‘I am prepared’: Steve Spencer on becoming HIV positive in the era of PrEP and U=U

An HIV diagnosis is a life-changing event for anyone, but throughout the many decades gay and bi men have had to negotiate living with HIV, the news has represented different things.

From the darkest early days through to today, one underlying theme has been that of failure. Why didn’t we use a condom, ask the right questions, not give in to the temptation?

Now that HIV is in its fourth decade, we might consider how it feels for the new generation of people living with HIV to be diagnosed amongst the news that HIV notifications amongst Australian-born gay and bi men are at historic lows.

There is a new version of this so-called ‘failure’: why weren’t you on PrEP? But what if you were, and you still became HIV+?

One of those people is Steve Spencer.

You might have heard of Steve, he was one of the earliest adopters of PrEP and was a founding member of PrEP Access Now (now PAN).

Now, Steve is a person living with HIV. His way of disclosing this to the world was marching in Mardi Gras with The Institute of Many (TIM), the HIV grassroots movement I co-founded.

I sat down with him to chat about living with HIV in the era of PrEP and U=U.

Nic Holas: How did it feel “coming out” as someone recently diagnosed with HIV on the TIM Mardi Gras float and in an “HIV status update” on Facebook? How has the reaction been?

Steve Spencer: I’m feeling so wonderful about it! I’m so happy I’ve done it. What better way to come out as living with HIV than on a float at the 41st Sydney Gay and Lesbian Mardi Gras Parade surrounded by people living with HIV and our allies – it was simply fabulous.

This has turned a process of grief and anguish into an event of celebration – a celebration of my health, a celebration of my community, and a celebration of remaining true to myself.

It was certainly one of the scariest things I think I’ll have to do in my life but the response has been overwhelmingly positive. I was immediately embraced by those around me, I let out a tear of relief – even though it had only been a couple of months since my diagnosis, the burden of holding it in was becoming overbearing.

NH: Take me back to before coming out as a person living with HIV. What was your experience of being diagnosed?

SS: In mid-December 2018 I was diagnosed with HIV. Judging by my viral load and the timing of my last tests, we can safely assume that my seroconversion occurred only a matter of weeks before my diagnosis.

One of the features of being on PrEP was that I was linked to care – which involved routine appointments to get HIV and STI tests. This is how I found out that I was HIV positive. I immediately began treatment, as recommended by almost all public health authorities, and I achieved an undetectable viral load after just six weeks.

The period between diagnosis and achieving an undetectable viral load was one of the toughest periods of my life.

My diagnosis was a complete surprise, and I was in complete shock – as were my doctors. I hated this virus that travelled through my body and projected that into being fearful of my body.

[I went from] having been sexually liberated thanks to PrEP and being a poster-child for sex positivity to having to become chaste out of my fear of infecting someone else. It was a rapid and steep learning curve.

NH: Let’s talk about PrEP. You were on it. Hell, you were the PrEP poster boy for a while there. You have spent years getting in people’s faces letting them know PrEP exists, and how to get access it. How do you respond to questions about how you got HIV?

I was taught by my HIV positive elders from a young age that questions around how or why or when someone got HIV are irrelevant – all that matters is that I got HIV and that I need support and services to ensure my health and happiness are at their peak.

Questions around ‘how’ often come from a place of genuine intrigue or concern for oneself – the anxiety here is that PrEP users will want to know what happened so that they can avoid the same outcome – however the information is then often sorted to define how ‘acceptable’ or ‘bad’ the person’s seroconversion is.

I don’t want to buy into that narrative, but I am happy to address it respectfully.

NH: A lot of gay and bi men reading this might be concerned about their own level of protection. Are you prepared for the anxieties of PrEP to be hurtled your way?

I understand the anxieties experienced by PrEP users, I was a PrEP user for five years, and I was amongst the first in the country to use it.

When I saw the other cases of seroconversions on PrEP I had to check myself that I was seeking details for the right reasons and not simply out of intrigue.

Because we don’t know the precise time or circumstances of my seroconversion, we cannot know, with absolute certainty, how I got HIV, and I will probably never truly know.

I have been fortunate enough to connect with several of the other men around the world who have become HIV positive while on PrEP, and they too have the same loose ends.

I don’t like to use the term ‘PrEP failure’ which is thrown around in these cases, because PrEP is anything but that. PrEP is an enormous success – it is protecting hundreds of thousands of people from HIV in an empowering way, and alongside effective treatment for people living with HIV, it is critical part of Australia’s strategy to end HIV transmissions once and for all.

NH: You were using PrEP on-demand at the time you seroconverted (when a person takes PrEP before and after sex instead of taking it every day). Should people taking PrEP in this way be concerned?

Taking on-demand PrEP whilst seroconverting will put that method of dosing under scrutiny – however the research supports it as a legitimate and effective form of PrEP dosing and it is supported by doctors and health authorities across the globe – so the fact that one individual seroconverted while using that dosing method out of the thousands upon thousands also using that method does not make it illegitimate.

To alleviate the concerns of PrEP users I can rely on simple facts and statistics – there have only been several recorded cases of seroconversions while on PrEP out of the approximately 450,000 people using this preventative strategy, globally.

The chance of seroconversion is extremely remote and the evidence of PrEP’s effectiveness is still clear.

One word that often pops up is ‘unlucky,’ however, I don’t feel hard done by a lack of luck, this is just where life has lead me.

I encourage people using PrEP, or wanting to use it, to inform themselves and decide how to best prevent HIV, based on your sexual practices, and in consultation with your doctor.

This way you can remain confident that you are informed, know the different methods in how to take it correctly and, therefore, protected.

But always remember HIV prevention is an entire toolbox and you need to do what works best for you, your health, and the peace of mind for yourself and your sexual partners.

NH: Exactly. Now, you have to reach for some different tools in that toolbox in that you will rely on U=U to keep yourself healthy and your partners protected from HIV.  How has that gear shift been for you?

SS: Becoming undetectable was one of the happiest moments of my life – the burden of the diagnosis had become a bit lighter, the overall health benefits of being undetectable mean I do not have to worry about the long-term effects HIV might have on my body, the existence of this virus and its presence in my mind have become a part of me, under my control.

But the fear of HIV stigma remains. While I’m less afraid of telling sexual partners and friends and family now – it’s far easier to tell someone that your treatment is working rather than your treatment is ‘pending’ – the apprehension still exists, and because it is still early days in my life as a man living with HIV I have yet to experience many of the things I have been told to expect.

But I am prepared.

For more information about PrEP and on-demand PrEP, visit: www.rinseandrepeat.info