S2E18: Reflections of award-winning HIV activist, Bob Leahy. U=U guru. Change-maker. All round rabble-rouser.

3:49PM Jun 27, 2022

Speakers:

James Watson

Bob Leahy

Keywords:

hiv

people

treatment

aging

james

activism

hear

bob

bit

international aids conference

aids

prevention

ontario

questions

equals

important

concerns

age group

happening

voice

Today you will hear the views and ideas of our Pozcast guests. We're 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 Pozcast we are created by and for people living with HIV. On each episode, we explore what it means to be pause. 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.

I'm a very opinionated guy. So I did a lot of sort of first person editorializing and I kind of made a name for myself as an alternate voice. I didn't always agree with others in the field.

We have a great show for you. This is Pozcast.

I am very excited about my guest today. He embodies the tireless and courageous spirit of HIV activism in this country. He has never been afraid to speak out. With 75 years under his belt, Bob Leahy has a unique perspective on living with HIV and has been instrumental in shaping the movement and the sector. Born in the UK, Bob emigrated to Canada in 1971 and was diagnosed with HIV in 1993. He left his banking career, went on disability and his volunteer work in the HIV sector began in earnest. Like many high functioning volunteers, he was in demand and became involved in the workings and governance of numerous AIDS service organizations. In addition to all of that, for nine years, he was also the publisher and editor of positivelite.com, a peer-run online Canadian magazine, one of my favourites. Bob is a vocal advocate for older adults living with HIV, and has had a direct and transformative impact as the leading Canadian U equals U advocate in Canada. He's won a number of awards, including the Casey House award, the Queen Elizabeth II Diamond Jubilee medal, and has been inducted into the Ontario AIDS Network honour roll. He has been an instigator and a troublemaker. And an inspiration to many. We have a lot to talk about, Bob, welcome to Pozcast.

Thank you, James. I love that introduction, particularly the troublemaker, we can talk about that later. But thank you.

You're welcome. So you describe yourself now as a largely retired activist. So which part of you is retired?

That's a good question, James. Retirement is never you've never done it before. So I never quite knew whether to fade quietly into the background or make an abrupt stop. And, and I decided to do an amalgam of those two things. So right now, I'm slowly fading into the wood work, although I'm still involved with with some work, and I'm going to the International AIDS Conference next month and speaking to you, so I'm kind of still got my foot in the water a little bit.

Right, right. Was it a difficult decision to step back?

Well, it's a certain age, you start thinking about what you want to do with the rest of your life. In my case, it was really quite late. I was really very, very involved at about the age of early 70s. Anyway, pretty well. 24/7 when I was with Positive Lite, that was a very heavy assignment, that particular one. So I really, I really a lot of work. Yeah, I had to back down from that a little bit. But I still kept involved with some committee work, etc. And started to pick, here's a sort of life lesson, James, do the work you enjoy, and scrap the rest if you possibly can, because that's kind of what I did. Yeah, it's nice to be able to pick and choose what you can do. And so that's the space that I'm in right now. And it gives me a chance to garden, to pet the dogs, to do things which are equally as important, I think for a person as trying to change the course of HIV.

Right. Well, that's, you know, that sounds lovely, petting the dogs, that part. So I just wanted to go back a bit, because I'm always interested in how activists got their start. So in 1993, like when you acquired HIV, and from what I understand, like shortly thereafter, you were out about your status and started volunteering. So what led you to that decision to step out front?

I took the position very quickly in my HIV career that I wanted to be out, I made that decision that I wasn't going to hide under, under a corner, I needed to let my friends know, let my neighbors know that I was HIV. So I did that. So that I think that was an important first step, you know, start tackling stigma head on, right. But then I had made some moves that were accidental at the time, but really worked out. For instance, I started with the AIDS Committee of Toronto, as a front desk volunteer, very first volunteer thing I ever did with the HIV movement. And it was a really good starts because I, you know, ACT was a good place to work and the front desk, you know, you got to know everybody. And I got to read a lot. So my advocacy career kind of ramped up quick, fairly quickly. It was a natural step for then to be involved in boards. I was on the board of PARN, I became their ED, PARN is the, that's the Peterborough AIDS Resource Network. Yeah, so I was the chair of that. And then I was on the board of the OHTN. And I was on the board of CAS. And those two assignments, if you'd like, taught me a lot, right. At the same time, I sort of used my interest in blogging to start writing and eventually publishing. And that was a huge opportunity for me to give other people a voice but also to I'm a fairly opinionated guy. So I did a lot of sort of first person editorializing, and I kind of made a name for myself as an alternate voice. I didn't always agree with others in the field. So.

Right, so back in the day, I mean, I'm just thinking about now and back then. So what were the main issues that you focused on back when you first started volunteering?

My first, I guess, big passion, and it really carried right through my career was, was around treatment. Now, I'm not a treatment expert. But I was on the first clinical trial of the first protease inhibitors. So I knew right from the start, I had had experience with treatment and seeing how it works. That sort of segued into in the start of the 2000s, into an interest in treatments prevention. Initially, I was a bit cautious because a lot of people were saying treatments prevention is it's trying to medicalize the condition, you know, we're taught we're trying to pump people in pump with medication, so they don't transmit HIV. So there was that side where we had to deal with and I think we did. So I became an advocate for treatments prevention, when suddenly not many in Ontario were, we were hearing strong voices from BC, in particular Dr. Montaner, Julio Montaner, who I actually had developed a kind of close relationship with because I was sort of starting to really see the benefit of treatments prevention and getting over my initial concerns.

I remember reading an article where you sort of do a turn arond and you changed your mind.

That's right. What was it called, now? Let me think, how I changed my mind on each on on treatments prevention. That got picked up and translated into German and Dutch and goodness. But the interesting thing that Montaner read it, and he likes it, so he invited me to Vancouver for a couple of conferences. And I interviewed him many times, so I was sort of an ally of him in the social media field, which of course, put me in the bad books of many in Ontario, because at that time, we were saying bad things about treatments prevention. We weren't liking it, the AIDS Bureau wasn't like,

It's true, right? Yeah, it was a hard roll.

Yeah. And then when the Swiss statement came out in 2008, suggesting that people with treatment don't transmit the virus. And there was a huge backlash to that. A number of organizations produced position papers saying, wait a minute, you know, this is not definitive, you should still be using condoms, all those kinds of issues. So that was when things really became interesting. Because I was not buying it so among the people are saying no, this there's some science here you have to listen to, and and with real world experience people were starting to have sex with with partners, where one partner was on treatment, the other was negative and not there was no transmission happening. So there's...

Their big fear was like they were they were wanted to like, not hide but delay that public health message right. And they, it from my understanding, they didn't want people to stop using condoms because they were still thinking that there was some risk.

Right. And they had this in, in what's the word ingrained opposition to bear backing or anything that would sort of encourage bear backing, and that that mindset carried over pretty well right through until U equals U came along or the Partner study came along, which was a study that a large scale study that pretty well proved that if you're taking anti retro viral treatment, and you're undetectable, you're not going to transmit the virus. So that information sort of hit hit us in 2016. It wasn't embraced originally, not by any means. So that's when I think probably my biggest battles began, because I got involved with Bruce Richmond, who's the founder, really of U equals U in the summer of 2016. And again, we became close too, and that started a huge push to get some of the influential bodies to accept U equals U and we did a write up to to the Government of Canada accepting U equals U, signing on in, in World AIDS Day 2018. But that was very, very challenging. And it was also a lesson in community activism. Because all this was not led by the larger organizations where they were absent from this, it was people like John Makalah, and Darien Taylor and some really good people who sort of banded together and strategized about how to get organizations on board. And we did it. You know, I have a career, I think, almost 30 years in activism, and that has to be the sort of thing I'm most proud of not not the...

Well, it's a remarkable, remarkable achievement, really.

It was, it was something to be proud of, and those things don't happen very often. So one day they'll make a film of it, because I missed out all this sort of backroom plotting, and, you know, some of the characters I'm not gonna name, but it was it's a really good story. And, and it was even played out on the world stage. And we took the message to Paris International AIDS Conference in 2017 and stormed the stage. I love doing that. Right? You don't get a chance to do that very often, right? And then in 2018, in Amsterdam, again, the International AIDS Conference, huge demonstration there, but more of a celebration, if you like, of the progress that the community had made. So I'm very proud of that.

You should be, yeah, absolutely. This sector, you know, can sometimes eat its own. If I recall, like, there was a lot of pushback. You've been mentioning it, but a lot of pushback against you personally. And I wonder, how did you manage when things got personal?

I fumed. I can tell you. I was shut out of conferences. Sometimes I had to wait outside while there was sensitive material that they didn't want the media to hear. And yeah, that really bugged me. I'm not gonna say I came to terms with that. And I'm not going to name names who shut me out. But yeah, I'm a sort of passionate person, so I don't get angry. But I do get down when things are not going well. And well, yeah, we had some, some very challenging times. But we, we somehow it's about resilience, I guess, you know, we talk a lot about resilience. That was a chance for, for some of us to practice resilience and keep going.

Right. Right. Now you've recently had surgery?

Yes.

Major heart surgey.

Yes.

And you've written about it, of course, which is, which is, it's a great article, I encourage anybody to read it in Poz magazine. So I just wanted to touch on that. How do you think that's changed you?

Well, that's interesting question too. It's certainly caused me to reflect a lot and reflect a lot on how I've coped through because cardio illness or heart conditions, they affect a lot of us as we get older, so you know, it's more a reflection on aging, and how you deal with a body that is not working as well as it used to. And in my case, actually, it prompted some interesting changes because after after that surgery, you're encouraged to sort of change your life a little bit. I went through cardiac rehab therapy, told me about eating better and exercising and all those things. So there was a radical change in my lifestyle then. I also have diabetes and neuropathy and just being old some of the things that happen to you. So you, it also changes the place of HIV and your life. And I have to confess that with with those kinds of things happening without conditions and recovering from surgery, HIV seems easier to manage compared to some of those things. I mean, diabetes, HIV is often compared to diabetes, but in actual facts, the hybrid is much more of a challenge to deal with, to cope with to manage than HIV. And of course, heart conditions can require very invasive procedures. I mean, you know, you know, what happens when they do open heart surgery, it's big time, and it leaves you weakened like I've never been weakened before. So time of reassessment, James, but actually for the good, I think all those things, I'm probably a little bit healthier than I ever was, more conscious of what I eat, and more conscious that I should be exercising more, and I do. So yeah, time for reassessment. I think it's what that was all about.

Now, you wrote in that article about HIV hasn't changed enough, since it was a majorly life threatening condition. Instead, we faced a growing danger of HIV being overblown in relation to other diseases. Could you expand on that? And what your your feelings around that?

Yeah, that's for overblown was probably not a good not a good choice of words, because I still think it's a major health concern from a public health perspective, and from an individual perspective, and the fact that it doesn't strike or doesn't...not all communities affected equally, is worrying. So I can really only speak as a privileged white man and my, my experience of HIV is very different, maybe. But as I said, James, we do have to acknowledge that HIV is much more manageable now. So what is the impact of that on the services we provide on how stigma still stands up? And criminalization all those things? So yeah, I do tend to underplay HIV, I must admit, in my own life, and I stress right in my own life, and that's all I can do. With other people still obviously, they're struggling, and, and people are still dying. But in my own life, and I think, I like to think that we value, you know, personal experience. So each everybody's personal experiences is valuable. You don't discount people because they privilege because they're not privileged. So each story is important to listen to, I think, and that's why he's going to talk about this.

Yeah. Okay. So I've recently, you live in a rural environment. I've recently moved to a rural environment. I grew up in a rural environment. But coming back to the rural environment, living with HIV, has opened a whole nest of issues for me, around stigma and sort of, I thought I had all these things beat, you know, and then I come here, and I'm like, oh, I need to find a dentist, I need to, when I go to the chiropractor, do I disclose that I'm HIV positive? What about getting my blood done here? How confidential is this small town? Like, I don't know. Do you have that? Did you go through any similar thing there?

I thought I would James when I moved up here. That was in 1996. And somebody told me, I met a gay guy, he Oh, he knocked on her door and said, Hi, I'm gay. Oh, you know, one of the things he said was, don't tell people your HIV. Because I was gonna write about it. You know, I was blogging at the time. And my blog was this before even HIV. I used to blog every day. And so I was gonna write about it. I'm a new guy in town. I'm HIV positive. He said, don't do that. He said they'll burn your house down. So I'm not seeing many burn houses around here for you guys. So I completely disregarded that advice. But there is that stereotype yeah, that your rural neighbors are not going to like you very much if they know your HIV, so don't talk about it. Now, my experience has been quite different. My experience of rural people, rural neighbors, is that in my community, at least I live in a funny little community called Warkworth. And it's known for being a little bit gay. Yeah, it is. Yeah. So two one, I think the Globe and Mail call it the gayest village in Ontario. I don't know whether you can hear any of this and say it applies anywhere else, but I will just tell you that no, I never had a problem. It's partly me I mean, if you come out strong and let the chips lie is that the right word? Let the chips fall or something like that. Fall where they may or something like that. That the consequences are often better than you think. A lot of what we worry about is often, you know, our own insecurities coming out rather than necessarily a reflection of the environment you're in. So James, give it a go. You know, I think you'll find that yeah, you know what, we're all people like that basically good, often God fearing guys, when Yeah, but that doesn't necessarily mean they're going to be nasty to you.

No,I'll just say we recently had an election. So I sort of judged my neighbors by their political sides.

Oh, well. That's, I mean, they can be they can be staunch blue, that still be nice to you. I know, when I, when I came out of at my hospital, there was a period when I didn't have a place to exercise because the mall was shut down the exercise place was shut down. And the local church, the United Church offered to let me walk around the cemetery in circles, which I did for a bit, actually. But that's an example where, you know, religion alone may not be our cup of tea, or they may not represent our values, it nevertheless is about being good to people sometimes being kind to people. And that's what I've been fortunate to experience. Again, not necessarily typical, its just my worlds, I'm just talking about my world, right,

Which is sage advice nonetheless.

Yeah, I hope so.

Yeah. So I wanted to just continue on with the aging discussion. You're still engaged in activism around elderly folk who are aging with HIV. And in what ways are you engaged in that activism?

Yeah, well, I've been sort of concerned with that file over that topic, for some time, because what I was noticing was that HIV and aging, the conversations are often involving panels of 50 year olds, concerned about what is happening to their bodies, and their attractiveness and that brain. And I had some of those concerns. But my my concern was also about older adults, because we don't have really good numbers, how many old people we have, who are HIV, we really don't. But we know the number is growing. We know that 50% I think are over 55 years old. Now. I think that's the most current statistic. And we're rapidly going to have a lot more people. And I'm already there, like, I'm 75. And I'm seeing the world a bit differently than I did as a 55 year old, because you have a whole bundle of concerns that 55 year olds don't even talk about. So that translates for me to advocacy, around not so much aging adults, but older adults or elderly adults, you know, people in their 70s are their needs being taken care of their voices being listened to? Do they need HIV support? So there are other things going on in their life that are far more important. I think these are these are questions that I don't have all the answers to. But I do really want to be part of the discussions around being old with HIV, not just aging, we've I think the balance needs to change. I'm really, well they're talking about the International AIDS Conference that they now have, or they will have in Montreal, next month, a silver zone, which I think is cute way of saying, this is where older adults can congregate and network and feel accepted and love. So I'll probably, if you if anybody's coming to Montreal and want to find me, there's a good chance. I'll be hanging around the silver zone alot of the time. So.

Me too.

Oh, yeah?

Yeah it's great. I mean, it's yeah, for sure. You know, they describe it as a place for older people living with HIV to reengage with the HIV community, and follow the science on HIV and aging and to feel included and celebrated. And this is being hosted by an organization, Realize, a national organization in Canada. So how important is it to you like for the older HIV community, to feel included and celebrated?

I think it's really important, James, particularly as the numbers are so large, and we are not really hearing from many of my colleagues in that age group, very much. Now. We have some brilliant activists. I'm thinking of people like John McCullough and Ron Rosenes, who was still, who are in my age group, and are really at the forefront of innovation in HIV. But we're not a large number. The fact that I you know, can't name more than five activists of that age group in Ontario anyway speaks volumes. And there are reasons for that. I mean, there are some very obvious reasons why if you're getting old and your mobility is not quite the same, or you can't hear so well, you can't see so well, you can't drive maybe you're not maybe as involved or wanting to be involved as you were in your younger days. So we're somewhat invisible. And that could be because we don't need HIV services. I think that that could be one of the reasons, but it may not be and I want to hear from that sector, to try to figure out what our needs are, because I'm just getting the feeling that they're not being met.

Right. Yeah. Fair enough. So what advice would you give to young activists starting out in the HIV sector?

That's a good question, too, James, it's such a long time, since I was a young AIDS activist, I can hardly remember. I really think before, you know, jumping into boards, and that start getting involved at the local community, local AIDS organization. But that's what I did it anyway. And it was really, really good for me, because all of a sudden, I was connected. I was started going to conferences, reporting on conferences and just feeling passionate about the issues, right. So I think sort of jumping in and listening to people who seem to know what they're doing and listening, listening to. I'm reading a lot, too, I learned an awful lot from reading, read, Poz magazine was the first thing I think ever picked up. And I read it from cover to cover for quite a few issues. You know, I, the other thing I would say is that young people, and older people would really benefit, I think from connecting, I would love to have this conversation, to sort of share, strategizing to share experience, and to hear what young people's issues are, and to make sure that those people are equipped to have those concerns. listened to and met. Yeah, there's a real market. We haven't really tapped yet for intergenerational learning.

Oh, I agree.

And I'd love to be part of that. Yeah. I really would. Yeah, you'd be good at that, too, James?

Oh, thanks Bob. Yeah, that would be a fantastic opportunity.

Because you've been around a long time, too. Right. So you have a ton of experience. Don't just retire and you know, use use that experience in a way that passes it to the next generation.

Yeah, right. Yeah, absolutely. Okay, my sort of my final question for you, Bob, before I go into my, this or that questions, which I usually end off the Pozcast with, what's the future hold, Bob? What's the future hold for Bob Leahy?

I wish I knew. I have never been one to plan very well, to be honest. I've always been a, okay, let's see what happens, kind of guy. So asking me questions like that is challenging. But I will say that I think I probably at some point, I will have to say goodbye to HIV work and concentrate on my health because at some point, comorbidities and how to deal with them become a real going concern, as that goes, you get older I'mseeing this, I have a partner in my age group too. So you know, I think I would like to concentrate on on getting old but doing it well, and enjoying life and choosing things that that you like and try and discard the things you don't like, that's always been my strategy for the last 20 years are trying to trying to do trying to keep focus on things you like doing is really important.

That's very important. Well, thank you for that. All right, Bob. So now I'm going to ask you five ridiculous questions. Really. Rapid fire questions, this or that questions, which will take us out of Pozcast here. Are you prepared?

I am prepared.

All right. Okay. So glass half full or glass half empty?

Glass half full. Definitely.

All right. Be embarrassed or be afraid?

Embarrassed? Hmmm. I think the probably answer would be I hate being embarrassed. So I'm going to say be afraid.

Okay. Visual learner or verbal learner?

Visual learner.

Visual. Logic or emotion?

Logic, I think.

Pause time or rewind time.

Ooh, good one. Rewind.

Rewind. Okay. Thank you, Bob Leahy so much. It's been a pleasure talking with you.

Thank you, James. I enjoyed it. And thank you for hosting me. I appreciate the chance to have an older voice on the airwaves.

My pleasure. 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 pozcast4u@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 with the Acme podcasting company in Toronto.