Ntando Yola, Founding member of the Vaccine Advocacy Resource Group

Ntando Yola is a founding member of the Vaccine Advocacy Resource Group and co-lead of APHA Advocacy for Prevention of HIV and AIDS, which host and partner with the COVID-19 Conversations weekly webinar series. In 2013, an AVAC fellow with a track record in advocacy for stakeholder engagement in the HIV prevention trials. He was the keynote speaker at the 2013 AIDS Vaccine Conference at which he contributed to setting the standard for civil society engagement in vaccine and HIV prevention research processes. He has invested over a decade working with the Desmond Tutu HIV Center and is well known in the South African vaccine development and advocacy community. Colleagues, his community engagement work has included working in trials across various research networks as a member of the HIV Vaccine Trials Network(HVTN) social, behavioral working group, and the current community working group co-chair of the HIV Prevention Trials Network(HPTN). Ntando is committed to facilitating the work of the VARG to support civil society groups and other role players in South Africa through the dissemination of appropriate messaging and mobilization of all role players for HIV vaccine research and development. He’s also a member of the South African Health Technologies Advocacy Coalition(SAHTAC) Health Research advocacy group, focusing on HIV prevention, research, and related infections and being the Chairperson of the SANAC Men Sector. Ntando is a steering committee member of Africa free of New HIV infections (AfNHI), regional HIV prevention, the research community, and advocacy platform.

QUESTIONS AND ANSWERS

*This section contains a transcribed account of the Question and Answer Session

Over the last, indeed nearly two decades, we’ve been doing this work; we’ve seen ongoing problems of poverty, inequality, or violence being brought into the research space by shared necessity because it forms such a huge part of South Africans lives. Do you think that the men sector has a role to play in terms of how we can do research better in terms of this particular context in South Africa?

Thank you, Tian, and I think that’s a critical question. I think it is something that is at the center of the work that we are doing. At the onset, I will say that patriarchy is an issue that we face precisely. And for the reasons that you are highlighting and for several reasons that are even mentioned in the strategic objectives of the National Strategic Plan in South Africa, which are as a result of a lot of issues or a lot of activities or things that are done primarily by men in South Africa that tried a whole lot of, social ills. To come to your question, the Men Sector in its goals and strategic objectives is to deal with all of these issues by building a movement of men who are very conscious about all of the problems that particularly women and children play as a result of our actions as men and to work in a very intentional way, where men are mobilized so that we provide spaces where we confront all of these issues and have engagements amongst men to have what we would call honest conversations. And if they become genuine, it is one issue that we can talk a lot more about. But I think one of the very critical and essential things is that out of a certain group of men who are not perfect by any means, we can find mechanisms of bringing all of these issues and see what role we can play. And within that willingness, and building that consciousness, they indeed a role that we can play. But it is a role that is huge and very complex and humongous. And if we are doing well in contributing to all the questions you have raised, I think it remains to be seen for many reasons. But I think one of the things that encourages me as part of the Men Sector is having to be it one, or two or three of which, at this point, it is more than those men who are recognizing this. As we go into the conversation, we’ll realize how complicated, long, or historical the issues we face resulting from things we were confronted with as men. And then it becomes a complicated thing to work around. But most importantly, there must be a start somewhere. And the Men Sector is doing a lot to try and address those.

How do we build communication tools for trials? And how then is affected community involvement happening?

Here, one of the things that happen in terms of the development of materials for trials is that the organizations are doing a lot of the research work, and some of them I have mentioned. They take on the responsibility of working with the communities who are a part who are directly participating in research. And as part of that, in terms of all the resources, development, and budgets they have, which I think is very important, they have mechanisms of consulting with communities about why the materials are developed. The purposes of the messaging that are important for ensuring that the materials created are speaking to the communities taking part in these trials. We can consider many mechanisms, but the broader stakeholder engagement frameworks that some of us are working in speak to these materials and inform how all of the messaging is developed. But I think one of the crucial things in this age, especially during this COVID arena, is that one question of the materials as we know them in terms of the print material that gets to be given to communities is useful in sending out messages. And I do think that at this point, everybody is on social media. And this is a platform that we should be using as much in terms of the material we want to develop and spread the messaging. But in terms of how we must hear from the people who are interested in this work will understand communities instead of having those who want to do research. They are thinking and deciding what kind of material is needed for all the messages and many myths and misconceptions that we want to address with regards to research. I think that was the first part of the question. I don’t know. I can’t remember the second part. Yeah.

So the second part was, and I’m not sure if this link to a separate question, but how does involvement happen with significant communities? Could you characterize and speak to how in your experience, and involvement does or perhaps should occur when it comes to dealing with communities impacted by any issue, in general.

Right? Involvement in, and it’s essential to recognize the principles that have spoken about why they should be involved. And I think if we understand it very well, of which a lot of us as community engagement practitioners and advocates, we find that today’s variation, especially by some researchers and how they understand these principles, some they see it as a burden, that impedes, the progress in terms of the research they are doing. I think those are the things that need to be addressed. Once there is that willingness, and there is that buy-in, which is the same buy-in that we need from communities. And these are the things that a lot of these guiding documents, which are mostly informed by advocates, and other community representatives. They provide a way of bringing on board the voices of those affected by the research or even or any of the work that we want to do. And I think, without answering the question in terms of the specifics of the question. Still, I think one of the most important things, in my view, is that engagement requires researchers and the research field that recognizes the importance of why there should be engagement. And I think everything else after that, once the stance changes, can flow. And we can figure out I mean; you can talk about a whole range of engagement approaches. But I think for me, what is important is that recognition by those in power regarding research?

So Yvette, who is also your co-founder, with APHA that’s been a great partner over these COVID-19 Conversation weekly calls, asks, could you speak a bit more to what men can do to support women in research, as peers. And she’s talking here around the lived experience around male engagement, really coming across as male permission. So what do you think men should be doing to support women in the research space? If that has happened? Could you maybe share an example? And if it hasn’t happened? What do you think are the most immediate, low hanging fruits that men could take advantage of to support women in the research space?

So, I mean, this is a fundamental question. It is something that I have experienced the research field having to deal with, especially with regards to all the structural issues that we’re dealing with violence. Especially against women, which lead to higher rates of, you know, of unwanted you know, situations be it psychologically or in terms of health and of course, in the context of HIV and TB and many and specially COVID is which is one of the things that we’ve gotten reports around. And I also want to be very clear that, while I am, I’m probably being asked this question because I am part of the Men Sector, which is just an entity. And I think one of the things that we probably, as a collective of advocates, have to recognize is that when we talk of men, or in fact, when we speak of any population group, in the context of the work that we are doing we can tend to talk as if we speaking for a whole multitude of men. And I think that is not humanly possible. To come to the question, I think one of the things that are debated continuously around the issue that Yvette is raising is that some of the prevention or modalities that have been researched have been framed as products where women can take them without the consent of men. And part of the debate around that framing is a debate that wants not to recognize that men and women and especially in heterosexual relationships, are part of the work. Based on the same things that we are talking about, there is inevitably this level of influence that is happening, at least in those close relationships that are happening within homes and communities. And again, there is the same issue of patriarchy that affects how all of this works. How can they be engaged? It’s essential to then for those men and or even women who have access to the men that we know are problematic to find ways of engaging with those groups of men. And, bring on board many other organizations that are directly working and dealing with the issues that pertain to these problematic issues of patriarchy and masculinity that we have characterized as very toxic in relationships. So many approaches can be used to engage around, you know, these issues. And they should not, in my view, be framed, specifically for research, because the problem is the research is just one component where masculinity and patriarchy express itself. But I think, for all fighting for most of us, we know that these issues are in society. I think it is then within that understanding and context essential that all the efforts should not specifically be targeted, and or isolated, to work around research and in other particular issues that we are working with, the million-dollar question is if we can be able to be united as different communities and as different genders to address these issues as collectives. And I think that’s a question that remains to be answered.

I’d love to hear your perspective on this is. Having said what you’ve said and worked over a decade in the space, having experienced what you’ve experienced during COVID and since the advent of COVID. Where do you think civil society has dropped the ball. Have there been moments where you stepped back and thought, gosh, you know, that was a strategic moment that passed, or that was a great opportunity we could have perhaps should have taken advantage of. And so I want your reflections on where you think as a collective, other specific areas, we could do better. In terms of advancing the field in general, whether it’s community ownership, whether it’s dealing with white supremacy, racism in the space, or representation space.

And some of the things that I have observed in terms of the broader civil society space, and how, in this instance, be speaking from a perspective of HIV, TB, and STI work, which is a specific sector of civil society. And I think speaking of one particular sector touches on the very issue of how our pockets and pockets of the work that we are working in and that is one of the areas where we are missing the power that we could have as civil society as a collective, in the sense that we are very much divided even within the same sector of HIV and TB. Again, we get, which is something that is not intended, but we are about, I’m about a specific issue, I’m about prevention, I’m about treatment, and you can name them, on and on. I think we do not have an excellent strategy of recognizing that there is power in coming together from within those different pockets that contribute to the work. And finding ways of bringing the diverse expertise and areas of interest that we have, in terms of the different work we’re doing. Then, I think that would give us extreme power to change many things that we would like to address, especially in South Africa, where we are dealing with. Many of the disease areas that we are addressing affect disadvantaged communities because of their social standing and economic standing in society. So somehow, it looks like we believe we can win all of these issues by just doing them all alone. That we are this group who can do this alone, and why this group who can do this alone, and I think that’s one of what I see as, you know, as lost opportunities as civil society. But suppose there’s something that can be done about that. In that case, I do not know, because when we talk even if we can refer to movement, political movements, one of the things that we realize, I mean, that is argued is that the way movements and activism movements that are looking for a specific change, develop and progress. It happens in this manner, where people are divided, people cannot work towards seeing having the same vision. And because I think all of us in our differences, we all want the same things. But if we come together to address all of these issues, it is even happening regarding research. We are not having your way, and I would love to get people who have an idea who have cracked an idea that can bring us together to be united in how we fight the issues that we faced as a society and especially as black people, from the socio-economic problems that we face. These social issues of violence and patriarchy, as we have mentioned, and dealing with issues of poverty and many other issues. So it isn’t straightforward. But I believe one area that we have lost is how we get divided and how resources are at the center of determining how we view our work. What it is that we are willing to advocate for, and disregard other aspects of the work that we want to advocate.

You’ve spoken about the VARG work; you’ve touched on your role as well, in the call around APHA. Apart from that, you mentioned your involvement in many of these extensive, very powerful networks, such as the HVTN and HPTN. Now, these networks are multimillion-dollar funded; they wield considerable power globally. And depending on who you are and where you’re standing, community involvement and engagement takes different shapes and forms. How have you navigated the space as an advocate? And reconciled that with your role in these networks, which might seem very regulated and very stringent from an outsider’s point of view. How have you been able to carry your voice and carry your voice volume from the advocacy space into those spaces, which to an outsider will seem very regulated and tightly and managed?

Thanks, Tian. I don’t know how I have done that. But I think, yeah, I mean, I’m keeping quiet, because I think it’s a challenging thing to do, to navigate working, in spaces that have got so many layers, that are infused with a lot of power. You know, whatever you can characterize it, but I think there are many power dynamics. That makes it difficult because you then become within those layers or the hierarchies that exist within the work we’re doing. But I think, having said that, it is essential to acknowledge that many people, at the end of it all, and this is something that I have come to acknowledge as part of the work that I’m doing. That a lot of these influential people working in this space and are informed by an interest to contribute. And I think it’s important to recognize that. I think that’s one of the things that I pushed myself to get closer into these spaces and take my fragile voice to stand up and strengthen it as you continue to say the things in very intimidating spaces. Spaces that can unintentionally be somewhat violent to communities, without intention. I think my resolve has been to try and get there to say the things that are hardly spoken about. I do not have a formula, but having a community of advocates of which some are here. People that I work with that we work with and that sense of community helps us to be able to draw from each other strengths. We bring support, moral support, psychological support and, resources support, and many strategies. If I can make an example, you know, about people, I hear that there is a lot of stuff that I gained from you as Tian, which I gain from being part of the community with Yvette. And for instance, Miranda and I think that sense of community helps us recognize each other’s strengths. And when there are spaces where I cannot openly say certain things, I know that Tian will stand up to highlight those things, same as Yvette and many others, you know, who are part of this. Knowing that I have a community of advocates and communities that I work with behind me is what keeps me going and what gives me the strength to be vocal about these issues. Still, not only people call to, because I think, as we know, once you become vocal, you then get to be offered to be, you know, in decision making spaces, because maybe you are making noise, which again, the more you get into those spaces, it gets challenging to continue and engage. But I think the most important thing that I value is being a member of all of the tribe if you like, that gives you strength, or gave me the power to know that whatever I say I am saying on behalf of the collective, that has given me the right to speak on their behalf. Because I think that’s one of the issues that we’re dealing with, where, you know, a lot of people nominate themselves to speak on behalf of the right, the rest of the people, which I think becomes, again, very tricky, because it’s the stuff that’s just about me as an individual. Still, it’s not about the issues that I get. So I need to be very close to the community, the communities, you know, in all of the layers they exist in.

What do you think advocates going forward, perhaps in the next three months towards the end of the year, should have top of their mind in terms of we had the strategic low hanging fruits that we should be putting our energy under-resourced energy I should say, our non-financed passion. Where should we be focusing on as we lead up to the end of the year as advocates where the collective vested interest in ensuring that research in general but specifically COVID-19 research continues to be held to account?

I mean, I love it when you keep saying they’re low hanging fruits which are very hard to see. But I mean, that many things are coming to my mind, but I think at this point, one of the fundamental issues that we are dealing with is all of the COVID research that we are in all our different parts are involved in and have voices in making sure that the community’s interest and voices as part of this research are very critical because we saw ourselves going back somehow, to an age that you didn’t want to see where community’s voices were very much disregarded. And to an extent, while it could be justifiable, early in at the beginning, this is an emergency. And so we do not have a lot of time, but I think two, three, six months down the line that didn’t and wasn’t a justifiable excuse not to engage stakeholders. But I think part of the things; the difficulty is that this is not well understood; the whole COVID situation is not well understood. But the main challenge that we’re facing is, which I think we should unite and engage with the process about the development of all of their in modalities to prevent or treat COVID is an issue of accessibility. Because I think there’s a lot of talk about how we will access the successful products that have been tested and know which some of these products are being tested in our part, especially in South Africa. Having access to these products is the main issue that needs us to be exceptionally forecast to be united again and use this platform in these spaces to engage with those processes. Because they are at a political level, you know, rich countries will be able to access the vaccines that have been developed. In the US, it is clear, they say it time and time again, that by December, we are looking to have one vaccine candidate. This then means that the US is going to have a preference in terms of access. But what does that mean about a country like ours, which is the most impacted country by COVID in Africa? In fact, a lot of research, which has seen many uproars around, negativity around research, which we have been vocal as advocates, needs to do vaccines because vaccines work we stood up to do that. But there’s this layer that we probably have not caught up early enough to engage with, in terms of ensuring that when the US tomorrow celebrates that we have a vaccine, the US is bulk buying, you know, vaccines for their population, because it is at this political stage in the US. What are we doing as advocates to make sure that we make our voices very strong so that we show that, you know, these vaccines work, and in fact, we need them more than any other? And, the reason that we mobilized and send positive messages around vaccine research during anti-vaccine movements that are rising. What should we be doing to ensure that our government is preparing to get all of this because we do not know? So there is a focus on the processes of research, but we have to engage with policymakers in making sure that we are prepared to buy these and benefit our communities.

What is next for Ntando in his various roles of the VARG, APHA, and the range of spaces and platforms that you enjoy access to and prisons on? What is next for you as an activist in this space?

Thank you. One of the most important things that I pray for is when we spoke about breaking the bridges, the barriers between research and communities. And in fact, I think we can have some small wins with regards to that. But I believe there is a lot of bridges with regards to communities. Where, you know, communities are focused on different aspects, that is about their interest, which I think is understandable. One of the things that I’ve worked on a lot in my life is that I have happened to be in the research field, and but also happened to be part of advocates. And just by me saying that raises a question that isn’t this the same group that should be working together. Now, I think one of the things that I’m very much interested in is to bring those parts together so that we can have recognized. I mean, recognize and acknowledge the spaces and the opportunities that can bring us together because, in that aspects of togetherness, that’s where lies in our power to change and have the things that we want to see happen.

Testing

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Ntando Yola, Founding member of the Vaccine Advocacy Resource Group

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