 Hi everyone, I'm Raif DeRozzi and in this video I have the great pleasure of interviewing our special guest, Marc Franke, otherwise known as the Dusseldorf patient. We'll get to hear about Marc being cured of HIV, his successful leukemia treatment, what the whole process looked like, and get to know him on a personal level as well. We are currently in Novato, California for the annual HOPE conference, a meeting with all the scientists from around the world, discussing the block lock stop. It used to be known as block lock excise, modality of preclinical research for an HIV cure. Specifically, we are at the beautiful Buck Institute, which focuses its research on aging, including aging with HIV as part of their spectrum of research. Alright, so nice to have you, Marc. Thank you for agreeing to sit down with me and have this conversation. Thanks for having me here, and I would love to share my story. Yes, let's do it, but before we dive right into your story, I want to ask you a general question that I ask all my guests, which is what is your personal assessment of the global HIV AIDS epidemic? Well, I hope that in the near future we can stop it and that the scientists find an HIV cure, because I can't recommend the way I went through, but I hope that via gene therapy this will be possible to recreate for everyone all over the world. So you had your stem cell transplant over 10 years ago? Yes, I was transplanted on Valentine's Day 2013, so now I'm over one decade after the stem cell transplant. Well, what a romantic day to have your, I don't know if you celebrate it. And I celebrated it with family and friends, and also my stem cell donor was there and my doctor. That's interesting. You mentioned your stem cell donor, because I really don't have any information on that. No one really talks about that as much. So you were able to meet your donor? Yeah, in Germany it's possible if the donor wants the connection and the transplantee, and both want to know each other. After one year they can connect, and after two years they can exchange data. And so I met Anna later, and it's a great relationship. And she forced me to share my story and go to the media. Amazing, I love that. But before we dive deeper into your story with HIV and with cancer, I want to get to know you personally a little bit, if that's okay. Can you tell us where you were born, where you grew up? I was born in Germany in a little town, and then I studied electrical engineering, and now I work as a technical writer. Is that like technical manuals? I'm working in a software company, and I'm doing manuals, and also looking about all the words that I come up with the software, and we translate into 13 languages. Yes. So those of you when you get those thick pamphlets with all those languages of technical information, think of our friend here. It's only Electronica now, we only have a portal, and you can download PDFs, but we don't print it anymore. Saving paper. Yeah. Okay, you told me this earlier, but this is your very first trip outside of Europe. Yeah. It's about time. Congratulations. I'm glad that I was invited to meet these conference and to share my story and to tell it to the scientists and to inspire them with my story. I think it's very important to see the people behind the numbers. The scientists only knew me as a number, and I was very glad to meet many of them in Germany and in the Netherlands, because most of the work was coordinated from Utrecht from ICSTEM, the database where all the patients, the HIV patients that became a stem cell transplant are collected together to compare all the cases. Wow. Utrecht is my birthplace. Yeah. Special. Okay, well, I know you haven't had time to step out on your own. How are you liking America so far? What you've seen of it? I didn't have seen so much. I was in a grocery store and I was shocked about the prices. If you compare the same Marmor late from Germany to the US in Germany, I think it's under three euros. And I saw the same Marmor late for 799 plus tax. Yes. And I was shocked. Yeah. I was in the Netherlands under a month ago with my mom. We were in a grocery store and I saw the same things that we have here, Dutch cookies and snacks. And I was like, they're so cheap. Why are we paying so much? So going into your background with HIV, when were you diagnosed with HIV? I was diagnosed in January 2008. And the doctors told me it was a fresh infection. So it should have been maximum three months ago that I was infected. And well, it was a shock for me because I thought I played safe. But really? Well, with my boyfriend, I went to the HIV test. But with the last one, he was a chef and we couldn't make it to go there. And well, well, it happened. It's with pregnancy one time counts. That's a good anecdote though. It only takes one time and it doesn't happen all the time. It's just, you never know. So it's good to get tested. And I learned in Germany it's free if you go to your doctor and you tell them that you are homosexual, it's for free. But most of the doctors don't know. The doctors don't know that? Yeah, because they don't know how to get the money from the insurance company because they have to have another procedure. So mostly most of the times you have to pay for it because the doctors don't know. So they might know that it's free, but they don't know how to get reimbursed. Well, isn't that a summary of the problems with healthcare systems? Not just there, but in the US too. And what was your understanding, since this is 2008, what was your understanding of HIV in general once you have it? Well, I was born in 1969. So when I grew up, I had the pictures in the media that are frozen, all the people dying. And that was a shock for me because if you don't have it, you don't think about it. And well, then I learned it's not that problem as it seems to be, but the worst thing is that you can't talk about it because of the stigma. And I think without the stigma, HIV will be a better handle, but we have to fight against the stigma. Yeah. And truly, HIV can be eradicated today with PrEP, with ARVs, with U equals U. Oh, and people get to the test. And testing, yeah, exactly. So yeah, it's a shame that stigma is such a huge hurdle to that. Did you have any kind of negative perception of people living with HIV beforehand? No, because I didn't know anyone. Oh, you didn't even, it wasn't even in your view. And I think a lot of people can relate to that, too. Well, and now I learned such great things about meeting groups and didn't know about them. So if I would have joined them, it would have been much easier to handle the HIV diagnosis. Yeah. And did you personally experience stigma after your diagnosis that you had to? Well, I didn't tell anyone, only a few very close friends, but not the family. So because I was afraid of the stigma, I didn't tell anyone. Is there much visibility in Germany of prominent figures, people living with HIV? Not really. We had a time when there was an outing of homosexual people in the media, but no, I think no one stands to his HIV infection. I only knew some people, for example, Jean Grant, the singer-songwriter. I love his songs and his music. And so I asked the TV stations that produce something about me if they can use his music. And one in one video, John's music is in the background. So I'm very happy for this. Well, no one knows about this, but it's very important for me. Yeah, it's special. And when did you find out that you had leukemia? I went to the ambulance because of lung infection. And it was a lung infection. And at the first blood test showed that there is something wrong. And so the lung infection was cured. And after that, they cared about the blood and they made a Knochenmark function, a bone marrow function. Into the spine? Yeah. Oh, yeah. I forget the technical name. But I know what you mean. Do you get your spinal fluid? No, not the fluid, the bone marrow. Bone marrow. Okay. Oh, that's painful. Yeah. I loved it. Okay, so they did test of that. And then it was acute myelone like in your AML. Okay. Okay. Timothy also had AML, Paul had AML. It's common for HIV people to get cancer and these kind of like in your... Oh, okay. So you think that so it's possible that the HIV contributed to your risk factor of getting this cancer? Well, I think it's about a third greater risk. Greater risk to get cancer. I think Adam mentioned that to me as well. You're married? Yeah. I'm married. Okay. How and when did you meet your husband? Well, when I was lying in hospital because of the Pneumonia. Pneumonia. Yes. I had time to chat at Planet Romeo and I met a guy from the bed. Yes, from the bed. And I hadn't changed my city. So I said to him, well, I'm nearer than you think. He lived in Düsseldorf and so I asked him to visit me in the hospital. The next day he came and then he visited me every day. Well, so that was a big chance for me because I had to be prepared in the evening to look good. So the chemo's didn't hurt me. And the doctors looked at me every day and said, well, you're fine, but you shouldn't. But so I think the power of love guided me through all this. What an incredible story touching. And what a man to. Yeah. Ingo is a teacher for disabled. So he's looking for the people in another way. He's not looking for the illnesses. He's looking for the humanity. And so he wanted to know me and that was great. And that helped me a lot. Tremendous compassion and empathy. Oh, that's amazing. Is your husband living with HIV? No. Were there any, well, I think you've already entered this, but were there any challenges with you living with HIV and him not living with HIV? I was lying in the hospital. We didn't thought about our life and we wanted to know each other and I would know that he was the right guy to live with. So that was my inspiration to get through this and to get back on my feet to know him better. What an amazing story. What was the initial news like when you were told we found a donor with this mutation for you? Well, that was later. In 2011, they started with normal chemo. And I got back in my life seven to eight months later. And in 2012, there was a relapse of the leukemia. And then the doctors told me this time a normal chemo wouldn't work. So I need a stem cell transplant. And at that time, they thought, well, if he needs a transplant, why don't we try the things the scientists at the Charité did with Timothy and Timothy Ray Brown? Timothy Ray Brown, the Berlin patient. And at that time, I was watching a documentary about Timothy. And I said to me, well, if it worked once, why should it work with me? And the doctors asked me if I will wait. They had to look after each donor that will fit for me and to then to search if someone of these has the gene effect. And so I had to... And at this point, how long were you in a relationship with Ingo? The second year. We met to January 2011. And it was October 2012. And so you had this conversation with him as well, letting him know, okay, we're looking into stem cell. Yeah. The doctors asked me, are you willing to get more chemo procedures for the time waiting for the right donor? And I said, well, I will risk it because I wanted to get rid of HIV. And was your experience of the chemo really demanding on your body? Well, I had the great luck that it didn't really hurt me. Some people have problems with the tongue and can't eat and have to be the food by a tube. But I didn't... Well, the doctors told me, gain weight, you will lose a lot. Well, it didn't work on me because... Do you just gain weight? No, I gained weight, but I didn't lose it. And well, I went very well. Amazing. And then, it must be mid-December, they told me they found the right donor. And this was the biggest Christmas present ever. And well, then the donor has to be prepared. And the transplant was on Valentine's Day 2013. And I'm sure they told you that there are risks inherent with the procedure as well? Of course, because your immune system is erased. Not existent? No, not existent, because if there is any virus or bacteria, you can die. And they need to do that in order so that your body accepts the transplant? Yeah, your own immune system has to be killed and then... Otherwise it would fight the transplant? Yep. And then the new transplant comes. And this is interesting because it's only, I think, 250 milliliters of blood, the T-cells, and that's it is. You get a needle, a fusion, I think not half an hour and that is it. And it's interesting because the transplant is frozen and they got a gluco that the cells are not damaged during the frozen procedure. And the gluco makes your tongue smell like tomato and you taste like tomato and you smell like tomato. If you get the transplant and it's crazy. So you're temporarily a tomato? Yeah. Okay. Thanks for going to detail. That's really interesting. I never heard all that before and it's such a quick, simple procedure. Yeah, and then you have to wait that the cells found the right way to the bone marrow and to start producing new cells. And so I imagine that eventually the doctors allow your immune system to rebound, come back online. And then they have to do something to make sure that it doesn't start attacking the new cells. That's called immune suppression. You get special pills to lower the immune system that it's that the old is not fighting against the new one. This can normally it's up to one year that you get immune to permission. Is that hard on the body to experience? No, well, you have to be careful. If I went outside, I had to wear a FFP3 mask. And at that time before COVID, I was the alien in my city. And because the people think that you will hide something from them, but I had to protect myself. But it doesn't look like you're protecting yourself. Yeah, I can imagine before pre COVID, now it's like, okay, yeah, okay. And so I and I've said this before and I want to reiterate it again for people watching. The transplant involves a rare genetic mutation, the homozygous CCR532 mutation. And as you can tell from Mark's story, this is not something that's viable for everyone to just suddenly say, oh, I want to stem cell transplant because I have HIV. It's very specific for people who don't really have many other options. Yeah, you mentioned the homozygous in 10% of the European or the Caucasian population. This gene mutation is present. And homozygous means that it's given from the father and the mother. So you're 10% Wow, has to be both. It has to be both a 10 multi plus 10 means 1%. So it's very rare. I see. So you need a donor that that matches plus the gene defect. And this is a needle in not only in the hay, it's on on a big field with hay. What's the case? Hey, slacks. Yeah. And it's predominantly that mutation is found in the European region. Yeah. And that's why most of the donor recipients are from that region as well. Because people might say why are all these white white men getting the transplant in the but that's on a genetic level. Yeah, they suggested it was because of the past, but it's proven that it's not but it's something a disease that was in the middle age. And so it's. So that's an example of an endogenous disease that was once prevalent that is no longer impacting humans, but it left it left a change in DNA that's ends up being positive. Yeah. Okay, cool. Okay, yeah. Can you give us a little sneak peek of what that experience was like for someone to call you or sit you down and tell you that give you the results of the transplant and tell you it was successful. Well, I had to wait a long time to see it is successful. There were so many side effects. Perhaps the shimmerism fell down. Shimmerism is the. Chimerism. Chimerism is the percentage of the new cells to the old cells and my chimerism went down to 70%. So they had to push the immune system. And so I got a special chemo. And this after the chemo procedure, I got a new T cells from my donor and that managed to get rid of my old cells. And also this is a high risk procedure. So lots of monitoring complications having to adapt and change things and try a lot. But you did it. Yeah. What got you through? What was your mentality getting through that? I looked forward because I wanted to live with Ingo and that guided me through this. I love that. Well, there were many other, but I don't think we have to mention all of them. Perhaps something is relevant to many leukaemia patients that live a normal life after it. It's normal that 50% of these got a broken hip. And I also, my hip broke and I had to get a new one. But I was lucky to have this procedure in the university hospital. So they didn't, they can, could choose the best option for me. And so I got a keramic on keramic hip and ceramic and well, I will hope that this hip tap will last a long time. Well, you have a great energy and optimism gratitude, I think is the right word. Okay. So for 10 years, you kept your identity anonymous. Yeah. Well, if you have leukaemia, you have to give your life away for the whole procedure because you can't plan anything. And I read about Timothy and that he was big in the media and I said, you can't control it if the story is out. You can't control what the media makes with it. And I was anxious about it. My doctors told me, well, think about it more than twice, if you want to share your story. Well, I was first asked to be part of the power of love. That's a great community coming together in the Netherlands for HIV positives and their relatives. But they first asked me in 2000, but it was only some months ago that I stopped art. And I didn't want to be 20, 20. Yeah. And I didn't want to be the patient known to be cute. And one year later to tell those people it didn't work. So I said, not this year. And luckily they asked me more than once. But unluckily, I couldn't manage to meet Timothy in person because he died. And that was for me the thing to step into his feet and to tell my story. And at that time, I will only had given my first name and didn't show my front face because I was afraid of the yellow press. But now I can tell it didn't happen that they knocked on my door. What's the yellow press? The newspapers. Is it not a common word? I'm not familiar with it. In the US? The yellow press? I think. Like the paparazzi? Yeah. Tabloid? Sensational? Okay. Yeah. And Adam told me about his experience. And so I was afraid that that could happen to me, but it went good. Great. And after the article was in Nature Medicine this February, I said, well, I will show my face and support my doctors for their work. And also I would love to fight against HIV stigma. I would love to encourage people to have their blood tested for stem cells. There are different organizations all over the world who collect these samples so that more people that get cancer can be cured. Yeah. Fantastic. What's, well, you touched on a little bit, but what's next in store for you, either personally or professionally? Well, I hope that I can do this work a little bit more. At this time, it's a good, because not everything is coming up at once. I did some TV shows in Germany. I was invited as a guest of honor to the Amsterdam dinner, the biggest charity event in the Netherlands. And I would love to do such things in the future to show my face, to have my face in the media and to encourage scientists and to tell people it's possible to have the HIV cure. And I hope that the scientists put together the puzzle pieces from all the cases and to can recreate the therapy with gene technology. So I heard a lot of it today. And I think those scientists are, I think they can see light at the end of the tunnel, but we don't know how long the tunnel is. But I think we can, we can think about having a cure. And it's being approached from so many different angles, so many different strategies, all at the same time. Yeah. And if you can compare all the cases in the ICSTEM database, they are all different. Perhaps the Genevian patient, he doesn't have the gene defect, but he's treated with a special medicament to treat graft-versus-host. And the side effect of this medicament is that to get rid of the HIV reservoir. So that might be another puzzle piece. And this work also informs research into any number of other illnesses and diseases too. So it's really what benefits the HIV community. It benefits the whole world at the end of the day. Back into your personal life a little bit. You know where I'm going with this. What are some of your hobbies? You told me about one unique collection that you have. I collect CDs. I have a big collection. I think it's near 1,600. And that's not just the CD itself. It's the jewel case as well. Yeah. Because if you just have the CDs, it takes up less space. But if you have the case too, that's a commitment. Why not records or just MP3s on a thing? Well, when I grew up and CDs came out, it was the holy grail for me because you can have a sound without scratching the needle. I hated this. And I hated to turn around the vinyl for the second side. And it was great to have a remote control to skip through the songs. And if you buy vinyl now, it's much more expensive if you get the one-steps things. I think they are about 200 euros or a dollar. And it's amazing. So if you get the CD of these things, it's much cheaper. All right. Well, thank you for sharing that. I put you on the spot. Before we wrap up, is there anything else you'd like to share or discuss that we haven't touched on yet? I would love to have the focus on my stem cell donor, Anna. I think she's a great girl, a great woman. And when she got my first letter, it was the first day of her chemo because of breast cancer. Wow. You can't imagine how big the whole story would be. Do you think she would be open to chatting with me as well? Of course. Really? Okay. I would love to have her on. So they can make a movie out of it. My doctors told me they want to say who's playing them. Oh, he wants to say? Yeah. Is there anything that you would like to promote? You sent me a great list, a document of articles and videos and all a bunch of different resources covering you or things related to you.