/ 7 August 2007

Blood, sweat and tears

It’s taken tears, anger, demonstrations, speeches and prayers. It’s taken court battles and HIV+ T-shirts worn with pride. But Aids advocacy and activism have taken a momentous path in the past few years.

It was only five years ago that the Johannesburg General Hospital decided to close its HIV clinic. The hospital feared that providing the only specialised public HIV service in Johannesburg would flood its facility with too many people with HIV/Aids from outside its district.

Members of the Treatment Action Campaign, the Aids Law Project, Community Aids Response and the Aids Consortium were up in arms about the proposed closure and decided to demonstrate.

I remember the thrill of power and promise when the police closed the intersection of Jan Smuts Avenue and Empire Road so that we could lie down on the tar in the middle of one of Johannesburg’s busiest intersections in protest: an effective and emotive advocacy tactic to symbolise the suffering and death that the closure of the HIV clinic would cause.

Partly as a result of this demonstration, the HIV clinic survived and a few years later the Gen became one of the first public health facilities in South Africa to provide antiretro­viral therapy (ART).

The other day a doctor friend took me on a tour of the Gen’s ART clinic to explain its inner workings and mechanics. To develop my research proposal on ART adherence and gender, I had to make sense of the bustle and movement of this buzzing health space, which has tended to more than 3 000 patients to date. And it struck me just how far Aids advocacy and activism have come.

My friend took me to the clinic pharmacy and, as I peered in through the reception window, my eyes swept over the heaped shelves of colourful boxes containing ART medicines. Their names tumbled off my lips like poetry: efavirenz, stavudine, lamivudine, nevirapine, zidovudine. Their obviously proven life-giving properties seemed to provide a soft glow to the windowless room, warming my heart.

My thoughts strayed to the years of hard and brittle activism, the many voices that were raised in anger and the multitude of lives lost to ensure that this pharmacy could now pass healing medicines to waiting patient hands. I thought of all the years of exhausting work, the tears, the demonstrations, the marches, the anger, the unity, the songs, the many words written in perplexity, the prayers, the court arguments, the spirit, the speeches and the placards.

I reflected on how significant it is that South Africa has won ART and explicit legal protection of the human rights for people with Aids and how many triumphs this last short while has seen.

Yet, I also reflected on something else: how little celebration and constructive self-congratulation Aids activists allow themselves. The prevention of mother-to-child transmission programmes, post-exposure prophylaxis for rape survivors, the “comprehensive plan” for antiretroviral (ARV) treatment in the public sector, the dramatic lowering of medicine prices and the adoption of the astounding national strategic plan (NSP) are all causes for commemoration, joy and happiness.

Sadly, I have not seen enough happiness at what has been achieved. Mostly I have seen fatigue and blank determination on the faces of activists, ready to the take on the implementation challenges of the NSP. Perhaps their burden weighs heavier in the light of recent allegations that they did not fight at all, because the president and the government never opposed their struggle.

It is true that the struggle must continue — the spurious revisionism, if nothing else, makes that inevitable. It is true that for every person who is receiving free ART in South Africa through the public health service now, there are two more not receiving ARV — but needing it.

All this makes for a continuing struggle, and a continuing crisis.

Still, is this not time for Aids activists and advocates to pause for a short while, to think back and to affirm and congratulate themselves and their co-activists on what has been achieved — on a job well done so far?

To acknowledge and pay respect to all those that we have lost to the struggle, while at the same time celebrate those lives now and in the future that will be saved by previous immense efforts? To reflect on what we have done well, what we could have done better and how we need to refocus our energies in a changed epidemic?

There is no room for complacency and little for self-congratulation. But there is room for recognising solid achievement — a minor miracle of revising national policy and getting its benefits out.

A few short years ago the government’s denial of the problem seemed as unmoveable as its denial of the remedy. The activists’ relentless struggle made both denials ­unmaintainable.

Back in the Johannesburg General Hospital HIV clinic, just as I was about to turn away from the pharmacy and my reverie, I noticed a little boy and his sister approaching the pharmacy. The boy looked a dapper nine, while his sister could not have been more than six. Their school uniforms shone and her dreadlocks were tightly captured in a blue ribbon. I looked around for a proud parent, but could see none.

The boy, who could barely see over the counter, handed a prescription to the pharmacist. A short while later the pharmacist produced a bag that looked like it contained ART medicines for two people. The girl placed it carefully in her school satchel and the two of them walked out of the ART clinic holding hands.

Looking at them going off, I thought how achingly young they were — and I wondered how they contracted HIV, who cared for them and how they explained to their teachers that they had to miss school once a month to collect their life-savers. My heart shrank and I tightly hugged my friend’s shoulders for support as we walked away.

There is so much more to be done. But in the healthy lives of those two young children my heart also sang for what has been achieved.

Marlise Richter is a PhD student at the Wits school of public health