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by Chris Creegan
27 September 2019
Don’t let stigma stand in the way of HIV eradication

Image credit: David Anderson/Holyrood

Don’t let stigma stand in the way of HIV eradication

When I saw Gareth Thomas’ remarkable one minute 24 second video on social media, my heart stopped. I wanted to respond immediately but had to sleep on it first.

The video was gathering plaudits by the second. It wasn’t that I didn’t agree with every one of them. But an instant click was too easy. This was personal.

I needed to listen to the former Welsh professional rugby player tell his story more than once. I had to watch the pain on his face and listen to the anguish in his voice. I had to digest its significance.

I will not have been the only gay man who lived through the ‘plague years’ to watch Gareth’s video and recall the Princess Diana moment. The image of the ‘Queen of Hearts’, radiant in pink, leaning gently into the man in the wheelchair to shake his hand. The man with AIDS.

It was 1987. I was two years into a relationship with my late partner, Lawrence, who was HIV positive. He had suffered the indignity of being approached in hospital by someone in a mask. Of lying in bed next to a pool of his vomit because no one would clean it up.

What Diana did, royalty or not, mattered. Because of stigma.

In 1993, my friend Tim died alone in his bed. The cause of death was pneumonia, but Tim died of shame. He had been afraid to share the ‘secret’ Gareth refers to, with anyone. Even with me.

A month after Lawrence died, in 1995, I had a letter in the Guardian in response to a piece about ‘sleeping with the enemy’.

“My partner knew the man who had infected him,” I said. “For them, it is too late. They are both dead. Ignorance and fear won’t save lives. Education and information will.”

A year later, drugs, in the form of antiretroviral therapy, which could have kept Lawrence alive, became available in the UK. If Tim had been able to share what he knew but was too ashamed to tell, he might be alive now, too.

More recently, PrEP arrived. It was a sweet pill to swallow after many bitter years because it offered the possibility to end HIV.

HIV is not new. We’ve known about it for four decades. For those of us who lived – as people with HIV, as survivors, as bereaved lovers, friends and relations – through the early years, it has cast a long shadow over our lives. 

Thanks to the extraordinary efforts of people living with, and dying from, HIV, we found a way to stop it killing more than two decades ago. David France’s prize-winning book How to Survive a Plague tells that tale. Tim Murphy’s Christodora offers a harrowing fictionalised account of the same story.

But what Gareth Thomas’ story reveals is that even though we found a way to stop HIV killing, and then to halt it in its tracks, we haven’t killed the stigma. HIV Scotland and others revealed just last week that people living with HIV have, illegally, been refused tattoos or asked about their HIV status by beauty treatment providers. 

That we have allowed stigma to continue to eat up lives is an appalling indictment on society. On us all. We can’t leave Gareth, or anyone else living with HIV, to have to contend with that alone.

Those who threatened to break Gareth’s story in the press, and shockingly revealed his HIV status to his parents, have rightly been condemned. He should not have been ‘forced’ to share his ‘secret’, to make himself ‘vulnerable’.

He should be free to tell his story to whoever he wants, whenever he wants. Or not at all.

In all the applause and the social media whirlwind, most of which has been uplifting, we mustn’t forget that the real story here is that Gareth had to tell his story at all.

But we shouldn’t let blaming unscrupulous journalistic practice obscure an uncomfortable truth. The behaviour of those reporters, and their paper, was possible because stigma persists. It’s up to all of us to stop it.

Gareth’s story is heroic. But the other story is of the pervasiveness of stigma which made his bravery necessary at all. 

Gareth’s story should be a wake-up call – as if we needed one – just as the Princess Diana moment was 32 years ago. It should shine a light in dark corners and galvanise us all. To end stigma.

Around the world HIV is still killing people, especially those in poor and disadvantaged communities. But here at home, people live with HIV and it’s in our gift to eradicate it.

HIV Scotland is 25-years-old this year. Their ambition is zero new infections in Scotland by 2030. It’s achievable.

Antiretroviral therapy means people living with HIV with an undetectable viral load (94 per cent of those receiving treatment in Scotland) cannot pass the virus on. Undetectable equals untransmittable. PrEP can block HIV if it gets into the body.

Only stigma stands in the way.

We can end HIV. We should. For those who didn’t make it. So that they didn’t die in vain.

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