Lawyer and human rights activist FATIMA HASSAN recalls, some of the most significant developments in AIDS activism over the years – as well as many of the hurdles it has had to overcome.
Along with hundreds of others, the Durban Global March for Access to Treatment in 2000 was one of the first marches I helped to organise as a woman, activist, staff member of the AIDS Law Project and human rights lawyer, of colour, in a post-apartheid South Africa. The march was jointly organised by the Treatment Action Campaign (TAC) and other regional and international partners including ACT UP and Health GAP. Remarkably, I still have the original TAC issued ‘HIV’ T-shirt I marched in. Some of the people I met in Durban (2000) and marched with, have since died, prematurely, because of stigma, exclusion and because they did not have money to afford expensive medicines to seek out timely treatment.
At the 2000 International AIDS Conference (IAC) held in Durban, we organised and marched in a post-apartheid open society that was gripped by AIDS denialism. I remember the afternoon well. One word sums it up: ‘Solidarity’. We marched through the streets of Durban with thousands of activists from Thailand, Brazil, Australia, Canada, Zimbabwe, Uganda, Nigeria, India, France, USA, Mexico, Argentina, and other parts of the world. Ma Winnie Mandela, faith leaders, some trade unionists and a handful of comrades from the local medical and legal professions supported our activism, our work and TAC’s demands, considered at the time to be too radical or adversarial by many, at the time.
Globally, we had the support of thousands of renowned activists including AIDS organisations, donors, philanthropists, researchers, scientists, doctors, nurses, lawyers and people living with HIV/AIDS (PWLHA) who had been working on issues of HIV/ AIDS advocacy and policy reform for longer than us. There in Durban, I met for the first time, people who are now my dearest African, European, American, working class, wealthy, activist, lesbian and gay, friends — some who are living with HIV, and some who are not. Some remain activists, teachers, workers, doctors, lawyers, judges, researchers, scientists, business people, community organisers and government officials. Some work for multinationals and global institutions. Until now, many of those formidable people are part of my inner social justice circle, even though we all occupy different positions to those we did then. What has not changed is that even with a new generation of younger activists, the activism of 2000 and the clarion call, passion and commitment for a new and just way of responding to the epidemic is the same. I see it every day in every grant we issue, in every activist, lawyer, researcher, photographer, documentary film maker, health professional and young leader living with HIV/AIDS, that we try to support in our grant making.
This week, 16 years after that difficult, but momentous global call for action for life saving treatment for millions of people living with HIV all over the world, I return to Durban. This time, not as an activist lawyer, but as a donor that supports those at the forefront of health activism locally and abroad.
The first IAC I attended was in Geneva in 1998, a country not the epicentre of the AIDS epidemic, at all. The second IAC I attended was Durban 2000, my home country. Many consider Durban 2000, after Vancouver, as the ‘game changer’ for community voice and inclusion at the IAC because it ripped apart the traditional scientific, pharmaceutical model of conferencing because it showed that research and innovation cannot exist for people who are not in the room or at the margins. For me, as a local, it galvanised my own political engagement, my resolve to work with others to jointly fight AIDS denialism and to get the medicines to the people who needed it the most, but who had no money or means to do so themselves. Both politically and for me personally, it changed the course of the global AIDS movement, for all of us. And it can again.
The IAC returns to Durban 16 years later this month, but under very different organising conditions. In 2000, the IAC was held without the State Security Agency (SSA) vetting delegates or amidst security alerts and the threat of terror but with state sponsored denialism. We also organised with less overt police brutality and less obvious resistance to protest and assembly generally by the South African state, despite its dogmatic and deadly AIDS denialism which was endorsed and led by President Mbeki at the time. A large number of police officials were there on the day, but the Global March, while massive, was peaceful and did not include the elements of public order policing that are now all too familiar and a hallmark of Marikana and #FeesMustFall. Now, barely three weeks before the country’s local government elections, amidst a climate of increased police brutality and closing down of space for civil society to peacefully protest, with political assassinations already occurring in this province, I doubt that the police will be in a jovial, banter-filled mood.
As we well know, the IAC started out as a scientific research focus meeting, and evolved through people power, dissent and protest largely through the hard work of global partners such as Health GAP, ACT UP, TAG, MSF, ABIA, TWN and other global organisations, including advocates for AIDS treatment access. This eventually turned into a space that includes (albeit still unequally) researchers, scientists, academics, PLWHA, health care workers, activists and people from all over the world. This can most clearly be seen in the allocation of the Global Village space and at times a Community Track. But it is not enough at all: at every IAC, each time, the struggle to ensure the inclusion of that voice – the voice of people living with and affected by HIV and AIDS, never ceases to astound me.
I can’t wait to attend Durban 2016. But I also can’t help but compare the two conferences: While the 2000 IAC was in itself momentous globally, because it showed the rage of the HIV affected world at the opening ceremony where Nkosi Johnson and former President Mbeki addressed us, at the Global March for treatment where Ma Winnie Mandela and other faith and trade union leaders addressed us, and at the closing ceremony where Madiba, clearly angry, agitated and disappointed, spoke to us. Mandela’s speech then in 2000 was formidable because it admitted that there was a dispute (denialism). It was honest, and it is a must read. Little did we know at the time the personal pain that would emerge later in both the Mandela and Johnson families, and so many others, when the real impact of HIV/AIDS was seen in South Africa. When people died prematurely every day for years. When the toll of death was high.
Nevertheless, in 2000, for one winter afternoon, we occupied the streets of Durban, in a march that was attended by hundreds of thousands of people from all over the world.
Several aspects stood out for me from that afternoon and from that week, especially: Nkosi’s opening speech and Mbeki’s snub, global solidarity; the roots of galvanising against AIDS denialism in South Africa; and the beginning of a new struggle against private pharmaceutical profiteering from the epidemic -mainly in the global South.
Before the 2000 IAC, I had the privilege of legally representing Gail and Nkosi Johnson. They were one of my first set of clients and one of my first lawyering intervention: The parents and some teachers of a white suburban middle class school in Johannesburg were confused and resistant to having a six-year-old black child (Nkosi) who was openly living with AIDS in close proximity to their children. At the height of ignorance, exclusion and stigma, Gail and Nkosi responded to the discrimination that they faced formidably and gracefully even when some parents and teachers absurdly suggested that ‘space-suits’ should be worn by the other students to prevent HIV transmission in the class room and playground.
My first foray into suburban HIV/ AIDS prejudice would repeat itself over a 10-year period in so many other sectors and engagements and force me to rely on the middle class medical and scientific community in Johannesburg at the time. With them we arranged for medical professionals to speak to the parents and teachers, so that the medical risk of transmission could be explained, and in turn, fear could be addressed based on evidence. Eventually, we reached a compromise, and Nkosi was allowed in for specific school periods, eventually having friends that he played with on the playground. I have not asked Gail if I can write more about this, so I will limit myself to two aspects of Durban that involved Nkosi which have been publicly shared before.
Nkosi was asked to be part of the opening ceremony and Gail had him wear a very oversized jacket, more pronounced because Nkosi was also tiny. He was living with AIDS, and like so many other people in our country at the time, including other clients, colleagues and friends, he could not afford expensive available medication that was withheld from us, first by private sector pharmaceutical companies such as GlaxoSmithKline (GSK), Pfizer, Boehringer Ingelheim, Roche, Merck, Bristol Myers Squibb (BMS) and others, and then by a denialist, post-apartheid, democratically elected ANC President and government. With the same disdain initially showed to Nkosi Johnson at the suburban school he attended, Nkosi was infamously ignored and snubbed by then President Mbeki in full global view (President Mbeki left mid-way during his speech with no explanation or apology since) at the Opening. No surprise then that none of us batted an eyelid when Mbeki was recalled, along with his Health Minister (Tshabalala-Msimang) at the time.
Nkosi’s plea for ARVs coupled for all pregnant women living with HIV (MTCT) may have sounded radical. But 16 years later, Nkosi, your call for action worked. After Edwin Cameron’s hauntingly honest opening plenary address, reflecting on his own privilege and where the medicines were, and where the people were not followed by the powerful and honest closing address by Madiba, we were motivated, shocked and galvanised to literally fight for access, to get arrested, to engage in civil disobedience here and abroad, to litigate, to march, to protest, to research, to speak out and to be alienated. We were considered too angry, too difficult, too antagonistic, too, too, too…
Now of course, the madness of the early 2000s is forgotten, and like apartheid, everyone claims that they were not part of that deadly denialism or ‘garlic-lemon era’. The record in our courts, in our newspapers, and in our archives of course does and will tell a very different story.
After the 2000 IAC, with new resolve and death in our midst every day, we challenged our own government and several pharmaceutical companies here and abroad. Within a few years, through community mobilisation, activism, treatment literacy and volunteers spread across South Africa, in every community, in every province, TAC secured a hard won state commitment to roll out ARV medicines in South Africa at state expense (and elsewhere, other organisations did the same for their countries too). In Khayelitsha, Médecins Sans Frontières, (MSF) had already started a pilot ARV programme for the local community there, with the support of a handful of government officials working in the ANC-run health department in the Western Cape, and that pilot programme which showed that poor, black patients can understand what opportunistic infections are, can manage their own health, and can take their medicines on time — even if they did not have a watch or could not read Western time. But the national roll-out of ARV treatment by the state, despite the Cabinet Statement, was infamously delayed and obstructed by the then Minister of Health and several provincial health departments.
We therefore worked to secure the roll-out of the (interim) procurement of medicines using treasury regulations that no one had used for this purpose before. We brought contempt of court proceedings. We went to the South African Human Rights Commission (SAHRC). We organised. We protested. We litigated, again. The Clinton Foundation was thrown out of the country because of inter alia its role in drafting a disputed national treatment timeline. Activists and TAC were ignored. MSF was persona non grata. More people died. And I recall the first TAC meeting shortly after the Cabinet announcement. It was in East London where we lamented that only about 194 people in the entire country were on state sponsored ARVs. We called the treatment report Let them Eat Cake… and agreed then that we had to engage in radical action to ensure that each and every person who qualified for and wanted to use ARVs would be able to do so, again.
Now, in 2016, at least a few million people are on ARVs in South Africa. Who would have thought…that when we marched in Durban in 2000, that we would see the day when PLWHA would live productive and healthy lives. Of course there are still medicines stock-outs, and many people are without medicines, they are without new regimens, without support, without food. Also, now, shrinking government commitments and funding. So perhaps Durban 2016 will take the baton of Durban 2000 and move this struggle further along, here and elsewhere.
This is why I am struck that even now, some in the South African government allegedly did not want a TAC representative to speak at the Opening of the IAC 2016. Yet, it was the women of TAC who led the fight against the AIDS epidemic across our country. I recall that some in our government/health department tried to do this at almost every IAC since 2000, and also at the United Nations General Assembly (UNGASS) on HIV/AIDS in the mid-2000s. Then, it failed to prevent TAC and the ALP from getting accredited, and dismally failed to block Nkhensani Mavasa (now TAC National Chairperson) from speaking at the UNGASS Plenary, because they knew that whatever Nkhensani and TAC said publicly, that it would embarrass them. They tried this even in other countries. At the IAC in Toronto, Stephen Lewis, a forceful ally of TAC, had to step in to lambast and fearlessly critique the South African government, and the then health Minister, as well as its garlic-lemon exhibition stall and its deadly track record on AIDS, at the time.
Significantly, by late 2008, ironically after years of campaigning and challenging the Mbeki regime on South Africa’s quiet diplomacy in Zimbabwe (a spectacular failure to avert a humanitarian and refugee crisis in Zimbabwe) and the government’s deadly and denialist position on AIDS, President Mbeki was finally recalled by the ANC before his Presidential term was over. The reasons for the recall were mainly related to the fall out due to charges brought by him against President Zuma (then Deputy President) and not due to his dismal AIDS denialist track record.
Following President Mbeki’s recall, there were other resignations and recalls including that of the then Minister of Health, who had just earlier, in Toronto, been targeted by activists from South Africa and elsewhere for her active promotion of garlic, lemon and beetroot as a treatment for HIV and AIDS. I never imagined that when we marched in Durban 2000, that the call for access to affordable medicines, universal access to treatment, and the political recall of a regime / administration (Mbeki administration) that actively contributed to the premature deaths of thousands of people, would materialise. A worthy snub indeed.
Nor did I ever imagine that the recall period (6 months) would have at the helm in the health Ministry one of the most formidable and brave women I have worked for. Barbara Hogan, an ANC Member of Parliament (MP) was asked to serve as interim Minister of Health, replacing Tshabalala-Msimang. I had the privilege of working with Minister Hogan by serving as her Special Adviser and for six months, just before the 2009 national elections (which resulted in the appointment of the currently serving Minister of Health, Dr Aaron Motsoaledi) I left my job as a human rights lawyer and joined Minister Hogan and a few others, in the eerily lonely corridors of the South African national health department. We worked tirelessly with the late Deputy Minister Sefularo and a small group of health officials in the national department, along with several officials in other provincial departments, to change the direction of the ship that we were in: to re-calibrate the message and course of the country’s response to AIDS within an existing but fractured health system, with low levels of trust and morale, inadequate allocations of resources, stock-outs and erratically performing provincial health departments –that emerged from the cruel Bantustan legacy of apartheid. Critical to this was securing the high-level and content support of the now current Director General of Health (Dr Precious Matsoso) by first asking her to serve on an expert advisory group and then raising with the WHO her return to South Africa, to ensure that the right people, with the right skills were in the right jobs thus avoiding cadre or political deployments. One day I hope to write more about that period, but for now, I can only reflect on what a powerful and privileged journey that was, to enter a health department gripped by denialism’s consequences, and breathe fresh air into the endless opportunities and possibilities for government and civil society collaboration with the support of global and local foundations and other governments. To properly address the AIDS epidemic in South Africa for the first time in our country’s history – with authority, evidence, science, compassion and respect.
What struck me a few days ago on the flight to Durban for the 2016 IAC, was that I saw several of the hauntingly familiar faces of the denialist era.
Let’s not be fooled: many who supported that deadly era continue to remain in government, and were part of the denialist DNA at the time. They did not condemn or express their dissent or outrage, because the (political and career) consequences would have been grave. They remained in government departments, in the Medical Research Council, Medicines Control Council and in the general medical community yet they had frustrated our efforts at evidence-based science and political engagement, and loyally supported President Mbeki. They criticised TAC and its allies in government and the legislature. They refused, despite TAC and other activists history and record, to admit that collective civil society power using a social movement, forced the South Africa government to issue a singularly significant Cabinet statement o(2003) that undertook to provide access to ARVs for patients in need – a statement and commitment largely issued through the behind the scenes work of Zola Skweyiya and others. Ironically, just a few months before that Statement was issued, we were part of one of the largest local post-apartheid marches at the Opening of Parliament on 14 February 2003. A month later, by Sharpeville Day (21 March) civil disobedience began earnestly with the arrest of TAC activists followed by global days of action at different South African embassies in several countries. Who can forget the 600 symbolic tulips placed by our international comrades at the door of the South African embassy in the Netherlands, with the tulips representing the 600 or so deaths taking place daily in South Africa, from a preventable illness (AIDS). By 2003, it was TAC, trade unions, PLWHAs and doctors and nurses that challenged the abusive and excessive pricing of GSK and BI, that eventually facilitated the issuing of multiple generic licenses to companies other than Aspen for use in sub Saharan Africa. This created an ‘affordability’ breaking point.
Sadly, none of the “Mbeki” officials have ever atoned, apologised, or shown contrition. In fact, when a group of us rushed to Parliament minutes after the ground breaking Cabinet Statement was released, we were infamously snubbed by the then Minister, her officials and her entourage, who refused to speak to us, or engage with us. We were rudely waved off!
So this week in Durban 2016, let us please be clear about one thing: Our government did not wake up one day to suddenly see the light of globally available medical evidence to agree, on its own, to provide access to ARV treatment. Civil society showed government that path, and government capitulated because civil society led a very long effort, with the support of local and international solidarity networks, activists, faith based organisations, trade unions and PLWHAs to achieve that.
This movement was led by men and women of great courage and fortitude. Some are still part of the movement, some occupy other positions now, and some have sadly passed on because they got access to their medicines too late or not at all. The mainly black African women who led this movement at the height of AIDS denialism in our country should be recognised and awarded medals of gratitude. Yes, the government facilitated the roll-out, and the appointment of Minister Hogan followed by Minister Motsoeledi, meant that the pace and passion of driving an emergency public health response picked up. But civil society led that.
So if the South African government or others this week attempt to take full credit for what is the worlds’ largest ARV programme, I sincerely hope that in a rare moment of modesty, it recognises the contribution that TAC and hundreds of thousands of activists and people made (and who were part of one of the largest social movements since 1994) and that it acknowledges that today, and going forward, also in our history books: that TAC with the support of others galvanised and mobilised to create the change that we are now witnessing.
Hassan writes in her personal capacity.
Photo: South African HIV/AIDS action group members of the Treatment Action Campaign (TAC) protest during a meeting at St.George’s Cathedral in Cape Town, South Africa 29 August 2007. EPA/NIC BOTHMA