Campaigns The Undetectables "We are the Undetectables. You can't get HIV from us" Meet The Undetectables - the men who can't pass on HIV. As part the December 2019/ January 2020 issue of FS, GMFA has launched a new campaign as part of our The Undetectables series. We want you to meet the prominent and up-and-coming activists who are saying "We are the Undetectables. You can't get HIV from us." The new issue of FS, which features this campaign can be found at: www.gmfa.org.uk/fsmag Photos © Chris Jepson | www.chrisjepson.com Get to know The Undetectables: MARC THOMPSON, 50.DIRECTOR OF THE LOVE TANK AND HIV ACTIVIST.LIVING WITH HIV FOR 33 YEARS.UNDETECTABLE FOR 17 YEARS. As a long-term activist, what changes have you seen in attitudes to HIV over the years? I think among gay men we have more acceptance of people living with HIV. There’s a better understanding of the lives that positive men lead. Stigma is still there and it plays out on the apps. The notion of undetectability is understood but there are still remarks made to positive men questioning whether they are definitely on treatment or whether we are undetectable. There seems to be a distrust around the person rather than the science. Now the U=U movement is more established, what other work needs to be done? I think we have done an amazing job in communicating undetectability and getting HIV diagnosis and infections down in gay men, we’ve done a really good job in advocating for PrEP, but I think where we are starting to miss a trick is around the sexual health and general health needs of people living with HIV. We know that poor mental health, drug use and isolation and loneliness, are all much higher in positive gay men, so we need to start tackling that. It could ultimately have an impact on adherence and it could ultimately have an impact on U=U. We also know that gay men diagnosed with HIV have poorer sexual health outcomes. This could be because we’re testing more or having a lot more sex, but we don’t really know why. Over the last ten years I’ve seen sexual health slip off the prevention agenda. JAREK KUBIAK, 35. ASSISTED INFORMATION OFFICER AT THT DIRECT.LIVING WITH HIV FOR 12 YEARS. UNDETECTABLE FOR 12 YEARS. Why did you decide to take part in the photo shoot? It’s been five years since the very first HIV Stripped Bare shoot in 2014 and I’m glad to see more faces this year. It’s a great way of embracing living with HIV. It’s really important to address HIV stigma. What do you think your friends and family’s reaction will be to you doing this shoot? I hope that this time it will allow me to show my mum and allow me to share it on Facebook, as my last photo shoot with you was nude. But in all honesty, I couldn’t wish for a better mother who has supported me since the beginning and I can’t wait for her to see it. My friends will be absolutely proud. What frustrates you most about perceptions of living with HIV? I guess the derogatory language, especially on the gay dating app scene. And sometimes the condescending pity. Did I mention a certain right wing politician? Do you think stigma around HIV is getting better? The stigma is still there but thanks to brilliant campaigns like this, sportsmen and celebrities coming out as positive or in support, it is definitely being challenged. MATTHEW HODSON, 52. EXECUTIVE DIRECTOR OF NAM.LIVING WITH HIV FOR 21 YEARS. UNDETECTABLE FOR 15 YEARS. How has being an activist impacted your life? It’s somehow odd to think of myself as an activist. I just live my life the best way that I can. I’m honest about who I am, and that has to include that I’m living with HIV, and obviously I have things that I want to say about that. It’s a relief to know that I don’t have to hide my HIV status. It’s an honour when someone tells me that I’ve given them support, or comfort or inspiration. It’s a pain in the arse when people expect me to be ‘that HIV guy’ all the time. What advice would you give to new activists or those looking to make a difference by openly talking bout U=U or their status? Be careful with your privacy and your personal life. Only give away what is yours to give away – you may not be able to retrieve it. Other than that, as Dolly Parton says, the trick is to know who you are and then start doing it on purpose. I think it took me a while to learn that lesson but I’ve embraced it now. What else do you think needs to be done to get the message of U=U out there? We’ve had more than 30 years of living in the shadow cast by the ‘Don’t die of ignorance’ campaign. It’s going to take a lot of hard graft, chipping away at that legacy. But I believe that we are making slow, but real progress. People like Gareth Thomas and Jonathan van Ness move the dial. Activists make it part of the conversation. It’s painstakingly slow but we will get there. ANT BABAJEE, 41. CRM MANAGER AND PUBLIC HEALTH STUDENT.LIVING WITH HIV FOR 12 YEARS. UNDETECTABLE FOR 10 YEARS. As a long-term activist, what changes have you seen in attitudes to HIV over the years? It feels odd to be described as a longtime activist. I feel like I have only been talking openly about living with HIV for just a few years. Assuming I am indeed a grande dame of HIV, personally I think attitudes and knowledge have got significantly better over the past decade. Medically HIV has been pretty easy for me. I was diagnosed early and started medication when I needed to, but facing stigma and discrimination has been much harder. For my dissertation research for my master’s in public health, I am going to be looking at this question: have knowledge and attitudes among gay men in England improved since 2010? I’ll let you know the answer next year when I have crunched the data. What frustrates you most about perceptions of living with HIV? I find it really interesting we use the words ‘disclosure’ and ‘reveal their status’ when we are talking about HIV-positive people just talking about their health. Doesn’t that say a lot about HIV stigma, and the shame that it is often associated with an HIV diagnosis? Do we talk about other preventable and treatable long-term conditions in the same way? Our language around HIV definitely needs to change. NICKY DEBOO, 29. MANAGER FOR SOHO HOUSE.LIVING WITH HIV FOR 4.5 YEARS. UNDETECTABLE FOR 4.5 YEARS. What’s usually the initial reaction from people when you tell them you are undetectable? This is a hard question to answer, as I am sure like many of us living with HIV, there have been many times where we’ve been turfed out or turned away. My dad for one. When he found out, he said he will be there at my grave to tell me I told you so, and reminded me that I’m an idiot for going out and getting such a disease. Unfortunately in this case, no matter how many facts and medical breakthroughs I’ve showed to him, it’s fallen on deaf ears. Partners have been fine, and very understanding. However, now I’m single again and facing telling people, there have been some mishaps. A recent hook-up turfed me out at 3am after I told him about my status. He then ghosted me for a week, then asked to see me, only to tell me how disappointed he was in me for not telling him sooner and how he has lost all respect and trust for me. Do you think stigma around HIV is getting better? Unfortunately stigma is still very much alive, and I fear it lives deep inside of me and many others who are in my position. I’m lucky that I’ve only experienced the stigma first hand on two occasions. I’ve got so many supportive people around me, however it only takes one person and that stigma that lives inside me wakes up and fills my head with awful thoughts. I have people I can talk to, so when it comes to moments of doubt, I can rely on them. I worry more so for the newly diagnosed who maybe hasn’t built their community yet. I can’t bear the idea of these guys having no one to turn to. PAUL ATKINSON, 40. HORTICULTURE.LIVING WITH HIV FOR 6 YEARS.UNDETECTABLE FOR 5 YEARS. What’s the initial reaction to you being undetectable from friends, family and partners? I, along with friends and family, are just pleased and happy to know that I’m doing well and in good health. Friends and family were surprised to know that being undetectable means I can’t pass it on. As for partners and hook-ups, I’ve only been with three people in six years and they too are living with HIV and undetectable. Do you think stigma around HIV is getting better? I think we still have a long way to go, we still hear the same old myths from the early days and see fake stories on social media. I think some of the stigma is so ingrained that even in the era of PrEP and U=U, some people are still afraid to engage in sex with people living with HIV. There’s a fear barrier that can’t quite be broken. What frustrates you most about perceptions of living with HIV? People who see us as being unclean, or those who see you as a game of chance wanting you to make them positive. Well, here’s the news: it ain’t going to happen, as people on effective treatment and are undetectable can’t pass it on. HARUN TULUNAY, 32. EVENTS MANAGER.LIVING WITH HIV FOR 3 YEARS. UNDETECTABLE FOR 3 YEARS. What’s the initial reaction to your being undetectable from family, friends and partners? None of my friends knew about HIV and being undetectable. After long conversations and sharing the facts, all of them were happy to know that I can have a happy, healthy, normal life. I come face to face with challenging situations in the gay community but we are getting there. How do you deal with people who may be misinformed or ill-informed about HIV? I love challenging those people. The information available on HIV is fact, someone didn’t just make it up, so when I come across someone who has been misinformed, I can be quite direct. I do try to educate people as much as I can, however you cannot educate everyone. I have had to walk away a couple of times after a long debate. Unfortunately you can’t change everyone’s minds. What else do you think needs to be done to get the message of U=U out there? LGBT-inclusive and age appropriate sexual health education must be mandatory. The government should ensure that all healthcare professionals are trained with the most up-to-date information. It would be great if we have a government supported campaign to change perceptions of HIV and address the mental health issues that stigma brings to people living with HIV. I believe U=U message should be more present in the media, especially on the TV. GREG OWEN, 39. ACTIVISM CO-ORDINATOR AT TERRENCE HIGGINS TRUST AND CO-FOUNDER OF IWANTPREPNOW.CO.UK.LIVING WITH HIV FOR 4 YEARS. UNDETECTABLE FOR 4 YEARS. Why did you decide to take part in the photo shoot? Because GMFA were the first organisation to provide me with a media platform to talk about HIV and my diagnosis, while I was building iwantprepnow. It’s always nice to go back to where you began. What changes have you seen in attitudes to HIV over the years? The first big shifts have been that we know people living with HIV and undetectable can’t pass on HIV to their sexual partners without a condom, and we’ve seen huge developments in prevention as well. We’ve had PrEP in the UK on a self-source basis since October 2015, so these things are really key tools. I think attitudes towards HIV are changing rapidly within some communities but not in all. We know that white gay men in big urban areas tend to know more and be more embracing of PrEP and the U=U message, but its typically white gay men who are socially mobile and clued up. We are not seeing those messages and new tools being embraced in other communities. These inequities and lack of representation we see have been going on for 30-35 years, and it’s nice to see GMFA do some good work trying to address this with Me. Him. Us. How has being an activist impacted your life? The more visible I become with the work that I do, the more invisible I become as a person. Because my personal story was so aligned with the PrEP narrative in the UK, it’s quite hard to separate the two now. I felt like the person had disappeared and people just saw the work. People expect me to be a certain way and when I’m just me and I’m not that person, it’s weird. AMEET SHAH, 40. HOLISTIC THERAPIST AND SUPPORT WORKERLIVING WITH HIV FOR 5.5 YEARS. UNDETECTABLE FOR 4.5 YEARS. Why did you decide to take part in the photo shoot? I think that more faces from minorities need to step out and be part of awareness projects for both LGBT and HIV populations. What do you think your friends and family’s reaction will be to you doing this shoot? I think this could be a mixed reaction as some may think it is something personal not to be shared and publicised, whereas others would be proud to see me doing this as part of education and awareness to act against ignorance, taboo and stigma. The psychological, physical and spiritual/consciousness related aspects of our existence all need to start being supported and the time is now I believe. What was the initial reaction to your being undetectable? For myself of course, it was a celebration and relief and almost hard to believe because of old information and attitudes. I believe we all carry internal phobias in many ways for many things because of our conditioned upbringings in society, as well as general external attitudes of people. For months I was unable to meet anyone for a date or hook-up because I felt unclean or not good enough in terms of self-esteem. At times the ignorance, discrimination and hatred from some within the LGBT community put me off more. The education and facts from my consultant was such a relief for me and changed the way I felt and behaved by empowering me again. I realised that a person’s reaction is not about me but about something within them. JONATHAN BLAKE, 70. ACTOR AND RETIRED COSTUME MAKER.LIVING WITH HIV FOR 37 YEARS. UNDETECTABLE FOR 7 YEARS. Do you find people are generally educated about HIV and being undetectable? Sadly not and that is why doing this photo shoot is so important. This message has to be spread far and wide as HIV affects all genders, sexualities, races and religions. It has to reach everybody. How do you deal with people who may be misinformed or ill-informed about HIV? The only way one can is to try and give them the information and answer any question they may have if they are prepared to listen. Sadly some may not wish to do so. Do you think stigma around HIV is getting better? It’s more spoken about and I would hope it is, but as I identify as a queer white man, I do not know what the situation is within other cultures, races or religions. I hope it is diminishing. What frustrates you most about perceptions of people living with HIV? That so much misinformation still exists, which is in part due to the right wing press, a hangover from the ‘Don’t Die of Ignorance’ campaign, which instilled fear rather than giving the facts. Of course, the infamous Section 28 which denied lesbians and gay kids full, frank and factually correct information about sexual practices, reproduction safer sex and all STIs. JOSE MEJIA ASSERIAS, 33.HIV PEER SUPPORT MANAGER.LIVING WITH HIV FOR 11 YEARS. UNDETECTABLE FOR 9 YEARS. Why did you decide to take part in the photo shoot? Living openly with HIV and taking part in this photo shoot is one way of showing others how much HIV has changed. It is an opportunity to challenge some of the misconceptions around people living with HIV, and a chance to raise awareness amongst other gay men regarding sex, positivity and wellbeing. It’s also a way to tell everyone that I don’t care about what they think about me living with HIV. It’s an opportunity to remind them I’m happy living with HIV, I am thriving and I am the best version of myself. Lastly, I think representation matters. I feel it is important for other Latin Americans to see someone from the same Latino background. It’s a way of feeling represented and related and that has a positive impact when accessing sexual health and HIV services. As someone who works in the HIV sector, what changes have you seen in people’s attitudes towards HIV? My feeling is that people are more curious. People are more open to understand and learn something new, whether that is about ways to prevent HIV or challenges faced by people living with HIV. I would even say people are less frightened or scared about HIV. I think people are interested in the progress that has been happening in the HIV field. SIMON HORVAT-MARCOVIC, 55. LIVING WITH HIV FOR 4 YEARS. UNDETECTABLE FOR 4 YEARS. Why did you decide to take part in the photo shoot? I think U=U is such an important message for EVERYONE to know about. I also think it’s vital that in any campaign to raise awareness and combat stigma, the audience and reader should be able to see someone like themselves. I am an older out of shape guy who has health issues both physical and mental. I walk with the aid of a walking stick. So I tick a few boxes. Do you think stigma around HIV is getting better? I think that it depends on which part of the country you live in. Here in London, it seems better, especially around the younger age groups. When I was diagnosed with HIV, I knew I had sexual contact, safe or otherwise, with 25 people in four continents between my regular sexual health check-ups. When I phoned them to inform them of my status the main response was asking how I was. And as for stigma, the biggest surprise was from the ‘Undetectable Invincibles’ who were more concerned with my Hepatitis C diagnosis. Thanks to our amazing NHS, I have been fortunate to have been given the opportunity to have one of the newest eight week Hepatitis C treatments costing £39,000. That’s £700 per day. What frustrates you most about perceptions of living with HIV? It frustrates me that the government cut the funding for sexual health services and that we are relying more and more on the third sector charities to fill the gap. NADIM UDDIN, 30. Do you find people are generally educated about HIV and being undetectable? I find people are not very educated about HIV and being undetectable. People still seem to think it’s as easy to catch as a cold. People have been told by their partner that they would kill themselves if they had HIV. Some people also had a partner stop having sex after knowing their HIV-positive status. Do you think stigma around HIV is getting better? Stigma might come from myths, but the effects are real. People with HIV face poor treatment in educational, healthcare, and work settings, the erosion of their rights, and psychological damage. Some are shunned by their community, which may mean losing their home and livelihood. Fear of stigma and discrimination is the main reason why people are reluctant to seek healthcare services, disclose their HIV status, and take antiretroviral drugs. An unwillingness to take an HIV test means that more people are diagnosed late, when the virus may have already progressed to AIDS. This makes treatment less effective, increases the likelihood of transmitting HIV to others, and can cause early death. What else do you think needs to be done to get the message of U=U out there? Educate healthcare workers. In third world countries, healthcare workers needs to take a training program focusing on reducing stigma and discrimination against young people who access sexual health services. Protect the privacy of people who are HIV-positive. Laws that criminalize HIV non-disclosure, exposure, and transmission deter people from HIV testing, and put the responsibility of HIV prevention solely on the partner living with HIV. Remove travel restrictions, as between 2008 and 2015, around the world, 24 laws restricting travel and residency for people with HIV were removed. But there is still more work to be done: Brunei, Equatorial Guinea, Iran, Iraq, Jordan, Papua New Guinea, Qatar, Russia, Solomon Islands, United Arab Emirates, and Yemen still categorically refuse entry to people with HIV. Support people living with HIV to work through internalized stigma. A training program could be created where people living with HIV could learn coping and stigma-reduction strategies. Fight inequality and discrimination. People who are marginalised, including trans women, men who have sex with men, sex workers, and drug users, face legal and social inequities which put them at higher risk of HIV infection. TAZ EASON, 69. RETIRED.LIVING WITH HIV FOR 29 YEARS. UNDETECTABLE FOR 16 YEARS. Why did you decide to take part in the photo shoot? I’ve always been open about my status. Back in the 90s myself and two other widowed friends started ‘Warriors’ at Turnmills, which was the first club night anywhere to actively welcome HIV-positive people. We stood up to stigma then and I still do it now. What’s usually the initial reaction from people when you tell them you are undetectable? My family are only concerned about my health, not my sex life. My friends all understand U=U and are happy. I don’t have a partner. Hook-ups are a mixed bag. They are mainly no problem, it’s just the occasional uneducated (and often just a bit scared) person. Do you find people are generally educated about HIV and being undetectable? Again, it’s mixed, even among the gay community. Not enough young gay guys know their history, so it’s often difficult to really grasp the issue in depth. What frustrates you most about perceptions of living with HIV? I don’t get frustrated, but again it's about visibility. Perhaps few people living normal happy lives wish to talk about their HIV status, so in some ways the good bits remain unspoken. PAUL FLEMING, 55. EXECUTIVE DIRECTOR OF A CHARITY.LIVING WITH HIV FOR 17 YEARS. UNDETECTABLE FOR 8 YEARS. How do you deal with people who may be misinformed or ill-informed about HIV? I tell them what it means and 99.9% of the time they get it, they appreciate the information and are more informed. I don’t often get a potential hook-up saying “yeah but how do I know, how can I trust you” so I don’t need to say, “but how do I know your status and how can I trust you.” There is far more chance of picking up an STI from negative guys who only get tested occasionally than from other positive guys who get checked out at least twice a year. Do you think stigma around HIV is getting better? For the gay men in London bubble, yes absolutely. It’s a different world entirely to when I was diagnosed, let alone last century. As a white gay man in London, HIV related stigma is essentially a thing of the past. I can’t obviously speak for others, especially those from a more conservative culture than the one I am from or inhabit. What else do you think needs to be done to get the message of U=U out there? HIV charities need to understand they can’t push the U=U message one day and wring their hands and say how terrible it is for people living with HIV the next. It’s not consistent. For most people in the UK living with HIV, not everyone, but certainly statistically for most, living with HIV is a doddle. It’s no big deal. You don’t need to feel sorry for us and raise money to help us get on with it. Thank you for all your help in the past but your time has come, or is coming, to exit the stage.” PAUL BLIGHT, 43. CAREER BREAK FROM FINANCIAL SERVICES.LIVING WITH HIV FOR 10 YEARS. UNDETECTABLE FOR 9 YEARS. Why did you decide to take part in the photo shoot? I want people to not be afraid of disclosing their HIV status to friends, family or employers. I’ve been the victim of HIV stigma in my home town of Bournemouth since telling some of my heterosexual friends over the last few years and suffered the 90s-style gossip and cold shoulder treatment, including from people I cared for. I wanted to stand up with people who want to end stigma around HIV. I wanted to stand up and be proud to be undetectable to show my appreciation for the millions of hours and money that has been spent by researchers, doctors, counsellors and drug companies that mean today I enjoy the same quality of health and life as if I were HIV-negative. I also wanted do it in memory of a guy called Jonathan who was not as fortunate as me in the 1990s to have access to the latest HIV drugs. He died of HIV complications. What else do you think needs to be done to get the message of U=U out there? I think it is only in recent years that U=U has gotten out there onto social media, with people sharing their stories that if you are undetectable then the virus is untransmittable. I think in some of the early years of HAART treatment there was still some uncertainty or confusion about what the risk was (if any at all). Now we have the evidence and the drugs. I think there should be a much greater publicity campaign about U=U. We really need to expand the message about what being ‘undetectable’ means. Not only the positive health benefits it brings to each individual, but about the guarantee that now comes with the U=U message. NAZIR.