 Hi everyone, thank you so much for joining me. My name is Raif Derrazy and today I have a very special guest and we are going to be talking about the Hope Collaboratory as well as some other things related to HIV. She is a friend of mine She's someone that I work with also in the Hope Cab. Her name is Patricia de Feshoreau. Did I pronounce that correctly? Well, thank you so much for being willing to sit down with me and talk I know you're extremely busy, so I appreciate it It's a delight Raif. I Feel very grateful and blessed that Hope brought us together. I enjoy the interactions that I've had with you and I have So much admiration for the work that you're doing Through your social media your advocacy and the way you've picked up the baton as our Hope Community Advisory Board co-chair and The group of people we are working with is amazing very blessed So I've explained it before but in your words, can you explain what exactly the Hope Collaboratory is for folks that aren't aware? Well, the Hope stands for HIV obstruction by program epigenetics and it's a very complicated mouthful but it's basically a developing a new approach to eradicating curing HIV and a Collaboratory is because the NIH has been funding a number of groups of researchers each group dedicated to developing approaches to curing HIV So there's 10 of them and the Hope Collaboratory is focusing on an approach that you may have discussed Before which is called block lock and excise We're basically what we're trying to do with HIV as you know Who remains hidden in the cells of people who are living with the virus is a way to blocking it so you cannot Multiply and create the havoc that it creates in our bodies, right? And once we block it we want to lock it in place so it cannot come out again and and multiply and destroy the t-cells or other you know cells of the immune systems and Possibly excise it at some point that excise meaning cutting it out removing it or Cutting it in some ways just the HIV DNA which is the material of the virus which is hiding in our cells That it cannot do Anything anymore and it'll just remain there like a remnant of a former self if you wish with no harm Hope you know no harm to the people who are living with with the virus That's a when you say lock the virus in In in in its container in the body. Isn't that what the medicine does already? What's like? What's the real difference there? well that The antiretroviral therapy what happens with that is that yes, it locks the virus in place and it Suppresses the replication. I don't want to use complicated term But you know people may understand that a virus when you get infected with a virus You have the virus goes in your cells and it hijacks your cells and uses all the machinery to multiply Antiretroviral therapy does it's like it stops the virus in its track and it cannot multiply But if you remove and you don't take your medicine then the virus may wake up again from where it is and start multiplying again and causing you know negative effect on the body with the block lock excise and other cure approaches the idea is that you Intervene but then you don't need to be taking your medicines every day For the rest of life. I cannot speak for other, you know specific cure approach because I don't know them all but lock lock and excise we're hoping that it would be a combination of Methods to get to the state of block lock and excise and once you've done that, you know You could be free of having taking a medicine every day and you would be you know You know cured from you know from HIV. Yeah So I'm I'm curious how you Got to where you're at. I mean, I think most when we think about people in the HIV research field we We don't necessarily think about them as three-dimensional human beings who will have lived a whole life They're just oh, they're the white lab coats, right? So I'm curious what got you into it I'm assuming you weren't a little girl and decided you wanted to go into HIV virology Research, so I'm curious. What point did that kind of become Important in your life and then what did that transition look like? Well, you know, that's a really thank you so much for asking this question, right? Because I often think about my path in life and it's true. We are not Unidimensional not ever Bitimensional even try to meant right we have all these identities and society tends to kind of reduce people to only one And that creates a lot of problems in society and distrust distrust and Reductionism and discrimination. I mean the whole gamut I grew up in I didn't have an easy childhood, but I grew up in and that's shaped who I am today But I grew up in a family of artists both my parents Oh rife I can't see you anymore. Oh, there you are. I was highlighting you You scared me see that shows you how No, well, I didn't grow up in a family of computer techs and social media specialists I my parents were both artists that there were not tech savvy, you know My mom is a ballerina and my dad was a stage manager for the opera so I grew up on the backstage of a theater and that was always part of of My identity being growing up and my mom said you could be anything We could be anything but don't be a dancer because she was a ballerina. It was a very very tough Life and from a very early age. I was just passionate about nature biology Animals and I wanted to do something that was aching to that field and Somehow I started biology. I wanted to be a vet. I wanted to raise horses But my parents kind of said, you know, I don't I think it'll be too hard for you And somehow I went into the biology, but very interestingly rife from a very early age when I was in college there was a drive that I wanted to go to virology and There was this It was really Bizarre it's like I started my studies and it was somehow I Knew I was it was going to be viruses and when I was in my third year of college I Just really got you know mesmerized by bernard hantier who was the one of her virology, monology teacher and he had a lab and I was like, oh, that's where I want to go and I want to do my Teases when you do four years of college the last year of your college. That was in Belgium in Liege. You Have to do a memoir as we call it and I really wanted to be on viruses and when I got accepted in that lab I Started working on her piece viruses and I was really passionate about it and I did my PhD and then somehow in my head somehow HIV and I was like I knew I wanted to work and it was mostly driven by the disparities and the fact that It was associated with so much Human component, I guess you would say was this during the AIDS epidemic when it was Yes, it was it wasn't Yeah, I I moved to the US in 98 to do my postdoc and I started, you know wanting I met The the person I followed to the US Eric Verdan at that time When I was you know, 96 97, yeah So, you know, it was very early on with new meds that were but the discrimination and the The upheaval I mean those those days it was pretty intense and I was so devastated to see all that was happening in Africa And that's really what drove me. I was collecting all the clippings of and I just wanted to to be involved in and Do my little part, I guess, yeah, it was not an easy journey I can tell you that it was not but That's how I ended up in San Francisco Sorry, it's so interesting that how your path went being coming from such a creative background in the arts Did do you find that there was exposure there that you had as a child being backstage with different performers of different backgrounds ethnicities sexual orientations that kind of Intersected with what you were seeing was happening with HIV. I There wasn't like a clear cut OH IV and the people I grew up with but I was blessed that my parents had a very open I guess without with it was not like You know these day we talk about woke and there's all this thing going, you know There was none of that but my parents were just open-hearted people. I guess and my dad his friends Were gay, I mean on the theater. I mean we didn't even bat an eyelid. I mean I didn't you know, it was my mom she would go and She danced her whole career and most of her part partners You know, prim she was a prima ballerina She they a lot of them were gay men and my grandparents in Ireland People would come over. I mean I was lucky to have a family that was Really Warm-hearted I guess in that respect and maybe that's subconsciously is just made me the person that I am today that I You know take people at face value or with a label, you know, yeah, I remember my only experience with someone with HIV Who I assume had AIDS was in the early 90s my stepdad Had a friend come over and he was Randy and I think it was maybe the once or Only two times that I ever saw him he came over and he would look really gaunt and skinny and pale and I remember my dad saying like not to hug him to keep distance from him and Then I never saw him again and and then as I got older I kind of I put two and two together of what that was Oh, that was that was a gay person and that was a gay person who died from this disease And that was my perception of the world. So it's like a very different contrast from what you're telling me What you learned through osmosis through your parents Okay, it really just makes me so sad because I've lost friends who were living with HIV and This this this comment that you just made, you know Don't hug him, right? I mean has human beings the power of touch. I mean even talking to you I mean my I feel my skin. I'm getting like goosebumps all over in palliative care a lot of the folks that people want that just to be held and once again, not everybody some folks will say Oh, I won't I don't want but I think For a majority of people just the power of touch skin is our biggest sensory organ and and what we've seen through the HIV epidemic where people were not even hog the care and we saw it again with COVID. I mean To me, it's yeah In your most vulnerable state Absolutely, and there was and that's why education is so important like, you know How do are you exposed to the virus this virus or any other virus or any other disease for that matter? but the stigma with HIV is so Pervasive because it ties in with the whole societal attitudes or sex and sexual pleasure and intimacy, right? Which is a huge taboo and you cannot engage in conversations around HIV may it be cure but you know most for prevention or even treat for anything without talking about You know pleasure and intimacy and the desire for connection You know that people have and for pleasure and there's nothing wrong with that, but oh my god, you know sex Yeah, and part of that separation Exists has existed between health care and the community when it comes to HIV And so like you said that skin-to-skin contact I remember early on when after I was diagnosed a doctor who was wearing gloves Took the effort to take off his glove and then touch me with touch my hand with his bare hand And I just remember being shocked like that was so profound for me that I still remember it now And how much that meant to me that like they weren't scared of me So and I thought in some way hope the hope cab is doing that You know, it's kind of we're taking the gloves off and saying let's hold hands and like do this together It's wonderful. I I mean the hope Leadership the scientists so you may have shared with your community audiences, you know Suzanne valentine Melanie odd and leash Lish and lovo and And that reflects to the entire Collaboratory as a whole has really this desire to put the gloves down and work together right because there's a really great support for You know the work that they're doing day in and day out. I mean if see them work I mean it's the hours the long hours the all the The incredible amount of effort to run these labs to find the scientific, you know, the granite gritty of the scientific And also this, you know that when they're talking to me, you know, yeah, what how can we support and you know It's really amazing to to feel that support. It's really not lip service. There's really a strong desire And I think yeah, go ahead. No, I was just gonna say when I saw Melanie is a gummy bear earrings the first time She's not the stereotype that I was thinking I was getting into But that's staying right the stereotypes all those stereotypes that we have both on the on all of these fences of barriers There are between people right there's all these stereotypes. I mean I was I don't remember It's like Generations are the shortcut to discrimination. I know we put things into boxes because it helps our brain to kind of engage in the world efficiently Right, but at the same time like people are so many different things and and to have an open heart and an open mind to say okay, well, maybe You know this gay person is not bloody bloody blah. Well, maybe this scientist is not bloody bloody, but I think You know that helps Connect, you know connect as as human beings on that we have to you know, yeah, I feel like it all comes down to What's comfortable and what's easy and it's much easier to Put things into a duality into a binary and it's much easier to generalize and then and then that's it You don't have to really put much effort into it it's like you categorize things and there they are but to be to look at someone and to constantly resist your urge to generalize takes constant effort you have to constantly be consciously aware and That isn't that isn't to say that it's always difficult. It's just a muscle. You have to practice And we all fall into that trap I think of just stereotyping and generalizing you just have to Consciously be aware that we have a tendency to do that as human beings. I don't I don't think it's an evil necessarily. I just think It's a unconscious thing that we do and that's what you said exactly. It's being aware because I think once the awareness and the naming is being done then there are ways to you know Guide ourselves to not with but not with self-blame because that's another thing which leads to a lot of other issues But to really guide oneself to oh, maybe I'm gonna see it different. That person has a story behind them there's a story for why they're here today doing this thing in front of me and And I think the more we have self-compassion towards ourselves the more we can be you know Operating in the world in that way and that infuses the work. We do right if you and I you know because there it's the intention I know Kevin who's on their cab always tells me brings back to what's your intention and it's true It's like what is your intention in? in your interactions and the work you're doing and and with self-compassion Yeah, well, we just went on a big tangent and I feel No, it's great. We could talk all day about many things We do we always do we always do I've been a rain in the horse a little bit here and I want to take it back a little bit Do some of your work that you've done in the past? I know that you were very involved with prep in the very early stages possibly before it was even known as prep Is that correct? Well, no, I think the the name pre exposure prophylaxis was already being used, but it's the it's with Yes, I had the privilege and I was not an easy road either at times But the immense privilege to be involved with the IPREx trial Initiativo prophylaxis I can remember even you know exactly what it says but which was the big trial with which led to the approval by the FDA of Nevada for prevention and IPREx was an extraordinary Study in as much that there was an enormous community involvement and also we made you know mistakes on the route in terms of how You know a better a job we could have done of I know of As a you know the whole prep field at the time to engage Certain voices at the table, but the study in itself was just an extraordinary for me from where I was in The core group that led the expert IPREx trial with Dr. Robert Grand and Vanessa McMahon And so many other incredible people was that we We really feel like we were so Incredibly appreciative to our study participants all the The folks who I They're superheroes right and folk because at that time we did you know people didn't know was it gonna be effective? Not that are and the people that engage in the clinical trials, you know and gave their time and their specimens and and Yeah, I'm curious yeah, I'm curious how that worked so I'm just trying to get into the mindset of someone at that time as someone who was HIV negative was signing up for this clinical trial and Trying a medication that obviously we're still figuring out whether it works and So are these people knowingly? Exposing themselves to the virus. No, no, no, no, no No, when you're doing those trials First and foremost the safeguards are in place. What you want is the well-being and the safety of your study participants so People who were engaged in the tribe were offered at every visit where they would came and give specimens and be giving their pills and why not messaging about What to call it safe, you know safe practices So it was nobody was out there saying oh don't wear condoms want to see if it works What you want to see is that in addition to all of these safety met practices that are being behavioral practices that are being Encouraged and explained and whatnot is that if in the addition the people who were taking the pill because Some were taking a placebo and some were taking the active ingredient and we did the same with the injectable prep You know protocol you do you're not saying people go and have you know on you know on canny amounts of Activities that would increase your likelihood of acquiring HIV. No, no, no, no You have it in a messaging, but within that con constrain You have the pill or you have the placebo, you know the activogen or the visible and that's why you need to enroll a Large number of people because you want these variations to be statistically significant and not just be you know So so they were essentially going about their lives as they would otherwise With the recommendation to can you continue safer sex practices? Yeah, and yeah, and and sorry I just want to add to that when you say going about their lives that as usual in In addition people were actually getting an increased amount of access to services because within the trial People would have STI testing the visits Access to other, you know blood tests and some folks were having their health monitored really more Then the because of you know, they would have had without being on the trial So there was some benefits there in a way, but I think it's still amazing that people, you know engage and do it, you know Do you was it designed that way in order to encourage people to participate or was that a necessary part of The clinical trials It's not there. There's no you don't want to lure people by give them incentive So, you know it even the money that people get to participate in trials It's because we want to compensate people for their time and their effort But it can't be and should not be anyways coercive, you know that people oh, you know And it's the same the stand its standard or care is because you want to make sure people are safe And if you're taking a new pill that we might have some effects on your, you know kidney function or Your liver function you want to make sure you follow people to the you know State of the art as best as possible and the physicians on the trial were very, you know, very Cognizant of that and now we have a lot of safety monitoring meetings where they're, you know looking at all of these Criteria and people tell It's almost like a fortunate byproduct of going through the clinical trial is that you happen to get Monitoring in a way that you wouldn't otherwise and in a form of health care that you wouldn't otherwise just like Since I was diagnosed with HIV. I'm getting a blood panel every six months and Being able to look at my body in a way that I never have in the past and that is to say It's not an encouragement to go get HIV because now you'll get blood work every six months No, it's a fortunate byproduct of the fact that I had a diagnosis now. Yeah Very yeah in depth care in that yeah I it's not it's not something that is done to entice people. It's just things that are being done because there are as many layers of monitoring to ensure safety and and and Accuracy from all of the data that's being collected And I cannot speak for all of the clinical trial because I've just been involved in a few but what I've witnessed first-hand Has been really thorough So yeah Well, it was obviously a raging success because here we are Well, it took it took a while because at first there was a lot of pushback. I mean, I think there was some I mean once again I'm not going to speak for everybody but when Just from where I stand my room I'm not speaking for my team or for any other institution but I feel Once the results came out and then there were other stored studies that were looking at prep as well partners prep you know, we're not the only one and There were a lot of pushback Which were linked to slut shaming and to the whole concept that people were choosing to go on prep after FDA made it public you know, it was like oh People are gonna have no are gonna go and have a lot of wild sex and you know kind of And even so like if people wanted to go and have a lot of sex that's their prerogative Maybe, you know, I'm not judging the behavior per se, but there was a lot of That idea going around where some people were saying oh I'm doing what I can to protect myself and my not acquire HIV and also protect my potential partners and stuff like that. So It took a while. There was a lot of pushback until some You know, there was a tipping point. We reached kind of at one point There was like and I think if you could have Bob on the on the on your channel He can talk to you about that in great detail where folks You know, it people realize, okay, this is yeah, this is gonna shift, you know, the course of prevention and I it wasn't Just the science community that was pushing for this change. I'm assuming Community had to be involved and I don't know where all the resistance was coming from but Well before you know before I think Before the trials, I think people were already Using maybe and twit, you know off label kind of going kind of community was I mean there was the history of that I don't remember the details and I'm not, you know, sure of all the when it all kind of began and once again I think Bob would be a great person or Vanessa to have on your show on your channel to discuss this But community members were yeah community members were really talking about You know this we want something else to protect ourselves and we would provide I mean it didn't just came out of nowhere community was very once again was very Aware had a lot of expertise and kind of You know was talking as well as long in parallel as the science was happening when they were showing in in models that prep was efficient You know could do, you know, this Preventive effect, you know in the scientific lab experiments in the animal models community members were saying hey So it came, you know, I think it also kind of coalesced in that way But I think when the the when The results came out and if they approved I mean, I remember I even have a t-shirt that something forgot his name So it was called prep whore because there was so much Pushback and I don't know what or who kind of initiated this pushback But it did it did happen and it slowed down uptake and then, you know, there was probably a lack of You know Campaign or or making it known and but but now you see what prep has become. I mean, it's you know wait, there's all conferences about it and and Yeah, so it's really bizarre to put myself back in 2012 or 2011 and When it was so yeah, well, I I just missed the boat on prep so to speak I remember I think that came out maybe a year After I was or at least that I was aware of it a year after my diagnosis But I remember kind of a similar sentiment happening around you equals you This kind of slut shaming. Oh you equals you that means everyone is just going to go around and and have sex and not care and and then somehow that's going to lead to more transmission which seems like a catch-22 but it seems like each incremental Point of progress. There's a sense of fear that the progress itself is going to lead to More harmful dangerous activities that will exacerbate the epidemic, but on some sense. I feel like there's some latent discriminate discriminatory belief systems that are kind of pushing that narrative along the way especially when it's legislative Yeah, I mean, I'm listening and to what you just said about you equals you and the I Wonder if it's the people's perception rather than looking at the positive outcome. Like you say, it's like the fear I mean with prep it was like, oh, you're gonna have a lot of drug-resistant viruses that are going to be selected. I mean, I Mean we even had a study which was surveillance people who did acquire prep Why acquire HIV while on prep? There's a few, you know There's been a few cases and they've been looked into in depth But it's like something new and I guess Who knows what subconsciously, you know, may happen before a whole there's a whole Sociological studies around that about what it takes for the adoption of a new a new approach and and I feel like the The desire that people have had to Take care and have another tool to take care of their own health and they have that option, you know, it's like it's client centered It's patient centered. It's like Here we are. Nobody's being forced to you know into taking something but What works best for you, you know, nobody we're not gonna force anyone to go take a prep or whatever It's like what what in the toolbox of things can we give people so that they can make the best, you know Choice and educate so that people have an opportunity to choose what may work for them Without the education, it's like if people don't even know it exists and that's why prep has been so I mean there's been lagging in in in the You know in in the outreach in in in different communities and I'm thinking about oh Jim His name escapes me this that this is the problem with Being so tired There was an amazing campaign spread love not with around prep It's Jim. I this last time escapes me. He's gonna hit me for this but He in Chicago AIDS Institute and he did this incredible to campaign spread love, which was really trying to go against Pardon Jim Ed Norman. No, no, no, no, no Spirit oh, like I lost you know Chicago The AIDS Chicago hell AIDS I'm gonna look it up really quick. Yeah. Yeah, look I Go AIDS Spread love Yes, spread love spread tingle Pick it. Yes. Yes Jim pick it. Yes. Yes. Yes. Yes Jim. Sorry Jim He's amazing. He's amazing. He's such a wonderful advocate, you know person but he did this whole campaign with images on the buses about people being in an embrace and It was all about spreading love and and tingles and joy then and to try to go against this whole slot shaming Yeah So pick it. Yes, Jim Yeah, I would see how advocates do incredible work all around Okay, well so back to the Hope Cab Mm-hmm What are your what are your hopes for I know this is the first year that we have formed our cab? There's more around around the nation, but ours is this is the first year We for those of you that aren't aware we we are following the HIV care research So with that in mind and with connecting scientists and researchers with community. What are you hoping to achieve? Maybe For you personally or for our cab specifically moving forward Well the first and foremost is really the cab is a bridge is a connector, right you all are opening in Getting into the world of the basic research of what's happening to find a cure for HIV Not just for block lock excise But at the annual meeting you can go and see or connect with all these other researchers and cap members and is really We want people to be excited to not forget that HIV is there And we need to find a cure for people who've been living with HIV for a long time for the new folks who unfortunately didn't get the prep or you know acquire the virus and Education right a be able to have access to that information to have Also an honest opinion on that Cure research that's being done. What would work best for communities? What communities concerns are that's really what I Wanting most and foremost for our whole Collaboratory and for the cab is This bi-directional conversation between all the community folks that are you know Involved our community partner, you know at the Foundation and the scientist, you know seeing scientists Engage in their work thinking about oh, I mean I never thought about these psychosocial Component, you know, I'm doing the experiments, but yes, this is a person living with HIV Who's got a deal with x y and z and we have these conversations be beneficial for both You know partners, right? It's it's an equal partnership of Conversation of connection, you know giving opportunities for cab members to discover new things, you know learn skills You know bring their expertise to the scientist And for me personally Yeah, but really see people of tribe, you know people be you know, enjoy the work that they're doing and feeling that We're part of a good group and that we're Connecting with one another, yeah, that's really important and nothing makes me more happy when you say to me Oh, you know, I'm gonna interview Michael, you know from the their cap, you know, this all all of us really working together. Yeah and Bringing in the arts with Pauline and the the care Yeah, I need to schedule that with him. Well, I'm waiting for the language document to be finalized, but yeah, that'll happen. I I'm scheduling a lot of interviews this year. It's it's intimidating. It's a little scary, but I'm really excited at the same time Yeah, no again is Okay, so in closing we've been about 45 minutes. I appreciate you, you know taking all this time to chat with me I I think I want to start asking a question that I'm gonna ask everybody to kind of get to gauge How they view this but I want first I would like to ask you What you would like to share communicate with people watching that maybe you feel you haven't been able to express yet and then secondly, what is your assessment of the Global state of the HIV epidemic you can in however you want to interpret that Something I haven't had a chance to want people Or just anything you would like to say to the viewers But I think to me if really I think it comes back to the essence of who I am and how I engage in this work people might see me as a scientist and may think I have ulterior motives or You know, whatever, you know, how I present to the world by my ethnicity my identity, you know to to viewers but really The core of who I am is really that I care. I really deeply care about Us taking care of each other and of the planet and that's How I engage in this work and that if the people who listen to this show Can you know engage on this path of whatever they're doing into the world with the sense of connectedness with each other and That we may have all our cultural or identities and but we're all Really connected to one another and we really are connected to the you know the planet we live on and then that's all part of of The work that we do with HIV and it's connected to so many other things. Yeah, I think I think for me It's that sense of The purpose of the work that I'm doing It's not for personal Achievement per se And That comes across very very loud and clear And You know, I have other dreams and things I want to do with healing and whatnot so and In the state of the HIV epidemic well, I It's still a huge issue I mean There's so many people even though we have prep like you say you you best the boat on prep to me Nothing breaks my heart more. It's to hear a young person or it doesn't have to be in person But somebody tell me, you know, I didn't know prep or I didn't have access and and then acquire a virus which if it's not a dead sentence today the way it was back in the you know when You know, it all started it still, you know It has an impact on your body and you have to take meds every day and if you don't take them Who knows might may happen and even if you take the meds you're still inflammation going on in your body and For us living in the Western world, we have access to a lot of, you know Medicines and things like that, but so many parts of the world where people don't or if they do there's laws or Are situations that prevent people from having access to some of the things we we have here? on the other hand, we have here a lot of things that are also not very helpful, but That's another story All right, well, thank you so much Patricia for Engaging in this conversation with me. I encourage everyone watching if you have comments or questions Please leave them below whatever platform you are watching this on and maybe I can have you back at some time And we can follow up and maybe answer some questions and and take it from I'd be happy to I'd be happy to talk to your audience. I'd be happy to talk at the use of the arts There's so many people I didn't mention today that I would call attention to to the work they do Yeah, thank you. Why if it's just and I'm not a social media person or I'm not very familiar with being on on the TV on the screen and whatnot. So yeah, that's what I'm here for that Yeah, thanks All right, thanks everyone, please like this video subscribe to my channel If you haven't share this with anyone who you think might find this helpful Liking and subscribing are the number one ways in which you can support my channel encourage it to grow and Help me to continue doing what I'm doing to provide you this valuable content. All right, everyone. We'll see you next time. Cheers. Bye