Black Excellence in Community-Based Research: The A/C Study
3:48PM Feb 22, 2022
Today you will hear the views and ideas of our podcast guests who are eager to showcase their expertise and provide a platform for their views. But they may not always reflect or aligned 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.
We really have to promote this as a way to prevent people from from condemning HIV and certain access to information and the right of STD. That's, that's very important. They have to know the right. Not everyone should think that, you know, if I get tested, and I'm diagnosed with HIV, I'm gonna get deported.
We have a great show for you. This is pozast. Today, we continue to shine a light on excellence in African, Caribbean and black community engaged research. And these are important studies with real life impact developed and implemented by people from the African, Caribbean and Black community. In the last episode, we focused on the exciting and creative work of the Because She Cares initiative. And this month, we're going to look at Ontario's A/C study, research has given us the first real picture of how HIV affects the African and Caribbean B lack population in Ontario. It's a big study with almost 1400 people participating. And all of this data is going to be crucial to understanding the key factors that influence HIV risk and HIV vulnerability. It's also going to be a first look at HIV prevalence and HIV prevalence is important. Prevalence gives us an estimate of the number and proportion of people who are living with HIV in the African Caribbean and black community. It's a key indicator of the seriousness of HIV in the population. So to help us understand the issues and the impact of all this work, I'm going to chat with two very special guests, both co investigators on the study and experts on the issues. Pascal Djiadeu is a part time assistant professor at McMaster University at a lecturer at Humber College. And he's also a research analyst and methodologist consultant at the data Lana School of Public Health at the University of Toronto. And also please welcome the fabulous Fanta Ongoiba. Fanta is a leader in the African community and the executive director of Africans in partnership against AIDS or APA, as is locally known. Fanta has worked in numerous capacities related to human rights and humanitarian causes. And we are very excited to have her on the show. So welcome Pascal and Fanta. Welcome to pozcast.
Thank you, James.
So before we dive into talking about the study, I wanted to touch base around Black History Month, the theme of this year's Black History Month is February and forever celebrating black history today and every day. And I'm wondering what does this mean to you personally? Maybe F anta I'll ask you first
For me. February, named as Black History Month. For me, Black History Month is not there is no month for Black History. Everyday is Black History, everyday is another day to me. So I'm so proud and happy. I know this is political issue for governments to make a recommendation. But there is no specific day for a black person or a white person or a green or a yellow to make to me. Black Day is every day.
And what about you, Pascal?
I mean, it's it's a very important question, right? If you look at it from the decolonizing lens, you know, Black History Month is important because it's a reminder of all this history of black people, not only not America, but in the world in general. Right. But again, you know, it's important to say, and I think the theme of this year is important that black history month is every day, there is no specific month for Black History. Black history should be celebrated every day and every single day, not only by black, but by everybody around the world.
So can you give us an overview of the A/C study and why it's important.
We've seen lack of study lack of information, to make people aware of what is going on in our community that's brought three people in the community working like leaders, for from the organization to come together and then brainstorm around that, and we said, we need that we need statistic around this pandemic, or this issue, which is HIV AIDS, at least to have some data, some information, we can share, and government, people and policymaker, funders can see that there is a problem, there is an issue going on, within that specific community, then we can take action. And we can, we can also do more advocacy around that, in order to reach out to many people.
I mean, for me, you know, I always like to go back and talk about the background of why everything started. So it's important to know that, you know, black people, or ACB, are disproportionately affected by HIV, no child. And it's, it's also important to know that although we only 4.7% of the population, you know, we have 25%, that noses, you know, HIV, and we, we are one of six priority population in Ontario, you know, having greater vulnerability on on HIV, right, due to usually social, you know, structural and social factors, right, that threaten health, you know, access to health, and all those other stuff. So I think, doing a study like this was very important, first to have a snapshot, because it was a cross sectional study, to have a snapshot, you know, of it, you know, HIV in this community. And then, as Fanta just said, you know, to have all these people to get information on all these people know, whether, based on sexual orientation, or jobs, or, you know, agendas, and if what is really a huge study, you know, where language is also a very, it's a factor, right. So, yeah, that's why the study came about.
So it has the A/C study, been able to that was one of the goals, right, to be able to determine the prevalence of HIV in the African Caribbean, black communities, in Ontario has just been able to do that?
Oh, yes, I'll say yes, I'll say yes, because, you know, it's was very, not easy, right to come up with a because, again, it's a snapshot. But what we have done, you know, in terms of the statistic was to do some adjustment, right, and adjust that to the general population, first of all, and to the black community population. So we came up with, with about 6.1%, to the lowest, and 7% to the highest. And that's, we have to take that with caution. Because that doesn't represent the overall population, or the black population overall. Because again, this was a snapshot, but this gives give us an insight on what's going on in the African black community.
Right? And they're like, I guess, with prevalence, you want to do this, again, you want to see what's happening in five years, or 10 years? Or is there anything that's gonna anybody's gonna pick up the mantle from this study? is just the A/C study have plans to do this again? Or is this Who do you think should be doing this?
In terms of the same community will continue to do the study? And the tracking. If I may say that. Because it's not like Fanta, or Pascal will be there today, and then they will continue forever. But because of training, right, for young generation, they can pick up and move forward.
Yeah. And also, you know, it's important to to know that this AC talk study was led or led by African themself, so and they were ab le to appreciate the issue. Right. And then, also, I was a postdoc on the on the study, right. And now, as the independent researchers, my goal is going to be to follow on that and try to get not only more information, but start to fix some of the issues that were identified in this study.
Right, right. I read in the community report that it talks about one of the study values, and one of these values, stated that empowering African Caribbean black people with knowledge from this research can help them take ownership of these issues. And it seems to be that's exactly what, what will be happening. Yeah, that's great. So I'm wondering if you could just explain to me, Pascal, what the what HIV risk and HIV vulnerability means? Are they the same thing? Are they different?
Oh, I mean, it's heavy risk, and it's other vulnerability are very much intrinsic. Right? They are all together. There's no way to talk about the risk without talking about the vulnerability. But, one thing for sure is that risk factor actually exist. We talk about Sex exchanged for money. We talk about multiple partners, we talk about being MSM, men who have sex with men, we talk about needles exchange for drug injection use. But now in terms of vulnerability, we'll talk more about a specific community being vulnerable to, to HIV, due to specific social factors. So you can see the link between being at risk and being vulnerable to, to HIV. And in that sense, the ACB community is a vulnerable population to HIV, because of some of the risk we have listed, but also, it's important to mention that HIV in some part of the world, most even in Africa is very much endemic. And that makes this population even more vulnerable to HIV everywhere in the world. Right. And that's why if you look at phac report, they now report the endemic part of the of the incidence in Canada. So meaning those who come from that part of the world where HIV is endemic, is reported. Right. So then you can see the link there between vulnerability and, and also one of the risks is also some of the infectious diseases, right, that can put you at risk of having HIV, right? Like, you know, what, syphilis and gonorrhea and all those other diseases.
And then to add on what Pascal has said, also, for vulnerability on the risk, you know, most of the time, in Africa, in the continent of Africa, if I may say one thing is like, I can say Canada is really behind on prevention issue. And then when people come here, you cannot enter Canada without having HIV test back home. And then when you are positive, you are not even going to get any visa to come here. So newcomers are coming here. Most of them have negative from HIV AIDS, but when they come here, they don't see any prevention or information everywhere back home, there is information they find everywhere, is reminding them every day, reminding them in Canada, you don't see that. So when they come here we are negative message Oh, Canada is like freedom of HIV. This is the mentality that you must have been you can have. So that's also put put them in risk, as well as vulnerability, because the freedom, they let themselves go dancing back, as Pascal said, using drugs. That's also something we have to take into consideration.
So can you just give me an overview of like the main, the key findings from the A/C study? What came of all this work with all of these people is such a big study.
I mean the key findings is huge. I mean, do you finally went to the report?
The 88 pages? Yes.
But but for me, you know, as a francophone, and my part of the study, and that's in font as well, was to look at access to healthcare for the Francophone community. But one of the key finding is access to healthcare, social services. And this is an exacerbation or huge gap between the French speaking and the Anglophone speaking. So french speaking, people have, you know, difficulty accessing Special Services Specialist, let's say, like, family doctors, or nurse specialist, you know, they have difficulty accessing them. But overall ACD people are behind in terms of access to healthcare. But now, if you stratify between the French speaking the Anglophone speaking, you know, you see again, the gap, you know, if you speak French access is really more more difficult. That's number one. So if I go about, we talk about the prevalence. So based on this based on this study, and the fact sheet that has been that's about the ACD to about 6.1%. I mean, 6.1% of ACBS are living with HIV. So that's the lowest and the highest in our study, in terms of this statistic was 7.1%. So that's the range of people, STD people with HIV no challenges so far. We talk about a little bit about immigration experience. ACB immigrant who live in Canada long way more likely to have post secondary education, right compared to newcomers, you know, be employed full time. So we clearly saw that, you know, if you're an immigrant, and if you're new to the country is more challenging for you, compared to immigrants who have been around five to 10 years, right, so knowledge of HIV transmission, the level of education, the language employment status, significantly impacted participant knowledge about HIV transmission acquisition.
Right. And you were also looking, you also interviewed people living with HIV, right? To understand their access to services. And so what sort of came out of that?
Like people living with HIV, their accessibility to health care, that is not that tied, than people at risk or like when you come as is, it's not easy, because people don't take new client. But we have to struggle, we have to advocate we have to do many things to help them have access to health care specialists, like HIV specialists, like Pascal was saying, so. But doctor or medical people get involved into our study where we'll come to understand what is going on, really. So we, interview have been conducted for PHA people, they were involved, and they put out whatever challenge they have, in terms of accessing health care. But I think we cannot complain too much. For people living with HIV is accessing services, some services, it's not easy, kind of like having access to welfare. At the beginning, when they come and to establish them is not easy, like most of the time is like a shelter before we get housing. All that difficulty is like social determinants of health. That is more challenging. And then now, it's not easy also to get an HIV specialist doctor, due to COVID. Many factors, right?
Yeah, before I get into that, I wanted to highlight HIV testing constantly, which was also a key finding, because everything started with testing. So 69% of participants have always tested for HIV at least once. But one of the limitation for testing was stigma. So that stigma was a huge barrier to get tested for HIV, and also the fear of being deported. You know, as a new immigrant, maybe, non status image. The lack of information, HIV is fantastic. At the beginning, you know, people don't have enough information, HIV, they just see a lot of a lot of sign talking about HIV risk, and all those connections,
Just dwelling on stigma for a second. So yeah, so it's stigma for testing is that stigma, do you think coming was probably coming from everywhere, but is it is the stigma also coming from within the their own community?
Yeah, stigma is multiple layer, accessing services, stigma is there. So the stigma between healthcare provider also is there. Stigma within the community, also is there and then stigma around the language, also is there is like, some of the challenge. And, you know, keeping confidentiality is not always there. So that's why stigma and discrimination is a huge factor for people living with HIV AIDS, in our context, in our community, because I will give example so I work with Bahia being the executive director of Africa in partnership against AIDS. So if a nurse wants to refer a client to us here, they have to ask multiple questions. Are you coming from Mali, for example? If I said Yes, I'm coming from Mali and the client is coming from Mali, then there is no chance for us to be able to support that person. Because the person has in my in mind, that I'm being from money or coming from Mali, and she or he coming from Mali, I might go and break the confidentiality, and then take his name, you know, all that fear is there is not something easy to handle and to control If I can say even though we have form here to sign for confidentiality, if you break that ban, you cannot guarantee.
Right, right. Yeah, to just add on that one. Yeah, it's very important to know that sigma is one of the challenges in HIV in our community of, because that's fantasy, you know, you have much less stigma, Sima could internalize, you know, stigma to it could be enacted, stigma could be perceive, meaning just the fact that no, that just this person over there is black, like me, is only a factor to be reluctant to, you know, to access care, or to get tested. And now, it's important to to say that most of our healthcare system, you know, we started now, and we are advocating for that on the A/C study, is to have a culturally responsive healthcare system, right, because most of the time, if you are an MSM, you know, you like to go to somebody who can understand your problem, right? You don't want to go meet the doctor who is gonna ask you multiple question. And that's culturally could be very challenging for some of us to, to approach that. So you have all these cultural responsiveness, you know, this internalized stigma, enacted stigma, healthcare, system, stigma, and all those other stuff contributing to HIV testing, to be to contribute to people be more reluctant, you know, to get tested for HIV.
Right, right. I did. So did anything, or all of these, this mountain of data that's been returned? I was there anything that sort of surprised you? It from the data or the implementation of the study?
I mean, the French situation was really a little bit surprising. Because believe me, even in in terms of HIV prevalence, it's more is higher in the Francophone community. So if you break down the data, you know, that number is a little bit higher in the Francophone community. And that's a surprise. So that's a target a specific target community like that, but access to healthcare, something we knew, we talked about, you know, cultural responsiveness in the healthcare system, and all the other situation, all these racism, structural racism, you know, structural barriers, is something we already know. But this was a confirmation of those situations. Yeah.
Right. Oh, interesting. So I just want to switch gears to implementation a little bit, because I know really large studies, it can be challenging. So it was like almost 1400 People you recruited? And I think there was two phases. Right? The first was the data collection, like the surveys. And the second was workshop, right? Where you had 12 focus groups or something. Is that correct? Yeah. Yeah. And, but part of the implementation was also people would get tested. And how did people, I'm just wondering how I'm thinking of reflecting on my own with or how I would feel how did people feel about getting tested as part of a survey.
I think, if I can, myself that because I did the demonstration, to encourage people to do it for the test. Right? So I think people are afraid, is fearful. And you don't you don't like within minutes. You feel like your life, you don't have breath anymore. Like your life is going away. So you will think even though you trust yourself, but how trustful can you be? You don't know? So you know, you didn't do something bad. But blood will tell you another thing. That's not you cannot know. And that's fear was there. And then many people will ask questions, okay, if I do that, who and who will see it, but then how my my confidentiality will be protected? And then if I become positive, are you going to send that to the lab? Or are you going to report to me to public health, or police will come to me? So all that question, or immigration will come to me, am I going to lose my immigration things? All that question will come so we prepare people during the workshop and then meet for example, being at the frontline, and then giving my hand to drop the blood and do the tests. So then it encourages people to come forward to do the test, but it was successful,
How many times did you have to, to demonstrate the test?
Anytime that there is a workshop, I have to do the demonstration.
Right? Well, good on ya, that's good. Um, so I'd be I think I'd be remiss if I didn't speak about COVID. Because this study went to while you're still collecting data in 2020. Right? So I'm just wondering what impact COVID had on the A/C study, if any?
I mean the impact of COVID on A/C study, the first thing that's come in my mind is that the First World Cafe, which is part of the kte, that's that was planned, we have to do it online. Right. So the the first work I feel was done online, because of the COVID people couldn't gather together. And after that, you know, some of the KTE sessions also have to be done online. At that time the data was collected, but the implementation, as you said, of the study moving forward, was impacted right, by by the lockdown and COVID. And so.
Right, do you think negatively so or do you think did you adapt to the online? Just fine.
I mean, the adaptation was not only for the A/C study, it was for everything. So people have to adapt for everything, but I can't finish notice COVID impact on A/C study without talking about the COVID impact on HIV or people living with HIV overall. Right, we know access to medication was a problem, you know, we have increased of anxiety and stress because HIV itself in terms of mental health, and Fanta can attest to this is already a problem in the people living with HIV. And our COVID was another factor. Ya know, and we saw high increase of anxiety in those in that community. Right? Access to drugs, you know, was a problem because people couldn't get to the healthcare provider easily. Things like that. Right. Food was a problem also, to some extent, I think Fanta was working, she works all the way through she was in the office during COVID. Right? Because, obviously, you need somebody to that this people can have access to.
Absolutely. So I guess everything like with programming, Fanta, I mean, it's all gone online. And I mean, I know what the work I do, too. It's it's a challenge for everybody to adapt. And sometimes you just don't know, when things are going wrong. When you're not actually seeing people. What are we going to do with the results from the A/C study? What's next? Pascal, can I start with you?
And then next, we have a couple of key action that we want to implement. The first option is leadership in the ACB community, we want community leader that's going to be taking HIV from from the home, right, and push it all. And now in terms of structure and policy action, right, we calling to stakeholders, you know, the government to implement policy, some policy changes, right to resolve the structural factors, you know, that negatively impact, you know, the ACB community, that's very important, because we thought that it's going to be hard, you know, we need funding, we need support of this leadership. So, the structure actually your service, service provision and related action, individual actions, everybody has to take responsibility in the community, HIV community organization also should learn from this study, you know, and, and do some changes in the way you know, they approach HIV in the, in their own organization, right? French needs to be implemented, you know, in anything we do. And since the A/C study was the first study was the first bilingual study in every aspect Ontario.
Oh, that's fantastic.
Yeah, absolutely. The report was in french the function was in french. Everything was French and English.
So how do you think Fanta like how can you use this data to make change at the frontline? How do you think it's gonna help you there?
This study will help us all front line worker, not only ACB community, even other community, it will help people to implement whatever project they have in their organization or within their organization. And then to include even if you serve black people or not, at least you're going to have knowledge on how culturally to adapt. If a black person walks in to your door, where you can help you, at least you're going to have the tools, which is already prepared to enhance your program. So I think sharing that data sharing this information spreading across Canada across the world, is very important. And then this study is, as Pascal said, the first bilingual study. So English people can see themselves in it, Francophone people also will see themselves in it to implement whatever is the gap or missing in their programming, and to implement that in the programming. So as Pascal says, the key important things is government to see it. And then not just to ignore, they started making some movement, some change through the black anti racism component by throwing funding people to apply. But still, that funding is not easy access for communities such as us, our community, ACB community. So both are important, right? Because without funding, you will not be able to do much. You can do something from your heart, because you are a human being humanitarian worker, you can do that. But how long? And how far can you go with it without a supporting element from government? You know, so to me, the A/C study help us for example, as I was saying before, in programming, so whatever is missing religious leaders, for example, faith leaders, for example, to involve them to create a project, not for them to come to the organization, but organization can go to them, give them the tools, give them the information, and then they can carry on with capacity building they can carry on. So that's a change. That's a huge supplement, coming from the A/C study that all of us we have to take her as our baby.
That's, that's fantastic.
And just just very quickly here. Yeah, James. I mean, it's important to talk about this committee level actions that need to be taken place. And because I know we discuss part some of it. So we have to increase availability and accessibility to HIV related information. That's important. People have to know what's going on. Right, they have to learn about this virus, you know, in the community, address HIV stigma in the ACB community. Yeah, that's very important for more prep, and pep, as an AIDS prevention tool in the ACB. community, because those are some notions. I know, some students have been going on from the Levon Nelson lab on PrEP and support, you know, decision support on this, but we really have to promote these as a way to prevent people from from from getting HIV, and certain access to information and the right of ACB people. That's, that's very important. They have to know their right. Not everyone should think that, you know, if I get tested, and I'm diagnosed with HIV, I'm going to get deported. That's the thinking is, you know, people have to know their rights. And they have to we have to inform them about not getting to jail, because you HIV tested with HIV, you know, stuff like that.
Yeah, very important. And thank goodness, there's this very extensive, well done community report that can be accessed through the A/C study website, which I believe is A/C study.org. Is that correct? Yeah. So please, everybody, go there and have a look. So I want to thank you both very much for coming on pozcast today. But I want to end off our conversation with these this or that questions? Just for some fun. Is that okay with you guys?
Go for it James,
All right. All right. Okay, so Fants. I'll start with you. Okay. introvert or extrovert?
Which, which are you?
Go for it. I'm so bad. You know, I like flashy stuff. I don't I don't internalize anything. I just let it go out.
okay, what about you Fanta?
By me laughing That's something I'm okay.
You're extrovert. We'll take it further.
There's nothing inside that extra.
so how about late night or early morning?
For me? I'm a late specialist
late. Yeah. Okay, Pascal?
Late. It's late.
Show or tell Fanta?
I can say tell.
Very good Pascal? Show or tell?
Okay. Two more. Fanta, predictability or excitement?
Excellent. Pascal, predictability or excitement?
Okay, I'll take that. And the final, Fanta, painful truth or comforting lie?
Painful truth. I prefer that over comfortable lie
I'll go for favorable truth.
Okay. All right. Well, thank you both so much. I really appreciate it
Thank you James.
Ya, thank you so much James.
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 firstname.lastname@example.org. 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 positive effect.org technical production is provided by David Grein of the Acme podcast and company in Toronto.