HIV: Undetectable = Untransmittable (U=U): Healthy Canadians podcast episode 5

Transcript

Transcript

Megan Beahen: Hi and welcome to Healthy Canadians, your space for nuanced conversations and expert insights on the health topics that matter to all of us living in Canada. I'm your host, Megan Beahen. Today on the podcast we have Adrian Betts, Executive Director of The AIDS Committee of Durham Region, and Claudette Cardinal, Indigenous community researcher at the B.C. Centre for Excellence in HIV/AIDS to talk about Undetectable = Untransmittable, or U=U.  We’ll jump into that in a moment. But first, a quick word from us.

Healthy Canadians is brought to you by Health Canada and the Public Health Agency of Canada. We aim to give you information and perspectives about the health topics that matter to all of us living in Canada. What we discuss won’t always reflect the official positions or policies of the Government of Canada, but that's okay. These are conversations, not news releases. Okay! Let's talk about U=U.

Hello, Adrian and Claudette. Welcome and thank you so much for joining me today on Healthy Canadians. Adrian, why don't you start and tell me a little bit about yourself and what you do.

Adrian R. Betts: Well, I'm Adrian Betts, I’m the Executive Director of the AIDS Committee of Durham Region, which is a local AIDS service organization outside of Toronto, just east of Toronto. And we also run a provincial-wide positive youth program called HYPE, HIV Youth Peer Engagement. And I’ve been living with HIV a long, long time. I've been working in the sector since late in ’89. So, I'm kind of what do you call it? A dinosaur? [Laughs]

Megan: Awesome, thank you. And Claudette, tell us a little bit about yourself.

Claudette Cardinal:  My name is Wâpakwaniy. I'm from the Maskwa clan, Treaty 6 territory originally, and I am signing in here today on the Squamish, Tsleil-Waututh and Musqueam Peoples. I have been living with HIV come December 18th. Well, actually, December 12th is when the lab knew that I was HIV positive. It took them six days to relay that message, to find me, to bring me back to the office, to give me the diagnosis. And yes, so it's almost like 29 years starting in December, my 29th year with HIV.

I work at the B.C. Centre for Excellence in HIV/AIDS as the Indigenous Community Research person. However, the titles, the titles we keep on morphing. It's like peer research associate, community research associate. I just put Indigenous there because that's who I am. I been working at the centre. Oh, my goodness. I started at the CI program, the Canadian Investigator programs for CANOC, completed my term two years from 2017-19 and I've been employed there as a peer research associate and last year's recipient of the Community-based Research Award –twice– recipient. Once with Thrive, the team last year, and [inaudible]. 33 peer RAs in 2019. And that's me and I’m just busy, busy. And I’ve got grants under my name and all kinds of things.

Adrian: Can I just reflect on something you said there? It is weird when you realize you've been HIV positive, longer than you've been HIV negative, but it's a strange adjustment to make in your head that that your disease, which has become an identity in many ways, the way that other diseases are not. You ARE HIV positive, where you HAVE cancer. Yeah, it's fascinating to be this age and to survive and to think back on what life was like before HIV. It's hard to remember. Sorry, I bring up a tangent already.

Megan: This is why we wanted you both on the podcast because not just because of your expertise in your work, but also because of your stories and your life. So, we're going to dig into that. We are talking today specifically about U=U, so U=U, for those who don't know, means Undetectable = Untransmittable. Let's start with the basics. Adrian, maybe do you want to start and explain what U=U is?

Adrian: Yeah. Absolutely, it's really an easy thing to understand. If you're HIV positive and you go on antiretroviral therapy and you take your medication regularly, your viral load will become undetectable. Meaning it's at a level so low in your body that it's become undetectable. And what they found through quite extensive research is that if you are in fact undetectable, it is impossible for you to sexually transmit the virus to a partner, meaning Undetectable = Untransmittable. Therefore though undetectable, I can't give the virus to anybody. So, that's the simplest way of putting it. And that ultimately that's biologically what it does. But what it also does is dismantle stigma, and give people living with HIV an incredible sense of comfort that they've never had before. I don't know a single person living with HIV who ever— who’s biggest anxiety is not about infecting somebody else. So, it was viewed as a game changer in many ways. But ultimately, it's about not being able to transmit the virus.

Megan: Excellent. Thank you. That is a great explanation. What is happening in the body when you're taking antiretroviral therapy?

Adrian: The advent of ARVs is what saved my life. I was living with AIDS at the time when ARVs came along and saved my life. ARVs do, among many, many things, the different meds do block different parts of the lifecycle of the HIV virus, meaning you'll have some drugs that prevent it from replicating, some drugs that will prevent it from entering a healthy cell, some drugs preventing it from leaving another cell. Other drugs preventing it from mutating into a different strain of HIV. And so, the combination of all these therapies is what makes up antiretroviral therapy – a combined therapy – effective in that you stop it from replicating, from leaving and entering healthy cells, from latching onto cells in the first place and from mutating. Then, your body will naturally process the disease out of your body to the point where you reach undetectable levels. Now it still sits in reservoirs in your body which the medication can't reach, but ultimately it produces such a profound effect on your, the majority of your body that you become relatively well. For a better [inaudible]. It was weird being so sick and then being healthy so quickly too. It was alarming how quickly that change happened. But they were a game changer and literally, literally saved lives. I was on my way out. I'd been told to get my affairs in order, but this treatment saved my life. My friend Larry not so lucky. If he'd just, hung on another month or two, it would be a different story.

Megan: Wow. So, on an individual level, is that like a pretty typical experience? Once you start taking these therapies and they do start working for you, is that a typical experience of an individual, a feeling like very well, pretty quickly?

Adrian: There’s always an adjustment to new medication, right Claudette? I mean, they put you on a new medication and they say, ‘Oh, the side effects are minimal.’ Well, everybody's different. Pharmacy in general is always a bit of a juggle, but in terms of the efficacy of the drugs, AR achieves more modifications every year, and they're easy to take by the [inaudible] every year. I think one of the most fascinating things is just that you can say to somebody today, is that if you're a young person infected with HIV and you are diagnosed early and you're put on antiretroviral therapy, that your life expectancy is now longer than the average Canadian. You know why? Because we see our doctors every six months, or at least once a year, whereas many Canadians don't see their doctors. They only go when it's super urgent. By then it's often too late, whereas we're screened every six months for everything. And so cancers are caught early, so other illnesses are caught early. And so, the life expectancy of any person newly infected, is longer than that of the average [inaudible]. It’s so cool. And ARVs has done that. Claudette, throw in your two cents here.

Claudette: For me I'm more on the natural holistic end and it's like I have enough toxicity in my pill regiment as it is because the fact that you and I are different weight and size, sex, all that, nationality and the pill dosage that you're on is basically the same dosage as for women. So, there's, I think, new studies that are coming out for about the different dosage for individuals like say I'm 5’-4” and I'm taking a full on strength as the same individual that’s six-something but I mean about more naturalistic, I like stopped all the drugs going through my body, harming my body and being more conscious of what's going on in my body so that I'm more like, now I do those three things that I how I consume cannabis and then everything else is like now that's… I think 2016 as an example I had, thinning of the bones, and that’s how I mean about research and doing a different treatment and changing okay from Stribild, Genvoya, Genvoya, to Biktarvy now, right? So, I’m like okay and I might just stop right now and maybe I want the shot but then that's like “Ugh! In the butt!” And I used to have to get iron shots because my ferritin was so low, like I was like at two and I had to get frickin’ IV at the hospital treatments of this brown sugar bag I called it. I was sugaring up because my levels were so low.

Megan: So, U = U is kind of like a motivator to stay maybe on top of your ART, but also it has an impact potentially for someone on their overall health as well.

Claudette: And I didn't know about that in the beginning. I thought, I knew in the beginning, as soon as I took my medication that was told to me that you it's fine, as long as you stay on your medication.

Megan: I wonder if you can talk a little bit more about the research, the specific research for U = U and how exactly... and because I know there's a lot of research, a long history of research.

Adrian: There's the two big studies that, one’s the Partner study and one is…, oh my God, [inaudible]. I think it’s HPTN 052? It's a number. I mean these, these studies were studies where they had couples, discordant couples, male and female couples primarily. But there were also a second study with gay men and they monitored these couples who were on antiretroviral therapy and undetectable versus those who were in the control study who were non-undetectable and so forth. And it became so obvious, so quickly that there was almost zero transference of HIV or transmittance of HIV between partners when there had been adherence to the medication, and [inaudible] levels were maintained, that they ended up closing the study early and putting everyone on ARTs, so that they could actually prevent the spread of HIV. The studies, literally they were there for a while. I mean, even think back to the Swiss Statement going back several years before. There was a comment made at the AIDS Conference in Switzerland about, you know, they didn't believe us. That once you are infected, you could transmit the virus, something [inaudible] by many, many people. But then here we are many years later the Partner study and 052 study come along and they prove it without a doubt that ultimately you can't transmit the virus if you're undetectable. Now, the irony is no one wanted to believe it. No one in the medical profession or even the research parts of the world wanted to believe the science, because people are more comfortable looking at people like Claudette and I as disease vectors than as people. That we are dirty, we've somehow deserved what we've given ourselves and that we are more of a cautionary tale than someone who deserves to be treated with respect and dignity. And so, it was the PHA sector, itself, like PHAs, people living with HIV who got this whole movement going, pushing the research, sorry, about U = U and making people listen. I remember being, I mean, I’m an Executive Director of an AIDS organization. I was aware of the study, and I was at a meeting of all the EDs in Ontario where the Gay Men's Sexual Health Alliance wanted to launch a new campaign and also include U = U as part of their messaging. And there was an adamant refusal from the people in the room who say, ‘Oh, we can’t endorse that. It’s not proven yet.’ And I'm like, I'm sitting there going, ‘This is crazy. It's a fact.’ —am I allowed wo swear on this thing? Because might— It made me incensed. I was furious because they're sitting here, these HIV negative people are sitting here telling me, you know, that I don't know what I'm talking about, that I don't understand this, but they'll endorse condoms, which are 95% efficacious. They’ll endorse PrEP, which is 98% efficacious. But this one is like 99.99999 and they won’t endorse it? Well, tell me that's not stigma related, please. And so, it literally took people like Bruce [Rickman] from [the Prevention Access Campaign] to move this conversation forward and organizations like mine, we signed on to it immediately and the AIDS Committee of Ottawa I know signed on right away recognizing this was a huge step forward against the stigma that people with HIV face every day. You know you could balance HIV stigma with things like sexism, anti-Indigenous or anti-Black racism and poverty, and things really start to compound for people and making it difficult to get healthy in any way. Accessing medication, accessing food, accessing, you know, really [inaudible] medical [inaudible]. It's harder where there’re more barriers put in place. And this was a barrier that they could remove and they chose not to until they were forced to by people like us who once again stepped forward, don't just remember that GIPA and MIPA, the greater involvement and meaningful engagement of people living with HIV, which is what our sector is supposedly built upon, that was about PHAs storming the stage at the Montreal AIDS Conference, demanding to be part of the conversation. And to this day, we must be vigilant as people living with HIV to be prepared to step into that space and demand to be heard. And U = U was one of those situations where we had to demand that this research be taken seriously and not be dismissed by HIV negative people who just didn't want to change their point of view about PHAs as disease vectors [inaudible]. Harsh words, but it’s how I feel.

Megan: Thank you. Thank you, Adrian.

Adrian: Sorry for the rant.

Megan: No, it wasn't a rant, it was a great and passionate explanation. Thank you. And this is, you know, I think highlights one of the reasons why we wanted to have this conversation today, because I think if you are not as familiar with HIV issues or the concept of U = U, I  think there's a lot of people that probably think like, this has nothing to do with me. And we're here to say awareness is important, right? That's why this is an issue for everyone to care about. So, thank you for sharing that and for sharing your story. I want to pick up on the stigma part of this, because okay, research was amazing. It wouldn't have happened probably without the grassroots support and advocacy of some really key groups. So, stigma really affected the research. How has it changed now? Maybe I'll throw it to Claudette first. Stigma now, since U = U, what impact has that had on stigma? I know that's a big question.

Claudette: Okay. At the individual level, as an Indigenous person, the stigma still is there. It's great that these campaigns are available. But the one thing that you're missing, like the people that are in rural areas and different places, the newly diagnosed that are entering into this new life-long commitment of taking medications, it’s just the impact is for me as a as an individual and an Indigenous person, the stigma is every day like I still get CAR and in April, about, I was on the panel for stigma and discrimination and it's very apparent that when I- it's every day I walk out and I go out that door and I even go shop at my local store, it's like maybe my advice to them is can you put up a local list of grocery shoppers that come through your door? It’s like we need a vert– a visual of our mugs there to show that we're legit shoppers and we don't need to be followed at these, I’ll just call ‘em Mr. Obvious and I get run around by this person every time. It doesn't matter which store I go to or whatever. That's the stigma that is following me every time I go anywhere.

Adrian: For you personally, though, I fully understand what you're saying about Indigenous racism and the stigma of being Indigenous in the country. I get it. But the question I think I would be, I would like to most hear your answer to is did finding out that you could not transmit the virus sexually anymore? Did that reduce your own personal stigma around HIV in any way?

Claudette: Yes. And that was in the early days as well with doctors that weren't. I had some sexual problems and then saying to a White doctor and then going, well, I know if I take my medication. So, there's that self awareness in the beginning before U = U came around that I'm like, okay, well, as long as I'm on my medication and I'm practicing safe sex, that kind of thing and all, that’s good. I know I'm not going to pass it to anyone. It's only if you're not on your medication, your viral load, off the roof top and that kind of thing. Then there's that, that law that comes in about the criminalization, right? So, it's like, no. So as long as you're adhering and all that. So, it wasn't- it wasn't a big like "aha!”. I was like, that's awesome that it is, it exists now, it's got meaning to it about the movement about U = U, right? It was like I always maintained that once I heard from the doctors in the beginning that, you know, you take your medications, you'll be fine.

Adrian: Yeah, I'm a gay man and I'm single. And so, since, you know, I'm out there dating, hopeful that I'll meet somebody that actually likes me enough to stick around. But it's changed how I can interact with potential partners, sexual partners. In that, that conversation around disclosure becomes a little easier because with a little education you can explain to the person you're at no risk here. You know, I mean, we can use a condom, we can do whatever you want to do, and we’ll follow the rules that you set. Because consent is consent, is consent. But ultimately, when people understand that I can't transmit the virus, it gives them a much greater sense of comfort. And so, when you don't perceive yourself as a disease vector, that did make a change for me, absolutely. Personally, it made me feel more confident. I had a boyfriend at the time and he was negative and I felt really happy that that one niggling worry, at the back of my mind, no matter how minuscule it was like, it was off the table because I'd been undetectable for years and that it's very little chance that I would ever infect. And so that was a wonderful thing. I do think, though, I think people in our community are aware of it. PHAs. Do I think the rest of the world is? No, I don't. And do I think the medical community is aware of it? No, I don't. The number of people I know who have had to explain to their doctors what U = U is about, is ridiculous. And that, generally speaking, you know, they don't operate that way. You don't walk into a clinic and hear most clinicians, doctors, nurses, nurse practitioners talking about U = U in that way and in a terminology that is about healthy sexuality, and you know, healthy relationships. Instead, they go, they will always cite that .00001 chance of infection. Right? Because they don't believe in the scientific absolute. Right? There's not been a single recorded case of HIV transmittal from someone who's on the injectable in any of those studies, to their lover without an explanation, meaning the person stopped taking their meds for a period of time or the person slept with someone else. Right? No one else in that study converted. And that's been true to this day and the people that we engage with, we’re not infecting them. They’re not getting sick. And yet still clinicians and policymakers don't see that when Claudette mentioned criminalization, Canada rules the world in number of prosecutions of criminal nondisclosure. And in Canada the nondisclosure of HIV status is considered grievous sexual assault, which equates it to rape. Right? Which gives you a sex offender registry level crime where you’ll go to prison for decades for not disclosing your status. And the rules around it are you must be undetectable and use a condom before you don't have to disclose. Well, disclosure’s a tricky thing. What if you're in a situation where relationship-wise, there’s a power imbalance? Like an abusive partner? You can't always disclose without fear of physical harm and so there are many things that don't come into play. But if they would just look at the fact that the science indicates that this person could not infect that partner, this whole thing about criminalization needs to go away. I mean, and again, it comes down to believing the science. It's amazing to me how many people don't and how it's on our shoulders, the people living with the disease, to educate everybody.

Megan: Well, when we were talking, when we first started talking about stigma, I was thinking, wow, this must have a huge impact on access to care in terms of like getting care, receiving care. But what I'm hearing is that there's still a lot more work to do that in a health care setting. Even more awareness needs to be brought to U = U and we've done a lot of work, but stigma is still pervasive.

Adrian: It's hard. I mean, I'm an activist, I have been activist my entire life. I've been working in this sector since, well 35 years. And I was— I had a health condition that was undiagnosed. I didn’t know what was— I was sent from oncologist to one doctor after another. I ended up going to see a dermatologist. I walked into the office, I was asked to disrobe, so I was naked, waiting for this doctor to arrive. You know, he read my file but then he came in. He was wearing double mask, double gloves, double mask face shield. And he looked terrified. He stood, this was before COVID –long before COVID– he stood across the room from me and took one of those big wooden Q-tips and he touched me with it, like just like that, you know? And then he said, I'm sorry, we can't– I can't help you. We – I don't treat people like you. In that moment, am I an activist? No. Am I an Executive Director? No. I'm a naked gay man living with HIV who's terrified that he's got yet another ailment that may kill him, but no one can diagnose it. And this person has just diminished me into nothing. And it wasn’t until I was getting dressed that I found my agency, where I got angry. Right? And I ended up screaming my head off in his waiting room in front of his patients. And then I went back to my office and I called the College of Physicians and Surgeons, and I reported him. And I insisted that they send my team from the AIDS Committee of Durham Region in there to educate him and his staff on HIV 101, including U = U. And because this was a medical doctor who had no clue about HIV, period, let alone U = U. So, HIV stigma is alive and well in Canada, trust me. And when you compound it with things like racism and misogyny and all the other isms, that put barriers in place. I mean, it's not just the stigma there, but there’s the whole access piece you mentioned about access to care. Like it's hard to be undetectable if you're not taking your medication regularly. If you don't have access to health care professionals or the medication equitably, well, then maybe you don't do that.  If you're a woman living in poverty. Let's say you’re and Indigenous woman and living in Toronto. You have three kids and you work two jobs and you know... what comes first? The rent comes first, food comes first, the kids come first. Now if that means you don't have the money to pay your deductible for your medication, then guess what? You're not getting your medication that month. Or people do what they often do, which is take it every other day or take it, you know, three days a week and then four days off. They’ll make the pills last. And the problem is what that does is lead up to build resistance to the medication, which is bad, makes medications ineffective for people long term. And then also it dilutes the effects of the medication, meaning they won’t get to undetectable. So, getting to undetectable is a challenge because of multiple stigmas that make the health system in Canada difficult to navigate, particularly for newcomers. If anyone doesn’t speak English or French, for Indigenous people astronomically, for Black people astronomically. You know, I sit here in my now 50 something year old male white privilege, cis-gender privilege, and I go, I know this system. I sat on the advisory council of the Minister of Health, goddamnit. I know how to advocate my way through the system, but I have trouble some days. So, how the hell, what chance does that woman have? It's hard. Sorry. I'm going off on different tangents here.

Megan: No, it's not a tangent at all. That was excellent. And exactly what I want to start talking about, which is access in general. So, you spoke a little bit about access? I don't know, Claudette, do you want to add in some barriers to access that you've seen or you faced yourself that are specific to your community?

Claudette:  I can give you an example. My accident when I was going home for a funeral, back about eight years ago and wintertime. Yeah, that's why I'm still traumatized from the winter. I was doing 80 and I hit the mountain. I was coming up in Kamloops corrected myself from going over the ledge and then straight and then the right tire caught the side of the road and then that pulled me into the ditch. And then four times into that mountain. What I'm getting at is that I had to wait, it was like 7 o’clock in the morning. I did not get treated properly at all, like the person, the passenger got taken to an area to get X-rayed and all that kind of stuff. I said, got given the good dope and then I had to go and check myself in at the emergency. So, here I am and I go in and present myself, and then as soon as the clerk got my file and everything, it was like ‘eww’ she got it like this and put it through because it had HIV on it. And then I had to go and follow the line and go wait in the area to be seen. And I did not get any kind of care at all, properly, like evaluated anything. I was on the phone, being so, like dutiful calling my board of directors saying, oh, I think I'm going to need some time off. I was just in an accident da da da, being all calling people. And then I'd see the ambulance come in and I go, ‘Oh, where's my vehicle? This is my first accident.’ I had no clue that you had to call a claim, do anything. So, my car sat out on the highway from 7 o’clock ‘til 4:30 (when) I was released at the hospital. So by time I got that information, I'm trying to do a claim. I wait and wait and wait to be seen by the doctor. Gets me on the thingy when my time comes. Pushed me around like this. Like barely touched my stomach. Like, just nothing, right? Nothing and that was it gave me a little container of about maybe three or four pills and then a prescription of Tylenol and then that was it. That was my care. So, I mean, that's how we get treated as individuals. It's like, okay, I'm not drug seeking. I'm like, in a car accident. I stayed in my hotel room for three days, didn't eat, didn’t do nothing, just ate enough to get my pills in me and just I had a big bruise on my head from like bouncing up and down like a rag doll, right? So, yeah. And it was not good care. And that's how it is. For me, I barely go to the doctor as I do. I will try to do my own kind of– get rid of it, do some medicines, that kind of thing. And then if it’s really bad, then I go ‘okay’. So I don't take a lot of antibiotics. I don't get seen about a lot of things. I don't do consume a lot of anymore toxic– toxic things that are already going in my body. So, I think statins, my thyroid pill and my HIV meds and that’s it. And my natural products.

Megan: So, really a barrier to kind of basic care because you're living with HIV. Is there would you say that people, Claudette, in your community or where you live if they are living with HIV, are they able to easily get into retroviral therapy? Are they able to get it easily?

Claudette: Here in B.C.? Yes. That's the one given thing about B.C. that saved my life. Being from Alberta was that the antiretroviral therapy is given t– free to anybody that's positive in the province of B.C.

Adrian: I’m in Ontario and it’s not covered. It's not covered. Because I'm working, if I was on disability, then yeah, they'll cover it. But because I choose to work, and not be disabled and claim assistance, then I have to access catastrophic drug coverage through the Ontario Trillium Foundation, which has deductibles based on your income. So, the more money you make, the more you pay. So, I have to fork out about $12,000 a year out of pocket to pay for my medication, to keep myself alive. And there are some ASOs like [inaudible] that have wellness funds that assist with some medical costs, but they can’t assist with $12,000 for every patient, not every client. That's ridiculous. And so, you have to figure out how to make it work.

Claudette: I just want to say that I agree with you, because one time, the one time I'm traveling to all my meetings that I’ve done it 20 something years and I forgot my HIV meds and I was in Toronto and it was a Friday night and I got a look in my container and I’m going, I don't have my container. My container was still on the table at home here. So, my roommate who doesn’t know techy-techy and I’m like screaming at him at 12 o’clock Toronto time: “I need you to take pictures of my medication to verify, ‘cause I went to The Village, a pharmacy in The Village in Toronto. And because I knew my medication, they got photos, then they confirmed with the doctor, if I didn't have coverage, my status card, which was my coverage, I would have had to pay $400 for four days of meds out of pocket. And I’m going “ooh!”. So, I know what that means about like you think about that scenario that he gave earlier, about the mother and three kids and like, that's the reason why and a lot of the reasons why there's not that many women at the table for that reason, because they’re taking care of other business.

Megan: I think it's you know, we're telling a story here that I think is important for people to hear for a lot of reasons. But one of the reasons I think, is that, like I said before, if you're not as familiar with these issues, you might think, wow, we've made amazing medical advances in HIV research, right? Like, we're good, you know? And I don't think everyone is aware of all of the many, many layers of challenges to access. And there's stigma that people are facing all the time. And that's why this awareness is so super important. I want to talk before we close, because we're almost at the end of time already. But-

Adrian: No!

Megan: I know. Well, this is going to be a big question. So, don't feel don't feel rushed or anything, okay? I'm going to give you a long laneway here. One of the reasons why I like a podcast as an information source, for me personally, as someone who enjoys listening to podcasts, I think it's ... people are very likely, I find, to pass out information on to a friend, to a peer. You're at a party, you're at work, you know? You're recommending a podcast to someone because you learned something really cool and you want someone to listen. And so that's what I want this to be, this episode to be. And so, Adrian, you said earlier, I just want to pick up on HIV 101. So, I don't want- I don't know if we need to go into like the whole HIV 101, but what could we tell listeners now that would really change their mind or, would have a positive impact and would maybe want them to pass this episode on to someone? Maybe let's start with like, what's the impact on HIV transmission now because of U = U? I don't know if you have those numbers handy?

Adrian: I mean, that's a lot to unpack, but I'll start with the last part of that question, which is the impact of U = U on transmission rates. Well, the answer is there's little to no impact. In that the people with HIV, not the ones who are on treatment, who are not the ones who are spreading the disease, it’s the people who don't know their status. So, it's people who are not tested and those people who aren’t tested is who we need to reach the most, because once those people are tested and discover their status, then they can go on treatment, they can become undetectable. And then U = U will have impact on transmission rates in Canada. But there are many, many people walking around in Canada who have no clue they’re HIV positive, because of how long the virus can live in their body without actually manifesting symptoms. Right? And when you first become infected with HIV, you become incredibly virulent. There's a reaction from your immune system and the virus spikes and you become the most infectious you can be after several months that viral load stabilizes. Right? And it becomes less likely for you to transmit virus. But in the early days of infection, you are highly virulent. And so that's where we need to have the focused interventions and that's why we need to talk to people, particularly people out there who think HIV is over, that it's got a cure, that it's taken care of. Yes, there are great medications. Yes, we're living longer, healthier lives, but it continues to spread in Canada. It still impacts young gay men at alarming rates. It's affecting older women in Ontario at alarming rates. 50% of all new infections of women last year were Black women. Like, so there's disparities in gender and communities that we're seeing. Rates of Indigenous people across the prairies and in the North through the roof. So, you know, it really– much like COVID did, it sort of shines a light on where systems are failing people. And so, testing really is key and getting to the people who don't normally get tested. That is where we need to go, because those are the people who are unknowingly spreading the virus. I think the other piece around informing people about what to know about HIV is that still can infect anyone. And more and more and more, it is not a gay disease. It doesn't affect just gay people. Which is still something we hear all the time with my outreach staff. Or it's not an African issue or an Indigenous issue. It's a human issue. HIV is human immunodeficiency virus. It's not homo, human. And so, everyone and anyone is at risk, if you're newly single out in the dating world, protect yourself. Look at PrER, the pre-exposure prophylaxis as an option. If you going to be engaged in potentially high-risk behaviour. Insist on condom usage. I’m rambling again. Oh, my God. But, you did ask a big question.

Megan: It is a big question and you're not rambling. It's excellent. And I think, you know, what you're saying is going to make people want to learn more. And so, we can link some resources in our show notes as well. Claudette if you want to add on, if you were speaking to someone who is not as familiar with HIV issues, what would you say to them? What would you say to them to learn more– how about that?

Claudette: I say, you know what, ‘Don't be scared to ask questions.’ And every question is, if I don't know something, I will find my darndest. Google knows everything, so I'll go Google. I'll go to my peers in my community. I'll ask, ‘Oh, have you had this side effect or this, this kind of thing, reaction’, that kind of thing. And that's how that that word and that community level, how the word spreads with one another. I talk to this person, this person says, ‘Oh, I've had this happen with me, da-da-da'. ‘Well, have you tried this?’ You know, there's that camaraderie and sharing of information. So, that it's not so scary for that new individual. Because I can relate for the first time, you know, as being that person new to the diagnosis and everything. We all can go back and be that person and go, well, it's not that scary with the advice of the doctor. That's the specialist that, you know, got the education behind him. It comes down to the individual when they're ready and informed with all of the information that they need to make that decision to go on treatment, I think, is the most effective way I could say to add to my lovely counterpart Adrian's response.

Megan: That's excellent. And thank you for having that openness to have these conversations with us. I want to close with one question, and I'll start with you, Adrian. What is it that motivates you? What is meaningful, the most meaningful in your work right now?

Adrian: Ah, my goodness. Why do I stick around in HIV work 35 years later? Well, there's some– there's a real privilege in being there to see someone's journey from a place of despair and hopelessness to a place of empowerment and strength. And it's been my good fortune to meet many people, women who, after divorce, a widow or become widowed, have gone into dating life and been infected, or women who've been infected by philandering husbands or young people been infected at the age of you know, 18, 17. They come in and they look at the world and they're full of such shame. And there's something about HIV that's unique, in that it blames the person who has the disease for why they have it. There's an assumption about each of us, whether you are White, Black, male, female, it doesn’t matter, you did something to deserve this. You chose a lifestyle or had a behaviour that made you deserving of this disease. And so, there's a great sense of shame that comes, can come with a diagnosis of HIV. And then there's still that belief which is wrong these days that ‘oh my God, my life, my days are numbered. I’m going to die.’ And so that initial feelings of shame of wanting to keep it very, very secret and of fearing that you'll be alone the rest of your life and that you'll never be with anybody ever again. And you will die young or younger than you imagine. That's all not true. When people go through the journey of discovering themselves and learning to adapt to living with the virus and finding their voice and their agency and learning about what disclosure means and how they control their destiny and who knows what about them, and giving people the agency to then speak their truths. It's a remarkable, a wonderful thing to be a part of. And I have been moved to tears many, many times by watching people who step into their own lives with such incredible strength and meaning and passion to say, this is who I am, my disease does not define me and I am worthy of all good things. I’m worthy of love and respect and compassion. And that journey is a remarkable one. If I can help anyone on that journey then, forgive me, but I'm living a life of grace for service. Right? And that to me is where the value comes. And that's what motivates me. I work with young people across the province, young people born with HIV and those newly infected and we match them together. So you see a long-term survivor, person like 21-year-old who has been living with HIV since the day he was born teaching a person who was infected two months ago, about how to manage their lives being part of that journey is a real privilege. I'm blessed.

Megan: Claudette, for you doing your advocacy work, what is the most meaningful to you?

Claudette: I think it goes back to my late kokum and honouring, you know, her struggle and doing the ceremony and being reborn in ceremony and connecting with my culture. I think that's the grounding piece that I have that I bring to the table when I'm involving more community. Adrian had– he was at CAR and attended the “Stats talk back” and that’s what I'm currently in and funded for from the [inaudible]. I've got a grant and I just finally paid my first video and their canvases were done and like, so I'm on that end of being the person that's out there trying to find the money to engage more positive people. Because, you know, when we're together, that's when all great things come together. People take care of one another, if somebody’s sad, sorrow, whatever. just how I deal with people when I engage in conferences. Somebody is having a hard time. It's like go take care of that person, get them settled or get them something to eat. Like just recently somebody was trying to come in from the East Coast to the Zoom meeting. “Just a minute,” he goes, “I'll be there.” I go, “don't worry. Take your time. No worries, grab something to drink.” He goes, “how did you know?” when he gets on the line. He goes, “how did you know that I needed to have a drink of water?” I'm like, “well, because you're just running from this event.” And we all know how that is. How our time is like you go from one event to the other. So, just that time to be considerate and say, no rush, you know, that's how I mean about the movement. And he spoke about Adrian, the GIPA/MEPA principles, and that's how we operate within community that we engage with one another we see that somebody is down, we’ll like have that conversation to cheer them up a little bit. You know, that's how that reciprocal teaching and learning happens with one another and how I incorporate that in bringing more people that want to be involved in research. It’s not so bad if this Cree can get wind of it and go apply for money under all the other big calls that come out, you know, little me going $25,000, here, $5,000 here, you know, every little bit adds up. But then I'm bringing more community and different voices to the table that haven't been at the table before. And that's my plug about being how within community we bring community together at all different angles of wherever we're from. Right?

Adrian:  That is so cool Claudette. That really is so cool. I mean, really giving– making space for the people who have not had a voice. Bravo, that’s incredible work. Well done.

Megan: Thank you for that. I think, like I said before, your expertise and your stories are appreciated very much for this conversation, but also your giant hearts, because I can tell both of you have a humungous heart. And it just totally came through in this conversation and your stories and in your passion. So, thank you again so much for joining me today. We'll link all kinds of resources in the notes so people can learn more, because I feel like you have inspired some people to do that. Thank you again.

Megan: Thanks for tuning in to healthy Canadians. If you're watching on YouTube, don't forget to click the Like button below and subscribe to stay up to date on future episodes. Find us wherever you get your podcasts and leave us a review if you like what you heard. For more information on the health topics that matter to you, visit Canada.ca/health.

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