HIV, the enlightenment and our poor memories.
A number of people have over the years played a role in the development of the TAC and our battle for antiretrovirals. There are too many to mention. In the following pages a small group of people who played a role in one way or another and represent various constituencies, share their recollections of the past and their dreams for the future.
Writing about TAC and my own involvement in the history of AIDS is a battle with memory, one that with the passing of time becomes harder.
To my mind, the battle for medicines for people with HIV during the 2000s was a battle for the enlightenment. It brought to the fore the role of science and human rights in society. For the last several hundred years the development of the scientific method has spawned innovations that have benefited nearly all of humankind. Today on average most of us live longer and more comfortably than we did in, say, 1687, the year Isaac Newton published his seminal work on physics.
Not coincidentally, over the same period, the idea that all people are entitled to the same fundamental rights has become a truism accepted in much of the world. That slavery should be abolished, that everyone should be educated, have decent health-care, freedom of movement, expression and belief is barely disputed. Without the ascendancy of ideologies based on human rights, the benefits of science would have reached far fewer people.
Tomes have been written on the enlightenment. Philosophers, far more capable than me, have sought to explain it. But to my mind, the enlightenment is characterised by the rise of science and human rights, including the duty upon states to ensure the welfare of people.
AIDS has been a clarion call to fight for science and human rights across sub-Saharan Africa, and especially in South Africa where probably more people have lived with, and died from, HIV than anywhere else. In contrast to the rest of the world, life-expectancy began to drop in sub-Saharan Africa, because of the rise of the HIV epidemic. The response of former president Thabo Mbeki and his cabinet was to deny access to antiretroviral treatment. This remains one of the most grotesque denials of science and human rights in my lifetime. And the consequences were awful: hundreds of thousands of people, mostly black and poor, died young, needlessly and after much suffering. For this Mbeki, and several of his ministers, should have been prosecuted.
Against this madness, and for the enlightenment, for science and human rights, stood the Treatment Action Campaign, the AIDS Law Project, Médecins Sans Frontières (MSF), and thousands of doctors, nurses and patients. It was a struggle I was privileged to be part of. My years in TAC were the most important, hardest, worst and best of my life. In TAC I learned politics and came to understand properly the privilege my class, race and sex bestowed upon me. All of this might seem trite, but it is assuredly true.
Given that the years 2000 to 2008 were the high point of my existence, it is strange to me what events my brain recalls above others, but these are those memories right now (perhaps tomorrow, or ten years from now, a different set of memories from this time will be more salient):
In 2003, I stood with TAC members at Parliament waiting for Health Minister Manto Tshabalala-Msimang to emerge, after –if my memory is correct– presenting the treatment plan we had fought so hard for. Despite our history with this person who had caused so much pain, we warmly cheered as she exited Parliament. Perhaps she saw this as her enemies gloating over her forced capitulation, and so she scowled at us.
In 2008, I remember the elation in court as Judge Dumisani Zondi ruled that Tshabalala-Msimang’s most dangerous charlatan, Matthias Rath, had unlawfully run a clinical trial on people with HIV. To me, his judgment was a vindication of science and ethics, and all that we had been campaigning for.
Ronald Louw, my beloved friend and head of the UKZN law faculty, lay gaunt and ill in front of me in hospital. Not long before I had seen him healthy and vibrant. It was he who told me some years earlier, as we walked on a Durban beach and joked about his uniquely Durban sexual adventures, that he was confident the government would soon cave in to TAC’s demands and provide antiretrovirals. I was in a disheartened state and sceptical. But within a year Ronald was proven right. Now in hospital he told me that when he recovered he was going to criss-cross the country giving talks imploring people to get tested and find out their HIV status. Despite numerous warning signs which he (and I) had missed, Ronald left it until too late to find out his status. Unfortunately his prediction to become an evangelist for HIV testing did not come true. He phoned me from hospital one night to thank me for having flown to visit him. Within a few days of that he was dead. Despite being aware of the science of HIV, and knowing that he was at risk of infection, Ronald was a victim of self-stigma, the fear of finding out that he might have this dreaded disease. Nine years later, I still miss and think often of him. Perhaps he might have lived. It seems his doctor had mistakenly assumed that Ronald’s opportunistic infection was PCP and not TB, perhaps because he was a white man and his doctor didn’t think it plausible that white people get TB. He consequently started TB treatment far too late.
I had to help organise TAC’s first large march which took place on 9 July 2000, the one where Winnie Mandela shouted to huge applause, “Viva Thabo Mbeki. HIV causes AIDS.” Several of us worked together intensely for a few weeks. One of my fellow volunteers was distinguished by being much softer and gentler than the rest of us. He was always friendly and smiling. He also seemed healthy. For weeks we saw each other daily. Then one day, out of the blue, he was admitted to King Edward hospital in Durban with cryptococcal meningitis, one of the deadliest AIDS-defining illnesses. I went to visit him and I recall the stench of piss, and the filth of the place. A few weeks later he died of cryptococcal meningitis. What bothers me today, and fills me with shame, is that I don’t remember his name.
Perhaps the receding horror of the AIDS epidemic in our memories, the forgetting of the names and lives of all those who died but didn’t need to, especially those who were poor and black, is normal.
Perhaps in my own forgetfulness, I can better understand how donors and governments have forgotten the HIV epidemic, and moved on to the next fashionable thing. Perhaps this explains why there is almost a complete absence of HIV information on radio and television. In the end, the standard view goes, TAC appears to have won: the state was forced to deliver a treatment plan, and millions of lives have been saved. Life-expectancy has risen again in South Africa. To a large extent the standard view is true.
But it is not quite this simple: our health system is creaking and breaking, and drug-resistant TB is on the rise. Thousands continue to die of AIDS, untested and never treated, or fallen through the health system’s wide gaps. The enlightenment is not something that is won. It is not some board game with a final result; it has to be struggled for everyday. If TAC is allowed to disappear, merely to become a set of imperfect and ever-worsening memories, an important part of the never-ending struggle for science and human rights will be gone.