In December 1986 my partner, Brian, fell ill. We were spending the Christmas break at our holiday home in Suffolk. Brian spent all of Christmas Day in bed, and on Boxing Day morning I could tell he wasn’t getting better. I called a doctor friend to get his opinion. He took one look at Brian and said we must take him to hospital straight away.
Anyone who contracted HIV back then, as Brian had, was almost certain to die. On top of that, there was so much we didn’t know about how the virus worked or how it was transmitted.
How different to today. Public Health England has reported the first sign of an end to the HIV epidemic in gay and bisexual men since it began all those years ago. There has been a 32% drop in new HIV diagnoses among gay men in London. This is remarkable and something I never thought I would see in my lifetime.
As 1987 rolled around, my daily routine became going to work then straight to the hospital to see Brian. We had regular visits from a volunteer from the Terrence Higgins Trust’s buddy scheme, which had been supporting people for four years by then. Our “buddy” became a friend and a huge support to us both. It was amazing how the community rallied to help.
One day after work, as usual, I went to see Brian, but he was flustered – he’d just heard that Princess Diana was going to visit the hospital and he didn’t have anything suitable to wear. He met her the next day. She sat next to him, spoke to him and played with the teddy bears he had beside his bed.
On 28 May 1987, Brian died. He was just two months away from his 40th birthday. It was a tragic year for me, as I received my own HIV diagnosis too. Having cared for Brian in his last months, I didn’t know how long I would live and I assumed the worst. The government had recently launched its national awareness campaign, Don’t Die of Ignorance, featuring tombstones and icebergs, and every household had received the now infamous leaflet. Everywhere I looked there was the idea that HIV was a death sentence.
Three years later, I was told I needed to go on medication to control the virus. At the time only azidothymidine, known as AZT, was available. I was confused about whether I should start treatment. I’d heard about the dreadful side effects, and to be frank, I wasn’t sure if it would help me or hurt me.
My mind was made up after speaking to a doctor in the US whose wife had died of an Aids-related illness because they couldn’t access the medication. I’d been offered this drug, and it might prolong my life. I started AZT straight away, and did experience side effects.
But then, in 1996, my world changed for ever. Combination antiretroviral therapy became available. It was revolutionary. It wasn’t a cure, but it enabled people to live well with HIV, with few, or in my case no, side effects.
Today, I take just two pills once a day. Effective treatment works by suppressing the HIV virus. It is reduced so much that it can no longer be detected in the blood. We now know this also means, incredibly, that it can’t be passed on.
As medication continued to improve for those living with HIV, another game-changer came about in the form of pre-exposure prophylaxis (PrEP). This is a treatment taken by HIV-negative people to prevent them from being infected in the first place. This highly effective drug will soon be available in Scotland on the NHS, as part of a pilot in Wales, and as a trial in England.
I’m also amazed to see the improvements in HIV testing. An HIV test used to be a terrifying experience followed by an agonising wait, sometimes for weeks. Today, you can test yourself and get your result in minutes, even in the privacy of your own home.
And, 20 years since his mother reached out and touched people living with HIV, including my partner Brian, Prince Harry has picked up the mantle. He famously took a live HIV test on Facebook to show that there is nothing to be feared from knowing your status – something of which I think Diana would have been incredibly proud.
But I worry about complacency. There are still 17 people a day newly diagnosed with HIV in the UK. And the fall in diagnoses has so far only been seen among gay and bisexual men. HIV can and does affect all groups in society, so the job is not done. Every infection we stop not only helps to halt the spread of HIV, but also spares people a lifetime of stigma and discrimination. I know people who’ve been sacked from their job because they have HIV, and who have been rejected by potential partners.
As a 76-year-old, I am part of the first generation to grow old with HIV. We don’t yet know what lies ahead for people like me, but I’ve even been told “you’re probably fitter than many people younger than you”, because I’m having regular health MOTs and living a healthy lifestyle.
But I worry about stigma as I grow older and hear stories about terrible treatment of those with HIV in care homes, with staff who have never really had to think about the virus. And although I am healthy and speak openly about my status, I have experienced stigma myself. There is still a lot to do to bring public attitudes and awareness up to date with the medical reality.
Only last year, a Terrence Higgins Trust survey revealed that nearly one in three Britons wrongly believed that HIV can be transmitted by sharing toothbrushes, while one in five think that it can be transmitted by kissing. We knew this wasn’t true back in 1987, let alone 30 years later.
HIV no longer has to prevent people living normal, happy and long lives – yet too often it does. We have the power to stop HIV transmission, but it doesn’t just take medical interventions, it also takes societal change. I’ve seen incredible advances in my lifetime. It won’t happen overnight, but we can all do our bit to help bring an end to this epidemic once and for all.
Author: Michael Penn