Today, you will hear the views and ideas of our pozcast guests. We are eager to showcase their expertise and provide a platform for their views, but they may not always reflect or align with the views of The Positive Effect or the MAP Center for Urban Health Solutions.
Welcome to the pozcast. We are created by and for people living with HIV. On each episode, we explore what it means to be poz. We challenge the status quo and we share stories that matter to us. I'm James Watson and I'm HIV-positive. If you're living with HIV, listen up.
This should be an AIDS-free world. We don't need a cure, we don't need to wait for a vaccine, we could decrease the burden of HIV/AIDS globally by greater than 90% during our lifetime, with nothing much more than we already have. And we're not going to do this, because we don't want to.
The documentary film titled, Undetectable: How stigma has gone viral in the fight against HIV, is being released today, World AIDS Day 2021. And I had the good fortune of sitting down with the director and some of the key cast members to discuss the film and unpack some of the key issues. This film is so beautifully crafted, and it does a number of things really well. It takes a hard look at the early history of HIV and AIDS in North America, and highlights the hysteria and misinformation and stigma that has surrounded HIV, since it was identified and of course, initially associated with gay men in the early 80s. It also and rather effectively critiques and rattles the cage of the gatekeepers that according to the film, have stopped the world from becoming HIV and AIDS Free. I was so taken in by this documentary, it really resonated with my experience and it's not everybody's experience. But as a gay white man of a certain age living with HIV. It shook me. The film is still deeply relatable to all facts are facts, stigma, stigma. You know, I laughed, I cried, I raged. And I was inspired and reinvigorated by the resilience that by HIV positive brothers and sisters, and so grateful to our superhero allies who continue to tirelessly advocate for our cause. My guests today are Laura O'Grady, the director and producer of the film, and three of the key cast members, including the extraordinary visual artists and community advocate, Tiko Kerr. If you don't know Tiko's work, you have to google him. It's amazing. We will also hear from Mark Randall, a person living with HIV, a passionate HIV advocate, activist, and educator and the internationally renowned Dr. Julio Montaner, a founding member of the BC Centre for Excellence in HIV and AIDS, whose landmark Treatment as Prevention program and antiretroviral drug trials have helped transform HIV and AIDS from a death sentence to a livable chronic condition. We have got a great show for you today, folks. Let's get into it. So Tiko and Laura, welcome to pozcast.
Thank you for having us.
You know, I'm really excited about this film. It is such a beautifully crafted, powerful and important piece of work. And, and I wonder how did this film come about?
Several years ago, I was doing a different piece on a young man who actually had been in conversion therapy, he was raised in a traditional Christian home. And he actually worked at an HIV Outreach Center in in a small town in Alberta, actually. And I asked him, you know, other than, you know, you identify and queer, why would you want to do this sort of work within your community. And he stated to me that he had never heard of HIV AIDS until he came out. And he was 26 at the time. So for me, who's you know, slightly older than 26. I was shocked and stunned and a little angry, not at him, but certainly at the situation, that this really important. History was being lost so quickly within a generation and realize that, that it wasn't being taught in schools that it wasn't being spoken about. But it's not necessarily until somewhat recently been covered in, in mass market media. And so I thought, well, hopefully I can use my skill set to try to talk about, you know, the past and where we are. And as we went into development with TELUS who were great to support us from the very onset, like several years ago, prior to COVID that I realized There's lots of great films that talk about the past and the tragedies of a generation lost. But what we could really talk about and hopefully amplify is the good news of today. But why that is not being talked about more. And the My idea was that it's rooted in the stigma of HIV that was there from the onset of the North American diagnosis,
Right, and Tiko, how did you get involved in the film? And why was it important for you to participate?
Well, I got involved by getting a cold call from Laura introducing yourself and saying that she was interested in picking my brain about perhaps participating in the film. HIV is has always been incredibly relevant. In a timeline for me, I was coming out in high school, which is when Stonewall happened. And so I kind of rode the crest of the development in the, in the especially the HIV epidemic, that coordinator with my own sexuality. And I realized, very much like Laura, that we have an opportunity to talk about things, and especially with the insight of being firsthand, being there fighting for the drugs, fighting for a clear voice, kind of a measured political response, and so on. And I was thrilled to jump on board, right,
And you share in the film, you share some of your personal journey with HIV, and it's masterfully interwoven with your creative journey. And you're also the film's art director. Can you tell us how your journey with HIV and art intertwine?
To be perfectly honest, James, HIV has been completely instrumental in my creative life. When I haven't been well, it's affected my work in a very negative way, I don't have the energy to actually go into the studio and get my work done. And when I've had the good fortune of getting new drugs that have just been released onto the market, and my health picks up again, all of a sudden, I'm like an 18 year old again, and I've got this surge of, of health. So looking back at my work over the past 35 years or so I can see an indelible trend that's coordinated between the HIV and my creative output.
Laura, is the film he started making. Is that the film you ended up making?
In some ways, yes. You know, I had a dream of Chico joining our team and being able to address some of the archival and visual style of the film. And I really lucked out there. And on our team lead tech, we had some challenges as everyone listening to this has had in their life regarding the impact of COVID. So unfortunately, we did lose a character or two. But what we realize and what I was fortunate enough to talk through with taiko was the parallels of COVID. So we kind of leaned a little harder into archives, because our shooting was somewhat inhibited. We were supposed to start shooting the week that Vancouver lockdown in March of night. 2019 are the principal photography of the film. And so that was before vaccines, of course, and shooting with immunocompromised communities, we had to be very careful and take our time and pull back on some of the shooting. And then we looked more archive and the parallels. We don't state it outright. But the parallels are there. And it was an interesting turn of events that I think actually makes the film more relatable to those who don't live within the HIV community.
Did you like when you started out making the film? Were you aware of the like treatment is prevention and undetectable equals on transmittable? And those sorts of issues?
No, I'm kind of embarrassed to say that even though our family my family lost a close friend of my mother's to HIV AIDS prior to 1996 97. I did not know the Canadian impact of the heart cocktail, I did not know the amazing revelations of u equals u that came through the research of development and the BC Centre for Excellence in HIV AIDS really allowing me to do that research to connecting me to their teams that have proven that treatment as prevention does work. And so I'm very grateful to everyone who allowed me to learn at the footsteps of their of their amazing work over you know, years and years and years and hopefully we can amplify their voices.
Is there something that surprised you along the way while you're making the film?
It was actually surprised me well how clearly they demonstrated treatment as prevention works. That's amazing. Surprise me in the fact that when I mentioned this film to individuals who don't live within the HIV community or even in the LGBTQ community, how few people know about it, how few people know about it within the LGBTQ community, actually people within our team, who identify as such and know about it, and then when we show the film, everybody's like, everybody should know this, everybody. So, to me, you know, educating the common public is to try to demystify and de stigmatize an HIV diagnosis. And hopefully, you know, it helps it's helpful in that way. But from like, it was really interesting to me on how few people know of the amazing accomplishments of Canadian scientists, Dr. Julio Montana, he has a stamp like he's on a stamp. But how will not widely publicized or known it is within our society, I found that very surprising. Yeah.
So I want to play a clip right now from Tiko.
I'm considered to be undetectable. It's impossible for me now to transmit HIV to anyone else. This is the miracle that we've all been waiting for. We know how to end HIV AIDS, we finally have the way, we just don't have the will to get there.
So Tiko, the film's messaging and the science behind u equals u. And treatment as prevention is really compelling. So why do you think there's been such a slow uptake among the general public?
I have a feeling that these issues regarding HIV are victim of our own success. On one hand, 10 or 20 years ago, it was it was a situation where people were, were dying and dropping like flies. And then now you have someone such as myself coming out and demonstrating that I can have a pretty much a normal life, as long as I comply with the medications, which I'm happy to do. I have a feeling and a lot of people's minds. They see that as HIV is over. I think also that obviously, we don't have political will, that lasts longer than one election cycle or two election cycles. So that policy doesn't have a tendency to live via imperative measures that need to be taken in controlling an epidemic like HIV.
Yeah, I always thought, you know, as a person living with HIV myself, I always thought, okay, u equals u that's gonna that's gonna sort it. Right. And like you say, It's the miracle we all hope for. And then you're left wondering, like, what happened? You know, what role do you think that HIV stigma plays into all of this?
Well, in that discussion of HIV, I think it's all predicated on the context, like where you live, we happen to be living in a very progressive urban environment where people are perhaps more liberal in their thinking, and accepting and so on and so forth. But that isn't always the case. And in rural communities, and in communities, where things are more constructed socially, in a conservative way, then all of a sudden, we come into all kinds of new barriers when it comes to acceptance, stigma, self loathing, all the things that complicate the whole issues to get people healthy.
Right. So Laura, what what do you want people to feel after seeing this film? What impact you hope the film will have?
Well, you know, for me, it's a good news story. It's a great news story, you know, and I'm coming late to the game like this has been a great news story for six, seven, you know, years or what have you when treatment is prevention was proven. And so I really would love for people to understand that HIV, you know, I just saw something on pop culture the other day, where they mentioned HIV and a terminal diagnosis that I really want people to understand that that is no longer the case. You know, please make stop making those broad comments that are completely factually inaccurate, to have responsibility for what you're saying. And to allow individuals living with HIV to feel comfortable and open about living with the diagnosis. So the stigma is hopefully dissipates, and we can get these easily accessible, you know, ARV keys to a lot of our pop that are accessible to our property. Now to all of the population and to realize what is factually true that in our generation, we could end HIV AIDS. If as Tiko says, In the film, the political will is there, and the community will is there, what an amazing human accomplishment to be able to do this within a lifetime? We just need the will to do it. And it comes from the common person understanding that this is possible. This is doable. And we need to express to our leaders globally and nationally, that this is a priority.
Yeah, because the film really feels to me like a call to action in many ways, like you said, to start statement, Canada has a solution to end HIV infections a Tiko, what action? Can we take? Yes, we can reach out to politicians. What else can we do?
Well, I think I think it's also imperative to remember that there's a lot of countries around the world where this stigma has modified or amplified into anti homosexual death, crimes, all that sort of thing. So the conversations need to be wider than what's happening just within our own country, in the United Nations, if we're now starting to take countries to task on other issues, why not to task on human rights issues that delegitimize the stigma? That's a perpetuating, just still rampant murder and death by HIV? Because people aren't getting the drugs?
Right. Now? What kind of distribution like what's next for the film? Laura?
Hmm, yeah. So wait, you know, we're gonna be doing some community screenings and which is amazing through you through Canada. And then on December 1, it releases wide thanks to our good friends at tell us on YouTube. And they can be shared and sent viewed commented on around the world. And, you know, we have some traditional media ideas to get the film into as many eyes and ears as possible. But yeah, it is not it is not gated to whether or not you have TELUS optic in the West, or what have you, everybody can see it. It's only 43 minutes. So hopefully, people will watch it and all the way to the end, and spread the message of u equals u and treatment is prevention.
Well, that's great. It's a wonderful film. I can't say enough good things about it. So I encourage everybody to watch it. After I met with Chico and Laura, I wanted to hear more about what it was like when the new drugs, the highly active antiretroviral therapy was first introduced. What was it like being given that kind of like that new lease on life? This type of lived experience is a teaching moment for all of us, it can't be forgotten. So let's turn our attention to mark Randall, the cast member in the film, and an HIV activist and educator. Well, hello, Mark, welcome to podcast.
Okay, good morning. Good afternoon, I guess it's afternoon where I am now. So thanks for having me.
Now, I want to play a clip from the film and have you reflect on that time period, if you don't mind?
I got a phone call from the clinic saying hey, this we've got this new clinical trial drug it was right after the the Vancouver AIDS conference that happened so I got a phone call from the clinic. asking if I was interested. I said absolutely. I'd been told to plan my end because started taking medications in September. My mother had come out that summer and has seen me at my worst, by November, I called my mother and I told her I weighed 176 pounds. It was profound. I was walking my dog. I was shoveling my sidewalk. I was able to climb my stairs and use my bathroom upstairs for the first time in a year. She says she wouldn't believe me till she saw me so when I flew home in December I walked right past for the airport she didn't even see me. She was looking for the kid she saw September and didn't even recognize the sun she saw in November so I turned around in the airport said what I gave pound you don't even recognize. And
she just, she's just crap. Gosh, Mark, this story is so moving. And I know that there's lots of stories from that time period out there like this. And I wonder, how does it make you feel hearing that clip again?
Well, my voice will be off clearly, and there's no tissue in front of me. So my eyes are going to be a little glossy, I'm glad we're not recording this live for a camera. It's hard. It was a it was it was just so surreal to go from, from preparing myself to actually say goodbye, like doing all those creepy terrible things like picking on a cough and picking up flowers and music and making a list of who could come and clearly making less than who wasn't well do my control issues right to the end, to be able to actually believe in the possibility that but I could still be around and have the opportunity to be with my family, probably, that I denied myself out of that fear of disclosing to them my HIV status and not what their response would have been. So I can't really like screwed myself up a good 10 years maybe, with my family keeping this horrible sacred distance, and then being able to have the opportunity to have time with both sides of my family again, my my divorce folks and be able to to be Mark Randall, HIV positive your son, here I am, this is what I am. What do you think of me now? Because this is what you get. And, and and to be blessed with, I keep using the term blast. I'm not really a religious God guy. But it's a gift. It's like a W with a back end gift to begin with. But to have the response from this kind of treatment, and to be able to walk past my mother and have her not see me that that celebratory, while at the same time sobering because so many people didn't benefit from those in time.
Well, that, you know, the documentary does a really great job of exposing the historical stigma and misinformation around HIV. But it also brings to light that life changing impact of the medication of the heart, the highly active antiretroviral therapy.
Yeah, I think the doctor calls it The Lazarus Effect. He just couldn't believe that he was watching patients that he was prepared to say goodbye to standing up and walking out of his office three months later, he just couldn't believe what he was saying.
It's incredible. I mean, that transformation, you know, it's the ultimate good news story. Right. And, and your lived experience. And through that as a real as a teaching moment. You know, you're living proof that getting on treatment will save your life.
Absolutely. I had a whole conversation in a training I gave today about that. Oh, yeah. Get tested, know your status, get our treatment...
Right. Yes, yes, exactly.
I know that my treatment works, that I'm now my virus, is that a level that's undetectable? And because my virus is undetectable? I'm not transmitting HIV. I cannot transmit HIV.
So when did you first hear about u equals u?
Ah, the first time I heard about it, and it's it's strange that you asked me this question today, James, because I have never really given this thought until just the last week because no one's ever asked me this question. No, I'm in all this time. No one's ever asked me where I first heard about it. I was volunteering at a bingo hall for the Sharpe Foundation, which was a housing that is housing and respite care for people living with HIV here in Calgary where I live. And I was on their board of directors. And so this is one of our little volunteer things that we did every month was at the bingo hall. And another volunteer came up to me and was having a conversation with me. And he had just been watching some of the International stuff that was going on at the time. I think it was in Geneva, the switch statement came out. And it really was the first I guess, publish a piece around this potential that focus on effective treatment work transmitting HIV for returner folks, was very quiet. It was very, for lack of a better term gate kept by folks. I think at the time, but but for a few people out there, they read this and they caught it. They caught what was being said, and this person came up to me at the bingo hall and said, she said this thing about Swiss statement which I hadn't done yet and started talking to me about it and I went oh my god, wouldn't that be the most amazing thing if that was for real? And then bingo and back to where we were going and stuff like that. But I honestly know what that is the very first time I ever heard about the signs indicating that that was a possibility. Then I never heard about the u equals u message probably, again, significantly until the campaign started coming out of the US with Bruce Richmond. And I just quickly grasped onto that. And this other person who originally told me about it reconnected with me again. And then Bob ley he out of Toronto there, he was really heavily involved in getting that message out through some of his podcasts and stuff he was doing. And it just started steamrolling from there. We had Bruce Richmond come out to our AGM he spoke there. But even with all this momentum and stuff that's happening, it's it's still not being heard. Where it used to be heard, I'm afraid.
Yeah, you know, when I first heard it, I didn't know what to make of it, because I thought there'd be parades and trumpets blowing. And, and there was seemed like deafening silence from from,
I thought it was a sick joke at first. And I think we saw the same thing with the Hep C treatment that came out. Like, here's the first virus we've been able to get, like, you know, a neurological sustained response from and we're not screaming that and telling people that we have a new hepatitis C treatment that's like weeks, and you can be treated without interferon it crickets. Yeah. Why isn't the science being shared? Why aren't we like screaming these incredible successes? Because they trickle down into COVID? Don't get me going.
Well, I mean, the articles are you message is infused with meaning for us for people living with HIV, but not for the general population at all? Really?
No, because I think they like their comfy little space of stigmatizing and making it not about them and having their comfy little spot and leaving the onus on people living with HIV, including the criminalization aspect, which I think needs to be I think u equals u clearly needs to be the weapon against that.
Right? Yeah. Can you expand on that? Like what why? What do we have to do now?
The current legislation as it stands, is based on the fact that we didn't know the science about undetectable equals on transmittable. And all those decisions were based on the possibility and we know that if we look back at the records and all that info, and put it under the science lens of today, we know that it wouldn't stand up, like based on u equals u. So in typical fashion law legislation, and criminalization is not keeping up with science as quickly because science moves very fast and has been moving very fast. So I don't want to pool on on legislation, because I know it's a process. And it doesn't change unless somebody gets charged and someone takes it through the chain. And I don't want to be the one to do that. So I've got a lot of hills, I'm going to die on that. It's not it. So I think there is opportunity to really look and revisit legislation and the legalization of criminalization of non disclosure of HIV based under the GNU u equal signs that we know and has been proven and shouted globally. Right. So it's not like it's a maybe it's a for sure.
So what's the one piece of advice you would give to someone who's been newly diagnosed with HIV?
Oh, I guess my fastest thing is is continuum of care cascade of care. You've just been diagnosed, go see your physician, get your bloodwork done, find out where you're at, find out what medications are being offered to you, when you're ready. If you're ready, when you're ready. Start those medications as quickly as possible. I don't believe in anyone being forced into any kind of medication without with informed consent. I sat on SeaTac for a long time fighting for Informed Consent around stuff so please be ready. And but no, they work. And no, they're effective. And no, they have little to almost no side effects anymore. So don't fall for the old stories from the Old warhorses like us that went through the early days of terrible side effects because it's not the same science. Get on those treatments, stay on those treatments, they remain a deer and they're there. They work. They're amazing. You can have your life, you can have your career, I gave all that up. I gave all of those dreams up with my diagnosis stay up to date, you don't have to give those up. You can plan a family, you can have children, you can get married, you can do all of these things that so many of us never got the chance to see I'm getting emotional. Because you can have a life today with HIV. That 30 years ago, we were told you could never have and and don't deny yourself that life do not deny yourself that happiness.
Thank you, Mark. You're welcome. To get a fuller picture around the science and historical context of u equals u and treatment is prevention. I turn to the internationally renowned physician professor and researcher, Dr. Julio Montagner. So Julio, thank you for taking the time to come on podcast. Welcome.
Thank you, James. My pleasure.
So your work in HIV on highly active antiretroviral therapy or heart and advocating for treatment prevention strategy, so transformed, living with HIV from a death sentence to a chronic, livable condition and has saved countless lives and changed. You know, it's changed everything saved my life. Do you mind for me briefly explaining what treatment is prevention is for our audience and why the science behind it is such a game changer for people living with HIV.
You know, the way I like to describe the the SAS a bit of an evolution, myself and a number of others, we were there when all of these started, there were very dark days and and we were focused on, on trying to fix the problem that it was immediately in front of us. I was actually training as a respiratory physician at the time. So I got involved in all of these as a result of Pneumocystis pneumonia, which was a huge killer back in the 80s. Yeah, since I was alone, the lowest member of the ranking hierarchy, I was sent to the emergency to look after people and it was just pneumonia, in and out and in and out. And then it became almost a full time job. We did go work in at the time, and we transformed Pneumocystis pneumonia from a rapidly lethal sort of condition. That, in fact, many people don't remember, but it was regarded by colleagues down south, particularly in the States as no worthy of admission to the ICU or one given point. Because of the universal sort of lethal prognosis in those severe cases, we managed to change all of that and turn it around, show that it could be truly could be prevented. And you know that that was the real breakthrough, the very first breakthrough for us. However, it didn't mean much because people would address and it was just this morning, with a new strategy that we came up with the time doesn't matter. But people will go on to die, often very painfully miserable condition, because of more pneumocystis, pneumonia and other complications, etc, etc. And that was basically the motivation for me another is to say, look, we have to do something different here now. And although my training was in response to a medicine, I basically decided to repro for my career in trying to develop what at the time was emerging field of antiretroviral therapy. While the early trials were challenging AACT everybody remembers the controversies, etc, I was blessed to have an opportunity to study the particular effects of ICT in our patients, working closely with my Wainberg, John Ruggie, and a number of others. And although we recognize that the benefits associated with the use of ICT were transient and resistance to the drug, developed quickly, we were able to hypothesize that by combining anti retrovirals, we could get a greater efficacy. And that I must give total credit to my colleagues in the DB field, including my father, who taught me how to fight drug resistance into a colossus, which is basically what I decided to apply to HIV, right. And in the mid 80s, the notion was that resistance was unsurmountable. And we said, look, let's give it a try. And they use it sort of a TV approach. And that's when I went around the world trying to shut up shop for second and third drugs to to build those combination therapy protocols. Initially do drugs prove to be better than one but not good enough. And to my surprise, and my wife was surprised to be honest with you, by 1995, our clinical trial of ucjc ttdi. And developing the case trial showed that we could suppress the replication of the virus and do so in a sustainable fashion. I often like to tell the anecdote when we're Mark Wainberg corneocyte are immediate and montrail. He was doing the virology for the trial that I was leading the AC TDI in a very open trial. And he said Julio Brahm, and I said, What is the problem? And say, Well, I can't No grow the virus in your patients, you guys are messing up with a sample, there must be something wrong in the collection. And I'm telling you that with great respect to mark, to illustrate the fact that this was not even a consideration at the time. So I told Mark, listen, don't do anything, don't say anything. Let me go back to Vancouver. I'll check everything. And we'll see what happens. At the same time I was doing that. John sinskey from Roche molecular systems have given us access to a new test that neither him nor us knew what he meant or what he was good for. But he was hoping that we would find an opportunity to test the test in one of the protocols that we were involved with those who are very active research days. Lo and behold, that was a PCR test. So I thought, Look, we don't know what's going on here. Let's retest the samples, use a second test and see if we can get a sense of what this is going on. To our surprise Eyes, still blinded, we were able to show that, to answer the study that had two drugs, were having viral loads, which at the time, we didn't know what he meant, but Barlow's coming down and rebounding, but a third arm had a viral load that was suppressed and persistently. So that was a moment that the rica moment that I always remember, and I never, you know, I never cease to enjoy just talking about it. That led to a number of meetings with the various colleagues and the ISC,
USA, and so on, and so forth. The Miracle three, five trial with AC DC, DC and indinavir, was reported around the same time early in 1996. And so we basically came together, we wrote the triple therapy guidelines. And we launched that in Vancouver and International AIDS Conference, which we basically reconfigured to be the coming out party of the triple therapy. To be honest with you, we we were satisfied, that was very good night went on holidays, after the conference, it was a BCS year of my life. And I came back and I'm looking at our data. And it started to wonder what was going on here, the more mortality was going down. But incidence actually was not going up. And over the next year or so, we were seeing that the denominator or in other words, the number of people living with HIV in the province was larger, because people will stop dying. And the number of new infections were actually had decrease. And I started making some back of the envelope calculations. And I managed to convince myself that the decrease on the number of new infections was actually proportional to the number of people that were on treatment. And that was, if you thought that I had a rica moment, in 1995. By the year 2000, I started to convince myself that actually this was happening. The Turks some time for us to be able to put all the data together and articulate the whole notion. But we came out with a paper that we submitted to the Lancet, we coined the term treatment as prevention to basically argue that if we were to treat an individual with triple therapy, we would basically stop morbidity, ah, really morbidity is stop premature death. And for no other investment, we would stop HIV transmission. And if we took that into a larger context, to a region or a country or the world, we could actually see that treatment could help us and the epidemic. And I'll be honest with you, when I presented this for the first time, in 2006, at the Toronto International Conference, I actually had kept that a secret because I was invited to give a plenary on antiretroviral therapy. And the rumor mill started to work out and the waste that words, and I got a call from one of the organizers weeks ahead of the conference. Say, Julio, what is this and we're hearing that you're going to be talking about prevention, we asked you to talk about treatment. So don't worry about I just want to update on treatment. It's all fine. It's all fine. All the way to the large organizations in the world. And I'm not going to name names. We're seriously challenging this notion. And in fact, my boss got a call shortly before representation to send me a message that medicalization of prevention was extremely dangerous, and I should refrain from moving in that direction. So I always remember two things happened at that conference in Toronto, many, but two that were critical for me. One is that I met with Stephen Lewis. And since then we became very close friends. I sat down with him at the lobby of a hotel across a convention center. And I explained to him what I was thinking about what I was going to present. He says, Julio, at first he, he got upset. He said, Why, why are we not doing this yet? And Steven, and telling you about it because I need your help to make it happen. And then after we talk about a more, he said, Well, I want you to lean on me, because very important, people are going to come after you. There is going to be it's going to be challenged to move this forward. But he was the first one that jumped on board. And when I finished my presentation, I come down from the podium, and there was a woman Alison Lawton, who approached me she's from Vancouver, but I never met her before. And she said Dr. Madani, I want to introduce myself. I want you to come with me and I want to introduce you somebody that that is very interested in your presentation. I walked behind the curtain set to a hidden room somewhere He says President Clinton, Julio Montana, no, my goodness. So the President was at the conference that he basically wanted to pledge his support. I tell you this, because while the scientific community had a lot of difficulty with the notion of treatment, as prevention, as I described, Stephen Lewis and Bill Clinton played a key role in making it possible for me to move this forward, years ahead of all of the research and everything else happening. And of course, I should give credit to Gordon Campbell, the premier here in British Columbia at the time.
He famously said, Julio with your brains, and my money, we're going to fix this problem. And ever since we, you know, we were encouraged by the government of all stripes, including the NDP, now, we're empowered to aggressively pursue this agenda, which is been really life changing for all of us.
Yeah. Now, in the film, you state basically that this, we should have an AIDS Free World now that we don't need a cure vaccine, that we could reduce aids by 90% in our lifetime, and with nothing much more than we already have. But we're not going to do this. Because we don't want to, why do we not have the will.
So let me be clear, I don't want to come across saying that we don't need a cure or vaccine, because that would not be exactly what I'm at. And sometimes I can be a little bit stronger my language and leave that impression. You know, we are involved in research for the cure for the vaccine, Sabrina blue Mara Brockman, a number of people in our environment here, are actively pursuing all of that. And I think that that's extremely important. Having said that, your point is clear. And that's what I've been saying all along. We don't need to wait for a cure anti vaccine to actually dramatically change the course of the epidemic, the 9090 90 target that I was the architect, often the promoter, which is now the 9595 95. And it was, I'm grateful for the fact that the UN has now endorsed both the 9090 90 for 2020. And subsequently, as of this earlier this year, then I define I define 95 for 2025. If we were to implement this appropriately, as we devise it, we would see at least a 90% reduction in HIV new infections. And virtually we would eliminate morbidity and mortality already to age in every population affected. So why so treated? So we can do these. And in fact, beach, Colombia has long been doing this with extreme success. But it's not been replicated equally around the world. Because we're lacking the political will, we're lacking the political will, because this is no longer a priority. And he's no longer a priority, because the public mind has shifted on to other things. I don't respect that I respect that they are in many priorities. But we cannot be like a 15 year old that one day is focused on one thing, and then we abandon that to focus on the on the next trendy thing of the day. Yes, we are adults, we are thinking and mature human beings, we should be able to make a commitment and deliver on the commitment while we address emerging new issues. So COVID is here. And we cannot abandon HIV because we are COVID. And yet, to be honest with you, you will see papers all over the place, say that COVID has actually put a dent on our HIV efforts. That's not acceptable.
Yeah. Did you think that with your eureka moments, did you think that it would become such a hard sell in a way?
Yeah, you know, I was prepared for the pushback that the scientific community generated. I say this with a great deal of respect to my colleagues, etc. But you know, I've been trained as a scientist, as a clinician as a as an advocate. You know, I evolved through my life as a result of my lived experience if you want. In fact, I always keep a quote, in my office that was given to me, by a very good friend of mine, Dr. Nora Volkow, Director of the National Institute of Drug Abuse in the United States. She's been a strong supporter of our work all along, is from Austin, Bradford Hill, who, interestingly enough, is a pulmonary epidemiologist from back in the day. And he is the guy that recognized using epidemiological work, the link between smoking and lung disease. And so at a given point, you know, he was facing the kind of challenges that that I was encountering. And so Nora gave me this quote and says, Julio, you will find solace or support or sympathy and these are these code. And basically the code says something along the lines, that there is a given point where the evidence is sufficient and the urgency He is such that you need to act. And you had to stop asking questions because they, the answer is obvious. So, what I did different than many of my colleagues in the public health arena and the academic world is at a given point in 2006. I said no, gentlemen, no, ladies, no, we have to stop asking questions. Treatment, prevents death. Treatment prevents AIDS, we have enough evidence to say that he's going to prevent transmission, we don't need to explore that question to the ultimate kernel, before we actually deliver on the promise of treatment for people who are living with HIV, with a known fact now that we will do the best that we can for them, but at the same time, hold the epidemic.
Yeah. So do you think that there is something that we can do, the average person can do the average person living with HIV can do to turn this corner?
Yes, activism. Remember, the good old days, when there was no treatment were there. There was a generation of activists that was very engaged, very vocal, you know, sometimes they were hard to deal with. I mean, I remember when we came up with heart, and we were accused that we were in the pocket of the pharmaceutical industry and our top, demonstrate and everything else. So they need to get everything right all the time. But we need that energy. And that, for us to move this forward. In my mind, again, with a great deal of respect, but but to be perfectly honest, the fact that we address the morbidity, mortality challenge related to HIV, or now the transmission challenge for that matter with treatment has allowed a generation of people living with HIV to move on and do other things, you know, live a life that previously they couldn't even dream of. And that's great and is to be celebrated. At the same time, it's very hard to mobilize the community around the problem that is not being perceived as a as a critical problem that I used to be. So in a way, we're victims of our own success. And what we need is to recruit whatever champions we can to ensure that this message doesn't die off, because we're not going to end this problem. If we don't go back to the level of commitment and activism that we saw once upon a time. And I'm afraid that when I'm gone, there are not too many people lining behind me to do the work that I'm doing, right. In fact, recruiting people to work in HIV AIDS today is a challenge because there is no funding, there is very little research going on. There is some research on cure and vaccine, but it's still trial and error kind of thing. So I fear that the situation is not looking very good in general,
Julio, I can't thank you enough for coming on the show today. And on a personal note, I just want to thank you for all the work you've done. I appreciate it.
Thank you, James, my pleasure.
Okay, so now let's have some fun. I asked my guests the podcast five rapid fire questions. Let's hear what they had to say. First, Laura and Tiko followed by Mark and Julio. All right. Number one test the waters are diving deep.
Test the waters. Like I tested the waters with my answer.
My first reaction is dive in deep.
Test the waters.
I do a bit of both.
Okay, I'll let you off. Calling or texting?
Texting.
Texting, then calling.
Calling.
I prefer calling, but these days has been overtaken by texting in my professional life, for the most part.
Loose guidelines are clear directions?
Loose guidelines.
I agree loose guidelines.
Clear directions.
Clear directions.
See the future or change the past?
I don't want to do either those things.
Okay, Tiko?
I'd say change the future, but it's not our option. Look at the future, I guess.
That's a good one though.
See the future.
Change the future. You see, I don't, I don't I don't do well with rules.
No, you don't, right? Okay, well, that has worked for you. So arrive early or arrive late?
What I want to do or what I often do?
However you want to interpret that.
I'm going to be aspirational, arrive early.
arrive early.
Arrive early. Excellent.
I'm going to say arrive late, but I've been married to my husband long enough now that I now arrive on time because seven o'clock is seven o'clock.
On time.
All right. Well, thank you for playing along. I want to thank all of my guests for being on the show. And a big shout out to the film undetectable, officially launching today on World AIDS Day 2021. And it's available for free on demand on TELUS YouTube channel. Thanks for listening. That's it for us this month. Thanks for tuning in. We hope you'll join us next time on pozcast. And if you have any comments or questions or ideas for new episodes, send me an email at pozcasts4u@gmail.com. That's the number four and the letter U. Pozcast is produced by The Positive Effect, which is brought to you by REACH Nexus at the MAP Center for Urban Health Solutions. The Positive Effect is a facts-based lived experience movement powered by people living with HIV and can be visited online at positiveeffect.org. Technical production is provided by David Grein of the Acme podcasting company in Toronto.
