AIDS activism arose in the 1980s because of fear and anger – fear of this unknown new thing that was killing our friends (and possibly ourselves) and anger that society as a whole didn’t seem too bothered about it as long as it only killed the socially inconvenient, like junkies and homosexuals.
But the one advantage we had as gay activists was that we were used by now to turning fear and anger into action. Friends of Terry Higgins, the first person known to be killed by AIDS in the UK, didn’t just mourn his death but also moved to start something so that others wouldn’t die the same way.
The Terry Higgins Trust, as it started out, was the first organisation in Europe to publish safer sex advice based on news coming from the US. With no internet, it posted out thousands of leaflets, typed up hundreds of newsletters, hand distributed flyers.
Within a few years, thousands of people were involved in dozens of grass roots AIDS organisations across the UK, from social care to straightforward activism for better funding and education. As we learned more about HIV, the virus causing the syndrome, we passed on the news. People with HIV, in particular, became trailblazers in increasing patient involvement in healthcare, demanding the right to choose their care, see their records, have their confidentiality respected. If you’re likely to die soon, it tends to sharpen your perspective on how you live.
In the 90s, as the nature and science of the virus became clearer, a new sort of HIV activism arose – treatment activism, based around hastening research into a cure as soon as possible and better treatment till then. This new activism was fraught with dangers and divisions. Should we demand new treatments that hadn’t had full clinical trials? Was it all a plot to sell drugs? Were those who understood the intricacies of chemistry and biology elitists? The now-respectable Terrence Higgins Trust, championing drug trials, found itself accused of being a “pharma front”.
Drugs trials didn’t always go well and yes, I believe some people died faster than they should have in the early 90s. But I also remember the stark terror for people of knowing they were facing death anyway, and trying any treatment that might delay that. And I remember busting the charlatans who sold people fake cures made of things like camel dung.
It’s easy to look back and see the story that dominates modern retellings of that chaotic time, the global treatment activism which changed the face of drug development forever. With the hindsight of knowing it worked to become critical friends of the researchers and the evidence all around of people who wouldn’t be alive without the drugs, we have the warm glow of knowing we were right. But at the time, it was scary and uncertain and anyone with any sense was prey to self-doubt.
And if anyone’s wanting to get nostalgic and say, why can’t we be activists like that again – we can, but the landscape has changed. People are more familiar now with a banner ad online than a banner at a protest. The frontiers now are reducing undiagnosed HIV, using treatment as prevention and tackling condom fatigue. The fight for decent funding and universal access is a constant but almost everything else has changed. We can’t go back to being 1990s activists, but we can go forward, as they did, and forge our own futures.