 What's up fam? Raif Derazzi here and today I have the honor and the privilege of getting to sit down and chat with Adam Castigel. He is known as the London patient. Thank you so much for agreeing to have this chat with me today. Thank you for having me. I am so delighted to be here and in the late having a conversation with you. Yeah, you have such an insanely busy schedule. I know you do. You're here for like two or three days. Yeah, two days. And you managed to carve out three hours just for me, just for this, so I really, really appreciate it. Yeah, it's my pleasure. I think it's important to keep the message and continue your work and continue to to praise my message. I think yes, great. Yeah, thank you for having me. Yeah, and you really are doing like a lot. You're doing the most and that's what we need. Yeah, because you could have just taken this experience and then said, okay, I'm done. I've, you know, I'm cured. I want to go back to my life. Everybody leave me alone and just lived your life and that would be totally fine and acceptable. Yeah, of course, but I think in my case I decide, first of all, that my responsibility to science and I think to be cured of HIV is beyond me. It just, it would be egoistic of me not to share my story. I'm a journey because I think in our community, we need to have role models. We need to have inspirations. We need to be inspired and I think that's something we're missing and I'm passionate about that. And I want to help all the advocates and all the activists and their work and that's what I try to do in this U.S. store. Yes, I love it. That's what we need more of. So we, and we've kind of chatted a bit back and forth on social media. We've been in touch for a while. Yeah, we have. This is the first time we've met. So we'll have to do this again next time when you have more time. Yes, looking forward to going back to LA in a more, yeah. So I just want to start off by getting to know your history, your personal life. If you don't mind sharing where you're from, where did you grow up, things like that? So I grew up in Caracas, in Venezuela, as a child. So I was oblivious. You know, it was, you know, I didn't have any knowledge about the HIV pandemic and that type. So I grew up there in my early childhood. And then I moved as a teen to Europe. I think because... What prompted that move? I think because my family are European. So I had to send this in Spanish and Dutch. So I think my surname tells you of Castilejo. You know, I was born in the Netherlands. Oh, did you? Yeah, you tracked. You tracked? Yeah. Okay, so my family's from Amsterdam and then some of them are from the islands, from the Dutch island. So it's kind of like connection with Venezuela. That's why my family, my grandfather moved from the Dutch islands to Venezuela in the 1940s. That's why my story, that's why I'm born in Venezuela. Sprach in the Netherlands? No. Grand-mater? No, no. It's a shame. That's all I know. I'm sorry guys. No worries. I'm in the same boat. I shoot, I shoot my granddad told me, no, you don't need to speak Dutch. You need to speak English. And that would be better. But now going back to Holland many, many times, I feel the need. I need to learn my language. But yeah, so I'm born in Venezuela and I moved as an early teens to Europe. And then I've been there ever since. So because for me, he was a part of who I am. I think being in South America, I didn't feel right for me. It wasn't the right fix for me. And I moved. Yeah, that's a late teen. And I haven't, I only been back to that country once. Wow. And a lot of people ask me about that part of my life. And I think, yeah, it was wonderful. I have a great memory. I, I can tell you, I did as a child. Not many people will do that. You know, people know about the Angel Falls, you know, the Angel Falls. That's the longest fall in the world. The waterfall. The waterfall. Yes, correct. So the Angel Falls. So I spent my childhood as a kid with my dad, my father was a pilot. So we spent years flying around in like, yeah, I have a wonderful memory for my childhood. But yeah, I moved as a late teens by yourself with your family. I moved by myself. My family's already, some of my relatives are already in Europe. And then the rest of my family moved later on. Yeah. Okay. Great. And so do you have citizenship? Yeah, I have multi nationalities. Oh, that's nice. I have dual nationalities. Yes. Well, I love, I love when people who are advocating and bringing visibility to those of us living with HIV have multi-ethnic backgrounds. Because I find when we're creating content and doing videos like this, people watching, they look, they're looking for someone who has their background. Yes, they identify. Yes, yeah. People from Europe who say, oh, yeah, you're like me. Yeah, you like me exactly. Yeah. And I think I get a lot of that not only from the Spanish community, I think the same as I wrote models, right? And I'm just now, I received from both mega themed. I was nominated one of the 100 most influential from both for the Latin community. And I was very delighted to accept that nomination. And yeah, because I want to help the Spanish community. But at the same time, I get people from Africa, people from Asia, from the Philippines. Because they feel, they identify with me. And I think we have skin color and a lot of people identify with us and with me to identify because, oh, you're one of us. And I remember people from South Africa contacting me, call me and say, oh, finally, it's not somebody white exactly. And I think from then it means a lot. And I want to make sure I still inspire them and continue working to inspire them. And to feel because people contact me and say, oh, how you feel? I'll say, listen, you're going to find a cure. We're going to find a cure for you. Wait, don't lose your hope. And growing up, what were you interested in? Did you go to school? Did you? Yeah, I went to school. I went to private school and I was lucky enough to do that. And I, you know, I think looking back, I wish I had better kind of guidance from the school system because as a kid. And that's still in Europe? No, that was in South America. I think that I wish I had a better, just in my late teens, I was very direct. But as a child, I think I wish I had more elementary. I wish I had more guidance like you have in Europe. Kind of get direction with that. I want to be an architect to begin with and then if I know I want to be an architect or I want to be, I think in my fight, I have to be, oh, I aspire to be my family trait. My father was a pilot and my grandfather a pilot too. So it was a family trait, you have to become a pilot and I did it. So I'm sure that went well. Well, but I guess I think that was a dream for them to be a pilot. But I think my childhood, it was a normal one. Like I expected any other child living in a middle class upbringing. Yeah, that was me style. And what about when you, so you moved to Europe to Netherlands? I moved actually to Denmark. Oh, okay. Yeah. My boyfriend is Danish and then I moved to, I decided not to move to the Netherlands to my family because You wanted some independence? Yeah, I wanted independence. Exactly. And Europe is small enough that if you go to another country, you're basically a couple of hours away. Yeah, you can go there. Exactly. So I decided, no, let me do something different and I moved there. And I had the choices to move to Spain because it's Spanish to go to England because it's big English or to go to Holland because my family. But I think in my case, I thought, Satinier, you're what you want to do in your life. London is the best thing for me. Proud British man, I felt like that was the right goal for me. Did you go to university? I went to college in England. What did you study? I went for culinary school. So I'm a professional chef. So I went to uni to study that for a couple of years there. Wow. Okay, I'm a chef at Trey. Very cool. Yeah, I want to, being the chef, I want to now incorporate in my lifestyle now to help people how to be healthy because I'm a transplanted nutrition's wife about because I'm a transplantee, I'm recovering from cancer about HIV. I love that. So I will do that in the future. So that's something coming later. Good. Okay. So before you were diagnosed with cancer, Hodgkin's lymphoma, you were diagnosed with HIV. Yeah. When did that happen? What was the circumstances there? So I was, I know, in 2003 in London, I was in a relationship and I think that was important to know your status. And I think in Europe, I think it's that consciousness about know your status. And, you know, I went to have a diagnosis, the test, sorry, and the result. And I was shocked when I get the positive result. So you had already been in a relationship for, in this relationship for a while? No, no, no, we were embarking. Just started. Embarking. And so you decided to go get tested. Okay, got you. Yeah, because I think being in the North European mindset is kind of very well. As you're going to embark in a relationship with, I really suggest to people to do that. As you're going to embark in a new relationship, know your status. Yeah. Do it together. Do it together because you're going to embark in that relationship and that's really important to do that. And a lot of people don't do that. And it means opportunities because you don't know if you are transmitting somebody. So in my case, I was diagnosed. That was very tragic for me. At that time, there's no prep. It was nothing. There was nothing. So for me, in my case, guys, I was diagnosed with HIV and I've been told I only had 10 years to live. And if you were lucky, you get 20. And then the worst thing they say to me, now go enjoy your life, the rest of your life. I'm thinking, how going to do that? How do you do now? And I felt like a death sentence for me. And I felt, well, my life is over. And I was so fortunate to have upon other time who told me, Adam, if you're HIV, that doesn't matter. I still love you. You still are who you are. And no matter what, and that was the key. And I was fortunate, that's what I say, because a lot of people don't get that. And for the first time after my diagnosis, I felt human again. Because when I get a diagnosis, I felt dirty. I felt shameful. I felt the society and even the people around or the medical people who gave you that diagnosis made you feel guilty. It's like it's your fault you go HIV, so deal with it. You're contributing to the problem. Yeah. So we're not going to give you an easy ride. But that was in the early notice. Let's bear in mind, we just came out from the 90s, when you have a diagnosis, you will die, basically. So we were stepped forward. But I have to endure telling me you're going to die. Yeah. The medical community didn't quite catch up at that point. No, it was in 2003. We just came out of the 90s. We were just fighting for medication. We were fighting to get treatment. So to tell somebody at that time, you're going to die. And then the next sentence is go and enjoy it. Do you know what your treatment was at that time? No, because you don't have treatment. There was zero treatment. No, because the policies at that time in the United Kingdom, I cannot talk about anywhere else, but probably in Europe would be the same. We have the policies, if you are HIV, now you don't need to have medication, or until you drop into a certain level. I remember that. Which we don't do that now. But that was known at that time. Yeah, for the folks at home watching, there was a period where when you were diagnosed, you were not immediately put on treatment, presumably because the treatment was more toxic. Exactly. And so there was a higher risk to put you on medication, so they would wait until... You were ill. You were really ill, like AIDS, before they would put you on treatment. Which is crazy today to think about it. Yeah, it's crazy. But that was the evolvement. That's what the HIV treatment evolved from there to where we are now. But yeah, so... And then you have to go into that mindset known. Today, society, if you are HIV, you have to be in medication because now we have U equals U, and you don't want to be on the textbook. You want to infect anybody. At that time, that was not part of the... Of the journey of anybody with HIV. So yeah, it was very difficult because now you know you are toxic, but you have to be more careful to have safe sex and to tell future partners you are HIV positive. And the narrative had changed completely today. Now we have medication on social being diagnosed. You enter in medication, make sure you're on the textbook and that is huge changes from that. Absolutely. So you were diagnosed. Fortunately, you were in a relationship with a very understanding partner and supportive. The doctors told you live your life however you want. Like do your bucket list basically. Exactly. Did your relationship... Which I did in my bucket list by the way. Did you? Yes. What was something on your bucket list? I want to know. Yeah, what was my bucket list? One of the first things I think being having the terrible death sentence because that's what I call it. It was a death sentence into something of three. My bucket list was to be... I think it was give... Sourcing back to my mother to create memories. I didn't get emotional even to think about it now back. Me too. Because I thought I want to create memories. So I did something. I took her from the ground or Europe. So we spent months together making memories. Making her dreams come true. Things she wanted to see. I make sure she saw it. And then to remember one time we were... We were... I think we were in Madrid. And we were... We were... I was looking at a balcony in one of the hotels we stayed. And she looked at me and she said to me, are you okay son? Because you're sad with a lot of sadness. Your eyes tell something else. I said no, I'm fine. But she didn't realize I was having a death sentence. She didn't know. No. Because I didn't want her to struggle with that. Because I think it was important for her not to know other times. You didn't want her to focus on that while you're trying to make happy memories. Yes. And I think... And then she understood later in time about that. But it was difficult to give all of yourself to make sure she had a good memory of you. Because they told you you're going to die. So you had to make sure whatever you do is that. And I was petrified. Because I started learning about the night if. About the pandemic. About the A-relates. You know. And I saw all the stigma and all that. So that was not what can live. And I did manage to do that. And then I decided, well, I was fortunate enough to have a partner who was able to help me. And I decided, well, I want to live the best life. So I decided to be very healthy. Training, exercising, cycling, running, gym. Having healthy lives. No alcohol. No smoking. Wow, really? I embarked on that journey of self-discovery. So I enjoy my life. I'm a keen skier. So I enjoy my skiing. I'm a keen cyclist. Less enjoy my cycling. I'm allowed to travel. Less travel. So that's so interesting to me. Because I feel that so many people would say, oh, I'm going to die. Okay, well then, who cares about my health? Who cares about my body? I'm just going to party. And I'm going to drink. And I'm going to trash myself. Because I'm going out anyway. I'm going to press the self-destructive button there. No, I didn't know. I did the opposite. Yes. Because I want to, I think I have in me the, I want to leave. I don't want to die. I don't want to. I don't want the diagnosed to just eat me alive. Yeah. And I, but at the same time, I, the HIV treatment, it was changing. By the time we entered 2000 and 10, I was already in treatment. And they told me, you're going to leave a healthy life to retirement. So thank God, you were living healthfully. So, but then they said to me, you've been very healthy. You've been very, you look after your health. And, you know, I was really the epitome of health. I'm going to tell my other. You look, you are doing better than people who are no HIV. So, and I was, for me, feeling great. Yeah. So, yeah. But I know everybody do that. Yeah. So that, and that what you said to you, that was in 2010. Yeah. That's when everything was changing. I was diagnosed with AIDS in 2012. I think I just missed the prep vote as well. Okay. I think by like a year or two. Okay. So at this point, you're living in London with your boyfriend. Still, were you still together? No, I was already single. Okay. So you're living a life healthy. I think it would be worth it. Yeah. Yeah. Yeah. Yeah. Okay. At what point did you start feeling sick regarding the lymphoma? I was in another relationship in North Africa. So I was in another relationship and I was, again, the epitome of health, exercising, training in the gym like a crazy one, four or five times a week, cycling, running, skiing, you know, eating super healthy. Yeah. And I did not feel anything. And that is one of the reasons why I'm passionate about talking about cancer and HIV. Because in our community, we don't tell HIV patients you are three times more likely to have cancer and we did not know that and we don't tell people that. So this is a tangent, the side little side note, but I just, I just got back from San Francisco with the Hope Collaboratory Patricia, you know. Yeah. And talking with scientists and researchers, I was talking to a scientist who was talking about HIV proteins in the brain that even when you're undetectable can impact your brain function and can give you a higher chance of dementia. And I told him, this is my issue with the medical community. As we are told, either they're completely uninformed and they tell you, you've got to watch everything. You could be at risk of dying or you get the opposite where it's just like, you can live like anybody else. You're just fine. You're just normally, you're going to live a long, healthy life. You have nothing to worry about. Neither of those are true. Yes. It's somewhere in the middle. And I think we're at a place now where we can start being a little more honest. Yes. About the complexity of what it means to live with HIV, including. Yeah. I had no idea. I, I recently- I learned, I learned that in the hard way by the doctor. Ashley telling me, the nurses and doctor, well what you expected, your HIV, you had three times more likely to get, oh that's news to me. News to me. Yeah. I thought a lot of the community doesn't tell that to people. We are trained three times more likely to, to develop cancers. I just had a conversation with someone who reached out to me and said, we're doing a campaign for those who are immunocompromised with a focus on skin cancer. And I told her, I don't know if it really applies to me because I'm undetectable. There's really an- It do apply to you. So we're like, okay, sorry, I can't help you. We both were like, okay, well thanks for trying. No. See you later. Good luck. It do apply to you. Here we are. If you're watching, let's reconnect please. Yes. Be, check yourself because you can get cancer guys. So these are the nuances that we need to talk about now. Yeah. Because now as a community we're aging, we're growing with the virus and we need to know all of these things that we need to be aware of. Yeah. Because in my case, I was living a healthy life. Yeah. So it was not suspected to, because I have a healthy lifestyle. Doing everything right. To develop cancer. But because you are HIV, the likelihood, genetically, of course, genes for your background that would help to contribute and your lifestyle would contribute about to have cancer. But it's there, that percentage is there and people don't talk about it. I learned it through the medical team telling me, well, you should know this. Nobody talk about this. Nobody. Nobody. Never heard that. Yes. And when you hear it, sitting on the table and with the doctors and nurses telling you that, and you're like, oh, why nobody told me this before? Why nobody saw it was relevant to tell you that? Because they are thinking, due to worry about HIV, don't want you to go back, you're going to worry about the next illness. And try to live a healthy life without which I applaud and I support 100%. However, I think it's important to cannot highlight a thing that's underlying. I'm sorry. Hold on. Just farted. Duke, are you done? I'm sorry. Okay. Yeah. We'll just keep continuing from there. I'm sorry. Keep it fresh. Yeah, exactly. Thanks, Duke. Appreciate it. That's why I have a candle lit. So yeah, I think FFA, to be part of them, having that conversation with the doctors about, we don't have that type of conversation with the doctors about being having, you had your HIV and you want to live a healthy life. And I support and I applaud 100%. However, and I think we need to kind of have different conversations about the implications of being HIV and immunosuppress was how to get body and to be vigilant. I think it's about to be vigilant. Not everybody will get cancer. But one in three people will get cancer in the lifetime. And we don't talk about it. And it's always my fundamental belief that education is empowerment. It's a key. Yeah. So you can withhold information and that works to a certain degree to protect people. But at a certain point, I think in the long run, educating people isn't way more powerful than using fear or withholding. I think people, when you would fear, I think we... It was in some ways, it was necessary during the eighties epidemic to make people realize people are dying. This is important. You need to be aware. We're not in that place anymore. Yeah. And I think being... I think you were diagnosed into something in 12 compared to to something in two. That was a way. 300 is a thing really different. But even so, I presume when you were diagnosed, they just tell you that you were not well informed. I think a lot of people, when they get the HIV diagnosed, first of all, it's a life changing moment for anybody. But I think now it's different because when you were in 2012, now in 2022, it's even different now. It's even more different now. However, I still see people which I... It was a case in London when I was informed a refugee came to London and he was... He had no idea he was HIV. For him, and his memory, in his mind, he was transported to the 1980s. How? Because they come from low and middle-income countries, where education and awareness about HIV doesn't exist. And even access to healthcare. Healthcare, of course. And not even, as you say, education and knowledge about the progress of HIV. For that individual, he was... He was a young person and he was like, I'm going to die. And we had to... I was informed by the people who were treating him to reassure him. No. Yeah. We are now in the 80s and you're not going to die for HIV. And you can leave a healthy life at the same time. And I was in the back of my mind, I was thinking, but you will not tell him about the cancer risk. You just concentrate on one point at a time. But I still, even today... This has happened this year. The case in 2022, we still find people who have no idea about HIV. Yeah. Yeah, we have. And it's incredible to see that. And that's what I want to work with the communities in South America and Africa and Asia, because there's a lot of misinformation. And that's an important distinction is between Western societies and the rest of the world. Because there's a huge disparity there between the overall general knowledge and the access to healthcare. Yes. So when I say things like, oh, it's not like the 80s, excuse me, I want to clarify, I'm mostly speaking about Western societies, because in places like Africa, where it's just an India and Southeast Asia, where it's just exploding and the majority of the population is actually female, it's a completely different story. Yeah. And I think we, we have a society in the development world. We have responsibility to, to help to develop work. Now we call it the law, the law and middle-income countries. We're supposed to support and get the knowledge, but it's very difficult. It's a huge task. But if, as I say too many times, I've been privileged to be in the developing world, be in the United Kingdom, I have the NHS, the National Health Service, which provides doing all of the things you need. But that's not the case for the rest of the world. Here in the U.S., it's different, you have the health care system. But in, in Africa, is I, hopefully in, in the coming months, I'm going to embark on a tour in Africa to, to tackle misinformation, to tackle about the key issue about knowledge, about HIV. So, okay. So let's get to the big topic, which is you are cured of HIV, correct? How did that come about? How came about if, if hard journey and with a lot of twists and turns to get into that. So in 2015, I was diagnosed terminally ill, and I was sent to a hospital to die. Well, because my cancer, it was incurable, and there was no way to treat it. It was, I spent the whole time. So this, I'm sorry, but this is the second time in your life you have been sent off to go die, essentially. Yeah. How did that feel a second time? You feel like, ah, it's like, no, I am not. You're not telling me I'm going to die. You didn't have like a why me? I think I did that in the beginning when I have cancer. How can I help PTO? Why me, why me? In the beginning, but then I realized not. And I think one extension I want to mention to you when I have the HIV diagnosed, I was given, so when you have HIV, you have hate from everybody around you. Stigma. Stigma, your chain fault is your fault. When you have cancer, it's not your fault. And the support, the love, the caring, and it was overwhelming. And I want to tell people it's still a human disease, both HIV and cancer are human defeat. They deserve the same love and care and understanding. And people don't do that. And that's something I'm very, really keen on that. When I was diagnosed in 2015, sorry, I was given that terminal diagnosis. Yeah. I was going to die. I didn't realize I was being discriminated. What do you mean? Because I was HIV positive, man, having cancer. So you're saying that they gave you a terminal diagnosis because of your HIV status? Because, not simple as that, because when you are an HIV patient and you have a cancer, the choices for you are limited because it's no enough data about treatments, it's not about research, don't. And the easy route is to, we have no, we have no, we have no experience. Instead of trying. Instead of trying. Yeah. Wow. So I, my new medical team, which I am going to touch, they were willing to risk it. But they told me I only had 10% chance of survival. Wow. I got two choices, die in a hospice or that 10% chance survival. That was no, no brainer. Where should I go for? So when it was a complete straight answer, it's not, it's not as if the 10% didn't come with its own risks or risks, but like, it wouldn't be a pain-free process. No, they told me, Adam, this is going to be very difficult, but we're going to, we're willing to try, if you're willing to try. Yeah, yeah. And we went ahead. But when I realized that treatment is not available to our HIV community who struggle with cancer, it's not available. And why is that? Because it's not data, it's not, I have, doctor had no experience about it. Now we're getting better. Okay. But when I had the transplant, it's still a very, very new experimental, experimental. The kids, we try to replicate the dose of the Berlin patient, Timothy Rayburn, the late Timothy. So, and a lot of people before me have died trying. Really? Yes. So people have died trying. Some people rebalance the HIV. Oh, wow. So it was a lot of people behind before me. Some of the people they weren't successful. So I embarked in that journey knowing the risk. And I know I could die. Because when you are HIV, I'm cancer patient. The likelihood of all complications is even greater. Because your HIV treatment has to work with your chemo treatment. And then I changed my medications on a regular basis. Because they have to change. So I have to endure HIV side effects and cancer treatment side effects together and combined. So imagine the noodle soup there all the time with different, you don't know which one is which. So I understand one of the doctors apprehensive to suggest that. But I feel like we need to make sure the doctor feel empowered. And to suggest. And that you have the ultimate choice. Choice? No doctor. I'd rather die. I'm at my hospice. But you have a choice. And I think if my willpower, my determination not to die, I will be there today. But that is because I did that. And to learn there was a possibility out there. And I was not being informed. That wasn't the biggest shock for me to understand that. And I want people to know that it happens. Because that was a positive discrimination. Right. Which is known because you've been discriminated. But in that way you are, you know what is very difficult to to figure out the discrimination because it's a positive discrimination. So I want to champion that too. Because I think it's important that. And it's not just with things like that. But it's as simple as I get a lot of folks reaching out saying they want to be fit. Yeah. They want to exercise and they want to consider supplements and different things. And their doctor says no. Nothing. No. We're not even good. You don't even have the option. You don't have the choice. We're not even going to consider it. Because you're positive. Yeah. Rather than working with you. Yeah. And I think so that's prevalent. Yeah. It's prevalent in a lot in a lot of the doctors. It's if you shouldn't embark on that. Don't do that. It's going to. And I can see in a lot of HIV patients that every time when they're going to in the mind is about oh they're going to go to react to a medication. This is going to be should I do it? Should I not do it? That constant pressure go there is very prevalent to them. And to be your own advocate that takes a lot of strength and persistence and self educating. Yeah. So not everybody can do that. People like you're very strong and you're brave and you are persistent. Yeah. A lot of people are not that way naturally. And that's okay. Yeah. But it's important that people like you and like myself who do have a little extra. We're a little maybe we have a more of a thick skin. We have more of a fire where we don't take no. Yeah. And we push that we are a champion like you said. We champion it so that we can kind of make the road a little easier for other people who don't necessarily have the means or the capability to do all of that. Yeah. And I think yeah because we have to give it the push that kick to people because we we have to become role models for them and inspiration to people because oh oh it's a way. Oh it's a it's a different way to see it. Oh oh I didn't know this. So that is important to champion. And for me as ambassador of hope I and now I call myself as a global ambassador because it's working with so many cultures around the world. It's about to help the activists and the advocates to work together and me supporting that because I'm a communicator. And I want to put the conversation to to governments to institutions about changes. Yeah. And that's what I want to because people ask me oh you're an activist. I said no I'm not an activist. I'm an advocacy. No I support everybody who do activism and advocacy. I do help them. I want to support them. And that's my role. And you but you are all those things as well. Yeah I'm good. Yeah. But but you know when when when you are as an ambassador you are able to communicate. You are you able to to go to places because people will see you in a different way compared to if you are an activist. Kind of like a diplomat. Exactly. Like that. And that's that's the way to kind of to able to talk about cancer to talk about because on the same time I want to talk about cancer. A should be on our mental health. I love I love that you said that because I've never thought about it like that. But it's more how I view myself because when you think about an activist specifically an advocate to an extent it's someone who is fighting for their community. Yeah as an ambassador you're bridging. Exactly that's a that's a good distinction I love that. Yeah and then and that's what I I I try to convey that to people. So I'm a communicator. I want to get it basically across I want to help your message to be delivered to the people without confrontation without that judgment. Exactly. Let's not polarize let's not vilify anyone. Exactly but that's that's what I'm like now I work with the GTI. I just like know about gene therapy initiative. Okay. Which I want to I'm an advisory board. Very great. And we work in in different we work about about HIV and we work about sickle cells. Okay. And prior to this meeting that was I was in a in a in a meeting and talking about my role as the face of the organization because we want to make sure I can't able to talk about sickle cells I can't able to talk about HIV talking about different things. And that's what that's my role is if I call myself an activist the people will think of me now in one direction and that's exactly no one to do that but I support 100% all the all the activists in HIV trans rights equal mental health same you know I support all of it and all the support and work I think we're on the same page yeah that's good. And so that brings me to what is what is your experience working with the HIV community and working with you know different organizations and stuff what how is that what has that experience been like for you? Um it has been uh eye-opener. Okay. I'm I wish I can say it's been wonderfully um excited knowing how it's been an eye-opener it's been challenging. Okay that's surprising. Surprisingly yeah because I've been discriminated by my own community because I'm not part of the club anymore because I'm cure so do you know do you not confine with our policies we do not confine with our message we we can we find it difficult to work with you at this point in time yeah and that's a reality with people. People don't want to work with you. No because I'm cure and it doesn't work with their charities or their organizations. I I just I find that so shocking uh I'm just very disappointed I'm disheartened by that I think I don't understand that um what why do you think why why do you think that is what's your takeaway? Um fear of um changes and I think they are frightened to they're to set in their in their minds about treatment and live a healthy life and we we have no change that we we still fixiating in treatment prevention treatment and we don't talk about cure we need to talk about prevention treatment and cure um it's very few organizations worldwide that are dedicated in today in their cure research and I am involved currently with some of them um A funds in the Netherlands and they are they're stepping ahead from that another organization now like I'm far they're stepping into the cure research and they're stepping they're doing a step forward into the and but another organizations are not willing to to move and it is appointed it's appointed because I can see what they do and they try to kind of avoid me so I want to dig into that a little bit more you mentioned fear yeah um that they want to focus but there's something there's a component I feel that's missing what are they really afraid of you want me to be frank yes to lose at your jobs um they lose the livelihoods that's one of the main thing that's what they worry that their whole purpose is is finished is a final cure so that's no more purpose for them and I think it is that it's so sad because it's so much work to do I'm very happy to be cure or HIV I want people to have the choice to have that choice of you can have treatment but you have a choice to be cure and I want to see the next generation know to embark in the HIV journey so you think on some level they don't even want the cure to happen yes I you know I have to realize sad reality or that to realize some people don't really want that and even they try to tell you they do but really they don't I'm for example and yes it's so that was the biggest shock because I was discriminating being HIV man I remember people telling me you don't want to be near me because I'm HIV person um but to be discriminating for the people who are in the same boat as me yeah that was I still even to even to this day I'm really disappointing yeah but I I'm resilient I unsaid no I will not allow these organizations or not even the organization the bosses or their management to make me think twice I think no you need sooner or later they'll need to change I'm glad you make that distinction too because there are times when organizations are vilified for yeah their behavior things that they focus on etc but I like to remind folks that 99% of the people at the organization are good hearted people yes they are working caring who want good results but it's the leadership yes yeah and some of the leaders they will know what they want to engage with you they will say to you yes of course we go to support you we're here for you uh that's a problem when you ask so come on what can we do not right now we cannot do anything at this point in time let's do a bit later on the years past and still nothing happened that's blows on my mind and this is the people who say to you they go in a day today talking about HIV have wonderful HIV life is and you know we're supposed to prevent and treatment and you know but here is not a problem so and I've had my own suspicion about this kind of mentality myself just because I'm with my own experience to be totally transparent after I before I was diagnosed I didn't have health insurance I couldn't afford it I didn't know how I was going to be able to afford I was waiting tables you know after I was diagnosed I was able to get the best private health insurance that I could find complete it would have been eight hundred nine hundred dollars a month for the monthly premium completely covered free um as a result of having HIV so naturally in my head I think wow and I would joke I would joke with my friends to say hey you don't have health insurance you want some free health insurance I'll give you my HIV you win the lottery you win as a joke but in reality that's a that's a truth and a reality for a lot of people a lot of minorities people from low socioeconomic backgrounds who can't who would never be able to dream of having a lot of government subsidized programs when they have HIV suddenly they have access to healthcare they have access to other treatments they can get you know food assistance a living assistance there's there's a whole spectrum spectrum of services that are provided to you once you are positive with HIV and so the prospect of a cure is a threat to all of that yeah when I was just in San Francisco like I said one of the the other co-chair she actually spoke up in front of the scientists and the researchers and everyone and said people benefit from having HIV in those communities yes yeah that's true and what you're seeing is for me because I I crossed the line from the HIV world to the HIV cure yeah I when you crossed the line and you you thought you were going to be embrace and celebrate completely and instead I hear instead you go the door close thank you but no thank you well and then you're thinking wow this happening before and it do happen it do happen to team of team right brown it did it did you communicate yeah I did communicate with him before he died okay so we have a look I didn't know he passed away yeah he passed away ignorance he passed away in 2021 um and he was struggling uh and his cancer came back and he died sadly died but in the developing world in the western world in these fair world societies we have we are privileged enough to to decide to be in treatment yeah and to be in the healthy life the lower middle countries they have no choice yes they just want to be cured they don't have access to treatments so for them it's a light to their sentence it's a still you're going to die with HIV and you're going to develop AIDS and we we live in a society which I had to experience after being because my journey with HIV it was more private compared to now and I think people don't realize um I think most people have a very private HIV journey you don't tell so many people you tell you only your closest friends and you live your life yeah but for me now different I thought that the the changes of attitude towards how people talk to me people have said to me but I don't care about to be cured I also very hard to swallow I have to swallow when somebody tells you but I don't care when they say I don't care to be cured of HIV I'm in treatment I don't care to be cured HIV the arrogance to even tell me that in my face at the very least it's insensitive to you yeah but it's it's an ignorance and arrogance that of their of their mindset to even think you've been privileged enough yeah to able to say you're okay with treatment yeah you know it reminds me it's I don't want to equate the two but it reminds me of with COVID with vaccines yeah we're privileged in the western countries to even have access to vaccines and yet this is where you will find the most resistance I don't want a vaccine and all the conspiracy theories and all that and other countries desperate to have it please give me something give me something exactly and that is why um like myself I'm I go for COVID vaccinations on double triple quadruple vaccinations and the next one yes I have it and yes I'm people as you say people talk about um oh I don't want it but I but people change their that narrative with monkey box we go and game with that one so it's kind of like we work on these perceptions it's oh we can oh do I need it do I want it you have that privilege to go into that do I need it do I want it people in the loving of the country they have no choice yes they will die for illnesses and and then when I was going back to you when somebody told me in um couple of months ago um well I don't care I I live in a healthy life in my HIV I don't need to be cured I remember that table went quiet silent because how and this is this is something that I have a conversation with folks who watch my content is they're fixated on the cure when's it gonna happen when's it gonna happen I'm gonna be I'm gonna be in the state of panic and desperation until there's a cure and I say live your life exactly medicine don't worry about it it'll come when it comes but in the meantime you can live your full healthy life that's very different than saying if there's a cure I'm fine I'm good you will not say that we cancer you will not say if somebody tells you you want to live your life with chemo regimes every other day that's about something that the the underlying reason is about something other than oh I'm fine on the medication it's not that's not the reason why there's something underneath and I I think we have now as a community psychological attachment to HIV it's a part of who we are it defines our community yeah it gives us value it allows us to connect it's something that we all these pain we have pain and trauma we have a reason to fight if we lose that we lose part of our identity yeah we lose physically a part of our body it becomes a part of you it's in yourselves yeah we'll lose a part of who we are and I think that's very scary for people it's like who am I without HIV yeah and then and the thing and when they asked me when they tell me that double statement I had to look at as you say what you were thinking about the sense of fear that I don't belong anymore to this so who am I that sense of identity the stop but we need to change that to say even if you are cured do we always will be part of the HIV community yes and don't be afraid or the changes embraces we don't tell cancer survivors oh you can't you're not a part of the community anymore if when you're a cancer survivor you always are a cancer survivor you carry the torch for the community exactly and like be perfect to me and then when I had actually I have to tell people listen folks I am going to be part of the HIV community no matter what and people were like oh wow thank you Alan for that I felt like I didn't see you you leave them behind you leave them behind so no I was you let me behind it was not the opposite around you let me behind and I said to people I am part of the HIV community and I always going to be part so don't be afraid of the changes but changes will happen thank you well we are I feel like we could talk for hours but we're running out of time and so I do want to wrap I need to wrap this up you have a very busy schedules and so let's see what what's next all right what is next for Adam the London patient is to change the narrative of HIV is to embrace my role as ambassador of hope to change the perception of HIV and to work with the researchers around the world and to find a more feasible uncurable for everybody and I think we have to look I want to be in the front about life after HIV and beyond I want to lead the way because we need to find the nurses doctors and people that understanding life after HIV and your life doesn't doesn't stop just because you're talking about life after HIV doesn't mean that we stop focusing on life with HIV both can exist at the center and they complement each other exactly because I want to find I I'm happy to be cure HIV I'm delighted and as I say I'm but I want other people to experience that I want people to able how the choices to find the cure and to live a healthy life and one day HIV is part of the history it was a disease and it's curable now and people don't have to be so stigmatized so discriminatory behavior we still face it day to day life and that's what a majority is to change it's a huge task but I'm willing to embark on that journey and it's going to take a lot of people working together yes and I would say to people don't give up on hope I never did so keep keep the fate a cure will we happen so I know it's difficult to believe no matter where you are but cure is on the way and I'm working around the club we money many research around the world to find a cure in different ways we're getting there we will so don't lose your hope beautiful thank you thank you for having me thank you for coming here thank you for having me love replaced I hope that we can in the future yes have more conversations yes of course I this is one of the best interviews I've ever had yeah I think we connect on a lot of things so I think we can have a lot of great conversations that are going to be beneficial to a lot of people because in the future I want to do my podcast oh it will be the alphabet and me because every letter like HIV c for cancer and for mental health the alphabet and me in my podcast that's what I want to do in the future thank you um people who want to follow you what you're doing we're going to follow me at other London patient and in instagram at London patient hope and twitter so I'm online they can in facebook as well we're going to have family advocacy let's go and they uh they can find me and follow me and see my journey okay thank you thank you for having me thank you thank you okay bye folks bye