About 30 years ago, when the first stories about HIV and AIDS emerged, I was a health reporter on the Sunday Tribune in Durban, the main city of KwaZulu-Natal, South Africa. This province initially seemed to be hardest hit as the epidemic raged through its people, with life expectancy dropping to just 43 years.
The HI virus that causes AIDS would go on to become a global pandemic that we’ve had to learn to live with, albeit it with major advances in medicine and social science.
What I recall from those early days is that we – everyone – grappled with HIV, this major issue that spilled across all spheres of our lives, from health to the economy to how we behaved.
In the past week, I’ve felt like we’re back in that time. The coronavirus that causes COVID-19 is the bogeyman virus that threatens to surpass anything we’ve had to deal with before. But the similarities scream at me.
The words we use
First off, I cringe when I hear people with the coronavirus being referred to as “cases” or “infected”. We are going to have to remind ourselves again and again that this is about real people, not a faceless pile of blight.
When I started writing about HIV and AIDS, no-one really understood how to refer to people living with HIV. That included scientists, academics and journalists.
The first person I met with HIV was David Patient. That was in the early 1990s or late 1980s, and I interviewed him as he was about to cross Africa with his partner to raise awareness of HIV, to shout out: look at me, I’m alive. Yet, I called him an “AIDS sufferer” and even an “AIDS victim” in my newspaper article. David was anything but a victim.
David, diagnosed with HIV in 1983, was one of the rare people who did not develop AIDS despite antiretrovirals becoming available only much later. We reconnected on Facebook and, in 2017, before he passed away due to a condition that had nothing to do with HIV, I apologised to him for referring to him as a victim. He was gracious, as always.
But the very worst description back then was an “innocent AIDS victim”, as if some were “guilty”. I swear I never used that wording, but it was common, especially if the story involved children who’d acquired HIV from their mothers or people who’d got it through blood transfusions. It was never used to describe a person who injects drugs and had shared a needle. Presumably, they fell into the “guilty” category. “AIDS babies” was pretty awful, too.
In fact, we grappled with the terminology for years. It became “AIDS survivor”, “HIV-positive person” or (cringe) “HIV-infected person”.
Today, the common terminology is people (or person) living with HIV, children living with HIV, adolescents living with HIV and so on because that’s what people are doing – living with HIV. We’ve much better at it, as a society, but old habits persist. As a copy editor, I still come across labels like “positives” and (cringe again) “infected people”.
My point is that we are going to have to pay attention to the language we use when we talk about people with the coronavirus. You are a “patient” if you are hospitalised, not if you are among the more than 80% of people who will get the virus but have mild symptoms or the millions of people living with HIV.
Labelling people as anything but people is nasty. It perpetuates stereotypes, which feed stigma and discrimination (HIV and AIDS is a perfect example of this). It creates a them-and-us mentality. And it makes people feel powerless and pretty awful about themselves. Let’s not do it to each other.
Facts and fallacies
The coronavirus is steeped in myths, just as HIV was and perhaps still is.
One of the nastiest AIDS myths was that having sex with a virgin would cure you – and this in South Africa, a country already weighed down by high rates of rape and child sexual abuse. I’m using the past tense here because I am hoping but not 100% sure that this myth has died out.
And one of the most stupid ideas was that distributing condoms and delivering sex education would encourage people (including young people, like students) to have sex. It did not occur to the fools that people would have sex anyway, but that with condoms and knowledge, they would be less likely to acquire HIV.
Just the other day, I heard someone talk about “the homosexual who first spread AIDS”. My jaw dropped, right to my toes, and my attempts at protest were not heard. It reminded me that there are still some who think of HIV as a “gay disease”. I kid you not. Yes, men who have sex with men are regarded as a key and vulnerable population when it comes to HIV. But there are other key and vulnerable populations and they include people who inject drugs, sex workers, prisoners, migrants, pregnant women and children. Health workers were on the frontline then; they are on the frontline today.
HIV and the coronavirus have become human viruses – they affect all of us.
Some of the assertions around the coronavirus that I’ve come across (the perpetrators are always assertive) include these:
- If you sit in a sauna or blast a hairdryer up your nose, you will kill the virus.
- If you eat ice-cream or other cold food, you are more likely to get the virus.
- If you have dark skin (or light or brown skin – take your pick), you are immune to the virus.
- If you eat garlic, drink colloidal silver and gargle with bleach, you won’t get the virus.
- If you snort cocaine, you will kill the virus in your nasal cavities.
- The Chinese manufactured the virus in a lab so they can take over the world.
The list grows by the day. You make yourself – and others – powerless by giving credence to misinformation. And you fuel the spread of the virus.
Today, an abiding myth, at least in some quarters, is that if you have HIV, you will definitely die. With modern antiretroviral treatment, correctly taken, HIV becomes undetectable in the body – and you are not able to transmit the virus. It’s known as U=U (undetectable equals untransmissible) and it’s the closest thing to a cure. A cornerstone, though, is testing, the lack of which is a feature of the coronavirus pandemic right now.
The panic around COVID-19 drowns out an important fact: 98% of those who acquire the virus will survive. We all bear responsibility for the 2% who won’t – through ensuring that the vulnerable don’t get exposed to the virus.
A modern horror story
My Sunday Tribune stories back in the early 1990s reflected serious panic around HIV and AIDS. By the late 1990s and early 2000s, when I was working for the business section of the Sunday Times, my stories focused on economic impacts and businesses coming to terms with employees living with HIV. The economic issues around the coronavirus are unfolding much quicker, with almost immediate devastation.
I found some of the stories I wrote in the earliest days. Here’s a handful (with their shock-horror headlines), all from the Sunday Tribune:
- Horror picture of hidden killer (26 May 1991). “AIDS is a far greater threat … than political violence and tuberculosis put together … the vast majority of people who have HIV do not have symptoms and may not even know they are infected.” Sound familiar?
- Red alert on AIDS (18 November 1990). “Doctors, stunned by disclosures this week that two members of the medical profession had tested HIV positive, have gone on an AIDS red alert.”
- 27% of adults will be HIV positive by 2010 – unless … (1 December 1991). The spread of stories discusses changing sexual behaviour, legalising sex work and adding condoms to hotel room offerings.
- Drastic cuts in health budget will force doctors to play God: Who will live, who will die? (12 April 1992). I’ve seen plenty of variations of that headline in the past week.
- AIDS campaign gets top priority (28 January 1990). “Fighting the rampant spread of AIDS is ‘a matter of high priority’ for Government health authorities.”
These are bells that echo today. But it’s not 1990. It’s 2020, and we have facts at our fingertips. We are going to have to make sure that we get informed – it’s the best weapon against the pandemic. Use the time in self-isolation to find out everything you can; connect virtually to talk about your concerns. We live in a time of amazing connectivity.
There is nothing “good” about the coronavirus, but I see one major difference with HIV and AIDS that will likely have a positive impact. AIDS was indeed seen as a disease of fringe populations – why give a damn about the likes of sex workers or people who inject drugs? And it’s widely known that managing HIV requires decent living conditions that include healthy food, good housing and running water, things that have never really been addressed in communities all over the world.
So, it was seen as a disease of the fringe and a problem for the poor.
The far more contagious coronavirus is hitting the wealthy – such as movie stars, politicians and people who can afford to go on holiday to Italy – and everyone else. It immediately has attention. And we understand that it’s a huge threat to society as a whole if swathes of people don’t have water to wash their hands or homes in which to self-isolate. How do you work from home or have virtual school lessons if you don’t have an affordable Internet connection? In South Africa, children are drowning in pit latrines.
Could this be the catalyst that gets governments and others to address the conditions in which people live, work and school? I think there will be no choice.
The virus is starting to feel like the great leveller.
And I am left wondering what David Patient would say about it. I looked at his post on 13 March 2017, when I made my apology to him. It was the 34th anniversary of his diagnosis with HIV. “While AIDS has caused so much loss, devastation and suffering, it has also brought out the best in me, and many others, who were the trailblazers in the early years, who forged the path that has created a very different reality for people who are diagnosed today,” he wrote.
“It also taught me to stand up and be counted, regardless of the consequences, to affect change and to fight for what I believe is right and to give a voice to the millions of people who live with HIV or are affected by it. AIDS gave my life meaning and purpose and enabled me to do my part in effecting change, either through provoking people and challenging the status quo or simply by inspiring them by my existence and longevity and showing them what is possible.”
These are inspiring words, indeed, and they resonate today. We all have to be trailblazers and leaders for what has to be done. Or we don’t stand a chance.