Around 100,000 people in the UK are living with HIV.
75% of them say they face discrimination because of it. Why is that and what can be done about it?
In this podcast episode, journalist Angela Walker interviews Matthew Hodson, Executive Director of the charity aidsmap about the stigma surrounding HIV and what can be done to address it. Matthew shares his personal story of being diagnosed with HIV in 1998 and discusses the progress that has been made in HIV treatment and life expectancy. He emphasises the importance of education and dispelling myths about HIV, as well as the need for positive role models and support for people living with HIV. The conversation also touches on the global stigma of HIV and the work of aidsmap in providing information and support.
Takeaways:
Stigma surrounding HIV still exists, but progress has been made in terms of treatment and life expectancy.
Education and dispelling myths about HIV are crucial in addressing stigma.
Positive role models and support for people living with HIV are important in changing perceptions.
Visit the AIDSMAP wesbite: https://www.aidsmap.com/
https://www.angelawalkerreports.com/
Around 100,000 people in the UK are living with HIV.
75% of them say they face discrimination because of it. Why is that and what can be done about it?
In this podcast episode, journalist Angela Walker interviews Matthew Hodson, Executive Director of the charity aidsmap about the stigma surrounding HIV and what can be done to address it. Matthew shares his personal story of being diagnosed with HIV in 1998 and discusses the progress that has been made in HIV treatment and life expectancy. He emphasises the importance of education and dispelling myths about HIV, as well as the need for positive role models and support for people living with HIV. The conversation also touches on the global stigma of HIV and the work of aidsmap in providing information and support.
Takeaways:
Stigma surrounding HIV still exists, but progress has been made in terms of treatment and life expectancy.
Education and dispelling myths about HIV are crucial in addressing stigma.
Positive role models and support for people living with HIV are important in changing perceptions.
Visit the AIDSMAP wesbite: https://www.aidsmap.com/
https://www.angelawalkerreports.com/
Around 100,000 people in the UK are living with HIV and 75% of them say they face discrimination because of it. Why is that and what can be done about it? I'm journalist Angela Walker, and in this podcast I talk to inspirational people and discuss under-reported issues. My guest today is Matthew Hodson from the charity AIDS Map and who describes himself as shamelessly HIV positive. Matthew, thanks so much for joining us today.
Matthew Hodson:Oh, that's a real pleasure, thank you.
Angela Walker:Now we're going to discuss the stigma of HIV that still exists in a minute, but first could you share your story with us? What happened? When did you find out that you were HIV positive?
Matthew Hodson:Well, I was diagnosed in 1998. Now that's kind of quite significant, because that was just about 18 months after they had discovered they could treat HIV. So it was quite a different world. We no longer had kind of nothing to use against HIV. But at the same time, when I was diagnosed, I remember that the consultant said to me it's okay, we can treat you now. You've probably got another 20 years, and so, because I was 30 at the time, I thought well, I need to live to 50. That's the goal. Can I just make it as far as 50? And I mean spoiler alert, I'm 57 in August. So so I kind of got that goal and I think I've still got a little bit of petrol left in the tank as well.
Angela Walker:I think so. I think so, but you're smiling now. But what was it like at the age of 30 to get that diagnosis? How did you feel?
Matthew Hodson:um, I think. Well, I'll tell you this. I remember afterwards I I sat on the tube and the words that the person had said to me was your results will come back and we're sorry to tell you that you are, in fact, hiv positive. And those words were just like echoing in my head. And so I sat on the underground and you know people facing me and I thought they can hear it, can't they? They all know that I'm living with hiv.
Matthew Hodson:And I got back to my office and I emailed my very best friend, who was living abroad at the time, um, and said you know, look, I've got this news and I need to talk to you about it. Can you kind of give me a call when, when it's possible, and there's a time difference and everything like that. So I didn't know when he was going to speak with me and he fortunately he got the email straight away. He said I've got your news. You need to know. You accidentally cc'd one of your colleagues into this email. I mean, this was in the days when email was still quite new, and so I obviously made some like terrible mistake and I tore down the office corridor to kind of reach this person and just say look, you've got an email from me. Please, please, please, just delete it, because I just couldn't share that news at that time because it was a lot to process.
Angela Walker:And what's it like now? You know, back in the 90s I mean there was a stigma around. It wasn't there, and I mean have things moved on much since then?
Matthew Hodson:I mean, I think it's quite difficult to say, because I think it doesn't take a lot of experience of stigma to make you feel that this is a hostile environment. So you know, I mean you could go into, like, say, I could go onto a gay dating website or something like that, and you know it'd only take one person to say, oh my god, you make me want to vomit because you've got hiv, to make me feel that that was a really negative, terrible place. But that may be a very rare event, but it only takes a small amount to make you feel that you're pressured. Do I think things have got better? I think in lots of ways things have got better, partly because people like me and many others are now very open about living with HIV, and I think that does change the way the narrative is, and I think we need more of that. But are we as good as we should be by now? And I would say that we're not.
Matthew Hodson:I think I mean I do encounter kind of very kind of casual stigma. I guess I would describe it as People sort of assume that if I'm living with HIV, that perhaps I need to be pitied a bit, or you know, that's kind of a sad story, and for me isn't a sad story because I'm healthy and I'm well and I expect to live for a long time. It's it's just a part of who I am now, rather than a sad element and so like, for example, if you're watching a reality TV show, and I mean kind of on RuPaul's Drag Race, I mean pretty much every season, there will be one person who's living with HIV and who will share the fact that they're living with HIV with the other competitors. And as soon as that moment starts, you just know it's the sad music and it's the tears. And I just really would love it one day to be watching a reality TV show where someone says, yeah, I'm living with HIV, it's not a problem for me, it's a problem for other people Maybe it's not my problem.
Angela Walker:Yeah, talk to me about the treatments that are available now, because there was a time where, like you said, you were told you had 20 years left and to hear that you had 20 years would have been fortunate back in the day. I mean, you know, let's not, you know, let's not beat around the bush. It was a terrible diagnosis for many gay men. They didn't. They didn't get that 20 years. But now the treatments available, um, can you can live a really long and healthy life. To talk, talk us through that, because I don't think many people realize just what's available for people living with HIV.
Matthew Hodson:I mean there's quite a wide range now of different treatments which are available. For many people they're just on one single pill a day. Personally I'm not. I'm still on three pills a day, but that's just a kind of a regimen which kind of suits me and I kind of a little bit kind of loathe to change it because it's working.
Matthew Hodson:But yeah, if you are on HIV, if you are diagnosed promptly, and so if you're living with HIV and you're diagnosed promptly and you have access to treatment, your life expectancy is pretty much the same as someone who doesn't have HIV.
Matthew Hodson:And in some cases it may even be that you might live a little bit longer because you're already kind of involved with medical services.
Matthew Hodson:So if there are any other conditions which arise, you're much more likely to have the opportunity to talk about it with a health professional already kind of involved with medical services.
Matthew Hodson:So if there are any other conditions which arise, you're much more likely to have the opportunity to talk about it with a health professional. So I think a lot of the stigma that we still encounter is kind of based on this outdated concept of what it is to live with HIV, and certainly when I was a young gay man. That was my life, I mean, and also when I was diagnosed with HIV, I was just going to a lot of funerals and I think that was a very common experience for people of my generation and the generations above me. We experienced death on a scale which normally isn't seen outside of wartime and I think that terrible time and some of the HIV awareness campaigns of that time, you know, with featuring tombstones, they kind of created a narrative around this is what HIV is, is it's always about illness and death and doom, and of course, that in itself becomes stigmatizing, because it becomes this idea that you can't live a full, healthy, productive life if you have HIV.
Angela Walker:Yeah, it's interesting that you mentioned that ad. I can see it in my mind's eye. You know the tombstone ad and that's what we associate, and maybe not everybody's kind of moved on from them because we're not seeing big advertising campaigns now saying it's okay, if you've got HIV you can live an active and healthy life. So do you think that we should be educating people a bit more about? You know what is available for people who've got HIV?
Matthew Hodson:I think it's so important that we do tell people how things have moved on. I mean, and that's something which I can really try to do through my work and through, like my social media and all of that is to educate people on how HIV has changed over the decades. And I mean there's very good reasons to do this. I mean, obviously, the one reason is let's let's really challenge stigma, let's challenge all the reasons behind stigma by really sharing the great news that we can live long lives and also and this is really important that when you're on an effective HIV treatment, there is no risk of sexual transmission. I can't pass HIV on to my sexual partners, no matter what I do. It's just not possible because I'm virally suppressed to the point of being undetectable and that means that the risk is zero. And again, I think this is a really kind of great way of tackling stigma through information.
Angela Walker:One of the stories I've reported on a lot over the last few years has been the infected blood inquiry, where lots of people were infected with HIV hepatitis through contaminated blood products, and one of the men that I've been in touch with through the years, jason Evans. He said recently that his mom was sacked from her job because her husband was HIV positive. Now she wasn't HIV positive, but that's how strong the stigma used to be back then. Do you have any more recent examples of this kind of thing, or have we seen an end to it?
Matthew Hodson:Well, people living with HIV are protected under the law, so they should not be sacked for living with HIV. However, often with laws like this, there's the way the law is and then there's the way people act. And obviously with HIV, if someone is particularly not wanting to be open about living with HIV, if they were sacked for living with HIV they may not want to pursue that because of course that would only kind of with HIV. If they were sacked for living with HIV, they may not want to pursue that because of course that would only kind of embed the fact that they were living with HIV with a large number of people.
Matthew Hodson:One of the projects which AIDSMAP is involved in at the moment is something that we're working on together with two other charities National AIDS Trust and Positively UK and that's the HIV Confidence Scheme, which is actually to support employers to make sure that they are treating any well, any staff who may live with HIV kind of fairly and courteously and correctly, but also so that they can treat any customers or clients that they may have who live with HIV in a way which is appropriate, because some of those kind of fears, I mean, it's always about fear and ignorance, it's about that idea of well, what if I catch it? You know, what if I can get it from a mug, or what if I get it from a tea towel or something like that? And of course, these are not ways that HIV is transmitted. So it's really important that people, employers as well as the general population are educated about how HIV is and is not transmitted, and about how life is for people living with HIV. Now.
Angela Walker:It's interesting, isn't it, when Princess Diana was, you know, shaking the hands of people who are HIV positive and holding children and really you know normalizing it and kind of you know saying it, you know it is okay to touch someone who's got HIV. Like that was quite a long time ago, but back then that was quite pioneering.
Matthew Hodson:Yeah, I mean, I think for the time it was incredible, and you know, I don't think it was brave because I think she knew exactly that there was no risk, but I do think it was important because lots of people did still believe that there was a risk. Um, I mean, I think we lost a really wonderful ally in princess diana. I know that she would have been absolutely thrilled with the news that actually, not only is there no risk from casual contact, ie shaking hands, um, or, you know, holding each other or hugging or cuddling but actually now, with effective treatment, there's no risk from sex, um, at all. So I I mean, just one thing is like kind of sometimes people say, oh well, I would hug someone with hiv. I'm like, well, that's not really that much of a sacrifice, is it? I mean, do you want a medal for that? I mean, really, come on, let's, let's be real about it, because we can have sex now without condoms and there is no risk of transmission.
Matthew Hodson:So a hug just feels like a little bit of a kind of yeah, I think you're picking yourself up a bit with that one. That's my prize winner. I do think it's that old totemic advert which still is in people's heads. So can we change that narrative? Yes, I think we do, we can and I think we should. I would say that for me it's really important, if we're going to be talking about stigma, that we do so in a way which actually shows people with HIV as kind of strong, empowered, resilient people rather than as victims. I don't want ever to be seen as a victim.
Angela Walker:Well, I must say, because I am a follower of yours on Twitter and that's how I got in touch with you, and you're always posting these amazing pictures of you at the gym and you're looking really buff and you've got your muscles out and you are a picture of health. You know, you're a real poster boy for the good that these drugs can do, aren't you?
Matthew Hodson:Well, I mean, but that's the thing is, when I first was diagnosed with hiv and you know, if you googled hiv or guys with hiv, it would always be people with very severe side effects. I mean, often it was people with an aids diagnosis and I felt the burden of that, because if I talked about living with hiv, that was instantly where people went to and I was like, well, what could, what could I do personally to perhaps change that narrative a bit? And that's why I started posting these ridiculous gym selfies and all of that, because I kind of thought, hold on when I'm saying that people with HIV can live long and healthy lives. I've actually kind of got a bit of a visual example which I could use for this. So I mean it is, I mean it is quite deliberate, I mean also, I mean I'm a gay man and I work hard at the gym and I kind of go. Well, you know, that looks good.
Angela Walker:I want to share that. If you've got it, flaunt it. If you've got it flaunt it.
Matthew Hodson:I mean absolutely.
Angela Walker:Well it's, it's great to see you always looking so happy and so fit and healthy. But do you think there are some young men who might be afraid to check out if they've got a diagnosis? Do you think there's the stigma is still there, or have we moved on from that?
Matthew Hodson:no, I think we absolutely haven't quite moved on from that and it is so important, um, that we can get, we can encourage people to test, and that is you know also why I do it is. I think there was this old. In the old days they used to do these hiv prevention campaigns and it was all like you mustn't get hiv. It's the worst thing that could possibly happen. Now, how's that encouraging testing?
Matthew Hodson:because, you know. If people say, oh you, you know, right now you're walking along and getting on with your day-to-day life and everything's fine, but if you take a test, then the worst thing in the world could possibly happen to you and people go well, yeah, perhaps I'd rather not know, but of course, when people do know, then you can access a treatment. Treatment will mean that you will live a long and healthy life. Treatment will mean that you can't pass hiv onto your sexual partners. This is how we end the epidemic. We end the epidemic by getting everyone to test. I mean, if they, if they test positive, putting them on treatment. And we end the epidemic by telling them look, test positive, it's fine, go on treatment, won't be stigmatized. I mean, obviously that's not where we're at, but that's where we need to get to, because that is how we stop new infections happening.
Angela Walker:So how important is this early diagnosis then, Matthew?
Matthew Hodson:It is important because if the virus is allowed to kind of process unchecked in the body, then it will do harm and some of that may become at a a later stage that may become irreparable. It used to be when I was diagnosed. The treatment was pretty toxic and there was kind of quite a lot of side effects, and so at that point what they were saying was don't start treatment until you really need to. I mean, kind of like you'd be pretty much on the verge of getting ill and then they'd say, okay, start treatment now, because that way you'll have less time with the side effects and that's probably better for you. Since that time we've got much better at dosing so and we've kind of got new drugs which are available and kind of.
Matthew Hodson:You know, different drugs do slightly different things. They will have slightly different side effect profiles and they'll be kind of they'll. You know, certain drugs will be better for some people, other drugs will be better for other people. I mean, that's kind of just the way it is, as with pretty much every kind of medical condition which has a range of drugs to treat it. But you don't, you're much, much less likely to have those kind of side effects now, and so I think that's that's that's really important that when they did a study on, well, what's the best time to start treatment, they found that actually starting treatment earlier was much, much better. So now if you're diagnosed, you're put on treatment pretty much straight away. They try and kind of get you into that process before you leave the clinic, and I think that's really important.
Angela Walker:Talk to me about your work at AIDSMAP. What's that charity all about? What do you do?
Matthew Hodson:So AIDSMAP provides information for people living with HIV or people affected by HIV or people working in HIV, and that's a global information resource. So we reach people, obviously, across the UK and Europe, america, australia, africa, south East Asia, india. And I'll tell you, what's really wonderful about my job and this is something which just it's just amazing is that if I go to an AIDS conference or something like that and I meet people and people go oh, you're Matthew Hodgson, you work for AIDSMAP, and they will tell me a story about how AIDSMAP saved their life. And that's just an amazing feeling.
Matthew Hodson:You know, and I get that. You know I'm so privileged. I get that on a regular basis because aids map is there for people, often when they're just diagnosed, often when they're really scared, often when they feel like they may have no future at all, and we're there with accurate, reliable and accessible information, which often that provides real reassurance to people that there is hope, that there are treatments, that they will live a long time, that they can have children, they can have grandchildren and they will live to see those grandchildren. It's life-saving.
Angela Walker:You look really emotional. It means so much to you, doesn't it it?
Matthew Hodson:It does, I mean, it's one of those know, one of those. I'm trying to be good grit to uh sorry, I'm trying to uh experience gratitude and you know, think about the things which I'm grateful for, and that is certainly something that has been an amazing part of my life is to have been involved with and to have supported people living with HIV all around the world in that way.
Angela Walker:When you say that it saves people's lives. Talk me through that a bit more.
Matthew Hodson:Well, I mean, I think one of the reasons it saves people's lives is that actually people feel despair sometimes when they're diagnosed with HIV and that's because that burden of stigma, that burden of fear, is so great. But also it saves people's lives in as much as we give people the information which they need about treatment. And obviously sometimes you know those treatments change or the you know the side effect profile, new things kind of come up. So we're reporting constantly on the news around treatment and around what's successful and what works and what some of the challenges are, and so obviously that also helps, um, you know healthcare professionals in terms of kind of working out what's the best treatment courses for the people that they're seeing. So you know we genuinely are, we're there and we're saving lives through the information that we share, both for people living with HIV and for their health care providers.
Angela Walker:It's really interesting that you mentioned about the kind of global aspects, the global reach of that charity, because, of course, in some countries it's still illegal to be gay.
Matthew Hodson:So you know, we talked about the stigma and it's easing perhaps here, but what's the stigma, like you know, for people living in other parts of the world well, I mean, I do think that homophobia is one of the reasons why stigma is still so prevalent, but, um, I think we also have to remember, of course, that hiv, on a global level, um, it affects many more heterosexuals than it does affect gay people.
Matthew Hodson:Um, I mean, there's kind of really some quite terrifying new laws that have been introduced recently in Uganda and in Ghana which are kind of very harsh penalties for homosexuality, and one of the challenges that presents is it means that gay and bisexual men and trans people are going to be less likely to access those life saving services.
Matthew Hodson:I mean, in Uganda it's kind of frustrating because actually they were doing pretty well in terms of their ability to diagnose and treat people living with HIV, but this, of course, is going to really hamper their prevention efforts. Diagnose and treat people living with HIV, but this, of course, is going to really hamper their prevention efforts. I think in the West it is much more or a much larger part of the burden of HIV is carried by gay and bisexual men and by trans communities, and I think that that does kind of play into the way that HIV is perceived, some of that stigma and some of that shame that people might feel about it. I always have said, though, that I mean, if HIV was a disease which primarily affected white, cisgendered heterosexual men, we would have seen a very different response to it, and I think we would not be talking about the stigma which is still related to it now.
Angela Walker:I think you're probably right and it's interesting that you mentioned Ghana, because about 25 years ago I went to Ghana as part of VSO, voluntary Service Overseas, and one of the placements I was on was working in a women's centre and we had a project where we were educating people about HIV prevention, but they refused to allow us to give out condoms and they it was number one abstinence. You had to preach, you had to talk about abstinence and our argument was let's be realistic, people are going to have sex. Let's help them do it safely. But they were dead against giving out condoms and it was so frustrating at the time actually it was a real frustration for us.
Matthew Hodson:I mean that is you know some of the homophobic legislation.
Matthew Hodson:I mean well, not only the homophobic legislation which is built, of course, often built upon colonial era laws, but I mean we've had homophobic legislation which was introduced here in the UK Section 28 actually kind of became law in 1988.
Matthew Hodson:And although it didn't explicitly mention HIV within the wording of that particular clause, it was very clear that the idea that children needed to be prevented from learning about homosexuality in case they became homosexual was partly pushed by the idea that homosexuality was equated with living with HIV and with AIDS at that time. And so therefore, if you could prevent children from becoming gay, then you could prevent them from potentially acquiring HIV. Of course, what we know is that actually you can't teach children to be gay, but you can teach children that it's okay if they are gay, and that's why it's so important that we have those kind of role models, we have those kind of examples of people who live full and productive lives, and I think that that parallel between being gay and being HIV positive I think is really powerful for me, because I remember when I was young and gay there was like nobody on television who was gay, or hardly anyone on television we had, like John Illiman on Are you being Served or something like that, but I mean, it was really-.
Angela Walker:It's like a caricature, really, wasn't it? Yeah?
Matthew Hodson:I mean, I thought being a homosexual meant that you had to be really camp and I can tell you, the first time I ever went to a gay club and realized that actually all those men with mustaches and czech shirts were actually what homosexuals looked like. At the time I was delighted, mean, this was a big thrill for me. But you know that lack of kind of those kind of positive role models of course then meant that it was very easy to be homophobic because you didn't know what gay people were like and all you were fed were these cliches and these stereotypes and perhaps what the tabloid press told you about homosexuals. And then, of course, when people started coming out as lesbian or gay or bisexual or trans and you know that you have lesbians and gays and bisexuals in your workplace and in your family and in the places where you worship, then it's much harder to hold on to that homophobia.
Matthew Hodson:And I think we're in the same place now with HIV is that if you don't know people with HIV, of course it's very easy to hold on to all of those old prejudices and fears. But when you know people who live with HIV, it's really clear that we live like long, healthy, productive lives and we're just the same as anyone else. So it's much harder to hold on to that prejudice, and that's why I think it's so important for me who is able to be open about living with HIV, to be so, and be so shamelessly and blatantly and brazenly, so that I can help to dispel some of that fear and ignorance which leads to stigma.
Angela Walker:And I just think it's brilliant because you are so positive and healthy and happy and, like you say, shameless about it. Why should you be ashamed? You shouldn't. So it's a really powerful message for young people, I think, who might. They might worry that they might need testing and they're too anxious. How can they find out more about you know, getting checked out and staying healthy and stuff like that?
Matthew Hodson:well, inevitably, I'm going to say that the best source of information about HIV is AIDSNAP, and I mean not only do we do lots of news coverage, but we also have all of the information which anyone will need to have about testing, about treatment, about what to do if you have been diagnosed with HIV. So I mean it's a really good place to start. I would challenge people to find a sensible question which isn't answered on that site.
Angela Walker:Brilliant. And of course, we can also find you on Twitter as well you can find me on twitter.
Matthew Hodson:You can find me on instagram and on blue sky and threads now as well it's all everywhere, all over, all over the net, brilliant.
Angela Walker:Thank you so much for talking to me and I just think it's amazing that you know the medication has come on with leaps and bounds and let's hope that, you know, the prejudice kind of dies out as well, because I think it's really important, as you say, that more people just come forward and get themselves checked out and make sure that they can stay healthy yeah, I absolutely agree and I will carry on fighting until we have eliminated stigma thank you so much for joining us today.
Angela Walker:Thank you, you've been listening to Angela Walker in conversation. I hope you've enjoyed the show. If you have, please take a moment to subscribe, to rate and review it, and you can find more information about other stories I'm involved with on my website, angelawalkerreports. com. Until next time, goodbye.