Start shaking your head

2009-05-08 00:00

Mention anything to do with HIV and Aids and many people get that "glazed doughnut look" - blank features and a faraway stare. They reached information saturation point long ago and now suffer from what has been called "HIV and Aids fatigue". Despite this, perhaps even because of it, Kerry Cullinan and Anso Thom's book should be mandatory reading for everyone.

According to Cullinan and Thom, who edited this anthology, the economic downturn is not the only challenge the new government faces. The legacy of the Mbeki-Tshabalala-Msimang era of Aids denialism is another, even more abiding and intractable problem. "Mbeki's legacy is a South Africa filled with Aids orphans, child-headed households, grandparents forced to parent their dead children's children, poor women having to home-nurse the sick and dying without remuneration, and a phalanx of businesses selling untested remedies to desperately ill people with promises of healing and cure. Healing our nation from all of this will be one of the biggest jobs of the future government."

This collection is well written and makes for riveting reading. It left me shaking my head in disbelief, appalled, angry, disturbed, fearful, deeply moved and hopeful, sometimes several of these all at the same time.

The head-shaking begins in the first chapter, James Myburgh's blow-by-blow account of the Virodene episode. It reads like the plot of a spy thriller. That government and parastatal authorities were involved in machinations that read like fiction not only beggars belief, it's an outrage. The chapters about HIV among prisoners at Westville Prison and the sacking of former deputy health minister Nozizwe Madlala-Routledge are similar. But then, much of what is recorded in this book is exactly that: outrageous. Whether played out loudly at some grand public gathering, or quietly in some forgotten rural shack, much of what has gone on in the HIV and Aids arena is disgraceful, immoral, unjust, unconstitutional and, sometimes, illegal.

The sense of horrified disbelief continues with Professor Michael Cherry's account of the development of Mbeki's denialist stance and the formation of his Presidential Aids Advisory Panel. This chapter and several others offer a keyhole view of some of the inner workings of the government and ruling party that is at best alarming, and at worst, frightening. For some, the state's actions are also heartbreaking as they represent a profound betrayal. Sipho Mthathi, then general secretary of the Treatment Action Campaign (TAC) said: "For many black people living in poverty, either as a result of HIV/Aids or whom poverty has made vulnerable to HIV infection and premature death, it is tragic that the people who should fight with us to defend our rights are the ones who spit in our faces."

Our own "City of Choice" gets a mention in what has to be one of the most shocking chapters - the story of the government's strange denialist bedfellows including Anthony Brink and Matthais Rath. Our former health minister, Peggy Nkonyeni, also gets a mention for hosting a meeting in Durban addressed by Minister Tshabalala-Msimang and some of Brink's allies. Before rising to notoriety, Brink "opted to become a prosecutor in Pietermaritzburg when most of his peers shunned the apartheid state".

How people described by a prominent international scientist as "delusional" came to have the ear of the president, health minister, and other top officials, is rooted in this country's apartheid history. Cullinan explains it thus: "Despite having nothing to offer other than ideology in place of ARVs for people with weak immune systems, Brink and his allies managed to ingratiate themselves into South Africa's body politic by exploiting divisions etched by apartheid. They used South Africans' deep - and given the country's apartheid history, understandable - distrust of Western powers and medicine, as well as the new democratic government's immense sensitivity to criticism to sow seeds of doubt about an epidemic that is largely sexually transmitted and incurable."

What moved me and gave me hope, as is often the case, was reading about "ordinary people" who do "extraordinary things" because they believe "it's the right thing to do". Their ranks include people such as Ashraf Coovadia and Thys von Mollendorff, dedicated doctors in state hospitals who took on incompetent and uncaring bureaucrats to defend the rights of their patients. That doctors had to defy and/or fight legal battles against their employers in order to fulfil their Hippocratic Oath is not only disturbing, it's positively immoral.

Coovadia writes about his experiences in trying to use drugs to prevent mother-to- child infection in a Gauteng hospital. He estimates that about 100 000 babies were infected in the year or so that it took to get a court to force the health authorities to allow this. He writes: "The time will come when history will judge severely the senseless waste of time and life because of the poor HIV/Aids policies and lack of progress of our past."

Von Mollendorff fought a similar battle against "senselessness" in Mpumalanga but did not enjoy such a happy ending. He and others were persecuted and hounded out of the state health service for facilitating an NGO's provision of PEP (post-exposure prophylaxis) treatment to rape victims. He now works for a community clinic and hospice in the area.

A chapter about the TAC is another welcome gleam of hope in this otherwise dark collection. Janine Stephen, a Cape Town-based freelance journalist, writes that this organisation offers "... something very real, very tangible - knowledge about how to make a difference, hope and the feeling that ordinary people could contribute meaningfully to change."

When I finished the book I found myself day-dreaming about the feasibility of having Mbeki and his cohorts prosecuted for crimes against humanity at the international court in The Hague. Sounds far-fetched? Well, that's how much of the factual accounts in the book read.

In their foreword, the editors echo this notion when they write: "This book is an attempt to document some of the madness, sheer weirdness and despair of a decade with Mbeki and Tshabalala-Msimang. We are doing so to safeguard the future. We want to present this book as evidence to citizens of this country and the world and say, 'This is what happened and we need to ensure that it never happens again.'" Their words resonate with the testimony of Elie Wiesel, the Holocaust survivor who was driven by the same passion to make sure that history be neither forgotten nor repeated.

If this final statistic presented by Cherry doesn't qualify as a crime against humanity then perhaps we have, as has been suggested, succumbed not only to "HIV Aids fatigue" but also to "compassion fatigue" and finally lost our humanity: "The effect of this four-year delay [in allowing a national roll-out of ARV treatment] was an estimated 343 000 deaths, for which Mbeki and his Cabinet must bear collective responsibility."

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