Linda Gail Bekker, Deputy Director of the Desmond Tutu HIV Centre
With Crown Coronation,
“the juice was not worth the squeeze.”
Moderator: Tian Johnson
Complied by: Anna Matendawafa – with inputs from Wilfred Gurupira & Maaza Seyoum
Webinar Recordings & Supplementary Materials:
Date: 30 July 2020
Linda-Gail Bekker, MBChB, DTMH, DCH, FCP (SA), Ph.D., is Deputy Director of the Desmond Tutu HIV Centre at the Institute of Infectious Disease and Molecular Medicine, University of Cape Town and Chief Operating Officer of the Desmond Tutu HIV Foundation. She is a physician-scientist and infectious disease specialist. Her research interests include programmatic and action research around antiretroviral rollout and TB integration, HIV prevention in women, youth, and men who have sex with men. She is PI of the National Institute of Health NIH (USA) funded the University of CapeTown Clinical Trials Unit(UCTCTU.) She remains actively involved in the four associated clinical research sites and four DAIDS networks. In particular, she has chaired protocols for the HIV Vaccine Trials Network (HVTN) and HIV Prevention Network(HPTN) and has been IoR in several network-related protocols. She has served on numerous international and federal scientific and working committees. She heads up the Desmond Tutu Centre of Adolescent Health and Wellbeing at UCT. This consortium aims to develop best practices and evidence base around adolescent treatment and prevention of HIV, TB, and STIs and the integration of these services within a robust adolescent-friendly sexual and reproductive service platform. She is the immediate past president of the International AIDS Society and served as the International Co-Chair of the 9th IAS Conference on HIV Science in Paris in July 2017 and International AIDS Conference in Amsterdam in 2018.
Linda Gail Bakker shared the work that the foundation is doing in general and what motivated the change in the foundation’s name, what that means, and how the advent of COVID-19 has impacted the foundation’s work what new and potential work is coming out in the foundation.
QUESTIONS AND ANSWERS
*This section contains a transcribed account of the Question and Answer Session
Could you unpack what mental health support are you providing as the foundation to your team? What support and resources are there. We see burn out in many cases, resulting in suicide within any creasing amount of suicide amongst NGO workers on the front line? What support is there for the Desmond Tutu Health Foundation DTHF team to access in terms of their mental health?
Tian, you’re right. And again, we are coming to terms with all of this as we move along. So the fascinating or the challenging thing about COVID just how everything, I don’t like the word warp speed because of the administration that thought of it. And I did the association in my mind isn’t great. But it has been warp speed. I mean, it is useful in terms of, just it’s been unprecedented how quickly everything is moving. And there is no time for cogitation, then. And maybe that’s also contributing to their sense of anxiety and mental health and challenges out there. But let me say that we’ve had to move very quickly to understand the implications. So the first thing is the first question everybody asks, Is there my address and, you know, that that’s been becoming apparent over the last six months, which is more at risk than others and the age is undeniably a significant factor here. And of course, we were a transformed organization. We employ all kinds of individuals of all ages and all types of status in comorbidity and living with HIV and not, and some are open, and some are not openly living with HIV. And so, of course, understanding the individual risk was important. So we did a person by person assessment, literally, obviously, with the individual’s permission to what is your status as an employee in the space of COVID. So that was important to categorize everybody. We then created the sort of buckets who can go back to work safely, who needs to work from home but in a different capacity, who can come back to work but has to be upstairs away from the public. How do we get people to and from work safely? All of those things had to say you have to do the physical, logistical stuff, right to reassure, and then you have to stay in touch all the time. So throughout the lockdown, we had a daily COVID newsflash and hats off to Fatima, our communications officer who, you know, single-handedly manage this. And she always had a mental health kind of thing there.” And you know, remember guys to breathe, remember to take a break from your screen remember to, to, you know, hug your somebody in your family” I love the Korean system they’ve come out with messaging to say physical distance. Still, you can hug somebody in your home. And by the way, so you know, they’re there and of course to remember some individuals live alone so that those people, particularly maybe you can send a virtual hug to. So that was the other thing to stay in touch. We’ve now reduced that to weekly just because it can also be overload, and there’s an unbelievable amount of information coming in via social media, but essential communication is vital. I try to stay in touch because I’m a figurehead, and I recognize that I tried to now and then without being painful, sending out information, and updating how we are doing and managing. With my leadership team, I have a weekly COVID response meeting. So again, there it is to hear from the ground up as well as from me down. What you know what so communication we stop there, that is key. We’ve recently also had a survey amongst the staff, both anonymous and non-anonymous, depending on the individual’s choice to get a temperature check in the organization. We’ve asked things like, what’s your anxiety levels? So again, check-in, see where people are, what’s the feeling on the ground, whether there are particular card rays or specific sites where people are struggling? So that’s the other piece, and then we’ve tried to put resources at people’s disposal. So we have an internal staff counselor within our organization. He is, you know, 24/7 seven available to staff, and we also have other resources outside of that individual at staff disposal. So I guess we are aware that you can still be very mentally distressed on your own and so line also told, please check in if you’re not hearing from someone, track them down, find them see why they may not be responding. Of course, if anybody gets sick and I will say we have had individuals get sick within our ranks, all of them not in the workplace have contracted their COVID elsewhere. And sadly, to date, we have had one staff member passed away due to COVID and that, and I’ve been very aware that hit the staff hard, and we’ve tried to give as much support as possible. So not to forget this critical component. So thank you for raising it.
I would like to speak a bit more specifically on the vaccine trials that the foundation will be moving ahead. And there was some talk a few weeks ago, around trial called Crown Coronation. And we know Wits Reproductive Health and HIV Institute(WRHI) is involved in that, as well as the foundation. Could you share any updates or thoughts on how that trial is progressing, if at all?
Yes, but again, just to remind everyone, we did have this or similar webinar to engage folks and give them information. So this Crown Coronation is a fork to remind everyone it’s a full continent collaborative, I suppose as the base route led by an amethyst, a brilliant guy, a South African based in St. Louis, in the US. And he is joined by a co-PI in the UK, and then Helen Reese is the other co-PI, and this was to try and repurpose an already existing agent so that we could move quickly as pre-exposure prophylaxis. So if I can use it and I know not everybody will love this. But if I could use the analogy that in HIV, we have condoms, and we know that has been the cornerstone of our response to the prevention of HIV. The male and female condoms, but we know that those fail sometimes or are not available or can’t be accessed. And then we’ve come in with this thing called oral prep, oral pre-exposure prophylaxis. And of course, we are now trying to find injectable PrEP, and again, I can’t help spread information that cabotegravir la now is, is that it is approved, and the vaginal ring also very well. It’s not approved, but it’s worked the LA, and of course, the vaginal ring is now European Medicines Agency (EMA) approved. So we have other prophylactic agents, so for when a condom fails. So the analogy in COVID is we have PPE right we can physically distance we can provide ventilation, and we can give N95 masks for healthcare workers. Sometimes, those aren’t available, or they get missed, or they don’t work, so is there something else we can offer him to the prophylaxis. And our first stab at this was Chloroquine. There was much promise about Hydroxychloroquine and Chloroquine. But again, in an incredibly quick, and there was extraordinary scientific evidence, sort of associated proof that this could be a highly effective prophylactic agent. As it happens that more and more data has come out to suggest that even if there is some effect, it’s going to be so marginal that it’s not the juice isn’t worth the squeeze. So we have decided, as a collaborative, that we have to stop Chloroquine now, we were ready to go, so we’ve had to pull everything back. And we’ve gone back to the drawing board to say what else is out there, and we now have quite a list of potential agents that could be prophylactic based on how they work in the lab. They work on other SARS type illnesses. Leading amongst them at the moment is this concept of using another kind of vaccine. They stir up the immune system in an innate nonspecific way. It gets our sound old immune systems to get revved up to take out invading pathogens, of which COVID may be one, which is the most prevalent at the moment. So where I’m going with this, and I think these this forum and other forums will be hearing more about this, I don’t want to be sort of steal the thunder of the South African PI’s it’s Bruce Picard and Sinead Delaney-Moretlwe, but telling you what. This the new news out of the boxes at the vaccine MMR measles mumps rubella looks like in the test tube in other Ecological Research seems very promising that it can have this role. And as I say, we can do another webinar with much more detail. But to tell the people on this call now that we are pursuing whether the MMR vaccination now this is to adults as a booster could well be a prophylactic measure that could get the health of the immune system geared up to fight COVID if COVID is encountered, so that is where we are at the moment with Crown.
What are your thoughts on the current BCG revaccination trials that are happening?
Yeah, so you’re quite right, that it’s a similar kind of thinking. I’m going to share a sort of question on this one because we have such a lot of TB infection in this country. So unlike the first world, where TB infection is rare, right, because they have controlled tuberculosis by large. In this country, TB infection is rife. By the time a child in our communities is five, one in five will have already become infected with TB. By the time they are 15, one in two are infected with tuberculosis, and just about all of our adults, 80% of adults in communities, and this is not healthcare workers. These are people in communities who have been exposed and infected with tuberculosis, so we have an enormous force of infection. Hence, my somewhat snide comment about the fact that there’s been so much focus on COVID when we have an airborne disease that we’ve kind of ignored and lived with for a long time that claims, you know, almost 80,000 South Africans every year and seems them to their graves.Nevertheless, here we are. With that force of infection, I’m surprised that we wouldn’t benefit from almost boosting our BCG regularly because of TB’s illness. So I scratched my head a little bit around the rationale BCG because we have such a lot of psycho circulating mycobacteria already some I’m sort of surprised that the antigen is seen as a novel by our bodies. So that was the one question in my mind. I haven’t delved into it as profoundly perhaps as those who are leading the studies may have. I think you raise an excellent point about how much of the vaccine is available globally and are in danger of removing it from people who need it for that exact disease needs now? I think you raised a genuine concern a few months ago, do we have enough BCG in the world because there was some shortage. To my knowledge, I don’t think there’s any shortage of MMR luckily, and we have looked into that. There are at least two or, you know, Pharma that provided in this country alone, so, and they have not indicated any anxiety about being able to lay hands on sufficient files. So, you know, I think we have done due diligence around MMR’s availability
Buddy delivery ART in those homes will be slightly difficult do you think a parental waiver will be important?
Yeah, so, and I’ve seen Cathy’s on the call, so she might want to weigh in. She’s my go-to. She and Anne are my good ethical go-to gurus and on this, and they’ve written such a fantastic amount of work about children’s involvement in research. So we are trying to follow the principles we’ve learned from them and others over the years. And the problem with kids who live with HIV often is that there isn’t a legal guardian. Just by the nature of the thing, there usually isn’t that availability, so we never want to leave those individuals out. So the way we’ve approached this is not necessarily meeting a legal Guardian’s consent. Still, at least have the permission of somebody in the home, an adult, whether a caregiver or somebody older, recognizes that there may be unintentional stigma related to bringing antiretrovirals into the house. Secondly, the adult, these are older adolescents, they’re not children. And so they have autonomy. And they have a right to their health, and they certainly believe they should be transitioning to managing their situation and their condition. So there is a discussion with that individual, whom do they want to involve? How do they want to involve them, and then, obviously, try to use our informed consent principles as carefully as possible? Recognizing that adolescents are not admitted to providing consent legally in this country, but this is where, again, working closely with ethics and with the community we have been, sorry about the dog in the background, not quite sure what’s going on. We have been able to work with individuals and understand that tension between the right of that individual transitioning to adulthood is the full embodiment of legality and coming of age. So these are meaty topics. Together with our ethics committee, we work very closely with our community advisory board to understand what is acceptable, what is not permitted, and what will be done safely. And also, recognizing that good participatory practice requires the adolescents to weigh in. So we try to do all of the above when we do that, but you’re right there. If done hand fisted, and it can cause a great deal of harm. So our principle is first not harm. I think this is an important area to research how we can reach out to adolescents when physical contact is not possible, such as we’ve just experienced with the COVID lockdown.
What are your reflections and your thoughts on the route that stigma could take in the context of COVID? Specifically, your ideas around its similarity in how it was initially presented to the public with TB in coughing, difficulty, or breathing? And do you think there are any specific issues we need to keep top of mind when we start thinking, or when we continue thinking around stigma when it comes to COVID? in particular?
Yeah, and, you know, I think the issue here, the common factor in all of this is the notion of infectiousness, right? So it’s the contagion. You can cause the disease in other people, whether I internally feel that I can infect others, or whether others accuse me of being the infecting agent. And this is where, you know, I even reflected a little bit about a tweet I saw the other morning, and I didn’t read the whole context. But I understand now, head of health was quoted as saying that the Cape Town epidemic was seeded from Europe. And I reflected on that for a moment and thought, you know, I wonder why he felt or why the headline and I’m not saying he thought he needed to say that, but why the headline picked up on that because somehow we always want to find the source, right, we want to lay blame. And, and I feel, I think that feeds into the stigma. I believe good news now that we’re moving away from saying mother to child transmission because that immediately fingers the mother, doesn’t it, and when we ask somebody living with HIV, how Did you get it? I mean, to my mind, you know, unless there’s a medical, biological reason to know, why do we care how somebody got the infection? And, you know, and I think all of those ideas feed into stigmatization and of course, that’s where COVID comes is. If I’ve got the disease, where did I get it? And because of our contact tracing approach, I think that underpinned the who gave it to whom. I’m very aware that even if there are trace reasons, research, you know, there’s a grave danger there, like who passed it on to who’s a granny dies who, who brought it into the home because now granny is demised, you know, so there’s enormous potential for blame. And I think too often our public health messaging is one of naming and blaming, shaming people.Again, you know how we get people to change their behavior by bringing up the positive social value of doing something rather than shaming and blaming. So I’ll never forget, you know, that morning after lockdown when all the people were out on the sea point Boulevard getting fresh air. I felt like the rest of the country was furious with Cape town because they will move to it and do what we do: walk-in cycle and, we’re unstoppable in that regard. But that kind of immediate shaming thing when maybe the other thing is to look at positive public health messaging to get people to change behavior, for positive reasons not to feed the stigma that immediately follows when you know when there’s a negative connotation. So yes, I think the shared problem that HIV, TB STIs, and COVID have is just this who made me sick? And how did I get this thing? And, and everything that goes with it.
So what are your thoughts when you see the seemingly uptake in the anti-vaxxer movement?
Yeah, Tian, you’ve touched on just great thoughts here. I would only recommend people follow a person I think writes terrific stuff about this. Doing excellent work is Heidi Larson at the London School. She has taken very much focus on HPV but vaccines at large, and she’s taken this on as a life mission. And so if anybody’s looking to read some good stuff, seek out Heidi Larson’s work. I think you right, we have to understand this machine is funded at the highest level by highly well-resourced individuals, and that, for me, is the most sinister of all, because, you know, there’s politics at the back of that. The agenda is much bigger than all of us in that regard. So I agree that that needs, you know, work at the sort of highest level that may be out of touch for all of us. I think this is the response I take because I am doing what you’re suggesting that those people sit on the fence and are not well informed. They are tipped towards what sounds like propaganda always has an element of truth, right? Or a conspiracy theory might have some nub of truth in it. So they get tipped in that direction with that, and then they fall into that category. How do you know? Can we pull them back with good evidence and the right information and my responses? That is all I think I can do is, you know, work on that group of individuals to flood useful information. I hesitate to take on. They’re sort of full-on conspiracy theorists. Because you often find yourself in this sort of polarized, almost irrational situation where you get pulled down a rabbit hole. Before long, you know, you’re not even sure where the conversations are going anymore. So I think my rule of thumb is to stay on the Hot ice what evidence you have kept bringing back that an appeal to the rationality in those who have not yet completely converted. It may sound a bit defeatist, but I think they are individuals who need to, and hopefully, they are the little fringe who are gone. I’m seeing somebody who’s getting much publicity now in the States with some out-there theories. And again, sadly, an influential person in America is going down the road of feeding into that stuff. They thrive on that there’s not you know, there’s the 15 seconds of fame side of that, which is not grounded in sound research. It’s not grounded in this is not around cultural belief. So this is, you know, really snake oil kinds of ideas and thinking. We had …… years ago. Maybe everybody was not old enough to remember. He was a well-resourced, highly intelligent human being, who was nefarious in what he pushed and pulled some unsophisticated individuals in with him. Now we could have rescued some of those rough individuals with useful information. When I say unsophisticated, I don’t mean unintelligent at all. They’re highly intelligent, just not hands-on, on factual information. We can transmit reliable information and help those individuals make up better decisions. I think it’s an incredibly challenging space. And others may have other ways of dealing with it that that certainly is my approach. And my favorite hashtag is vaccines work, and I drop it all over the place because I believe it in this world, we see longevity as we’ve never seen before. And that is due to vaccinology. And do I think we’re going to, you know, treat and Personal Protective Equipment (PPE) our way out of the COVID response? Probably not, unfortunately. How do I see an end to COVID? Perhaps with a prophylactic vaccine. So this is where, you know, we have to keep believing in this and giving it our full support. And now I’m talking to the converted here. So there it is.
How long do you think it will take us to access the Dapivirine Ring?
Oh, Yvette, from your mouth to God’s ears. I hope not long. I’ve been in touch with Vida Rosenberg directly. She tells me that they’re in the manufacturer as we speak. So that’s the right thing we have rings, and I understand they are making them even as we speak so hallelujah to that. And I know the section 58 thing means that it does move more quickly down the road to our regulators, so the Institute of People Management IPM will have to lead that, and I know that they’ve got South Africa in their sights. We now need to engage with South African Health Products Regulatory Authority(SAHPRA) then with the National Department of Health (NDOH). I’m delighted to see that; God bless them, Hessina and Yogin still seem to have a stake in this even though he’s moved on, are interacting around the ring. So unlike before, where we had to push it into people’s faces, I’m pleased to see that it looks like the impetus is almost just starting to happen. And yourselves, together with other organizations such as AVAC, are pushing immediately. And so I think I would like to say that I think it kind of depends on us. How hard do we move? Let’s see a civil society agitation for this sooner rather than later so that people feel the pressure from the get-go. And I think let you know all let’s go for it.
What are the top two lessons that you’re that you have taken away at this stage? Since the advent of COVID, could you speak to one programmatically and one personally?
So programmatically? I think I have, it’s forward, beware of unintended consequences. And, you know, I think that when, when the history books get written, there will be much reflection about what we did, right what we did wrong. Again, it’s not naming and blaming things. It’s just how are we going forward? Be sure that we have thought about all of the unintended consequences and leave it a little provocative, but maybe all of us can always reflect on that. Our actions may have unintended consequences, and we need to get better as humanity to think when I do this, what is the other effect other than the thing I was hoping to get? So that would be the one I’m going to try and myself, get better about doing that.I have learned from this, I guess, how much human beings do need people to contact. I have suffered a great deal, and I think it’s because I am a people person and do not regularly see my people. The health care workers space now feels quite alienated in that we are always on our guard frequently. Our patients are at a distance. We’re still aware of this new thing, and I’m surprised because we somehow got so comfortable with tuberculosis. It’s fascinating, but I think the personal piece here is just I’m being reminded that we are a species that thrives on that contact. And so I think we have to think through as individuals, is there some sort of substitute for a screen sufficient? What else can we be doing for each other? Or how do we get the resilience within ourselves? And but I’m hoping this isn’t, you know, going to be a forever thing at all, because I don’t think will thrive