Note: Transcripts may contain errors. If you wish to re-use all, or part of, a transcript, please contact CBC for permission. Please check the corresponding audio before quoting in print. Copyright © CBC 2018

The Current Transcript for May 17, 2018

Host: Anna Maria Tremonti

STORIES FROM THIS EPISODE

Listen to the full episode

Prologue

[Music: Theme]

SOUNDCLIP

If you're teaching in residential schools and you're teaching it from the historical point of view or a legal point of view or the health point of view, you can certainly have other people who are scholars in the area teach the course.

ANNA MARIA TREMONTI: He is an indigenous scholar who designed a university course on residential schools but he does not speak for everyone. After news that a nonindigenous professor will be teaching a course on residential schools at a Halifax University, the debate has begun pitting issues of academic freedom against concerns around sensitivity and reconciliation. While the university along with its indigenous and non-indigenous profs stands firmly behind its professor. In a moment we'll hear conflicting views and passionate opinions. And then Ron Rosenes is edging towards 71. He never thought he'd see the day.

SOUNDCLIP

I had a big birthday celebrations for each of the decades that I never expected to see. And now I kind of calm that down, I said 'folks you know these birthday parties are- They're going to kill me'.

AMT: He was diagnosed with HIV decades ago when treatment was still in the early stages when so many others died of AIDS. Now he's among the very first cohort of Canadians living with HIV into old age, facing new medical complexities and financial and social realities. We're going to take a deep dive into the research on this; what we're learning, what we still need to know starting in half an hour and then we'll broaden that discussion.

SOUNDCLIP

We just haven't taken seriously enough the reality that the virus still haunts us.

Stephen Lewis will take us through the global reality of HIV AIDS where millions are still diagnosed but half of them get no treatment. Stephen Lewis joins me in just over an hour. I'm Anna Maria Tremonti. This is The Current.

Back To Top »

Halifax university's decision to hire white prof for residential schools course ignites controversy

Guests: Mark Mercer, Patricia Doyle-Bedwell, Rinaldo Wallcot

SOUNDCLIP

I got frightened when I was little girl, when the principal used to beat up the [unintelligible]. They used to call it bench party and it was usually done after supper. That why I got frightened, because I saw blood.

AMT: That was Alice Little Deer recalling her time at a residential school. She was speaking in that clip in 2015, the year Truth and Reconciliation Commission released its 94 recommendations. Key among them was education, that all Canadians hear stories such as hers. But this week at Mount Saint Vincent University in Halifax the question of who can share those stories and teach their lessons came up for debate. An upcoming course on residential schools was called out by critics for being taught by a non-indigenous scholar. After hearing concerns that the subject should only be taught by Indigenous people with the lived experience to understand the era and its impacts, the school held a meeting. It decided to stand by the instructor historian Martha Walls who had developed the course and it released a statement that says in part: "Indigenous faculty and staff at the Mount believe the true allies committed to honest reconciliation, like Dr. Walls, must be engaged in sharing knowledge of First Nations Canadian history in order to reach all those in education who should be reached with this important information". While all this has opened up broader questions about racial and gender identity and representation in academia we have three guests ready to take on the issues raised by what's happened at Mount Saint Vincent University. Patricia Doyle-Bedwell is Mi'Kmaq. She is a Dalhousie University Professor of Indigenous Studies. She joins us from our Halifax studio. Mark Mercer is a professor of philosophy at St Mary's University in Halifax and president of the Society for academic freedom and scholarship. He is also in our Halifax studio and Rinaldo Walcott is a professor of sociology and the head of the Women and Gender Studies Department at the University of Toronto. He's with me in our Toronto studio. Hello everyone welcome.

MARK MERCER: Good morning.

RINALDO WALLCOT: Good morning.

PATRICIA DOYLE-BEDWELL: Thank you for having us.

AMT: I want to go around once briefly with your initial reactions to the choices made by Mount St. Vincent and then we'll pick it up from there. So Patricia Doyle-Bedwell you start.

PATRICIA DOYLE-BEDWELL: Hi good morning thank you for having me. My initial reaction to the story of having a nonindigenous professor teach that course was concern at first. And the reason I was concerned is because there's also the issue of the lived experience of people from residential school, the need for indigenization of the academy, the need for reconciliation. I thought in some ways that you know I think it's a good idea that they're teaching the course. But I was hoping that there would be Indigenous faculty involved in that process.

AMT: Mark Mercer your initial reaction.

MARK MERCER: Well my initial reaction was surprise that Mount Saint Vincent University didn't immediately say they support and respect the collegial process by which Mount St. Vincent creates a timetable and stuffs courses. And it also seems to have left the impression that that meeting was something like a referendum on who was to teach the course. But there's no mechanisms for academic vice presidents to remove people who have been assigned courses in the appropriate way.

AMT: Rinaldo Walcott

RINALDO WALLCOT: So I was not surprised that it caused a stir. At the same time I think that these are really complex issues so it all depends on what the pedagogical to Professor. It depends upon the materials that the professor intends to teach and it depends upon the subjects from which the professor intends to teach the course. So I didn't have a fundamental problem that a non-indigenous person might teach a course on residential schools and reconciliations. The question then becomes how are they going to teach it.

AMT: Okay, I want to pick up on what you're saying there. Patty Doyle-Bedwell first of all you've taught courses on residential schools.

PATRICIA DOYLE-BEDWELL: Yes I have. And I'm not a single focused course but in my Indigenous Studies course we certainly cover residential schools.

AMT: And you incorporate the lived experience; tell us a little bit more about that.

PATRICIA DOYLE-BEDWELL: Well one of the things that I like to do, we use the truth and reconciliation report which has the lived experiences of many of the survivors, the history, the need for reconciliation, the calls to action. So we review all of those issues and it's a very difficult process in some ways for some of our students to go through some of those issues because sometimes they didn't know what had happened in the residential school. So it's important in my class to have support for our students as are muddling through all of this and it's a huge report. It's a lot of issues involved and I usually have an elder. Last year I had an elder attend my class with me and worked with the students. And that's how we approach it. And I think that it's really important to how those supports available.

AMT: And you are a mother was in a residential school. How does that affect how you teach?

PATRICIA DOYLE-BEDWELL: Yes. Well I think it affects my teaching. And also my research interests because you know way back in the day with my mom talking about residential schools was something that I felt I didn't know enough about. It's something that I didn't really understand when I was younger. And as I started doing research and working with my family I wanted to explore more of those issues. And so it really set me on a path of exploring those issues around residential school not just the legal or political or policy framework that incorporated them, but also the lived experience of people and the impact on the community. Because certainly Justice Sinclair said that the residential school system was cultural genocide. And when you start looking at the issue the legal framework of residential schools and you can see how the policies and legal framework were aimed specifically at Community and Family spirituality culture and language and the need to eradicate those.

AMT: Well Martha Walls has said she will be bringing elders into the classroom to speak about their experiences. Why as a non-indigenous scholar would that not be good enough then?

PATRICIA DOYLE-BEDWELL: Well I think that as we're moving towards reconciliation and looking at the calls to action there are a lot of things that we're going to have to start looking at. And so having allies teach and having the support of the Mi'Kmaq community I think it's really important. And I think we're going to see that in university. It's a process changing so when we have a course on Indigenous issues and Indigenous studies the need to have more people in this area, because this is our traditional territory all the universities are situated within our traditional territory, when we're teaching our truth and lived experience and culture, spirituality, philosophies, we need to have input from the Mi'Kmaq community. Right now there's not really a mechanism for that within the formal structure, governing structure of a university. So one of the things that we're looking at is including Mi'Kmaq community members elders and to work closely with allies and other indigenous professors.

AMT: But that was the issue. The issue is that she's not indigenous. So it wasn't about who she brought into the class that was the problem.

PATRICIA DOYLE-BEDWELL: Well I think that the best- What happened at the beginning was that there was the idea that she was teaching a course on her own. There was no input from the community and I think that's what really upset people. And then later on the Mount St. Vincent meeting, from what I understand she has supported the indigenous faculty at the Mount and also from community research from people in the Mi'Kmaq community. So at this point in time given our limited resources the fact that we don't have indigenous professors in every single faculty and every single university in the Atlantic, I think that part of reconciliation and I've always said this is the responsibility of everyone. And so we all have to work together to do that. So it's not the best situation but I know that she's a historian. She has those qualifications. The fact that she's willing to work closely with community members and other indigenous faculty has somewhat mitigated the initial I think outrage of the community. And so the fact that they're Mi'Kmaq people involved, indigenous faculty members makes a difference. And I think that in the long run what we're hoping for is to have Indigenous faculty members. We need more of them, there's no question about it, to teach these courses and in the meantime you know allies have always been important.

AMT: So let's bring Mark Mercer here because Mark you made a couple of points. One is that you didn't like the school going back and forth on this but what do you think of what Patty's saying there?

MARK MERCER: Well Patty talks about our truth and I worry about that. I think university is a place for a dispassionate inquiry, a disputatious inquiry. I think that the course is a course in the history of a phenomenon and it should be taught by someone who is both a skilled teacher and knowledgeable in that area.

AMT: And you called your society for academic freedom and scholarship actually wrote to the university and called the idea that only indigenous professors should teach indigenous courses false and pernicious.

AMT: Yes that's true.

MARK MERCER: What are you saying? Well who should teach the courses? I think up to the departments, the academic units. The academic units set the timetable and appoint the professors and then it goes through a quick review process and I think that's how it should be. If a nonindigenous person wishes to teach a course and has the support of the department in doing so then the academic vice president signs off on that and that's How it is. The perniciousness is the idea that a subject matter or history or whatever belongs to a people. No it doesn't. It's a matter for people who are interested in the topic to investigate, to try to understand, to convey their understanding and theses and arguments and for those theses and arguments to be criticized by other people who wish to understand it. That's the academic process.

AMT: Rinaldo Walcott.

RINALDO WALLCOT: Well universities are anything but places of dispassionate debate. The reality is that universities are places of highly biased debate and what we see incidences like this is that we're really talking about Patty was hinting at this. We're talking about access to resources and particularly human resources. So in a contemporary Canadian Academy where black and indigenous peoples are a small number of black and indigenous professors we will have these kinds of flare ups. And one of the things that we have to think about as well is the pedagogy that people who are not from those communities are using it to teach the material. And then in terms of thinking about the pedagogy also what connections they have to communities? How are they using their position inside the university to create spaces for, for instance, black and indigenous students to become professors, to go to graduate school to become professors and to enter the academy so that they can do that work as well?

AMT: So are you saying we wouldn't even be having this discussion if we had more indigenous and black and white people who are non-white professors.

RINALDO WALLCOT: Most definitely we probably would not be having this debate. And Patty hinted to that Patty said out at the Atlanta side that there are very few indigenous professors in all of the universities. So this is part of what are getting that, that there is a way in which a university reproduces itself and it reproduces itself as white and it reproduces itself as a kind of white authority that has the ability to speak research and speak on behalf of others. And so as we think about diversifying the Academy what do we need to be able to account for is the range of people who can come into the academy and teach from a range of pedagogies and a range of perspectives and that's why we have these kind of conflicts at this moment.

AMT: Mark what do you think of what Rinaldo is saying?

MARK MERCER: Well a range of pedagogies, a range of perspectives this is wonderful. Absolutely. Let's work our universities so that as many voices that wish to be heard can be heard. All in favor of that. I'm worried about what I take to be- You have to tell me, Rinaldo, are you looking for oversight and control of these things? Did you want there to be a committee or some group that looks at the pedagogies and the ways professors are teaching courses and says yes or no?

RINALDO WALLCOT: Well Mark let's be honest. In universities we have things such as curriculum committees that do look at universities that do overseas what we propose to teach. We have things like course evaluations in which the chair of the department might have you come into the office and talk about your evaluations. We have to stop producing these myths about the universities of these places of unfettered on check life where the individual rugged professor comes in and just teaches whatever they want to teach. We are also trained in areas of pedagogy and research and teach from those places. So I can't just wake up tomorrow and say that I'm going to teach a course on genetics, people would think that I'm crazy.

MARK MERCER: Well I would [unintelligible] to be fewer of these mechanisms that you mentioned. And I'm worried that you're asking for more.

RINALDO WALLCOT: I'm not asking for more, I'm asking for us to recognize the way in which the contemporary university already works which is to reproduce a particular kind of white authority and that's in particular why we have these conflicts because some of us who've now entered the university are challenging that white authority and we are also saying that there must be more of us in the last decade. Black professors in the Canadian system have hardly moved in terms of numbers entering. And yet we know in the humanities and social sciences that we've been producing black Ph.D. So there's something in the university that's keeping them out from being in our classrooms teaching and researching.

AMT: Rinaldo okay you had women in gender studies there would be some who argue that only women should teach Women's Studies.

RINALDO WALLCOT: Well I actually don't teach women's studies I teach gender studies and gender doesn't just belong to women. It belongs to men too.

AMT: So why is it there?

RINALDO WALLCOT: Is the evolution of the name of the department, it started all those women's studies as women's studies program and so on. But the reality is that this is not simply about who gets to teach what. It's also about the ways in which the university has produced a notion of itself in terms of who gets to be the authority. And that's what's really being challenged here.

AMT: I have a clip Mi'Kmaq that I'd like to play. This is Sherry Pictou a professor at Mount Saint Vincent who spoke in support of Martha was telling CBC News that the work of decolonization should not only quote fall on the backs and labor of Indigenous academics. Actually don't have a clip of her but that's what she said. What do you think that Patty?

PATRICIA DOYLE-BEDWELL: Understand what she's saying. I mean I think as we move towards the process of implementing the Truth and Reconciliation calls to action the need for decolonizing the university and what does that mean. And all of us are have and I'm the co-chair of the Steering Committee on Indigenous Issues at Dalhousie so we all recognize that we have a responsibility to make this happen. And as a Mi'Kmaq faculty member I know that a lot of the work and labor would fall on us to do that work. I'm even trying to ensure that all of us are involved in this process. So I understand what she's saying and the idea of decolonizing the university to make a space for indigenous faculty students and staff and also pedagogic curriculum indigenous knowledge is going to take a long time because there are entrenched ways of looking at knowledge creation knowledge generation within a university. For instance you have to have a Ph.D. in a particular area in order to teach at a university. So to try to get elders involved in teaching means looking at those processes where people are so-called I call it vetted to teach. And I know that in my own experience that need to knock down that barrier wall to access to postsecondary education has been something that I've been involved in my whole career. So yes we need allies we need support. And I don't think it's just a simple matter of changing a course or adding something. It's looking at the whole process. For instance academic freedom is something that you know we need to look at hiring processes that need to have alternative ways of knowing indigenous knowledge all of that. So we all have to be involved in that.

AMT: So Mark Mercer, this is a bigger discussion about even how our universities are set up. What are you saying?

MARK MERCER: Well there are a number of things I hope I'm happy for a plurality of institutions of higher education, that would be wonderful. But I do want there to be a solid core of academically sound, academically rigorous universities. Now that doesn't mean that there are some topics privileged over others is that the [unintelligible] at collegially determines courses and curricula. The argumentative essay is front and center maybe not the only means of communication and scholarship. The argumentative essay is front and center of the critical discussion in the seminar. All of those things I want to retain them.

AMT: We're almost out of time I want Ronaldo to speak to that and I'm sorry we're almost out of time.

RINALDO WALLCOT: So fundamentally I don't disagree with where are you headed Marc. But I think what we're missing is that you're missing the point that the universities in the moment of change and that that moment of change comes that the Authority has done all of the things is being questioned. And as more of us enter we bring to the universe the other ways of thinking research and teaching that the university now has to find a way to live.

AMT: We have to leave it there. Thank you all of you for being part of this.

GUESTS: Thank you Anna Maria. Thank you. Thank you.

AMT: Patricia Doyle-Bedwell, Mi'kmaq and a Dalhousie University Prof of Indigenous Studies. Mark Mercer professor of philosophy at St. Mary's University president of the Society for academic freedom and scholarship. They're both in Halifax. Ronaldo Walcott is a professor of sociology and head of the women and gender studies department at the University of Toronto, here in Toronto let us know what you think. Tweet us @TheCurrentCBC. Find us on Facebook. Go to our Web site cbc.ca/thecurrent and stay with us right after the news we're talking about a new cohort of Canadians living into old age with HIV. This is The Current.

Back To Top »

Aging with HIV: Survivors have outlived expectations, but still face stigma and uncertainty

Guests: Ron Rosenes, Julian Falutz, Kate Murzin

SOUNDCLIP

Just sitting comfortably, feet on the floor, take a deep breath in and breathing out.

AMT: You're listening to a weekly gathering of about a dozen men. They are all older. They're all gay and all HIV positive and all gathered in a quiet circle in a room upstairs at Vancouver's Dr. Peters center. This group was started to help meet the needs of men aging with HIV, something that not long ago may have sounded like an oxymoron. But everyone here is over 50 and thanks to advances and treatments Many will live long and healthy lives for years to come. After the relaxation and stretching exercises the men move into different rooms for activities. Some got a workout in a gym. Others head to an art room. Six head into a music room and pull out their instruments.

SOUNDCLIP

VOICE 1: What we are going to do today is we are going to go for that other book. but we only have the first 11 pages and I gave it to you last week. [To producer]

VOICE 2: My name is Akan and I have been coming here to the Dr. Peter center since last summer I think. It was a long time ago. The first person to greet me at the door was Randy, here.

VOICE 3: My name was Randy Miller and I am a clinical councillor. I've been here at the Dr. Peter center for eight years.

[Teacher giving instructions and sound of instrument play]

VOICE 2: I chose a recorder because it's really cheap to get into and you can make really nice music with it.

[Teacher giving instructions and sound of instrument play]

VOICE 3: This is a first step, the Wednesday evening, to give gay aging men a place to calm and feel safe but you're isolated and remain connected. You know there are really years and have a very longstanding history. Together they have experienced several things.

[Teacher giving instructions and sound of instrument playing]

VOICE 2: Speaking of Beijing I just turned 71 actually on Sunday. We were the first peoples that actually survived it because I was diagnosed in the middle of 1987. There are so few people who were diagnosed even earlier than me but not as many.

[Instruments playing in the back ground]

VOICE 2: We are really enjoying our lives. And this is just a part of it, it adds that extra dimension where we can share with other people. Now we have a few other friends but not that many. So many of them - all of our friends have died. I know about a thousand people because I was involved with all kinds of groups. Like going through a war, so many people died. So this is sort of like coming to the other end of that. We are still surviving. We're alive and we knew that if we're going to live we've got to take our medicine and we've got to do everything possible to look after our health, and that includes emotional social mental physical. There's a whole spectrum. I think if we'd had all our friends go we'd be surrounded by social events all the time but it's actually gotten quite lonely first because everybody's died. So this is feeling a huge thing because these are the survivors and these are the people who actually are doing the very best to look after themselves.

[Instructor counting and instruments playing]

VOICE 3: When I'm feeling down I start playing that recorder, all my problems go away. You know we have a good time. It's the highlight of my week to be honest but I leave with this rush of energy, because the lived experience just being with that is quite remarkable and touching it is inspiration.

[Instructor talking to group]

VOICE 2: We want to live to be a 100. There's no question we're going to do it if it's in our power or we're definitely going to do it because we've got so much to live for. I mean first of all we want to learn the recorder but there's so many other things we enjoy life so much. I've often said I can imagine being any happier than I am now. I mean what a blessing. I feel very privileged to be here.

VOICE 3: We all sit together for dinner at one table a quarter after five and that's the greatest piece for everybody to have that communal table because a lot of folks don’t have that opportunity or haven't in a very long time.

VOICE 2: You get to sit around the dining table like home when I was a kid because it was four boys or so that's the same feeling. Well this is all very nourishing for the body and the soul.

AMT: Well about half the people with HIV in Canada are now over the age of 50. Researchers still in the early stages for what effects HIV has as people get older and those living with the diagnosis are stepping in to help scientists and doctors sort out a complex web of cause and effect. The effects on health care psychological economic and they're still tied to painful stigmas after so many years. We have three people with us to talk about the complexities that ageing with HIV. Ron Rosenes has been living with HIV for going on for decades. He's a community health advocate and a researcher Kate Murzin is the HIV and ageing specialist yet realize that's an organization that works on rehabilitation for people living with HIV. They're both with me in our Toronto studio and from Montreal are we're joined by Dr. Julie in flute's who is a geriatrician and the director of the Comprehensive HIV Ageing Initiative at the McGill University Health Center. Hello to all of you. Ron, let's start with you. You listen to that group in Vancouver can you relate to that experience of living so many of your friends?

RON ROSENES: I can absolutely relate to it because it's very similar to my own situation. I had a confirming diagnosis in 1987 but I knew that I had acquired HIV in the late 1970s some trips to New York living life as young gay men and taking risks that I did not know at the time would lead to HIV. So I've been both a survivor and now a witness really to the phenomenal advances that have been made in HIV over the last 30-35 years and being a witness means that I've been witness to the loss of a great many friends but I've also been witness to the phenomenal medical advances that we've made in a relatively short period of time.

AMT: So has your health these days?

RON ROSENES: it's pretty good. I seemed to be living long enough to get the same crap as everybody else which is kind of ironic and especially given the nature of the work that we are doing which is trying to untangle the complex web that you referred to, and understand why so many people are facing a number of problems with their health. That when we compare them to people in the general population seem to be more numerous and also occurring in many cases at a younger age. So it's a very tangled web and a lot of it has to do with length of diagnosis, time on drugs and low points in our immune system and how that can impact

AMT: How old are you?

RON ROSENES: I am going to turn 71 this summer.

AMT: And do you have health issues right now that you can trace back to HIV?

RON ROSENES: It's challenging for me sometimes to draw a straight line but I've had open heart surgery and prostate cancer and one of the things that I read just this week is that the number of cancers that we've seen in the early days and the type of cancer we've seen in the early days of HIV is beginning to shift. We saw a lot of lymphoma in the early days and now it looks like there will be a greater prevalence of lung cancer for example and prostate. So sometimes I can draw a straight line and many times I can actually point a finger at the HIV. I think we also have to look as always at family history for example.

AMT: Julian Falutz what do we know at this point about what effects HIV has on people as they age?

JULIAN FALUTZ: Well I fully agree with what Ryan has said in terms of his experience and some of the ageing related complications that are now occurring, ten, maybe fifteen years earlier and people whose immune system is well controlled with the medications that are available. But what we're seeing is these diseases that [unintelligible] ageing occurring earlier, and there are some of them are related to HIV which even though it's controlled may still linger in the body to a certain extent, and may act as a stimulus for some of these conditions such as lung cancer such as heart disease, bone problems, osteoporosis for example, liver problems. It's a complex web again as Ron said it has to do with your lifestyle risk factors clearly cigarette smoking as a risk factor for lung cancer and for heart disease. So there's many cofactors that go into determining what happens to an individual in terms of their health status.

AMT: So can I ask you, do you have to separate things like how much have like sort of years of HIV drugs had an effect on someone later in life or how much has just living with HIV had on them, living longer. Can you separate those two or do you know yet is that what you're looking at?

JULIAN FALUTZ: Well, it's sometimes difficult because everybody has their own unique HIV history if you will in terms of how long ago they were diagnosed when they started the medications. Many of the medications that we were using in the late 80s during the early 90s were not as not nearly as effective as the drugs that we have today and how what impact they had in controlling their immune system also plays into it how long you've been exposed to HIV, what your other lifestyle factors are, for example. All of these go into it and it's often difficult to tease apart. But as Ron mentioned the worse off your immune system was before you started effective HIV therapy generally that may put you at higher risk for developing some of these more typical aging related complications. Even if your immune system and your HIV is well controlled with the currently available drugs.

RON ROSENES: And again you're saying it could happen sooner these aging does can happen. Sure. I mean many of the conditions as I said occur a little bit earlier. We're still trying to piece that apart in terms of what you know what are the risk factors for some of these conditions occurring earlier. How you can prevent them. There are many things that we can do to prevent these complications occurring and having a an early HIV diagnosis if you're at risk and starting medications as soon as possible is one way in which you can control your control the HIV virus, control your immune system. And let's say delay developing some of these age aging related complications.

KATE MURZIN: Kate Murzin HIV and AIDS is to be seen as fatal. How do you view it now. Well I think in the HIV community we really look at it as a chronic condition at this point. But I think that there's some discrepancy still about who sees it as a chronic illness. And if we look at policy for example on chronic illness in Canada we don't see HIV represented in that with policy which means the needs of people dealing with HIV are relatively invisible in terms of their ongoing care treatment and support. And so even though they may require the same types of chronic disease management like interdisciplinary health care teams, self-management strategies like exercise, help with their diet etc.. We don't see that actually being a target of policymakers or health care providers.

AMT: Can you compare to - in terms of those needs - like a different illness that is chronic that people would actually get help for.

KATE MURZIN: Yes for sure. So with something like diabetes for example people need to take their insulin every day they need to manage their diet. They may have complications of their diabetes in terms of eye problems or circulation issues. In HIV we see much of the same so people may encounter functional impairments in their ability to participate for we may be impacted by their by their HIV as one mentum but also by aging, by other chronic conditions that they may be wearing. But seeming they take their HIV medicine every day. Exercise is just as important to them as it is to someone with diabetes. And essentially the big difference is that people living with HIV and aging with HIV to experience a vast amount of stigma out is problematic in terms of accessing some of these chronic disease management support.

AMT: And I want to talk about stigma in a minute but just keep some of the other issues aiding. Ron. There must have been a time when you thought you would never hit this stage.

RON ROSENES: That's absolutely true. I had big birthday celebrations for each of the decades that I never expected to see. And now I've kind of calmed down I said folks you know these birthday parties are going to kill me. So I have to slow down the pace and you know I will see what happens if and when I reach 75. But you know you asked me earlier how my health is and generally I am a well-supported person. I have excellent you know social contacts and social life and lots of work keeps me very interested and engaged. I realise I am a little bit unusual that way perhaps compared to others. I'm still working as a consultant. I love the research and I am quite optimistic about the next 10 years.

AMT: And you're working now with medical researchers to try to actually track how this affects somebody like you. Because you think you want to. One of the top surviving people are you know not?

AMT: Like I am one of those longer surviving people there is no question about that but Im certainly not alone in as I am fond of saying it's not a competition either. But some of the research that I'm involved in these days that I find very interesting relates to human papillomavirus HPV that somebody that we see in the general population as well. Am always interested in comparing what's going on at a population level with people with HIV. Because every individual story is different but when we do the research and see things at a population level then we can really see some interesting trends. So we know that we need to look into the potential for HPV virus to cause anal cancers in men who have sex with men at a much higher rate of incidence and prevalence compared to the general population. I am also very interested in interventions that will be part of research that all of us on the call are involved in. A big CIHR funded team which will really enable us to set up cohorts in follow up people living at different decades of life over the age of 50 to see what resilience looks like in our in our population. So not just the deficits are where the problems are but what people are doing to live successfully and to help people like Julian diagnose frailty at an earlier age. We really need medical in our health care professionals now increasingly to view us as whole people. They used to really view us specifically through the lens of Barry [unintelligible] but now that we are growing older and having all these other problems we need to head them off at the pass and understand that these things can occur chronologically a much younger age so we want to be sure that were dealing with these problems when they're causing functional problems and not necessarily just looking for them at a certain age.

AMT: So Julian Falutz what are you on the lookout for?

JULIAN FALUTZ: Well again I support what Ron said. It's a very real description of the situation. So I mentioned earlier that we're seeing some specific diseases occurring earlier but a little bit more worrisome is that we're seeing geriatric what we refer to as geriatric syndromes which are not specific conditions but they include what Ron just mentioned this frailty. We're seeing people who fall, we're seeing some cognitive problems not dementia but minor cognitive changes, were seeing your process again geriatric conditions geriatric syndromes also occurring earlier and this is what we're trying to learn more about. Make people aware that they occur because there are multifactorial conditions which can certainly have the quality of life can affect overall functional ability with significant impact certainly in people who may be socially isolated which is a very important problem and in order HIV patients. And so we're trying to sort of understand the range of not only specific medical conditions but various geriatric conditions that also occur in individuals with HIV who as you mentioned the beginning of the program most the majority of people in Canada with HIV are now over 50 and we know that their survival is overall about the 90 percent of the general population but an increasing minority of individuals were seeing that long term survival may well be the same as in the general populations. But some health conditions such as you know we we've mentioned may be occurring early.

KATE MURZIN: Kate Murzin and you actually go through the medical research on HIV and aging and make it into layman's terms to talk to the people that you work with. So what are you able to tell them about what to expect. So often I'm actually working with health care providers and trying to take the research and put it in to what does this mean for everyday care and support. So often I'm working with personal support workers in home care in long term care but also with community members and people ageing with HIV themselves. And I think the important thing that I try to communicate as Julian mentioned earlier is that each person's situation is going to look a little bit different. What we know from the research is overall prevalence of certain comorbidity of certain geriatric syndromes. And we know what kinds of social factors also impact the lives of people ageing with HIV. For each person the combination of those factors will look different and I think there is a lot of fear among people ageing with HIV about the research that's coming out. And am I going to get every single one of these comorbidity that my at increased risk of all of these terrible ageing related conditions and when I tried to make clear is that no one person is going to get all of those conditions. And were we can intervene and make positive changes to prevent things from happening. We do and we're getting better at that through the research.

AMT: Well that's a good cue for me to go back to our group in Vancouver right next to the music studio where we left off, there's a small gym where Jarney one of the members of the over 50 group is working with a trainer.

SOUNDCLIP

[Noise]

VOICE 1: I'm trying to lose a few pounds as ever is just too tight my days to work out for the purpose so I'm building up muscle. I'm so much interested in my total time that I want to tell the game changer for me.

VOICE 1: Total game changer I was isolating way too much and I wasn't so depressed. That's my self-diagnosis. But I just thought I couldn't know this one I would start talking to people strangers or even my doctors and nurses who even I know them well I just might have discussions. Conversation skills were starting to slip and a bit of a talker you know disappearance conversation skills that being too much so and I know the TV sketch or virtual Well I applied to any place that encourages these groups places for us to go eat and socialize. Those are the two big things that I can do that at home. I can eat at home but I can socialise at home. I [unintelligible] to myself so It's wonderful. So I can feel it working is okay.

AMT: Well Ron Rosenes is your study as well. Are you your inner looking at physical fitness. What are you doing?

AMT: 'I'm up or just have been in a study looking at the benefits of exercise among people with HIV and it's a great study. It's all about 120 people here through the University of Toronto and we have memberships at the Y, Fidbit and best of all personal trainers and everyone gets the same interventions, so we'll be comparing the results or a two year period between and among all of us looking at the benefits of exercise which are mouldable they're very very helpful obviously for heart health for and for strengthening muscle as we know in the general population but we're also interested to look at the effect and the positive effect we hope on cognitive function and also on depression. So we you know rates of smoking and rates of depression among people with HIV we find a much higher than in the general population and certainly there is increasingly research to show that exercise is better than a Statten drug.

AMT: You keep just tugging on that table but isolation as well. And you mentioned stigma and you work as you pointed out with health care professionals. Do you find they're still sitting right even among health care professionals when it comes to people living with HIV?

KATE MURZIN: So I think that there are definitely still misunderstandings and kind of deviant conceptions of what it's like to be a person living with HIV. And so a lot of the misconceptions still exist about risk to health care providers working with people ageing with HIV especially in long term care and home care settings where people are really intimately providing personal care. I mean that's one of the things that I really really try to stress first and foremost is that there is no risk whatsoever in providing personal care and support to someone dealing with HIV. And because of the losses that we spoke about in the earlier part of today's chat, people living with HIV in dealing with HIV do tend to be isolated and having the knowledge that they can have home care providers come in, that they could access [unintelligible] related community support is really important. But there is a lot of fear and entice repeated stigma that when they try to access those services they'll experience discrimination either from the providers themselves or even from other residents or other or other adults who are accessing those programs. And so one of the things that I'm encouraging not only for the providers to be aware that they are not personally vulnerable to EJB infection by providing this support is that they really need to work on creating safe environment in these aging care settings so that people can know that they can access those services with no stigma and discrimination from other older adults who may not really understand much about each other or understand how turns transmitted.

AMT: I want to ask about something else. Ron Rosenes, can we talk about sex. We can always talk about sex?

RON ROSENES: I mean part of what Kate is saying you know is the importance of having safe environments not just to reduce stigma but also to enable people to understand that older adults and not just people with HIV but older adults still have sex lives. And we have increasingly thanks to pharmaceutical advances in that area as well. Some drug that can help performance. So you know regardless of that people do want to have sex and we want to make sure that if as we age we end up in some form of a nursing home environment or long term care that people can be respectful of that specifically as it regards people with HIV. We also need to note you know that one in four diagnoses among older people is among older people with HIV.

AMT: that's right that's a statistic a lot of people don't understand.

RON ROSENES: It is so you know we're not just about care and treatment in our research we're also still about prevention and understanding that we have to work on across the Cascade if you will from prevention through all aspects of care treatment and support, that we are giving proper support to people and helping them to understand that they're still at risk of HIV in certain settings. So again this becomes a very complicated story of how we ensure that people who care for us in older age understand us as sexual beings but we're also still working right across the continuum to include prevention.

AMT: Okay so I've ask you about sex now I'm going to ask you about money. You were again you were somebody who did not expect to live this long and you are healthy and out in the world able to do things that you might not have thought you could do. Financially, did you have to shift for that? That was not your financial expectation.

RON ROSENES: No it wasn't. You know I had different types of work in the course of my life, everything from teaching to successful business, enabled me to gather some assets which form some savings today but there was a time when I was very dependent on long term disability insurance. So I was again very fortunate to have a private insurance policy but as I approach the age of 65 I realise that private insurance was going to weigh in and I would be depending on whatever savings I had and independent on CPP Canada Pension Plan which as people know does not provide a lot of money and can barely pay the rent. So I have managed to reinvent myself as a consultant and work for the Ministry of Health and support service organizations and help them with future planning and so on. So I've been lucky that way and I also have insisted that people working in community are as part of research teams are also remunerated for their efforts. Now again I advocate as I can but with the painful awareness that many many people had their work lives disrupted by HIV, and of course are now dependent on very few assets beyond the age of 65, other than what they get from CPP. So I have been advocating for such things as universal drug coverage to ensure that through the life course people are not out of pocket in order to access HIV treatment and also been advocating for programs that are now in pilot trials in a few places around guaranteed annual incomes. But we need to address this problem as a society and it's not going to be income just some people with HIV but in work we do call in with other poverty groups.

AMT: Julian Falutz this is another wrinkle in all of this, that people who did have their work lives disrupted and needed to be on long term disability or just could not actually function in the workforce because their struggles with HIV find themselves as they are older they are able to work but they have to be able to get work.

JULIAN FALUTZ: Which is a problem for many older people. And as you said particularly with HIV know people may have spent the last 20 years being physically unwell and it may only be the last 10 years or so that their health has sort of stabilized and they're able to get back into the workforce. Maybe now in their late 40s 50s etc. and they're finding it very very difficult for the usual reasons that older people have in finding jobs and particularly themselves they may have been out of the workforce they may need to be retrained and then they have the possibly the ongoing health issues as well as the stigma the social isolation and the financial constraints that Ryan and Kate have mentioned. So it's a very significant challenge to our ageing HIV patients Absolutely.

AMT: And that we've got some tape I'd like you to hear. A Positive Living BC is Western Canada's largest HIV AIDS service organization and this is this is a clip of Tom McCauley in Vancouver who is getting some help gearing up for a job search 25 years after he last had paying work. We caught up with him at the group's thrift shop.

SOUNDCLIP

We are in an outlet we called Polly and Astrix closet. Reason I would be coming in here right now is to look for a suit jacket something that is presentable to a business world because certainly I don't have the money to go buy a brand new suit. Oh well look at this one. That's lovely but... This is a whole transition I am going through now that I think unless I get hit by a bus tomorrow I've got another 30 or 40 years to go. But what do I do. Obviously, I'm well enough to come back and volunteer which is my test period for going back to work and now I have some confidence. I have my degree in fine arts and my degree in architecture which I've never been able to realise as a career. So my big hope is that I can somehow go back into design. It is a whole. Maybe that one. Are there some dress shoes? They needed a little bit of love and car. It's a bit polished but they'll do. My big fear is how do I manage my life and my health off of all of the systems that have been keeping me healthy and alive all these years and find a job that's got all the right benefits and protections for my health. Now I believe in my future because I am still alive and I have hope and I have dreams. I set goals so I now know which direction to move towards. So my big wisj is that I can contribute back in to society at this late stage in my life I am almost 60 years old. So that's another concern. I mean 60 is a hard age to consider going back and getting a job and I certainly don't want to start off in the bottom of the restaurant business anymore. So I'll probably be looking at something like consulting or some other means, and today's work environment is so vastly different than what it was 25 years ago. So can I even compete in a technology driven world like today.

AMT: Ron you want to say something.

RON ROSENES: You know Tommy is still caught in those years leading up to age 65 when some government benefits kick in and I am just struck by the challenges that people face as they try to re-enter a workforce where once again as we know from the Millennials that there are very few jobs with benefits anymore anywhere. So Tommy you mention consulting and that's what I've been able to do. But of course you know I have a few more benefits because I am over the age of 65 but for people between you know in the middle and not yet 65 the challenges are even more profound.

AMT: Kate is nodding her head. What impact do you see, Kate?

KATE MURZIN: Yes I think what's really sticking out to me about what the tape said and what Ryan is saying is is the intersection in between ageism and HIV stigma that people are caught in. And so going to their doctor and wanting to have a conversation about sexual health there is the implicit assumption that all people are asexual, going to their local HIV organisation to look for their peers or help around their HIV status, there may be no programming designed for older people or they might be sort of pushed to the side door or you know even ridicule by younger people saying you know that they are not significant. Their experiences are different. Things have changed and I think what Ron described as people being stuck in the middle is not having anywhere to go that focuses on all there are people living with HIV and there are specific and unique needs are in overcoming both ageism and HIV stigma.

AMT: Julian Falutz can I get your view on this. Many people think of HIV as something that is now manageable that barely causes health problems anymore. And we're just cheering like on so many levels, there are still things to consider and wonder about.

JULIAN FALUTZ: Well I think we do have to stress the fact that the vast majority of people who have access to the new medications are able to take them reliably are overall doing very well. What we've been talking about from a health from a medical perspective is that they have a somewhat increased risk of developing typical ageing related complications. So what we're focusing our research on is trying to identify what are the triggers for these? What are the risk factors for these? How can we identify them early? How can we implement preventive techniques which are not only just from a health perspective but from a societal perspective, from a functional perspective as Kate said? What are the individual supports that are out there that will help individuals to maintain not only good health but a good overall quality of life? When I said before that survival in many people is almost the same as in the general population, I think it's important to keep in mind is not just how long you live but how well you live and that's a very important issue and Ron mentioned at the beginning that there is going to be some important research starting across Canada looking at what are the predictors of successful ageing in older people living with HIV and I think that will help to identify many of the issues that we've focused on today.

AMT: Ron Rosenes, how easy is it to get attention for your HIV activism compared to the past?

RON ROSENES: It's harder in many ways but here I am sitting with you today and have an opportunity to be in front of Canadians, generally. And so it's an opportunity also for me to point out, very importantly, that among the many medical advances today we now know that any individual who is successfully treated with today's medications is no longer able to transmit the virus to their sexual partners. This is very important information so that people who have very low viral load and that is the vast majority of people who are successfully treated are no longer infectious. We also have the medication, one used for treatment now, that people who are at high risk of acquiring HIV can take to prevent HIV. So it's very important for people to know that when we talk about sex lives in older adults and all the work we're doing that we've never been at a period in time when we really know what we need to do to slow the rate of infections in this epidemic. So I am always happy to have an opportunity to talk about that.

AMT: We have to leave it there. Thank you all of you for being part of this discussion. Thank you. That is Ron Rosenes who has been living with HIV for almost four decades. He's a community health advocate and researcher. In our Toronto studio as well Kate Murzin the HIV and aging specialist at Realize, an organization that works on rehabilitation for people living with HIV. And then in Montreal Dr. Julian Falutz geriatrician and the director of the comprehensive HIV aging initiative at McGill University Health Center. I am Anna Maria Tremonti. This is The Current.

Back To Top »

Aging with HIV is an absent reality for Africa, says Stephen Lewis

Guest: Stephen Lewis

AMT: This is The Current on CBC Radio One, and a reminder, everything we talk about lives on podcast and online. Go to our website cbc.ca/thecurrent. Now of course not everyone living with HIV AIDS has the privilege of aging in Canada where treatment and services, though not perfect, stand in sharp contrast to those available in other parts of the world. Few people know this better than Stephen Lewis. He is the former UN secretary general's special envoy for HIV AIDS in Africa. He's the board chair of the foundation created in his name the Stephen Lewis Foundation. Its mission is to support community organisations working to treat and stop the spread of HIV AIDS in Canada and the foundation does that in many ways famously by linking grandmothers in African nations with Canadian grandmothers here. Stephen Lewis is also the co-founder, a co-director of AIDS Free World which is an active advocacy group based in New York City. And Stephen Lewis is in our Toronto studio. Hi welcome.

STEPHEN LEWIS: Hello Anna Maria.

AMT: What stood out for you as you listened to that last conversation?

STEPHEN LEWIS: Well if I can take a slight deviation, within Canada, one of the things that stood out for me is the fact that we don't talk about the very very difficult situation of indigenous peoples in northern Saskatchewan and northern Manitoba and the downtown east side of Vancouver, where the more sophisticated medical responses to ageing and HIV are nowhere apparent as they were discussed this morning. And so within Canada there is also a divide. But of course what stands out for me most vividly is the reality of a continent like Africa where the desperation still exists and where millions of people are still without treatment. And where ironically there is tremendous community strength which naturally comes together and supports each other. But there isn't the funding and there isn't the full support of governments to do the kinds of things that are being done in Canada.

AMT: And in fact there isn't the funding of that not even in terms of diagnosis and certainly the actual treatments. Give me an idea. First of all, how many people worldwide have HIV?

STEPHEN LEWIS: Worldwide there are probably between 37 and 38 million people living with the virus and about 20 million people are now in treatment. It's difficult to tell at any given moment in time but it's sure to say that there are over 15 million people who still require treatment.

AMT: Who don't get anything?

STEPHEN LEWIS: Who don't have it yet? And we're desperately trying to reach them.

AMT: And so what's the average life expectancy for someone in an African nation with HIV?

STEPHEN LEWIS: It varies greatly but probably not beyond the 50s and early 60s. It's been very difficult although it has been inching upwards over the last many years as more and more treatment is available and people are living longer obviously.

AMT: But a lot of people still die relatively.

STEPHEN LEWIS: Yes. About about a million deaths a year. The great majority in Africa in East and Southern Africa. And a couple of million of new infections a year. So we by no means overcome the reality of HIV although the world has to some extent lost interest.

AMT: And when you talk about new infections there are some troubling statistics on the number of people who actually get diagnosed.

STEPHEN LEWIS: Yes. Well there are many people who don't know they're HIV positive. And many people who don't come to a facility to be tested until the disease is quite advanced. So it's quite heartbreaking in a number of areas. And there are select populations Anna Maria who are particularly at risk. We've never been able to address women and girls and the reality of gender inequality as it relates to the virus successfully never. So there are thousands literally weakley of young women between 15 and 24 who are being infected. So obviously prevention has to be focused on. And there are what we call high risk groups. Target populations; men who have sex with men, sex workers, injecting drug users, prison populations where the rates are abnormally high. The rates are going up more in the world, in Eastern Europe and Russia than anywhere else at the moment. So there are these disparities which must be addressed.

AMT: And I was reading that tuberculosis sometimes plays a role in all of this. People who are HIV positive are very vulnerable to this.

STEPHEN LEWIS: Yes. Tuberculosis is the most dramatic what we call opportunistic infection with people living with HIV. And it's the greatest single killer of people who die of AIDS. And there is co-morbidity faction and there are these are - tuberculosis and HIV - is particularly present ko infection rates in South Africa.

STEPHEN LEWIS: So what are the barriers to getting treatment? We're talking about a lot of countries but where are the barriers the greatest. Well this is a trifle arcane but the single greatest barrier continues to be funding. There's a terrible funding problem, Anna Maria, which the world is largely not recognizing. The Global Fund on AIDS Tuberculosis and Malaria is the primary funder for many countries in the world that are desperately in need. But the Global Fund never asks for sufficient money and their replenishment conferences. So we're always running short the other very big factor is something called PEPFAR which is the presidential initiative in the United States. And because of Trump constantly trying to scale back money for sexual and reproductive health and for responses to communicable diseases generally, there are many organizations on the ground that are beginning to feel the pinch. And other governments that are normally generous are taking the lead from the insistence of the United States that they don't want to fund these areas and they're scaling back. So in my foundation if I can be personal for a moment we're receiving something like 100 proposals a month. Small community groups which keep lifes together desperate because their funding is being withdrawn from large organized by large organizations and they turn to the foundation and elsewhere. But there's no way of compensating for what the Americans give, or the British, or the French, or the Germans etc. or the Nordics. It's a painful reality and I'm not sure how we're going to overcome it.

AMT: And it's been declining. it's not getting the attention that it got.

STEPHEN LEWIS: The international funding dropped by 7 percent between 19 15 and 16. We don't know between 16 and 17 yet but I doubt that it went up most of the funding is now coming within the low and middle income countries. They are generating from their own budgets funding but they they're aware of the concomitant development of other diseases of cancers and diabetes and hypertension and cardiovascular. And countries are beginning to get a little frantic about communicable and non-communicable diseases going after the same limited resources. So what is needed is a much more generous and careful and urgent response to HIV AIDS to malaria and tuberculosis. Tuberculosis is now the greatest single killer amongst infectious diseases in the world. More people die of TB and Malaria and Aids put together Anna Maria. So we have a real cauldron of perversity here.

AMT: And we heard a lot about stigma and isolation in last discussion. How much of an issue is stigma?

STEPHEN LEWIS: .Huge stigma is still intense there is still a very great difficulty even at the grassroots to overcome the sense of isolation that is imposed on people who are living with the virus sometimes imposed by themselves, sometimes by the community and the healthcare providers. I thought Kate really zeroed in on that intelligently. The health care providers are often themselves resistant and very unpleasant in dealing with people who are fighting the virus. So there is a tremendous prevention and education job which continues to need to be done. I don't want to diminish the extraordinary progress that's been made because obviously millions upon millions of people are alive who would otherwise be dead without the antiretroviral drugs and getting it to them. But what is important to note and it came out through your discussion with Ron and Kate and Julian is that is that as people age even, if it's only into their 50s, they have a lot of mental health issues, psychosocial issues, depression, post-traumatic distress. There are addiction issues. There are real issues which we are developing that have to be dealt with and that's tough.

AMT: And the frailties, that you know the point made that certain frailties that you would expect to see later show up earlier.

STEPHEN LEWIS: Yes there's the phenomenon of premature ageing which is everywhere evident and and is something that is quite worrisome because you are open to all of these opportunistic diseases.

AMT: I want to ask you in 2014, four years ago, mayors from around the world signed a declaration to end the AIDS epidemic by 2030. It was called the 90-90-90 targets. 90 per percent of people living with HIV would know of their status. 90 percent of those who know their status would be on antiretroviral treatments and 90 percent of those people would have suppressed viral loads which would keep them healthy and at less risk of transmitting infection and being able to go forward. Where is that target today?

STEPHEN LEWIS: Well actually that target it depends on the country that target is being achieved some countries like Botswana and Rwanda. And it's well on the way in other eastern and southern African countries but it is far from full achievement, particularly the 90 percent that are on their drugs and have a suppressed viral load. And what Ron said at the end of the conversation was really important that when your viral load has been reduced to undetectable levels then you do not transmit the virus. And there will be an unequivocal scientific paper released in Amsterdam at the International AIDS Conference in July this year saying exactly that. So we're moving towards the 90-90-90 but there are two targets, Anna Maria. There's a fast track initiative designed to get closer by 2020. We're not going to reach that. We're going to fall short but we will move. And by 2030 they say they hope the virus will be finished. Well you know of course everybody wants that to happen. It's a rhapsodic dream but we don't even know the consequences of the drugs down the road. The drugs really haven't been felt since until 1995 and it was well into the 2000s before we had the combined treatment. So all of the complications social and cultural and anthropological down the road let alone the reaction to the medicines themselves, we're all learning about and some of it will be welcome and some of it will be terrifying.

AMT: It's really important to keep talking about this. I think the point you made that even in Canada we have pockets, very identifiable pockets where still not enough has been done or it's just not being recognised.

STEPHEN LEWIS: Right.

AMT: Stephen Lewis thank you for coming in.

STEPHEN LEWIS: Thank you, Anna Maria.

AMT: Stephen Lewis is the board chair of the Stephen Lewis Foundation. He's the code director of AIDS Free World and he joined me in our Toronto studio. Let us know what you think of the conversation we've been having. If you are living with HIV into old age or older age let us know how it's working what you're thinking. If you see gaps in the system that you'd like us to take a look at, let us now. You can tweet us at the current CBC. Find us on Facebook. Send us an e-mail cbc.ca/thecurrent. Just click on the contact link. That's our program for today stay with Radio 1 for Q. With music from Glasgow Scotland by the synth pop band Churches. I'm Anna Maria Tremonti. Laura Lynch will be here tomorrow. Thank you for listening to The Current. [Music: Theme]

Back To Top »

Provide Transcript Feedback

CBC would like to acknowledge the support of the Broadcasting Accessibility Fund.

Full Episode Transcript for May 17, 2018

More Stories Like This