Fatima Hassan, Founder of Health Justice Initiative
Moderator: Tian Johnson
Complied by: Anna Matendawafa – with inputs from Wilfred Gurupira
Webinar Recordings & Supplementary Materials:
Date: 05 NOVEMBER 2020
Fatima Hassan,is a South African human rights lawyer and social justice activist. She’s the founder of and heads the newly established Health Justice Initiative in South Africa and is the former executive director of the Open Society Foundation for South Africa. She has dedicated her professional life to defending and promoting human rights in South Africa, especially in the field of HIV and AIDS, where she worked for the AIDS Law Project and also acted for the treatment action campaign in many of its legal cases. She has a BA and LLB from the University of the Witwatersrand and an LLM from Duke University. She clerked at the Constitutional Court of South Africa for justice Kate O’Regan and has served as a special advisor to the former minister Barbara Hogan. She’s the former co-director and founding Trustee of Ndifuna Ukwazi and previously served on the Boards of the Raith Foundation, SA Medecins Sans Frontieres Without Boarders (MSF-SA),the International Treatment Preparedness Coalition and the South African Council for Medical Schemes. She’s currently serving on the board of Global Witness. The recipient of several fellowships and awards, including the Franklin Thomas SA Constitutional Court fellowship, and the Tom Andi Bernstein Distinguished Human Rights Fellowship at Yale University School of Law, she has published and written on issues related to social justice, and HIV and AIDS access to medicines. She’s also the host of a special COVID-19 and IP related podcast called Access.
QUESTION AND ANSWERS
*This section contains a transcribed account of the Question and Answer Session
What similarities do you see now, between the access issues, the work with Pharma , the cause for accountability and transparency around HIV to COVID? Is it the same? Do you see some differences in terms of how the maneuvering and politics this is happening?
So, I’ve been thinking about this in some respects I think it’s worse right? Because we started this pandemic and globally, the declaration of a public health emergency and multiple lockdowns in so many parts of the world and rapid infections and immediate hospitalisation. And then rapidly, over a million people are, within months have been estimated globally to have died of COVID related illnesses. So we thought that, well, this is the one time where people will act differently because everybody was expressing immediate solidarity, they saw the socio-economic impact of this pandemic. So I anticipated that it was going to be very different, at least for the first few weeks. Still, quite soon in, you know, already by March, we’ve been cautioning and issuing the warning bell that if you don’t watch multiple processes and systems, the same thing will happen and in fact, it would be worse. Because what you have is a situation where people are taking advantage of a very immediate life and death situation and a very immediate economic needs situation because it crippled the global economy, right. I mean, the various lockdowns and the fact that there is no vaccine is yet effective, there is no effective treatment is yet. There is only …………and oxygen for you know, hospitalised patients or severely ill patients. So we anticipate the response would be different because people were saying that but as often in the health space, and relation to the development and production and research of vaccines and therapeutics and diagnostics. What we saw quite early on was this very intricate, brilliant maneuvering around how to extract as much profit as possible. So we’ll give little concessions here. We can view maybe a licence will agree to no profit fee in that part of the world, but not that part of the world. And so, very early on, like with HIV AIDS, we saw that people were trying to play God. So sorry, apologies to the atheists. But what you have is the equivalent of a drug company that is an unelected structure. Or a multi-layers multilateral institution that is not elected by people that is not accountable to anybody. That has either a group of shareholders or a group of advisory board members making decisions that will have an impact on the rest of the world. Which we couldn’t, which is difficult to hold them to account. Because when you want to hold the pharmaceutical industry to account, you have to do that in each country, you have to do that regionally, and you have to do that at the WTO. And so despite what people were saying, despite what CEOs are saying, and presidents and prime ministers and government officials, and what officials at multilateral institutions from WHO to UNAIDS to GAVI, to a range of different institutions were saying, we weren’t seeing, you know, Ealse always used to say to me, from March already, where are the written assurances? We are relying on a press statement; we’re relying on charity, a good way is the written assurance. Where is the written agreement, because without what we’ve learned from HIV is without something in writing, without a firm commitment to affordable access, to proper allocation, to equitable allocation. You’re not going to get it we’ll be fighting for the next ten years to try and get a fair price. We’ll be fighting for the next few years just to try and have a fair allocation framework. And I think, you know when you’re asked what the similarities, no transparency, very little transparency and accountability in the middle of a pandemic are. Within a space of a few months, we already have activists around the wall having to do access to information applications, having to litigate, having to make demands and different governments to say, what have you agreed to on our behalf? What have you done? What have you not done because remember in South Africa, there’s also a state duty to do something that it hasn’t as yet done? It’s you know, it’s a mission. It costs lives, or it’s positive action is costing lives so. So the similarities are there, and for me, the most is, and why it’s weird. It’s kind of fallen on the laps of former HIV AIDS activists to do a lot of this ringing the bell in doing this work because we’ve had experience with these companies. A lot of these companies are the same companies that we’ve had to deal with on HIV AIDS, and even other activists have had to deal with TB. So we don’t necessarily feel there is a good track record. It’s not all of a sudden with COVID you’re going to become this organisation or pharmaceutical company that is so committed to transparency and so committed to the public work. That you’re not interested in making lots of profit in the quickest way possible. You’re not all of a sudden going to become a drug company, which is to the US government to the UK Government. Hang on. If you order 100 million doses of the vaccine in advance for something that hasn’t even yet been proven to be effective, what about the countries in the south? What about low and middle-income countries? No, that those are not the conversations that are happening.
I think we were right, already to be concerned early on. And I think we are right. And my concerns when you say it, well, more first, we were talking about, for what worries you and what keeps you up at night is that we’ve got a limited period. And we need to up the ante. Because in 12 months or 24 months, when the vaccine is a reality, we hope and potentially could be available. We need to know what are we going to have to pay for it? How will it be rolled out? What’s the manufacturing capacity in the region, and particularly in Africa, and then obviously, the rest of the global south? And who’s profiteering from this? So I think that the conversations around corruption and around (PPE)Personal protective equipment and about government’s role in that affair legitimate unnecessarily because we do live in a country where there’s just been a rampant rampage of state resources. But equally, so we need to be having conversations around what is the role of those people who broke up power? And so early on when you said, Who are the players that broke power? So I mean, it’s apparent that it’s our government. It’s the pharmaceutical industry. And it’s multilateral institutions, I think, and funders and donors, which have a lot of influence in this process. So at the moment, if you say to me, well, who are the role players, I’ll give you like this long list, because it’s so convoluted. And there are diagnostics; there are vaccines, there is treatment, I mean, there’s PPE. So there are so many different components to COVID. And there’s so many other if you want to call it audit trails. I mean, there are over 200 vaccine research candidates. So asking a global community of civil society to keep track of each of those 200 vaccine candidates, that just vaccine candidates, the transparency elements, the access, the research protocols, the prior access agreements, advanced purchasing agreements. I mean, you’ve seen reports by Human Rights Watch by Amnesty, by Oxford, I mean, everybody is trying to keep up to speed, and things change so fast. I mean, the goalposts are moving so fast. And I think that, sorry, I’m going in circles. Still, that one of the differences with HIV AIDS is that never and you know, somebody on our advisory group, who’s a well-respected clinician has said this over and over again, it this is unprecedented. It’s remarkable, the scale and pace of research, and the volume of research that is going into one disease. Right. And, of course, the global players have decided that’s what’s necessary and essential because I can transmit COVID to you very quickly without a mask and hand washing, and it’s crippling economy. So they are also vested interest in making sure that something can be developed for the market to make sure that people can reopen the economy and reopen their livelihood. So I think this is the real thing that concerns me and the most significant difference with HIV AIDS, and I see questions coming up on the chat group and help me there Tian is the pace in the scale. I mean, we are a dedicated unit trying to focus on this, and we can’t keep up to speed. So I don’t know how we expect community activists and vulnerable groups and communities and people who work on Health Access generally, to be demanding a whole range of things from transparency and accountability, which by the way, I think in South Africa, we do not have enough of. We can come back to that later. And I believe that our government is failing us on the transparency and accountability concerning at least treatment clinical trials that are currently being conducted in South Africa and we can return to those issues. But yeah, just keeping track of everything that is happening does concern me, because we don’t know which of the vaccine candidate is going to be successful. I don’t know if you’ve seen any documents, but I certainly haven’t. I have read lots of press briefings, I have checked and open-toed shoes and all those kinds of things, which frankly, is for me, not the material things I want to press briefing on. You’ve set up all these maps, you’ve got all these advisory committees, we know there’s going to be a problem of supply. We know there’s going to be a problem of manufacturing capacity, we know there’s going to be a problem of fair pricing or affordable pricing. We have our government trying to mitigate all of that by doing different things in Geneva and doing other things that the EU and, credit to them for that, but I want to know from my government. Have you sat down and discuss what you’re going to do with scarce resources and scarce supplies. Who will get the vaccine first Tian, is going to be you? Or is it going to be your dad over 65? Or is it going to be the healthcare worker? Or is it going to be the security guard? Or is it going to be the train driver? And so I think all these issues around inequity and equity and equitable allocation, these are the hard decisions we can have to make. And if the trend is going to be that somebody is going to sit with a few people behind the scenes, and you can never release those deliberations. Then, people get fired for having a different view, then that’s not a good trend around transparency and accountability. So, let me stop there. And then we can come back later to the issues of how power is broken in intellectual property and pricing framework.
If you look at all of the work and perhaps resources that were put in, around the struggle for treatment, what infrastructure, what policy framework? What baseline are we using today, in all of these COVID related arguments that were put in place when the struggle for treatment happened or are we starting afresh?
So, I mean, I think the difference is that we have the same constitution. And fortunately for us, we have a constitutional framework, and we have Section 27, I think everything can be included in that. And I think that is what sets us apart from many other countries is that we still do have the right to access, to health care services, which is progressively realised over time. We can, in theory, still go to court and try and have that articulated and try to have their pride vindicated in peace. I think what we have which we didn’t have around HIV AIDS is perhaps a greater understanding of why the public treatment is so essential, that it’s not just some drug. It’s not just some car or a handbag. I think people understand the life-saving need and the desperation and the immediacy. And I think the lockdown is shown why fixing our healthcare system, why accessing quality health care, and life-saving interventions are so critical. And so I think that there is, at least a different baseline from which we will come. I think what also is different, and I think we must take more advantage of it, and we must leverage it is we don’t have a denialist President. We don’t have a president that does not believe in science and evidence. So well, you would think that that’s normal, but in South Africa, we have to celebrate that, right. So unlike, for example, the Trump administration, or many, the Brazilian government, there’s a lot of anti-vaxxers in government, as in government officials, and people who don’t believe that COVID tests are legitimate. They don’t believe in the treatment of major chronic condition. So I think we had that and we know what it was like, and fortunately, we don’t have to deal with accepting that’s done. The difference also because of that, and the cause, I think, not ironically, it’s because they’re looking at the bottom line. They realise what has happened to the economy, not just in South Africa, but elsewhere in the world is we started having developing countries. Surprisingly, ironically, I think the South African government goes to Geneva and starts making submissions, which are quite radical. I never even anticipated that they would partner with the Indian government which in itself is politically you know, regarded as a right-wing Nationalist government. But given as it may be South African and India goes and asked for a waiver from certain provisions of trips right. Now in HIV AIDS the fact that that took so long it took us years before we even got the DOD declaration or even some kind of recognition that in a public health emergency you can dispense with some of the rules around intellectual property and global trade rules so that you can either manufacture locally, or you can import a cheaper version. Or you can issue compulsory licences etc. So, for me that’s been quite surprising and like, on the one hand, I feel okay well, what is going on because sorry, I have to be the one that calls the double standards out. Because I think that’s the job of the Health Justice Initiative. So we go to Geneva, and we make a submission around how patents, our government sells us patents, our key barrier to access, life-saving interventions for COVID. In Africa, in other developing countries in South Africa, it’s complex, it’s difficult to use the ……. declarations have been used, etc. And this is the reason why none of us has been able to issue a compulsory license, right? They are saying this is on behalf of governments, and then they go with the Indian government. And they say, well, we want a waiver now, that’s quite unprecedented. And one would have thought that’s on Tian we’re talking about who are the power brokers. One would have thought that everybody is saying that we’re going to commit global solidarity to COVID, it’s unprecedented, we haven’t had a pandemic in hundred years, etc. Of course, the global north governments, and particularly the UK, and the USA, know, even with the scale of the pandemic, and even with the scale of the devastation, you won’t get your waiver. Right, but at home, so you know, you’re supporting the South African government, and you’re supporting the Indian government. And, you know, you’re calling out those governments that are opposing it. And remember that the lobbies that are behind those governments, those governments are not making those decisions, because they’ve done an assessment, they’ve decided because they’ve got severe vested pharmaceutical interests that they have to protect. And those lobbies have a powerful; there’s no way that anyone of those drug companies, despite all the public interest commitments that they’ve made, and commitment to global solidarity and no profit period for limited times, that they’re not going to agree to a waiver of intellectual property principles, during this pandemic. And I think that tells you where we are globally, in terms of what interests’ matter. And I think that profits matter than over lives. But locally, our government has done amazing work on non-pharmaceutical interventions. I think it has done right, by science and by the evidence. I think some of the decisions around lockdown work, but like silly, but I’ve been saying this since March, they’ve never once mentioned the drug companies of the pharmaceutical industry. They mentioned the alcohol industry, they’ve taken on the tobacco industry. We’ve had litigation and litigation around the hours and the curfews and stuff, but not in this one, they say this in Geneva, but on this particular industry locally they are silent. And I mean, yeah, fine. It’s nice to have a press statement, and it would be nice for them to talk about it. But what’s interesting is, we passed regulations, we’ve extended the disaster declaration, we’ve passed consumer regulations around pandemic pricing. We haven’t expedited the legislative agenda on two things Tian. Which could reinforce what you’re saying in Geneva in health care. And that’s the patterns Act. The patterns Act I consult advocate is a huge problem. It’s one of our biggest obstacles and access to fix it back inflow. campaigners have been saying this for years. cabinet approved IP policy in 2018. You had this pandemic, were Parliament could have expedited this legislative agenda, the Department of Trade and Industry DTI could have expedited, but it hasn’t. So we are still scared. We are still reluctant. We know the power of this industry. We know it from the PMA case we know it from a few years ago what Tech and other organisations called Pharma Gate. So we know there’s going to be lots of vested interest, but we are not doing that locally. The second thing that we haven’t fixed up we haven’t done is we have, frankly, an incomplete medicine pricing regime in South Africa to regulate medicine prices to regulate therapeutics, which includes vaccines to regulate the price of diagnostics and tests, etc. So we deal with the pricing of sanitiser and hand wash and face masks, but we’re not dealing with the bigger issues around structurally, how are we as a country? What, obviously impending national health insurance implementation? So I think what the pandemic has shown up is all the fault lines, it’s showing up all the vested interest, it’s showing the double standards, and it’s showing this very weird. I mean, I’m Assam. The President has signed on to the people’s vaccine pledge. He’s talking about an EU vaccine roadmap. We go into Geneva in saying quite radical things. But here we are not doing that. He’s never in any of his presidential briefings. Remember, we had to wait on Sunday nights. Like sometimes it’d be very late. But we have to wait on Sunday night during the lockdown, and the President would speak to us. He would talk about a lot of things, but at the heart of managing this epidemic at the heart of dealing with us is going to be accessible. It’s going to be fair pricing, and that involves dealing with intellectual property and property rights and patent rights. And he is he hasn’t talked about that. So we don’t know what is house thinking, because you do know that literal house governs the country, not necessarily the ministers. So we don’t know what their policy position is on this. We don’t know if they would be willing to issue a compulsory licence is that even territory they’d be willing to go in? Obviously, the question and I feel for them because they’ll be like, should we issue a compulsory licence? But on what? Which, at the moment? What do you issue a compulsory licence 200 potential vaccine candidates, three of which are being researched in the country?
I think that the only thing we can do Tian is to try and have a sense of what is going on, and for all of us to be vigilant in our different lanes. But to make sure that we demand an even higher level of transparency and accountability from our government, it can’t be, and I see Laura’s on the call. You know, who used to write for Bhekisisa. And now right for several publications, including the Mail and Guardian. Ponsto has been following those and Nelly has been following those, but it can’t be seven journalists in the country, again, like we had with HIV AIDS and a group of activists that are trying to figure out what’s going on. We should be asking much more of our government. And by asking much more, I mean, like asking detailed questions about all of their assessments and all of their plans.Because ultimately, they’re making decisions for us. Right. And it can’t again, you know, this will be my last point. I will come back to Tian is that we can’t also, I mean, we have a new administration, we have a new approach to a whole range of things, we have a president who believes in science, it can’t be our job, again, Tian to fight for the drug companies. I mean we will do it, we’ll go on the streets, if we have to, we’ll take them to court will challenge the pricing. But that cannot be our job; we are not that; there has to be a different reckoning. And, you know, early on in the pandemic, we said, this is our reckoning moment. And I think we need to see government stepped up in that. And similarly, we need, you know, we need activists to hold the pharmaceutical industry to account, and we need the activism on that, because that has shown to have worked, not just here, but elsewhere in the world. Some of the drug companies have committed to sharing some of the trial protocols, because activists push for that in you know, and including Astra Zeneca and Johnson and Johnson because obviously, this trial is also happening in other sites.
So Millicent is asking about your thoughts on the ACDC, the African Centre for Disease Control, that is trying, in her words to play the role of access and facilitate access for Africa? What is your opinion on how the African Centre for Disease Control should play this role? Well, let’s answer that one first.
So I mean, I think, all of us would expect the CDC to, we all going to say they should do more, and they should do harder, but I think they are operating within an ecosystem where they can’t demand more than they can, right. So they deal with issues around attacks on their legitimacy and credibility, and the purpose and the point of science and evidence. And so, you’re fighting for your survival, and you’re also trying to expand access. So I think they are doing the best within their mandate, within the resources within how they’ve been established. As an activist, I believe they are doing enough. Are they pushing the envelope? No, because I think this pandemic gave us one opportunity and one chance to push the envelope. Could they do more? Are they? And I think that’s the question for the South African government as well. Are institutions agreeing to things too quickly? And without considering all the different applications? So we’re so eager to get those edges and to expand access? But are we looking at the prior agreements? Are we looking at their longevity? Are we looking at what it means for trying to build manufacturing capacity? Because I think it’s it’s moving so fast that everybody’s trying to chase their tails. But I think the officials there are trying to do the best I mean; we can’t fault them for not working hard enough. But I think like most institutions like the WHO, like the UNAIDS, they are crippled, or they held hostage, I believe held hostage is probably the better term. They’re held hostage by compelling global interests that are backed by the pharmaceutical industry, and those global industries remember they are also from governments. I think the role that some of the EU countries, the role that the UK the Johnson administration and the Trump administration have been playing is not a very positive one. Because they are nationalism, there is a sort of tendency to hoard. There is a tendency, and we’ve seen it with advanced purchasing agreements. So, I don’t envy them. I thought if I work there, what would I do and what would I do differently. But I want to come back to, and we can’t put all our, I want to go back to the CDC because I think they play a specific important scientific role around science and evidence. They are not our government; they are not our elected officials; they are not the ones that we can hold accountable, right. We can critique them, and we can offer insight, whatever. But ultimately, we have to hold our governments to account, and we have to hold other governments to account when in the rare cases that our government locally tries actually to do something positive, that’s going to expand access is then prevented from doing so by vested interests of other countries. And so the solidarity issues, you talked about similarities with HIV AIDS, I think the solidarity between countries in the South and the North has to re-emerge. And so something like free the vaccine. The people’s vaccine is necessary small steps in trying to get international solidarity and activists from other parts of the world to help us with making some of these more hyper local demands.
Ntando is asking how well organised and equipped are we to be able to demand all of these things from our government? And he ends off with? I find that interesting statement? Who are in my mother’s words when we get off demanding these things from our government? What like, what do we have that allows us to have the chest and the liver to stand and make these demands? Who are we, Fatima?
Yeah, you know, so this is what people used to ask us in HIV. But who are you? Yeah, a bunch of lawyers and activists and what rights do you have and so, I think, what we have to do? I think that’s a good question. But I think what we have to figure out is how do we centre and it sounds like a flimsy word. But how do we centre communities and people who are most affected by ill health most affected by HIV by TB by COVID? And that’s everybody, as citizens, so I don’t mean citizens in the narrow word, in the narrow sense, we are using a xenophobic framework. So I mean, citizen as in, we are all part of some system, we all belong in some country, we know, some of us have the privilege of being able to vote, some of us live in countries where this thing hasn’t even been a free and fair election for many years. So I think the who we have to be the people who try and protect the rights of those who are most vulnerable and marginalised because I believe what’s going to happen is that when the allocation process starts, who’s going to stand up for people living with HIV, who’s going to stand up for the sex worker, who’s going to stand up for the refugee and asylum seeker and the migrant? So I think we’ve got minimal time to figure out our global solidarity strategies and our local solidarity strategies. I’ve also been struggling to say, Well, how do we create a community of people who are going to make demands? How do we get that same sense of solidarity that we had with HIV AIDS, and that we’ve seen on TV or we’ve seen with cancer? Because I mean, there are issues around the interaction between COVID and a lot of these other diseases. So I think that who we are, is, I certainly feel in South Africa that who we are is I’m a South African, who has elected this government to power. It must now serve me because my health is dependent on the government at the moment. And then its ability to navigate the very complex vested interests of industry and other governments in geopolitical because I don’t have the right to go in appearing before the WHO and negotiate, my government. That’s, and I know that it’s difficult for people in other parts of Africa, other parts of the global south because they may not be those systems. But I think we have to think hard about why we would think we don’t have the legitimacy to make these demands. So I know in South Africa, I certainly can make those demands because the constitution allows me to write. And so I think the framework and that’s, a lot of people have been writing about the globally the framework of global health of moving away from health as a commodity of, of centering human rights as part of our health response, not just to COVID but generally to all other epidemics and pandemics as well. That’s what we need to elevate.I mean, there are other elements of how do we decolonize Global Health, but not I think over time, we’ll get to that. So in I started with the Constitution in Section 27. But I think even if we weren’t living in a country with a constitution, the centering of human rights and human dignity, I believe in this whole equation has to be paramount and has to be central. The push back and I think the challenge that we’re going to have is why are we trying to promote a rights agenda; what we’re seeing is a market agenda. The market must self-regulate; the market will determine to price; the market has there has to be a reasonable return on profit. So the as with HIV is, I think, the profit plan. And that’s who they are, you know, so they feel certainly entitled to be pushing a particular agenda, who they are saying, The market will determine. We’ve invested all this money in these trials, and let’s come back to research and development and government funding. But their argument is we have invested all this money, entitled to a profit, hard luck for you, we’ll give you a few free supplies for maybe one year until the declaration by the WHO is lifted. I mean, the Financial Times got access to an agreement that Astra Zeneca had signed, which talked about July 2021. Right. And so there has to be a counter force. And I think it’s the old question, then of when we make these demands and articulate these demands. There are times when we will be in opposition to the government. And there were times when we will be in support of the government. So I’m going to support my government when it says those things in Geneva, but I’m not going to support what it’s doing here and what it’s not doing. Right. So let’s just circle back to the RNDM. And then take the next question. There is a myth, and I think our job we have to expose those myths. And MSF has done some fantastic research and reports on this, another organisation called IMAC has done it. KI has done this, to show that there is an assumption which we need to address in each one of our countries, that only the pharmaceutical industry put their money on the table, that only the pharmaceutical company spent millions of dollars on research and development when the truth is something different. Right. Governments have been putting public money in the US in the UK, in other parts of the world into these trials. And those figures are often available. And sometimes you have actually to fight to get access to that information. We found out that our government has put ten million Rands into the Astra Zeneca trial. But who’s going to decide access and who’s going to determine to price, AstraZeneca. But we put in our researchers, our institutions, our trial participants, and we put in money. Money that could have been maybe used for social grants, and but we’re not guaranteed, indefinite affordable access. So I think there’s a lot of stuff around who we are, and how do we play a role in exposing a lot of these myths in creating solidarity?Wherever these trials are happening to say, to the Brazilian activist, what are you finding out to speak to the UK and US activist, what are you finding out and already, which is quite interesting is that the UK and the US have got activists who started demanding access to all the funding details, to all the access agreements. We are in a country, which has this great constitution and excellent access to information laws, and all these briefings and this whole make, you know, the infrastructure around dealing with COVID. Nobody has seen the agreement between Astra Zeneca and the Oxford group. And we don’t know what the terms are. And we partnered with an institute at Oxford University. And so we learned from media reports, not even official government communications and the actual South African shareholders. The prominent one’s businesses who are shareholders of the Oxford group. So, there’s so much work to be done. And unfortunately, we can’t just rely on a handful of investigative journalists and, group of civil society to be pushing this demand for transparency. And, only on the final point of the transparency, is this the beginning to learn, if we push for transparency in the early stages of how we manage to spend them is going to be with us for years, then at least we make some headway. So that in five years, in seven years in ten years, we know a lot more than we do, you know, from the last seven months. I don’t know if I’ve answered your question.
What are your thoughts in terms of the current state of South African civil society, especially since the advent of COVID? And how divisions where they exist? Opposing views where they exist? How do we work in this context? To get everyone on the same page. Do we need to get everyone on the same page? Perhaps not? But how do we then find our point, which I imagine is a similar struggle that was had during the battle for treatment? How do we get this critical mass of civil society together with this singular focus, if that’s the desire to back all of these demands that we intend to make them are making?
Sure, these are tough questions. I think we had those in HIV since there’s no one voice. And in HIV AIDS, it was more difficult because we were seen as the outliers, we were seen as the troublemakers, you know, everybody now it’s like apartheid, everybody was opposed to apartheid. Now, all of a sudden, everybody supported Treatment Action Campaign TAC, and they were all on our side. And they will believe in our demand wasn’t the case. We were accused of being unpatriotic, of not being supportive of the ANC government. We were accused of taking money from drug companies. And that’s why we were pushing ARV’s it was the revisionist history about what happened in those ten years is very, sometimes interesting to read. Because we had a lot of civil society, people not supporting what we were saying, and I think the challenges if you know that something is right, and you can back it up at the science and evidence, even if you’re the lone voice, you have to say it, and you have to do that work. So it was a real struggle in that time, which was complicated by the fact that the government was using other NGOs and civil society to undermine us deliberately. I mean, we only found out years later that infiltrated those organisations, they were giving them funding. So there was an issue around, some of the NGOs were the henchmen, right of a denial of government that didn’t want us to promote access to ARV’s. They didn’t want us to change government policies, and I think that’s different now. I think it’s much easier in civil society that has, you know, is fantastic. I spent six years at a foundation trying to support and build up civil society, and you see the breadth and depth of it. So we have so many organisations, and they can very easily spot something that is a front for pharmaceutical interests or government interest, because when you work on these issues, you’re not just dealing with the potential of an organisation that is pushing a pro-government agenda, where that plan is not favourable to poor people or for people who are sick, right. But you also have organisations that are pushing a particular market or pharmaceutical interest agenda. And so that’s the difficulty, so I don’t think we’ll ever speak with one voice. And I think that’s important, as long as all of our different voices are still rooted in science and evidence. So Tian you may have a different view about the government should invest the money in the facemask, and I may say no, they should invest the funds in vaccines. But that’s okay to have that difference of opinion. Because we still both rooting our arguments in science and evidence, what is an intervention that can work? I think the difference is when your voice is something not rooted in science and evidence. And I’m saying, and I’ve got to call them out, and nobody in civil society likes to call each other out. And I think that’s the problem. But I think what we are blessed with.I’ve always said this for many years is that in South Africa, in particular, because of all of the issues around state capture, because of the problems of our failing health system inequities, apartheid past, issues around it, we have so many amazing organisations and people working on principles of accountability, principles of transparency, and it’s no longer about I don’t think at least; obviously, we have a race and gender problem in civil society in South Africa, and we don’t have enough transformation, but it’s less based on what your race gender sexual orientation is. And therefore your criticism either has more value or less value. So I think the challenge for us as civil society or as human rights lawyers, human rights activists, whatever we want to call ourselves, science activists, community organisers, is that how do we, with so much happening around COVID and the goalposts keep shifting. I mean, I don’t know you can keep up with all the medical literature that’s coming out, I can’t. So it’s moving very fast. Like Linda Gail Bekker says it’s unprecedented. They’ve never had this for any medical condition is how do we keep true to speaking truth to power, but doing it based on an evidence basis? Right. Sorry, the other question was around, yeah, if we do articulate a set of demands. I think, as many different voices as possible, I think what we did with HIV AIDS was that there was sort of like an agreement you focus on the testing campaign, will focus on the merits and prices. You focus on that, and because collectively, many different interventions and voices also put pressure on the government, because they are just going to get an avalanche of questioning. And so sometimes it’s useful. It’s the old thing of how do you organise, sometimes it’s beneficial that we all organise on one campaign together, and sometimes it’s useful that all ten organisations are separately trying to articulate the same set of demands. I mean, I think what’s valuable about the free the vaccine campaign is that that is a global organic collection of different organisations and individuals that are trying to say we need an international set of demands around vaccine access and vaccine transparency and accountability, similar to the work that you’re doing with VaccineAdvocacyResourceGroup (VARG) . The People’s Vaccine is a bit of a different initiative. So you want to kind of participate in it to an extent but also observe it because it has a lot of government leaders, right. And it also has, like multilateral institutions like UNAIDS. So I think there is the potential to answer your question to build a robust civil society collectively. But because of COVID people are tired, there is fatigue, there is no funding or funders are just making our lives very difficult, which I think is an issue we all need to deal with as donor-funded organisations, mainly because of the pandemic. And I think people also have, and I don’t know, I believe HIV AIDS that struggle, exhausted people. And so there is a possibility that “Oh, my God, we’re going to have to do this for another ten years and still fight another access battle. And then there’ll be another pandemic, and another and this is just going to go on indefinitely.” I think that is also the thing that maybe is tiring people. So yeah, I think we have a lot of work to do. And I do believe that we can find consensus. We don’t necessarily have to speak with one voice. But I think there is room to find consensus. And the thing that happens to me now is that a lot more people are talking about the issues that we were only talking about in HIV AIDS, and people thought we were insane. They were like, well, no drug company can charge whatever it wants to. And now people realise how simple the issue of the price of a medicine can be the difference between life and death. And that for me, I think it is something we should leverage. It’s quite significant.