icebergs and you know, it was terrifying.

Jeff Galvin: Yeah, I so, um, what was your initial message like in, in, you know, again, again, back then it was really different than it is today. I think you know, I can imagine what you would say to them today, but back then, you know, what was the message that you were carrying? What were you trying to educate these folks on?

Emma Cole: Well, in the early years, I told my story but also said, "Look, you know, I'm preparing to die. I've bought my coffee and I've planned my funeral, that's what I'm looking at." Yeah, I was going to funeral after funeral after funeral, so there wasn't much hope in those early years. 

Also, I didn't have any long-term survivor role models, so there was no one I could attach to and go, "Oh, look, they've lived 20-30 years, that's a goal I can aim for." So in a sense, I had to be my own role model. 

It was still very much then about educating about the myths and misconceptions that you can't get it from shaking hands, all of that sort of stuff, which I still have to say today to some students at the very basics because people don't understand still.

Jeff Galvin: It's valuable then and still valuable now, right. 

Emma Cole: Absolutely.

Jeff Galvin: It was so isolating to have HIV and back then it was probably even more so, right? A lot of people decide not to be open about their status because they're afraid of how people will react to it, and then you go back then and the fear factor was just ratcheted up tenfold. It was a deadly disease and nobody understood that you can't get it from kissing, shaking hands, any of that stuff. As a matter of fact, it was highly unusual from one exposure that people would get HIV, yeah, right.

Emma: In hindsight, I now know that Ian was probably very infectious at the time. Obviously, we didn't have viral load testing then. He wasn't on any medication. He died within 18 months of my diagnosis, so I think probably he had been positive for many years before I knew him, so we can probably was what we'd now say he was an AIDS-related diagnosis. But obviously, I was clueless at the time. I knew nothing about the HIV world, so I got thrown in at the deep end and a very sharp learning curve.

Jeff Galvin: Yeah, you managed to tread water very effectively and start being a positive voice, right. So, you talked about your first decade. The second decade, you start seeing effective treatments where it becomes…

Emma Cole: Well, yeah, I wouldn't say effective for me, sadly. My first experience of treatments were horrific. For my very first cocktail, I suffered an allergic reaction to one of the meds, so I was hospitalized within 48 hours. I went through various cocktails in the first two or three years and eventually actually went, "You know what? The side effects are too much for me. It was always about quality of life, not quantity."

So back then, I was like, "I'm stopping." So, I actually did a roller coaster of on-off treatment for a decade, and it wasn't really until probably 10 years ago now that I really committed to doing the treatment again. That really came about with the U=U message, because I figured, "I've now got a reason to do it properly."

Jeff Galvin: It's kind of amazing to think that when you're well-controlled, you can't infect anybody else.

Emma Cole: It's still, I think, one of the biggest game-changers in my life as a positive woman. I was in a school this morning and I was saying it's really hard to articulate just how terrifying those first 20 years were as a sexual person with HIV, knowing that I got infected from one accident. And although I knew it was harder for a woman to transmit to a man, the fear was always there. You can have wonderful partners, but if you have that element of fear of transmission, you're never going to be fully relaxed in a relationship.

Now that fear is completely gone, and it's quite remarkable that I've lived to see that. 

Jeff Galvin: Yeah, I think most people watching this program understand what we're talking about here, but you know, once you're well controlled on antiretrovirals, your viral load is so low that you literally cannot transmit it.

Emma Cole: Zero risk of transmission. 

Jeff Galvin: So lovers can, you know, be completely forgetful of their status, and have normal relationships and make those sort of decisions for themselves without thinking about the fear of transmitting it. Which I think is, you know, in the heads of people that are caring, empathetic human beings, the fear of transmitting it was a big deal, right?

Emma Cole: Obviously it had a massive impact on, well, not just sexual life, but, you know, just your sense of self and your self-confidence and all of those things of like what if something goes wrong? What if, what if, what if? 

And just as I say, it felt when the “U equals U” was sort of endorsed globally, it just felt like a massive weight gone off my shoulders and, uh, you know, I'm so blessed that I lived to see that and I have access to treatment. Of course, you know, I am in a place of privilege here in the UK. I get those meds provided to me on the NHS. But, you know, of course, with the global health inequality, we know that's not the case for everyone. 

And that's still a frustration of mine that, you know, there are similar people to me in another part of the world without access to these treatments. And yeah, there is more money than sense to give away.

Jeff Galvin: Yeah, no, I love the way you think about it. I think, you know, this is a deeply human quality. It's one of our most precious qualities, is that we can empathize with other people. Yeah, you know, even from other countries with other backgrounds, whatever, and you can think about, you know, regardless of all the stresses you have in your own life, you could still think about somebody in the Philippines who can't afford the drugs. Right? I mean, because I, in my position, I get emails all the time and I realize about just what you're talking about, the health inequality. 

And there's no, you know, there's nothing that one person can do, but I think long term, you know, if all of society cares about this, it would be wonderful to be able to spread, you know, some of the relief that in first world countries, you know, we're able to enjoy in HIV to everyone that is carrying that, and it would be good for the world too.

Emma Cole: Yes it would.

Jeff Galvin: It’s not just that it’s selfish and long term selfish to want to get rid of HIV, because it is indiscriminate, we know this in terms of who it infects, and it spreads all over the world, and so we need to actually get rid of the epidemics overseas to help control the epidemic that we experience at home. So yeah, I’m really glad to hear you talk about it that way.

Jeff Galvin: So, tell us about your third decade.

Emma Cole: That was sort of really when life took off, I guess. Um, yeah, I see, I mean, every, I say I was originally given 10 years, so when I reached the 10th anniversary, which sadly did coincide with 9/11 in your country, so it just made me realize that just as my diagnosis changed my life in an instance, you know, anything could do that to anyone, and so I sort of committed from the 10th anniversary onwards to just see every day as a bonus. 

And, you know, I do still live each day as if it's my last, not quite, but that sounds a bit too hippy, doesn't it? 

Jeff Galvin: But I think we get the point, though, right? It's about gratitude for what we do have.

Emma Cole: And also because so many of my friends from that first decade aren't here today to benefit from treatments. And you know, even when I've had moments where I've just thought, "Oh, it's all too much, I can't carry on," you know, I've realized that it would be so disrespectful to those that I lost to give up now. So that's whenever I have one of my moments, I kind of go, "No, you know, you're here for a reason, you've got to carry on." 

And this last decade I would say has been one of the most positive in terms of finding my feet with my own business and working and just seeing life very differently now.

Jeff Galvin: It's very pleasing when I talk to advocates who have lived through this arc or similar arc to yours that you know they feel like they now have a relatively normal life, a full life, and that HIV is just a small part of that like any other thing that we have to deal with. And again, that message of gratitude that we have these medicines available in our countries is a good one.

I'm blown away as I look at your website, which is called Positive Voice - Emma Cole (positivevoice-emma-cole.co.uk). I was looking through your site, and I think it's a great site with good information, and I like the links that you provide for people as well. I think it's not a bad starting point for anybody who might have been recently diagnosed. What really stood out to me was just the number of high schools that have signed up to have you come and speak to the students, and then also all of the positive reviews that people were so grateful to get that information.

You know, I experience a lot of resistance in the United States, or witness a lot of it, where people just want to bury their head in the sand. I mean, look at how the United States reacted to COVID, right? A full 40% of people just want to deny the science behind it. And of course, maybe back in the 80s, that's the way HIV was too, right? That's some of the misinformation that spread, that oh, this is just a gay disease, and you don't have to worry about it. That, to me, is tremendous.

Tell me about your messaging today when you go out there talking about something that they found not just inspiring but almost humorous, like they laughed and cried with you. That is performance art. I mean, you know, that's amazing. What are you selling to these kids?

Emma Cole: I take them on my journey, and you know, HIV is a roller coaster. You have your highs, you have your lows. So what I like and what most schools now do is they don't tell the students in advance that I am positive myself. So the disclosure after about 15-20 minutes is a sort of real, "Oh my God, you could hear a pin drop" moment. I start by talking about Ian, my partner who died, so they assume it's going to be his story, and then I disclose. And you know, I share all the basics about what is HIV.

There have been some really difficult moments. I share about my family's reaction, I share obviously about Ian dying, but then I share about you know, I got to kiss Bruce Springsteen live on stage. So you know, there's good bits that came out of this, not just the dark side.

Jeff Galvin: Okay, you can't just say that and just jump right over that. Uh, okay, so how did you come to kiss Bruce Springsteen on stage? 

Emma Cole: Well, this is a tale of hope and prayer, really. In 1999 was when I was first hospitalized with HIV-related illness, and Bruce had announced a tour in New York the next year and was playing Madison Square Garden on my birthday. So, I literally had a friend say, 'You're not gonna die. I'm gonna get tickets, and we're going to go to New York.' 

Well, of course, at the time in 2000, the U.S had a ban on people with HIV actually visiting, so…

Jeff Galvin: I did not know that. Oh my gosh, I didn't know that, yeah, 

Emma Cole: Under, I think it was Reagan brought it in, and unless you applied for a special visa, you couldn't visit America. 

Jeff Galvin: Still in 2000 it was like that? 

Emma Cole: It was still in place. President Obama, when he first got elected, overturned it. I don't know what year that was. 

Jeff Galvin: Okay, I can't believe that I did not know that. That is remarkable. 

Emma Cole: So I technically broke the law, but don't grasp me up. Um, and I got to America and saw Bruce on my birthday, and I was in New York for four nights, and on the final night, I queued from four o'clock in the morning to get a ticket, got a ticket, and I was in the front row behind the stage, the end seat, and it was the row where the night before, the girl had got the kiss. So, I knew that I was in the right space at the right time, and I would get my kids from Bruce live on stage. 

Jeff Galvin: Wow

Emma Cole: And I am a massive fan. I've seen him 69 times in concerts, so you can imagine I flew back to the UK on my own wings.

Jeff Galvin: Yeah, oh yeah, for sure. Well, Bruce Springsteen, I mean when I was in college in the 80s, he was the biggest thing ever. That's one of the few concerts like I can remember like it happened yesterday. Yeah, yeah. Cool story, cool story. I'm sure there are a lot of jealous women.

Emma Cole: Well, I mentioned it always in my talks, because then like someone said, 'Well, you know, could Bruce have got HIV from kissing?' It's like no. You know, I use it as an educational moment. And you know, as I say there's always humor in the talk, because I think I could give a very dark, depressing version of my life with HIV. But then the kids would go away and think that's what HIV was like today, whereas you know, I like to give some hope. I like to give people an idea of just how much I've lived to see in terms of change. 

And obviously, the overwhelming reason I do my talks is to challenge the stigma because that is still the biggest hurdle we have to overcome. You know, they will say medically, HIV is a manageable illness, treatable, you know, you can live a normal life expectancy. But if you've got that stigma, the shame, the discrimination that's still existing, that's what stops people seeking treatment, stops people engaging in care, and stops self-care as well. So, you know, I just feel that if I can keep banging my little drum, there will be a change of attitudes over time.

And I'm very fortunate because I've been doing this work in schools for 30 years. I now meet teachers who heard me when they were pupils, and they still remember the talk. So, you know, if you imagine they've sort of, you know, 10-15 years from their time at school, and they're still remembering me, that's, you know, I think I've done a good job. And I remember once, I was leaving (I'm a big soccer fan, football here in the UK), and someone tapped me on the shoulder and said, "I think you spoke at my school." And I said, "Oh, where do you go? Where did you go to school?" Or, "No, where do you teach?" Because he was an adult, and he said, "No, it was when I was a pupil," and he still remembered and recognized me all these years later. 

Jeff Galvin: That's a nice feeling. Yeah, it really is. Making a difference is a very fulfilling thing. I think that's one of the things that drives our mission around AGT is that we're so hopeful to make a difference in other people's lives, and you've made an impression on thousands and thousands of people, you know, just by, you know, one auditorium at a time. What a wonderful…

Emma Cole: Absolutely. And you know, I worked out in lockdown the number of schools I visited and, you know, the average pupil per audience, and it's about 350,000 young people now have heard me speak. So, you know, that's a lot of people to get the correct information, to challenge the myths and the stereotypes, and you know, and hopefully, and it does make a difference. I remember actually meeting a positive woman who realized I was the woman who'd spoken at her son's school, and she said, "As a result of my talk, she was able to disclose to her children that she herself was positive, and she'd never done that until he'd been educated by me." So, it's amazing to think I can have that sort of impact.

Jeff Galvin: And knowledge is power, you know.

Emma Cole: Absolutely.

Jeff Galvin: To face your fears and learn about, you know, the details of these things, but you can find a way through the maze where you can have a normal life, you know, when you are dealing with the reality instead of just being stymied at, you know, the door because you're so fearful of learning the information that really isn't that bad when you finally hear it, right? You know, that's, of course, you, you know, it's really great if a lot of what your messaging does is it convinces people to be careful and aware and avoid getting diagnosed, but then also, if they meet that situation and they hop over the line to, you know, HIV diagnosed, right, to understand that that's not the end of the world, and the fact that it's not the end of the world makes it much easier to face the reality of it and be careful.

Emma Cole: Yeah, and the reality is today, you're not going to be given an eight to ten-year life expectancy like I was given, so, you know, yes, it's still going to have its challenges, a diagnosis, of course, but you know, the truth is it's not a death sentence if you have access to those meds, and, you know, that's, and people can have children. When I was diagnosed, we were told not to get pregnant, not to have children, so much has changed, you know, if I'd truly believed I was going to survive this long, I would have started paying into a pension when I was diagnosed, and you know, I never expected to be alive to potentially need a pension. So, you know, financially, I'm like, "Damn it, I wish I could have seen the future, and I would have started saving a bit." 

Jeff Galvin: Another reason to warn those kids, right? Yeah, you know, don't not put away for your future, because with HIV you still have a future.

Jeff Galvin: Well, so, okay, you've really managed to incorporate your HIV diagnosis into your life in a very positive way, in terms of you know, all this giving back, but also in terms of having a normal life. But you know, given even that you're in this good situation, what would a cure mean, do you think? If it was possible to carry HIV, would that change your life? Would that change, you know, would that be important at this point?

Emma Cole: Well, you have to remember I'm from the generation who were told AZT was "the cure", so, you know, and I have been through so many "cures" in my life as a positive woman that it's hard to get optimistic and hopeful, because I've heard it all before. Because obviously things are very different today, the work you're doing looks very encouraging. 

I suppose my only anxiety of a cure is that will people believe it, because you still have people doubting whether "U equals U" is true. So, if you say to someone, "I've taken this medicine, I'm now cured," will they really believe it? Because I think some people, their attitudes are so hardened that they probably wouldn't accept. They'd probably want to see, you know, I don’t know how you would articulate it to the masses and it would be accepted. You know, when we still haven't got things like "U = U" knowledge about that, you know, everywhere.

I actually was contacted by a guy in Uganda on Twitter, and he said, "Look, in my area, people don't even believe HIV exists." So, I think a cure would be amazing, wonderful and yes, but whether will I live to see it, I still don't know. 

Jeff Galvin: I think we, you know, having skepticism after watching the history of HIV is completely natural. I mean, we've been four decades since discovery, and it has been a roller coaster, as you explained, in 700, something like 700 vaccine trials without a vaccine being created. So, I totally understand that skepticism. 

My hope or belief in that HIV will be cured comes from the fact that technology has advanced so much in drug development. I think gene and cell therapy now gives us access at a level in the body that we never had before, you know, to reprogram DNA and so I think that's what sort of opened up a possibility. And if this isn't the technological revolution that brings the cure, another technological revolution will come along that will. So, I have 100% confidence in an HIV cure. I just don't know when and I don't know what. 

Emma Cole: Oh, I hope it's in my lifetime.

Jeff Galvin: Yeah, but we're going to keep trying, I mean, we are, you know…

Emma Cole: That's all we can do, isn't it?

Jeff Galvin: Yeah, yeah, we've got a successful phase one now, so we've shown the safety of this cell therapy and we've shown blood markers of efficacy and we're gathering some additional efficacy data right now. And I would say, I haven't seen anything that counts us out yet, so that's a good thing, that's a very good thing. 

So we're going to keep on on this mission, and it's good to see you light up a little bit that yeah, a cure would be nice despite this.

Emma Cole: Because then you know the people in my life who currently aren't in it because of the fear of HIV might come back, you know? If there was a cure, if I could say, "look, I'm not HIV positive anymore, so you can accept me back into your life," because there are people that have excluded me because of my status, and you know, I’m obviously not just the only person that's happened to. Many families have excluded positive people from them, and that would be a wonderful thing to sort of be able to engage again with the people I'm not in touch with.

Jeff Galvin: Well, to all those people you're not in touch with now, let me remind them that Bruce Springsteen is just fine, okay? So they do not have to worry about you. 

Emma Cole: Oh, I know, yes, yeah.

Jeff Galvin: You’re just like anybody else in their life, they should welcome you right back in with your sparkling personality, your positive attitude, and also all this knowledge that you have. 

Emma Cole: Yes, exactly. I'm a wealth of information.

Jeff Galvin: Terrific discussion. Is there anything else that you'd like to talk about in closing? Are there any messages that you have for our limited audience? Now when I hear that you've talked to 350,000 students, I feel somewhat humbled by our Cure Chronicles audience, but at the same time, we're another platform. Anything?

Emma Cole: Well, you know, my closing, if you like, bit in my talks is always to say, "look, should anyone ever disclose to you that they're positive or they live in a family with a positive parent, sibling, aunt, uncle, cousin, whatever, that people react with kindness, love, understanding, and no fear." Because as I say, we are in a very different place in 2022 to the 1980s, the early 1990s when I was diagnosed. So it's so important that people are educated about what HIV is today and not hold on to those fears from the past. 

Jeff Galvin: Hopefully, together we'll be able to break a lot of that misinformation. I thank you again for joining us on the Cure Chronicles, and I hope we'll see you again soon. 

Emma Cole: Thank you very much, Jeff. Really appreciate it. Thank you.