Sibongile Tshabalala, Chairperson of the Treatment Action Campaign

Moderator: Tian Johnson

Complied by: Anna Matendawafa – with inputs from Wilfred Gurupira & Maaza Seyoum


Webinar Recordings & Supplementary Materials

Date: 22 October 2020


Sibongile Tshabalala. She is the chairperson of the Treatment Action Campaign and partner with the COVID-19 Conversations weekly webinar series She was diagnosed with HIV in 2000. Sibongile is not only a positive inspiration for people living with HIV but a social justice activist on health and rights issues affecting women and the poor. In 2009, she became a member of the treatment action campaign first Laura’s branch in the Gauteng province of South Africa. And in 2012, she was elected as the provincial chairperson of the Treatment Action Campaign Gauteng. In 2015, she was co-opted as a national Deputy General Secretary. In 2017, she was elected as the National Chairperson of the Treatment Action Campaign. Her leadership and voice have helped raise awareness that local and international platforms, including the International AIDS Society conference. She’s an Honorary Fellow at the Steve Biko Center for bioethics.


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

What is your experience been as the TAC engaging with the existing cancer movement? We think of cancer for that outside of the space; we think about all of these organizations that seem to have pretty impressive coverage and reach from the outside. What do current partnerships look like between HIV, TB, STI space, and cancer? Comrades?  

Yeah, quickly, if I may respond to that question, Tian. Yes, for instance, TAC has a partnership with Cancer Alliance. But the challenge that we still have the way of doing things remember, TAC, is not as much as we do writing, advocacy, writing those letters, and all those things. Still, we believe in doing things on the ground at things physically, and we believe in pushing so that the bottom advocates, it’s not for us, and it doesn’t talk to us. So, in most cases, when we want to engage issues, we are a bit distant because the people have to be at the forefront. They believe in the boardroom advocacy; they believe in bending tables in the boardroom, while we believe that we should hit the streets and make noise until we are heard. So there is a lot, and the like cancer groups are not there as much as they are organized. Still, they are not structured as organizations like us, where you have significant membership, which you meet now and again, making it a bit difficult to continue to work together. But we are continuing to work together. We are trying to find ways of raising some challenges. The Friends of Tech are doctors; they are assisting where we get challenges underground where we see that maybe a patient is sick and not accessing services to say okay, what can we do? Can you please assist us? But we feel like that is less than what we can do. If maybe it can be a more effective campaign. We feel like we can save more lives. And if the cancer equipment can be made available to almost every hospital, I think more lives will be saved because some people are unnecessarily dying. They could see the death that could be prevented by accessing services. Still, because it was made to be so expensive, cancer treatment, cancer, machinery, and all those things—people cannot afford private hospitals and afford those amounts that they are charging. So which makes people die. That’s why the issue of IP we cannot live without each.    

A recent study published in the South African medical journal found that people with HIV and TB may also face a heightened risk of death from the new corona virus. And you touched on this briefly. But if you could expand a bit, do you think enough has been done in terms of messaging, access to information, PPE, and care to address the increased risks common living with HIV and TBI experiencing? And if not, what do you think are some of these low hanging fruits that could be achieved? 

I don’t think there is enough messaging on that. And  I don’t think there is much said that was set around COVID and people living with HIV and TB. And we felt ignored or not catered for as the government felt like now because there is COVID. They should all focus on COVID  because there is money, funding for the public, and people who live while living with HIV. They didn’t even care to say how we are accessing treatment. What message is sent to impoverished people on the ground, especially those living with HIV and TB? And what I think should be done, honestly. Remember, you know, and continue to refer to the history of HIV for us as a country to be where we have been, we haven’t won the fight, but we have made a difference. And we have gone so far. So for us also to fight COVID, we need to be interested. We need to work together. The government shouldn’t sideline other people living with other chronic illnesses because it could burden the government or the public healthcare system at the end of the day. And we see now that since the lockdown, it has exposed our healthcare system to say how bad it is. And we’ve been saying this for years to say, and our healthcare tells us the system is in crisis. But nobody listened to us. When it was exposed now that they cannot cater to South Africans, they cannot cater to South African people. So this needs us to work together. And the government needs to listen to people and us on the ground because we have more experience we might not have the PhDs and what not. But at the end of the day, we have the life experience of how we are accessing services. We know, I know for a fact that how it is to live with HIV. And I’m sitting here, and I’m scared that if I may be infected with COVID, what will happen to me. So I will try to make things right and try to get the messaging as much as possible, as the person who’s affected. So they shouldn’t leave us behind,  why their slogan all the time, they are saying leave no one behind. But all the time, we are left behind. Like even now, we felt like we are left behind. And they were doing their things now because they are failing and they are done chowing the money. Now they want to come back to us and come up with possible solutions, which I don’t think it’s fair, but because we want to survive and live. We’ll continue to work with them.   

What are your thoughts on the recent South African study that found that a substantial number of women with HIV became obese on the newer antiretroviral drug regimens? Do you think this is a cause for concern?

Yes, I think that is a cause for concern. And I’m a living experience of that. I switched my treatment in February this year. And I thought maybe I know, I’m gaining weight and becoming obese, and I thought perhaps stress.  I couldn’t believe it, but after I’ve learned that TLT one of the side effects, it’s obesity. That is very frustrating, and because you know, all of us that cause other illnesses. So if women were living with HIV and take, it will mean we’ll have more women who are who will gain weight, which they are TND courses, and we are not comfortable with.We know women would like to be a bit skinny, we want to be sexy, and all those things. But there are those women who appreciate being bigger. And you know, but everyone has to choose at the end of the day, how do I want to look? I don’t have to be forced by meditation to look like this. Remember the days of travertine? How it was deforming people and how people looked at that time. So we don’t want to go back to that. As much as we need new inventions, we need better medication with fewer side effects. At the end of the day, it’s concerning, but then that is a discussion that we still have to talk about as women who are living with HIV to say, what do we think about this? Because at the end of the day, it will mean that most of us who are women, and most people living with HIV will be left without treatment and will be left stranded? And what would that mean to our future generation and our communities? Because without women, there is no, there are no communities.   

We have seen over the past week TAC has been monitoring some healthcare facilities in Port Elizabeth. And of course, we know, this is national. Has that helped in the provision of services given to people who are forced to stand in queues outside clinics? So are we already at this relatively early stage seeing the impact of Ritshidze and how communities experience services at community health centres?

Yes, and if I may talk to the experience of PE, it has helped a lot. As I’ve said, we continue to have engagements. It has taken government officials out of their offices to work on the ground. We have constant visits with them to the facilities, talking to patients and the health care services in those facilities that were identified; at least it’s improving now because there is something that is happening, and there is advocacy done. So yes, Ritshidze has made a lot of impact and advocacy on the ground. Because when we see things that are not going right, we just attend to it right there and then. And we are right, by all means, to say it’s getting solved. And it has opened doors for us to talk to big funders, like your CDC and USAID, which are influential to the government. Even the government, because they don’t want to lose extra funding, they are toeing the line. So it has worked to our advantage, but most excitingly, with Ritshidze, it has given people living with HIV opportunities, people on the ground. Because most people who are field workers of the Ritshidze project are people living with HIV, are women, and are coming from poor communities. So there is a lot that is happening, which is very exciting. When you talk about Ritshidze

You know, you spoke about what has been happening in the Eastern Cape. And I mean, I think that’s heartbreaking for so many of us just seeing this constant narrative from that particular province. But specifically, when you spoke about community members being shot at by police, it made me think about tax roll it within the region. Indeed, we’ve seen this uprising of young people, whether it’s Nigeria, Zimbabwe, and activists interested in Uganda. Could you speak about some of the lessons that the TAC has taken from these very localized issues and apparent government instances and its heavy hand on its citizens? And how are these applied? If at all in the region? Does TAC  have a presence in the region? And what does that look like?

Unfortunately, we don’t have a presence, but we have partners and supporters, which we always contact. For example, we have our comrades in Zimbabwe, which we always talk to them and give us a snapshot of what is happening in Zimbabwe. And lately, we’ve been thinking of a way of supporting comrades in the other regions as well, Nigeria and other countries. We see that there are still many challenges, and there is a lot of police brutality. And we know even in South Africa is that police brutality, but it’s not like in other countries, as you stated earlier. This isn’t comforting, especially, you know, Tian, when most countries are free countries. And, you come to ask yourself to say, we were liberated, to be abused. Actually, what should we do because I’m raising my voice to say I need these services. And somebody decides that Sibongile has to die just because she has a loud voice or makes too much. that is a violation of human rights. That is disrespect of human rights. As activists in South Africa and activists in the region, we need to mount that partnership as much as we have. But we need to stop to have this formal partnership; we need to have an informal alliance, where we’ll talk daily to say this is what is happening. And we are seeing this happening in this country. We go to the Nigerian embassy and say, Stop this now; while we are here in South Africa. But you know, these four milestones, platforms, tend to formalize more of what interrupts the process. So, as a region, we need to call for informal civil society and see how we support each other from one country to another.  

How does TAC  view the state of civil society unity in this country?  Are there missed opportunities? Because we don’t have a united front?  What do we need to do about that? It’s an elephant that has been in the room for decades. And for a whole basket of reasons, it hasn’t been addressed or taken on whether it’s funding reasons or political reasons or personal ego reasons or personality clashes or whatever it is. As a leader of an organization that has been lauded globally as almost the gold standard of activism of bringing communities and people together. What is on your mind, what is in your heart, about the state of civil society today?

And I want to be honest, and this is always in my thoughts. And let me start by saying as TAC and PLHIV  sector if you listen to me, I kept on referring to PLHIV sector, which was never, it was not happening for a very long time. So we decided to say we want to be united. And we want to put our differences aside as people living with HIV because we saw that people have or government and other sectors have taken advantage of us because they could see that we are not united. They will go to another group and say this group is wrong because of this, and make you believe that whatever is happening, it’s not right. But at the end of the day, we are fighting one enemy, which is HIV. So we started to say, how do we unite the sector of people living with HIV? As I’m talking to you now? Yes, we have challenges within the sector; we have our differences at some point because we are human beings. But we always find a way of working together. And we disagree to agree at the end of the day because we all know what we want. And I feel like that is the starting point.  To say we need to understand each other first, you need to understand that how is TAC working? How is NAPPA working? How is Positive Action Campaign working,  so that it would be easy for you to understand to say, okay, this is how they do things. This is where we fit in as an organization, and we can be able to be united, that is the starting point for us. And we think that it will grow as we are talking about reaching a successful project. It’s because of the unity of people living with HIV. So TAC cannot take credit alone, it’s a unit of people living with HIV.  Going to the broader civil society unity. This, it’s okay too we need to be united actually. But also we need to hold each other accountable. By the way, we hold each other accountable at some point, and I feel it’s wrong. I think when we hold each other accountable or want to understand what is happening from one organization to another. We need to be respectful of that. And we need to engage the affected team to say this is what we get, what do we think? How can we support? Where can we come in, if we can use that strategy, it will be easy? But now what we’ll see is that the organization is waiting for another organization to make a mistake. And then we’ll run to social media and shout about that. I don’t think that is how we are going to build unity within civil society. And also we need a civil society that has had as it has a lot of people attacked and left people from the ground. And honestly, what makes it difficult for now for us to work together is that some of the organization they’re only after funding. Still, if there is no funding, they cannot do anything people on the ground are left stranded and some you know the corruption we are talking about on the side of government. The unfortunate part is happening within civil society. And because we are in the space, people they want us to be like, okay, it’s okay because it’s your comrade,  if your comrade is wrong his wrong. But let us not take everything personally. Because we try to work together to say okay, you have made a mistake, this is how you’re supposed to implement this, but you did this, how do we come in and support you to do things right? I think by doing that, we’ll be able to be united as civil society in the country. We had seen that starting to happen when the lockdown started when the  C19 People’s Collision was born. And I was very excited to say this is the first, all organization of civil society in one room, you know, we are talking the same language. However, others are focusing on Grant others are focusing on economic status. Others are focusing on health and other issues gender-based violence, but how do we take that strategy and move forward? Which is unfortunate, because, along the way,  the thing of knowing that I’m leading, and all of us want to lead by being exposed, or by being popular, that also kills our unity as civil society. So there are a lot of missed opportunities I can talk about, the opportunity of engaging government recently on the issues of COVID-19. We missed that opportunity as civil society. There are a lot of fights that we could have won together. the issue of funding, irrespective of which funding it could be HIV could be or  SRHR  and others, I think we could have won the issue of funding because there are organizations that are closing down now and because of funding. But if we were together, we could be able to say how do we advise each other so that people can report the way they are supposed to report? Or how can they use money adequately so that they can be able to sustain their organization? So those are missed opportunities, which I feel like if we were working together and allowing ourselves to be criticized respectfully? We could have been far. Thank you

What today would you say has been TAC’s biggest challenge? And what to date would you say has been TAC’s most notable success that you are proud of? So your most difficult moment at the helm of TAC and your proudest moment? And I’m sure there are many but if you could give us a broad reach.

Okay, and today’s challenge in TAC, to be honest, it’s an issue of leadership. We have a big challenge in leadership. And, we are working very hard to try to build the next layer of leadership, and you know, poverty has taken over where people feel like they will use organizations like TAC to expose themselves and then after that they leave the organization which is okay. But then how do we sustain the leadership within the organization and poverty it has exposed people to so many platforms remember when you’re a member of TAC. You are a leader of TAC you will be required to go and sit in those structures like your district, provincial AIDS council. You’ll be taken to fancy hotels which you cannot afford, and you’ll be given that R180, R250 plate which you cannot afford. So then your loyalty now tends to shift from what the organization mandate is, and you want to associate with people who would open opportunities for you. So that is the biggest challenge that we are facing. And successes I think me if I may just say for now I will talk about the Ritshidze it’s our success which we are very much committed as TAC.  In Ritshidze we are putting 101 % energy on to it. Yeah, so far it’s our success. Also, another victory that I will never forget. We have more young women within the organization now who are part of TAC, and who we feel like will grow to be excellent leaders in the near future?  

In the space, there’s politics; there is backstabbing, there are agendas, they are egos, they are resource battles, they are space battles, once all of that is set aside. And when hopefully at some stage, you get home, and you have a chance to breathe, or when you wake up in the morning, what keeps you going, it’s a question that is asked over and over. But what keeps you in this space, what drives you on doing this every day? 

I honestly I’m from a family that is, so you know, my parents, they love people. And when you come to my parents’ house, every time they are visitors, we don’t have time for us as a family. So I grew up in that kind of family space. And I have a lot of support from my parents, which I cannot thank them enough. And the love that I have for communities or people on the ground makes me wake up, even if I don’t want to wake up. Sometimes I would come back and say no, I’m done. It’s over, and I cannot do this anymore. I’m tired of everything. And I want to switch off my phone; I want to shut off and be in my own space. But I can’t, especially when you are in the community that I’m living in. I don’t want to relocate here because it always connects me with people. You know, when you are at my house,  my last row is my house and the back of my house it’s informal settlements. So every time I want to go, I even open the gate at the back. So when I want to go and I go there and see how people are doing and how they are struggling. And that tells me that  Sibongile you haven’t done enough. So you have to wake up and do something. So that drives me,  that makes me wake up even if it is hard.  The love of the people and to want to change people’s lives and give people communities a better experience. I know I cannot do it alone. We have to be together, and we need to work together. But I believe that one little change means something. And that makes me sleep peacefully at night. At most times.