Jordan: If you are lucky enough to not have anyone in your life living with HIV, it may sometimes seem as if it has been all but cured, and if you believe a certain president than sure it will be, no problem.
News Clip: We will eradicate aids in America once and for all and we’re very close.
Jordan: As you might imagine, that is not really true. There is no cure very close or even really on the horizon, and while new drugs have delivered massive advancements in helping those with the virus live their lives, it’s still not easy. But Donald Trump’s clueless optimism is not that far from mainstream opinion. HIV and AIDS are simply not as large a part of the cultural conversation as the numbers of people living with them should make them. So we wondered why that was. What has shifted? Who has been left behind as the conversation moved? And who is out there right now trying to make a difference? And when you think of someone living with HIV, who do you picture? Because the answer starts there.
Jordan: I’m Jordan Heath Rawlings, and this is The Big Story. Molly Bannerman is the director of the women and HIV/AIDS initiative. Hi Molly.
Jordan: Eno Akan-Essien is the woman’s community development coordinator. Hi Eno.
Jordan: Thank you guys for joining us today. I wanted to start with where this discussion came from in our story meeting, which is how in the work you do, do you find HIV is reported on and treated by the mainstream media in general compared to the way it was even five or 10 years ago?
Eno: You know, we live in an era of reality TV, so people like things that are sensational, that are salacious, and make you think. HIV isn’t. It’s not cute, it’s not sensational, and it always invokes fear in the hearts of people because from most people living in Canada or even; ya I’ll say Canada or North America, their really awareness; HIV was really on everybody’s radar up to the eighties and then the early part of the nineties, where it became a thing that moved to Africa. You know, those little babies with those ads that you send money for? Yeah, but in this time and age, people have this kind of hysteria fear, but is it really here? It doesn’t really apply to me, so they have a kind of suspended reality with HIV. That’s for people who live here, who have lived here during those times that I mentioned. Now, if you’re talking about newer Canadians, it’s very different depending on where they’re coming from. Oh, yes, because their are countries where at the airport you see things that say AIDS is real, go get tested, use a condom, take care of yourself. So you see that person’s reality as they integrate into Canada is very different.
Jordan: It feels like we’ve kind of past that point where; Because I remember I was a teenager in the early nineties growing up, and there was a ton of just general awareness campaigns around it. And I feel like we internalize that and then just move past it.
Eno: Yes, exactly we moved on with our lives and we left people where they were, those that were directly affected or impacted by the reality of HIV, meaning those who are living with HIV, those who have lost loved ones to HIV, those who were involved in the movement, and those who work in that sector, in our sector, so to speak. But for the normal and mainstream Canadian, HIV is not so much on our radar unless there is somebody who was having sex, you know, that thing that nobody does. Somebody had sex, and somebody thought maybe the person; they found out the person was HIV positive. Oh, my goodness, it’s on the news, and we are, you know, this vector of disease has gone out and had sex because god forbid you have sex. That’s where we’re at.
Jordan: What is the scale of the problem, like now? Have those general awareness campaigns of the nineties and advances in medicine, have they materially reduced the number of Canadians living with HIV and AIDS, and sort of what is the scale of it in Canada now?
Eno: They have reduced greatly. I think one of the advances that I personally as an individual working in the sector, I’m proudest of is You equals You campaign.
Jordan: Tell me about it.
Eno: It means if a person is undetectable, meaning that they’re taking their HIV medication; Which I think a lot of people kind of know that if you take your HIV medication over time, your counts get better and you live better, so you know, you’re kind of better than somebody who isn’t, but what it means in scientific terms is that if a person is taking their medication continuously, they bring their CD four count to a place where they’re healthy, and they’re living just like everybody else. But what science has shown, and research has shown; and thank god for Google so you could check it out is that it’s untransmittable, so that person cannot transmit HIV to someone else. And for the longest time the scientific community kind of grappled with that because they felt, you know, if they’re back to that, then it would be a license for people to go out and have all kinds of unprotected sex and maybe, maybe, maybe because, you know, even if you look at the pack of a condom, it says 99.9%, so it’s kind of like that with HIV that 99%; Maybe that one point theoretical but in this case, it’s more as a prevention measure, we’re saying that if, you know, you know about prep, where if you take HIV medication as a preventative measure, you know, you reduce your chances drastically of acquiring HIV, so it’s kind of like that.
Jordan: Molly, one of the reasons we wanted to talk to your organization is because and I don’t know if you followed it, but we’ve certainly noticed a ton of research and reporting recently around the way scientific research in medicine is designed with men in mind. Um, and that’s been a huge thing over the last six months or so. How does that apply to your work and to how HIV and AIDS impact women?
Molly: Yeah, it’s a great question. I mean, if you look at the stats, 4 to 5 new diagnoses and 4 to 5 people living with HIV are men in Ontario so in lots of ways it makes sense that a lot of the media attention goes to that, A lot of interventions and treatment models focused primarily on that, but one of the things that the women in HIV AIDS Initiative is around for is to remind us that there are really specific realities that women are facing, and that those in many cases are different, and that we need to also focus on those if we’re going to reduce the rates of HIV amongst women and engage women in care and effective ways.
Jordan: Give me an example of one or two of those ways.
Molly: So, uh, if you look at the stats, we see a racial difference for one, um, the number of black women living with HIV is significantly more than black men. So of all women in Ontario living with HIV around 50% are African, Caribbean, and black women, and that number is much less amongst men. We also see that amongst indigenous populations that the number is disproportionately impacting women. So where we see the indigenous women make up; or indigenous people make up about 3% of the population we see the number at about 6% amongst indigenous women. So we see the numbers being really different, and we also know that women who are facing intimate partner violence or other forms of violence are more likely to be contracting HIV and also that women who are living with HIV have faced higher rates of violence than men, so we see those differences. We can also see differences in the economic income security of women. So women are more likely to be living in poverty, and women are also more likely to be reporting mental health struggles such as depression than men are. So those those are some of the concrete examples that show differences. In terms of in Ontario and beyond we talk about engagement and care, so when women are diagnosed, when women are engaged in treatment and care and then, as you know, I was talking about when women are virally suppressed. So those are sort of our markers of success of like, how are we doing in terms of engaging in treating HIV and knowing that women, when people are engaged in care, they’re less likely to transmit when their viral loads are suppressed, they’re less likely to transmit. So we also see; It’s not significant, but, um, some statistical differences in the ways that women are engaged in care on that sort of range of services.
Jordan: Where does that difference in terms of the rates of women of color in particular and indigenous women in particular, come from? Is it a lack of resources in the community? Is it something in the messaging? Do we know what’s to blame?
Emo: It’s a little bit of everything. It’s to understand that the systems that we live in, um, the; And this again it’s not really a way of calling out people or of pointing out failure, so to speak, it’s just talking about the gaps. You know, who has the facility to attend the physicians appointment? Who has the facility to address concerns, you know freely and to be heard for what they’re said, for what they’re beings; what they’re trying to portray and how they’re trying to to express themselves. Who has; A woman in rural Ontario does not have the same access as you would have here. A person who was newer would not have the same coverage as somebody who’s been here; Wouldn’t even know where to go, so access is not just having an O-hip card, it’s what you can do with a card. It’s like having $1000 but you don’t know, you don’t speak the language, so you can’t really spend it. That’s kind of what it is.
Jordan: You mentioned earlier that one of the successes is treatments that can make people undetectable, that can really lower viral loads. Is there a danger in the assumption that we can treat this now? That we’ve become really good at providing people the drugs that they need to live a normal life with HIV?
Emo: I think the danger in what we see is always people’s perception. You know, because HIV has so much stigma, it invokes a lot of stigma in different populations for different reasons. You know, in the beginning it was gay men, so it was easy to think it doesn’t concern m; If you’re religious person, you know, definitely that’s the reason, that’s why. As our understanding evolved, some of the stigma goes away but we remain who we are if we don’t make a conscious decision to change. So I think that would be a valid concern if condoms can cause pregnancy, that would make sense but it doesn’t because that’s not how human beings work. You know, it used to be when you would talk to young people about condoms their parents would say oh don’t tell them that because they’re gonna have sex. But if teenagers; People who have sex use condoms, then they don’t get pregnant they can, you know they can have a life. It’s kind of like that with HIV, if someone can take care of their health it’s not thinking that people who have HIV are these vectors of disease who want to harm people; Whose you know, the reason they became positive; As soon as they became positive, they also became evil, so they have this irresponsibility, they wanna have wild sex and just affect as many people as possible. That’s not the truth. Most people are just trying to get along with their lives, do the best they can and ya have sex cause why not. People have sex, that’s part of life, and people should.
Jordan: And is there a risk of as those stigmas go away, and as the treatment becomes better, that fewer and fewer resources are put towards the places to your point where they’re needed in terms of intimate partner situations or rural Ontario etc.
Emo: I think it’s an ongoing problem. We are not waiting until the stigma goes away, because even right now, as the rates go down without even realizing that the reason why we’re having the successes we have is because of the preventative measures that we’re taking. Resources are taken away because, oh it’s already working, so we don’t need it, but it’s working because of the work that we’re doing. It’s kind of I think social services just get a really bad rap. Everybody thinks oh we don’t really own mental health, it’s okay people just pop a pill you’ll be fine. But you forget that it’s all those other support that community provides that help people stay well. Popping a pill alone has never solved a problem. You have to have; You have to belong to community. You have to have a place where you feel like you are seen and you are heard. A place where you can just be and exist and receive and give the kind of support that you require to a human properly.
Jordan: I think that men living with HIV certainly in Toronto and big cities, have that network of support. Do women?
Emo: Yes, and no. Access. Many, many services happen 9 to 5. As you and I know, who takes care of children and who takes care of family. who takes care of extended family it’s often women. It’s just the way we’re socialized. As we try to change; While we’re trying to change that reality still remains that the primary caregivers in any situation would be a woman. So if you have a 9 to 5 situation, there’s no child care provided or there’s no adult care; Because some people are taking care of their parents. So if there’s no one to relieve that person and allow them to go and attend, then they can’t access the support they need.
Jordan: Do men and women contract HIV at different rates from different methods?
Molly: Yes, actually, so we know that the majority of transmission for women is through heterosexual sex. However, we see a disproportionate number when we compare it to men in terms of drug use and acquisition, so that continues to be a concern of how do we engage women in harm reduction services and we see less women engaged in harm reduction services, which obviously contributes to higher risk levels, and so we see that. We also see differences, as I said before, in populations and those things directly correlate to the social determinants of health and I think that’s really important for how we think about doing prevention work.
Jordan: That was gonna be my next question is how does that impact what you guys do?
Emo: What we do, and one of the mandates of why is to work with community. Collectively, collaboratively, with any community that we’re trying to work with to allow community to heal itself. What we do is we take ourselves out of the way because we have the profound understanding and humbling understanding that we are not experts, we just have access to some things. People know what they need. If you don’t believe me, ask a newborn baby. I have children and let me tell you if that baby has a wet diaper and you’re trying to feed him because it’s 4 a.m. and you just want to stick a bottle; A boob in their mouth and let’s be done; Until you change the diaper you will not know peace. Why do you think it’s different for community and grown people? Everybody knows what they need, but very often we say, you know, I’m gonna go help these people. How you help is by bringing what you have and saying here’s what we got, does this work for you? If it doesn’t work, what do you actually need? How can we connect? But you must come humbly and say this is what we have. So very often what we do is we sit with people, we create space, that is really what we do; I work now in Hamilton; We just create space and say, you know we’re the AIDS network, you’re a human being, we are people. How can we serve you? We really want to serve you. What does that look like? So sometimes I just get a bunch of pie, get food, say we’re gonna have a night, if you know a friend come on down, we might have a nurse, we may know, we always do, we may have a massage therapist, we may have some music. Let’s sit around and talk, and I’m telling you, people come together from different walks of life who do not even look like each other very often, and they begin to heal themselves. They begin to talk and say, Oh, you know, oh I’m currently facing this problem. How can; oh and all we do; We who are supposedly the service providers just sit in the room because; And I always say, I am only here because I know the alarm code, you don’t and if anything goes wrong, somebody gotta call, need help you can leave while I do that.
Jordan: So, Molly, how do you get from where you started to a room in Hamilton with WHAI?
Molly: Great question. So back in 2016 we did this consultation; We did consultations all across Ontario. It included women living with HIV, women who would be identified as facing systemic risks so that might be trans women, it might be African Caribbean and black women, indigenous women, women who’ve been incarcerated, women who use drugs. We also included service providers in that who work with those women and we asked like what’s working well in the community and what do we need to be doing? What our priorities need to be? What relationships are really helpful and what relationships aren’t working as well? And we all came together from across Ontario, so we’ve got coordinators in 17 different regions, 16 different regions and, uh, everyone had those conversations in their communities and brought the information together. We spent a lot of time going through it, and we came up with really some key areas of focus that were coming up all across Ontario, and we focused our energy into those. One of those that’s really stuck out is around community connectedness. Women across Ontario talked about being isolated, not knowing other women who are living with HIV and that was particularly true in non urban areas. So Toronto has some programming, not a lot, but some programming for women living with HIV. Other regions don’t have that, and often they’ll be very small numbers of women living with HIV who don’t have relationships with each other and because of the nature of confidentiality and health, it’s often hard to make those connections and also realities of poverty and lack of transportation and all those pieces. And so we have spent a lot of time talking about the value of holding community space where women can come together and including women both living with HIV and women who we identify as facing systemic risk, so that might have involved all those women that I listed before and knowing that it’s really important just to create space and that women also talked about the importance of having a lot of say in what their care looks like and that care might be healthcare, sort of a clinical model but often it’s really about community connectedness and having space to share resources, to give each other ideas about things that might be in sort of a drug using community where women can talk about injection, drug use, practices and safety, or where they buy their drugs or how they prevent risk of overdose. It might be about like who’s a great service provider to provide, you know, your health care? Where do you go and get blood work done that is a supportive place? Where do you go get your food kind of thing? So those kinds of spaces for relationships are really critical and, like, you know, said for us and for our network, it’s about holding space and putting community at the forefront of solving problems. Women in these positions know best how to figure these things out often when we don’t have space for people to connect, then those things don’t happen. So these kinds of examples of having pie are so critical to how women engage and how they feel connected to each other and how they feel like they have a sense of of community.
Emo: Volunteering is always a great way to get involved, you know, to say, I’m here. and can make coffee, I could be a part of this. But it’s also to be respectful and know that every space does not belong to everyone. You know, unless it’s your community, unless you have a particular affinity, you know, you have an identifiable affinity for a community, you should not be in that space. This is the honest truth. Even as a nation maybe, all we can do sometimes is just whole space and educate our own selves and how we can do better as individuals and maybe remove some of the stigmatizing; Cause there’s a lot of internalized stigma within all of us. You’d be surprised that even people who live with HIV, some of them have internalized stigma because we all live in the same world, we all have access to the same information. Nobody watches special news from Mars, we all watch the news cast, listen to podcasts the same thing, like everybody. So it’s to do the work ourselves to see what are the advances, what’s going on, how can I contribute and sometimes it’s to contribute to an aid service organization, sometimes it’s to read more literature. It’s to stop using stigmatizing language. When we talk about people, you know different people with different struggles, maybe learn about that. You don’t always have to go to people and make them teach you, you can find out by yourself. Google is a very, very good tool.
Jordan: That’s why I asked you guys in here, because I didn’t want to use Google. Just talk to the experts.
Molly: I mean, the power of human conversations is really valuable to ask people and connect. There are a number of AIDS service organizations across Canada that people can reach out to and link to, and see how they can get involved in their local community. Um, and if people aren’t sure they can contact us, we’re happy to do the research outside of Ontario as well.
Emo: People can bring pie too.
Emo: Yeah bring pie. If you’re the pie bringer that’s the way in.
Jordan: There you go. Thank you. That was Molly Bannerman and Eno Akan-Essien from the Women and HIV/AIDS Initiative. That was also The Big Story, and if you want more we are at thebigstorypodcast.ca. You can also get at us on Twitter @thebigstoryfpn, and you can listen and subscribe for free and rate and review wherever you get your podcasts. Apple, Google, Stitcher, Spotify, tell your friends. Thanks for listening. I’m Jordan Heath Rawlings, we’ll talk tomorrow.
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