Welcome to pozcast, the show that puts the positive in podcasting. Our program is created by and for people living with HIV. And we're here to explore HIV research in ways that matter. We're pozcast and we're bringing HIV research to life. Today you'll hear the views and ideas of our pozcast guests, and while we respect their expertise, they do not speak on behalf of the Ontario HIV Treatment Network or Universities Without Walls. I'm your host, James Watson, a person living with HIV and a community-based research coordinator. I'll be your guide for today's journey into HIV research. Today we're going to be talking about the U=U campaign. U=U is a catchy way of saying that someone whose viral load is undetectable, can't sexually transmit HIV to someone else. In other words, undetectable equals untransmittable. Although on transmittable is not a real word, as it turns out, what it is, is real stigma busting science. U=U is being led by the Prevention Access Campaign and spearheaded by HIV activists globally. It is a great example of how people living with HIV can harness research and make sure that the findings are applied in the real world. As the research shows that undetectable means untransmittable, then people living with HIV should know about these findings. And the findings should be translated into better health messaging, policy and legal decisions.
You know, I first heard rumblings about U=U about five months ago and my immediate thought was that this was just another glimmer of false hope. You know, and then I started to hear clear and strong messaging everywhere, especially on social media. And people living with HIV and agencies I knew and trusted started making some real noise. Now this was exciting. Can it be that we're finally at a turning point in history that we have the messaging we need to take out HIV stigma? The first person I wanted to speak to was Laurie Edmiston, Executive Director of CATIE [the Canadian AIDS Treatment Information Exchange]. As a national HIV organization, it was big news across the country when CATIE signed on to the consensus statements endorsing U=U. Laurie has been active in the HIV sector since the start of the epidemic, and describes the research behind U=U as the most significant develop in the HIV world since the advent of effective combination therapy 20 years ago. So I wanted to learn more.
When you first heard about U=U, how did you make you feel personally?
I started my work in HIV in the mid 80s. At the time, I had friends who were sick and had died. So I started doing this work when it was in my personal life. And I was, you know, so I had the experiences of friends whose nurses were fully gowned, whose food services - people left the tray at the door, who were shunned by family members. I remember one of my first friends who died when my second child was born in 1986. When I passed him to him, he burst into tears because he was not able to see his niece and nephew. At that time, his he was considered infectious and scary. So for me, this, you know, takes me back to that time, which is still the case for some people because of having been estranged from their family and such so what really is it's very emotional. And it's very you know, it's such good news and it also carries some...it's a carry some mixed feelings because it's such a shame. It's so sad that we have had to go through what we've had to go through in the last 30 years.
So why do you think that people living with HIV need to hear that message?
So this news-that if you are on antiretrovirals and you are undetectable as the great majority of people are, then you know, it's it's fabulous news. It really is is fabulous news. And it also means that as a sexual partner, someone who is on treatment and undetectable is a safer partner than people who don't know their status or people who you know tested many months or years ago and were negative, but haven't maybe tested recently and have maybe had some exposure, etc, you know. That people are very, very safe sexual partners without...whether they use a condom or not, whether they're in a monogamous relationship or not. So you can be promiscuous, you can be doing all sorts of different sexual practices, you can be not using a condom, you can be having sex with many, many people. And you may be completely uninfectious. And that's absolutely groundbreaking. And that's so important for people living with HIV to know.
As other service providers and agencies struggle to, I mean, because it is a big conversation to have within the agency, because it's a big responsibility. What advice would you give to them as they sort of grapple with this with this news?
when I first heard about U=U, I had, I think, some of the same reservations that I think other people are experiencing now, which is that if you don't include the sexual transmission part of it, it sounds too good to be true. And in fact, at this point, with our understanding of the research, it is too good to be true. So U=U is applying to the sexual transmission of HIV, not potential transmission through, vertical transmission through pregnancy, or potential transmission through sharing injection drug materials. So initially, I had some concern, because I thought it was maybe too simplistic, but then when it actually needs to be always accompanied by the sexual transmission, and then it is science - it is sound science. When I realized that, that it was specifically around sexual transmission, then for me, it was very exciting. And I understand that organizations have, in many respects, I'm assuming just not had the time or taken the time to to really grasp this. But I think that this is something - is really the same as 20 years ago, when combination therapy came out, or the cocktail as we called it then. It's so important that people have to get their heads around it, they have to take the, you know, close the office for a day or have a weekend retreat, or they have they have to get their heads around this because this is absolutely vital to their clients. And we need to be shouting it from the rooftops. We need to really help other service providers, clinicians, as well as people living with HIV and their sexual partners, know this information and be comfortable with this information because it truly is ground-breaking.
After speaking with Laurie Edmiston, the Executive Director of CATIE, I want to speak to someone personally impacted by U=U, so I reached out to Adrian Betts. Adrian is an activist and a poz gay man, and he's dating an HIV-negative man. He's also the Executive Director of the AIDS Committee of Durham Region that does a lot of great work with positive youth.
When you first heard about the undetectable equals untransmittable statement, where were you?
Well, I knew about it before it was U=U. The Partner study was not news to me - the Partner study was was very much on my radar. And all the activists I knew were talking about it and saying, Why isn't anyone mentioning this? Why is anyone talking about it?
And why weren't they talking about it?
That's a big question, James. Well...Wow, how do I answer this one - as a person with HIV as an Executive Director?
How about we start with HIV, personally, for a person living with HIV.
Okay, let's do that.
You can say it.
I'm going to say it. We've been treated like a social pariahs for so long, that people's assumption that we are dirty and unclean and somehow deserving of our illness pervades. And I believe that unconsciously, that's part of the problem, is that people didn't want to give us the absolution of no longer being that disease vector. Because that's what we've been labeled as for years, is that we are a risk to society. And the fact that we're not, well, it causes people to look at the real issue, which is, in fact, people who are undiagnosed who dealt with their status were the real risks. So there's a whole bunch of stigma was a huge part of that equation. And that's why I think so many positive people jumped on board so quickly, and I certainly did as a person, just because, finally, here's some proof indicating that I cannot infect my partners if I'm - even if I'm not using a condom.
So how did you come to sign on to the consensus statement? What did that process look like for your agency?
My board was working, was reviewing materials on U=U when Laurie Edmiston from CATIE made her announcement about endorsing U=U. And that sort of was a slam dunk, then for us, we literally took almost the same wording from Laurie's statement and used it to create our own.
So what would you say to organizations who have not signed the consensus statement at this point?
What are you waiting for? That's what I'd say, I'd say you're letting down your constituents, your clients and your communities. Because ultimately, this is the best piece of news that people who have HIV have had in since [inaudible]. This is game changing?
How do you think U=Uwill change the way you do work in your organization?
Well, this is actually a really useful tool for us because one of the things we have, one of the problems we have with our policy is about compliance and adherence. When you're a young person, 18 year old, and taking your meds is the last thing you want to think about. You want to think about, you know, what shoes to wear and boy in your class or whatever. And so we have a large number of young people who fall out of care. About 33% of all kids who actually transition from pediatric to adult care are lost to care, either end up marrying treatments longer work for them, because they take the medication so so poorly, or actually get full on submit tickets, he died last year of AIDS, in this day and age, ridiculous. So this is a great another tool to say, hey, look, take your meds, undetectable. Stay on your meds, take your meds properly, and you will never infect somebody else. That's a strong, strong reason to stay on meds because no one - I don't know a single HIV-positive person who has ever said or wanted to infect anybody else. You know, the idea is anathema to most people.
What about you? As a person living with HIV? How will U=U change the way you think about yourself? Have you spoken to your doctor about it?
Um, I haven't actually - I will. I think so because I'm dating a HIV-negative man, which has been really sort of fun. But it's a first for me, I haven't done that before. It takes so much pressure off us as a couple, just to know that the risk is not there. But also to alleviate any anxiety his family may have about him dating a positive man. Because he's nervous about telling them, just because he knows there's going to be a push back. So it gives me peace of mind. I can tell them that I will not infect your son. As long as I'm taking care of myself, I will not infect your son. And that is a peace of mind that it's just huge.
It is. Your sexual health is never someone else's problem. It's always your own problem, right? It's up to you to manage your sexual health and to take the risks you feel comfortable with. I'm dating a guy, we're seeing each other pretty much exclusively, as far as I know. I am comfortable not using condoms with him. If I was seeing 10 guys, maybe I'd be using a condom still, right? Or if I was at the bath house, taking all comers, I'd definitely be using condoms, right? So again, it's not a judgment about people's sexual activity. You can be with as many partners as you want and be as raunchy as you want. And it's up to you where that line is where you are comfortable. And the reality is, if you're prepared to take those risks and take the shots afterwards, more power to you.
So is there a downside to all of this?
I think one of most important things to realize about the U=U conversation is that not everyone can reach undetectable levels. And my single biggest anxiety around that is those people who can't- people for whatever reason, because of their previous diagnosis or other health issues, or just resistant to medication, or they have particularly, you know, tough strain of the virus, they won't be able to get to undetectable. And my concern is that those people will feel left behind or that they will somehow be perceived as as you know, not good PHAs [people living with HIV/AIDS]. I don't want to keep undetectable like a badge, a merit badge. I think it should just be a simple fact, it's science, right? Undetectable equals uninfectious or untransmittable because if you can get to undetectable status, and if you can maintain it, then you cannot transmit the virus. And that's the root of what we're talking about today is that this is about a series of circumstances which line up to produce this result. And doesn't reflect on the people we're talking about. Because so much stigma has been laid been dumped on us all our lives, I would hate to then in turn, increase that stigma on people who are who cannot get to undetectable.
Any final thoughts? Maybe one last comment on why some people are skeptical about U=U?
If you don't use condoms, you are at risk for other other diseases. But we're not talking about that, we're talking about HIV. And we're talking about making sure that the science is accurate and that if you're undetectable, then you cannot pass HIV. That's the key here. That's the message. And that's wonderful.
I want to thank both my guests, Laurie Edmiston and Adrian Betts for chatting with us and taking us through the ins and outs of this remarkable development. It was so good to hear personal perspectives on the impacts of this research. You know, I see now that U=U really is a turning point in our history. Someone whose viral load is undetectable, can't sexually transmit HIV to someone else. Imagine that. We heard from our guests that U=U comes with some important caveats, but given the right messaging and with widespread report, it could well have a dramatic impact on HIV stigma that has plagued us for far too long. People everywhere, and agencies across sectors, really do have to get their heads around this. This is too important to ignore. As Laurie Edmiston said, we need to be shouting this from the rooftops.
I'm James Watson signing off for pozcast, the show that brings HIV research to life.