Trevor Banthorpe was diagnosed with HIV in the 1990s, and looked after his partner for five years until he died from the same condition.
Back then, he would never have imagined he could go on and have a healthy sex life, without any chance of passing on the condition to his partner.
But thanks to medical breakthroughs, that is now not just possible but already happening – and he’s getting married next year.
Trevor now works as a volunteer administrator at Terrence Higgins Trust to break down the stigma.
On World AIDS Day, he shares his remarkable story and reflects on how far we’ve come since the HIV epidemic first emerged – and how far we’ve still got to go.
I’ve seen a lot change over the years when it comes to HIV in the past three decades.
Medically speaking, the developments have been incredible. I’m living with HIV, I’m engaged to my partner, and together, we are living proof that HIV cannot be transmitted if you’re on effective HIV treatment.
I’m ‘undetectable’, which means the virus in my blood is suppressed to the point where it can’t be passed on – so HIV is no longer the ‘third person’ in our relationship.
But the stigma is still out there. People’s attitudes to HIV are decades behind the medical progress. In fact, today, we’ve learned from a Terrence Higgins Trust survey that 1 in 5 people still think you can get HIV from kissing, and 30% believe you can transmit HIV by sharing a toothbrush.
These were the kind of myths I used to hear back in the 80s and 90s, when the world was in a state of panic and fear, and knowledge of the virus was far more limited – so it’s shocking that they’re still so deeply entrenched thirty years on.
My HIV story began in October 1990 when my partner at the time had been repeatedly treated for various lung infections, with no apparent improvement to his health.
Over recent years I’d seen friends taken from us far too young, and Kenny Everett and Freddie Mercury had both been very recent prominent additions to the growing global tally of people lost to AIDS.
After my partner Ben* (name changed) was prescribed pills for asthma I decided to take a trip to the library to look up the symptoms of AIDS. The list of my partner’s symptoms were all ticked. By the following evening he was in a hospital bed with a diagnosis of Pneumocystis Pneumonia; an AIDS related opportunistic infection brought about by a severely depleted immune system. He had AIDS.
The consultant told me that if he hadn’t received treatment then, he would have been dead within the week, and he spent the next two months recovering in hospital. Once he was well enough to come home it was then my turn to get tested. In January 1991 I was diagnosed HIV positive.
Ben died in June 1995, aged just 44. After five years caring for somebody dying of the very same condition with which I had been diagnosed with, it was now time to focus on myself. I told myself that if I had two healthy years I would be happy; that was pretty much what was expected back then.
Fast forward to 2010 and I was still there and still healthy. In March of that year I met Javier on a dating app. I’d made the decision to state on my profile that I was living with HIV – I found that it was best to get it out in the open straight away, plus I figured that it would weed out those for whom it was a problem. During our online conversations Javier said that he too was positive.
I asked which HIV treatment he was on – but he told me that he had never been on any treatment. We discussed the importance of treatment and how it could get his viral load down to being undetectable, so Javier agreed to make an appointment at his local clinic and begin treatment.
Before the clinic could prescribe treatment, they needed to perform an HIV test. It came back negative. Javier had never actually been diagnosed with HIV, he had just presumed he was positive because he knew many of his previous partners were. There was a lot of re-adjusting to do in his head and over the next few days we discussed the options.
At my next appointment to see my consultant I couldn’t wait to tell him all about Javier. My consultant suggested that we might want to take part in the PARTNER trial – I’d never heard of it, but it sounded interesting – it was looking into the risk of transmitting HIV with an ‘undetectable’ viral load. Javier and I talked about it that evening and both agreed that it would be an interesting and worthwhile thing to get involved in.
Our first appointment with Janie, who was running the trial at the Royal Free Hospital, was the only one we had to attend together. Javier had his HIV test to confirm that he was negative; mine had been done during my routine check up, and yes I was positive.
Before we signed on the dotted line agreeing to participate in the trial, Janie commented that she would ideally like us to commit to it for the next two years. Javier would see her every six months for an HIV test; we’d both complete the questionnaires and post them back, and I would continue with my routine six-monthly check-up.
While walking down the corridor after leaving the clinic, Javier looked at me and said, ‘well, it looks like we’ve got to stay together then’, and kissed me. We’d inadvertently committed to each other for the next two years – it was really quite a romantic moment!
We’ve now been on the trial for six years. Whenever my routine clinic appointment was approaching Javier would make his appointment too, where he would have a test and we would both be given questionnaires. This is really all there is to it.
Each time Javier attends his appointment I get a little anxious, but each time the results came back as negative, all is well again.
Now that the results of the PARTNER study are in, it feels an incredible relief to have the confirmation that so long as my HIV remains undetectable, there is zero chance of transmission between us. We can continue to enjoy having a healthy sex life without any fear or guilt in the back of our minds. We can now look forward and plan our wedding next year, safe in the knowledge that I cannot pass the virus on to Javier.
All of these things were totally unimaginable back in 1990, just one part of the progress that’s been made since then. These results are confirmation of just how important it is to get HIV to an undetectable level, not just for the individual, but in the wider fight to stop the spread of the virus. It is also proof that those living with HIV can have loving relationships with somebody they love regardless of their HIV status.
At times it had felt like there were three of us in this relationship, now it can be just the two of us, just like everybody else.
My hope is that all of this important research will filter down and help bring an end to the stigma and prejudice that is evidently still prevalent in this country after all these years.
We’re a step closer to the day when being ‘clean’ is not a prerequisite for a date. We’re closer to removing the fear from the condition and allowing people to live happy and healthy lives enjoying the sex that they want without any guilt or fear. We’re closer to normalising HIV and testing. This is all something to celebrate, and I am proud to have played my part.
But it’s not over. Stigma still causes huge distress and prevents people from getting tested, so that’s why I’m sharing my story on World AIDS Day. The fight’s not over yet – but one day, it could be.