Lee Suckling: We need to change the way we talk about HIV

The queer community is tired of hearing the same old tropes about HIV, writes Lee Suckling. Photo / Getty Images

OPINION:

Just ten per cent of New Zealanders know the following game-changing fact in the fight against HIV. That is, when a person has an undetectable amount of the virus in the body, it is impossible for them to pass HIV on to another person.

This means if (and when) you reach this undetectable viral load - enabled through once ground-breaking medication that has actually been around for years - you can’t pass it on through blood-to-blood or sexual contact. It’s scientifically undoable, even through condom-less sex.

This marvellous medical innovation is known within the community as “U=U”, which stands for “undetectable = untransmissible”.

It’s World Aids Day next week (December 1). Yet U=U isn’t in conversation or public knowledge in New Zealand. Why is this so important? Because the queer and HIV-positive communities are getting a little tired of the old tropes about HIV from those unaffected by it.

You know what I’m talking about. Cliches such as “it’s not a death sentence anymore” and “you can live a totally normal life now” are grinding, especially this far through the 21st century. They reek of the privilege of outsiders who don’t really live it. And they distract from the trauma, the shame and the stigma that positive people experience in their journey towards U=U.

Even that word “stigma” I don’t like. Stigma means negative connotations attached to something. But in reality, let’s call stigma what it is: judgment, blame, and distancing.

Normally from the outside, the existence of stigma is a way for those who don’t struggle with something to be irked by others’ experiences. Stigma is one thing, and one thing only. Misinformed opinions. And in the case of HIV, they’re outdated by several decades.

Yet within the queer and HIV-positive communities, a significant amount of anxiety can come with disclosing your status. Society treats this very personal medical information as a headline when it’s a person of note – see Queer Eye’s Jonathan Van Ness’s experience a couple of years back.

For regular, non-famous people, it’s the same except without the outpouring on social media of people calling you “brave”. Instead, and while you might receive some support, you might also be met (by close friends, family, and partners) with fear, anger, blame, conscious or subconscious physical distancing, and being thought of as “not clean”.

You must carry that experience, that anxiety, with you for the rest of your life because U=U doesn’t mean you’re “cured”. There remains no cure for HIV.

In practice, here’s what this stigma looks like (courtesy of one of the Burnett Foundation’s clients).

“Jason (a gay man from Christchurch using a pseudonym) said, ‘I’ve been undetectable for a while, I got on treatment as soon as I could after diagnosis. Being an older guy, I’m not super active or putting myself out there that much. I tend not to disclose because I’m not currently sexually active … it would be nice to have a partner to share life with but …

“One time, I thought I’d be bold and just come out and say it — the guy threw me out on the street. He yelled at me and told me to get out! Another time, a guy was really relaxed and knew about U=U so it was no big deal for him. It makes a huge difference in people’s perceptions about it.”

Imagine the trauma Jason carries into every new relationship. This isn’t about the invisible virus he lives with that otherwise seldom affects his life at all. That pain is given to him through other people’s lousy opinions.

When I speak to HIV-positive friends, few have been able to tell their parents or colleagues about their status. Aside from being nobody’s business but their own, stigma prevents them from being open and honest to all but those very close to them.

That’s a weight to carry the rest of us will never understand. The reality is, even in 2022, HIV isn’t interpreted like other health issues such as cancer (which is seen as “unlucky”, “predetermined” and “blameless”), type-2 diabetes, or addiction. There’s little sympathy for anyone with HIV and a great apprehension about telling anyone if you’ve got it.

Now for some uplifting news. Here in New Zealand, we’re in an incredible position right now. We have real chance of becoming one of the first nations in the world to end domestically-acquired HIV.

According to the latest HIV statistics from the University of Otago AIDS Epidemiology Group, only 43 cases of HIV diagnosed in 2021 were from local transmission. That’s the lowest New Zealand has seen since the late 1990s.

Think back over the last three years when the phrase “community transmission” is something we all obsessed over. Well, if we get every person with HIV in New Zealand to U=U status, we could potentially end community transmission of this virus. Wouldn’t that be something incredible to be proud of?

There’s only one way that can happen, however, and that’s with your help in throwing away old ways of thinking about HIV’s transmissibility. U=U is the sharpest tool in the box against HIV’s spread. Time to ensure everybody knows about it.