Justice Edwin Cameron | We must fight stigma

This year we mark the world’s thirtieth World AIDS Day. From 1 December 1988, every year, the world has observed a special day for this terrible, potentially deadly, deeply stigmatised disease that afflicts some 40 million people across the world, mainly on our continent, Africa.

World AIDS Day 1988 was marked in deepest gloom. Just two years before, I had, myself, been diagnosed with HIV. It was a ghastly shock.

There was no cure and no treatment. AIDS was invariably fatal. I would not live till 40; not live to see a democratic, non-racial South Africa; never find love; not live to fulfil my ambition of becoming a judge under a just constitution.

Then came hope. By the ninth World AIDS Day, in 1996, there was treatment. Fantastically expensive, but effective. A combination of three or more anti-retroviral (ARV) drugs had been shown to stop the deadly virus in its tracks. Many at death’s door turned back to face into the light and sunshine of health and vigour and replenished energy.

I benefited. Eleven years after diagnosis I fell terribly ill with AIDS. This was 1997. I was able to start taking ARVs. Their effect felt miraculous. Within two weeks, I knew that my life had been given back to me. I would live. I would work. I would be able to enjoy every capacity of life that had seemed denied to me.

But there was a huge problem. Africans – poor Africans – poor black Africans – poor black heterosexual Africans – were excluded from this joy. The drugs were unaffordably expensive. Not because of production costs. No – they were expensive because the big pharma companies that owned the patents were determined to make billions from them.

To confront this moral outrage, Zackie Achmat started the Treatment Action Campaign (TAC) in 1988. The TAC won that war. Within four years, the drug companies slashed prices radically so that poor people everywhere facing death from AIDS could benefit from treatment.

But a worse nightmare awaited. President Mbeki’s AIDS denialism. What was behind it? Intense shame. Shame that the only mass heterosexual epidemic of HIV was on the world’s only black continent – Africa. President Mbeki refused to accept that HIV was a sexually transmitted virus. Worse, he refused to accept that ARVs were the way to beat this virus.

Horrified by this lapse into stigmatised unreason, I joined the TAC’s brave fight for treatment access and against the President’s deadly denialism.

That battle, too, the TAC won. It fought for and gained perhaps the most important court victory in our 23 years of democracy. The Constitutional Court, before I joined it, ordered President Mbeki to start making ARVs available.

It was a stunning victory. Reluctantly, foot-draggingly, President Mbeki’s government carried out the Court’s order – but it did so.

Stigma has lain at the root of every problem this epidemic has presented

Today, South Africa has the world’s biggest publically-provided ARV treatment programme. Very nearly four million of us owe our lives to a simple, daily dose of ARV tablets with relatively few and rare side-effects.

ARVs are available to every South African, rich or poor. And government policy says they should be available to all, citizen or non-citizen, cross-border migrant or not. That is as it should be.

For 20 years, this very month, I have had the bountiful boon of life and health and vigour and joy solely because of ARVs. Without them, I would have been dead about 17 years ago. Instead, here I am, dictating this column to my United States law clerk, Michel Djandi, sitting at my keyboard in the Constitutional Court. Every day that I wake up, I rejoice in this fact.

In a few days’ time, I look forward to yet another 94.7 cycling marathon. My aim? To beat my time last year (3:47).

So here’s a fact. On this 30th World AIDS Day, the disease and the AIDS epidemic are fully medically manageable.

But wait. If all is so hunky-dory, what the problem? Why don’t we scrap an unnecessary observance for a disease that is fully medically manageable?

The answer lies in a terrible, six-letter word: “STIGMA”. Stigma is a brand burnt in on the furrow of another. Saying, CONDEMN, REJECT, DESPISE, OSTRACISE, DISCRIMINATE, HATE.

And that’s only external stigma – stigma from other people. Worse even is internal stigma – the voice inside ourselves that says we are unclean, polluted, sinful, promiscuous, deserving of this infection, undeserving of treatment, wellness, health and loving support.

We must fight stigma. It kills. It drives people away from education and testing and treatment and counselling and prevention.

Internal stigma does all of these things. But it does them worse. More deadly because it is unseen, unknowable, unrecognised.

That is why we have more new infections than ever. That is why, every year, we still have tens of thousands of AIDS deaths. That is why we have loved ones, family members, neighbours, colleagues, friends who don’t want to be tested, don’t want to seek treatment, are too scared to ask for support and help. They blame themselves. They take the hatred from outside, and it finds a terrible voice within.

So I saw with regret that [LGBT newspaper] EXIT recently published a column that seemed to caution those diagnosed with HIV against talking about it. The column was written by a humane and caring doctor. Nothing he said was wrong. Of course, whether to speak or remain silent is a choice everyone with HIV has. Just like everyone who is LGBTI has a choice to speak or to remain silent.

What the column did not say is that the stronger, bolder, more life-affirming, more life-giving, anti-stigma choice is to speak. Quietly, carefully at first, but with assurance that there is no need to feel shame or stigma. No need to internalise the hatred and ignorance and irrationality of the outside. No need to allow it to find a place within.

So we do need this 30th World AIDS Day? We need it in the first place to fight stigma. For stigma has lain at the root of every problem this epidemic has presented over the last terrible four decades. Stigma still propels hate-filled HIV criminalisation statutes, which target people with HIV for special criminal penalties.

Stigma fuels the cruel and irrational persecution of women and men who provide sexual services for reward. Stigma fuels the arrests in Tanzania and Kenya and elsewhere in Africa of HIV activists who seek rational programmes that include men who have sex with men (MSM) and LGBTI people. Stigma denies gay men adequate services and information.

We must fight for knowledge and condoms and prevention. We must fight for justice and rationality. We must fight for every person with HIV to have the choice to speak about it. But we must also fight for people to feel encouraged to make that choice freely without creating undue fear about openness.

Yes, we need this 30th World AIDS Day. The epidemic is not past. As you read this column, beautiful young people in our country, MSMs, LGBTIs and straight people, are needlessly becoming infected. Some are turning away from diagnosis and treatment.

Behind this all lie the fires of stigma that still scald and scorch so many of us.

A long fight lies ahead, but it is one that we have the weapons and the determination to win.

Justice Edwin Cameron is South Africa’s first and only openly gay and HIV positive Constitutional Court Judge and an author. This article is courtesy of EXIT newspaper.