We've Come So Far In The Fight Against HIV, Yet Myths And Stigma Remain

Twenty years after I was diagnosed with HIV, I can no longer pass the virus onto my husband – the only thing that hasn't changed is stigma toward people like me.
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Today is the anniversary of Terry Higgins’ death, one of the very first people to die of an AIDS-related illness back in 1982. If you don’t know who he is, then you should.

Terrence Higgins Trust was set up by his partner and friends in Terry’s name, to humanise the epidemic and provide life-saving information about this new and deadly virus.

I’m proud to say I’m now chief executive of that very charity and even more proud of how much progress that’s been made in the fight against HIV. I only wish Terry had lived to see it, which is why I wanted to write a letter to fill him in on what’s changed – and, sadly, what hasn’t.

Dear Terry,

So much has changed since you died nearly 40 years ago. Your passing marked a turning point in HIV activism in the UK with the formation of a charity in your name which I am so very proud to have the honour of serving as chief executive.

In those years that followed your death, there were dark days. Partners, brothers, sisters, parents and friends were lost to this epidemic. It was painful and that scar is still raw for so many people even to this day.

When I was diagnosed with HIV in 1996, it hit me hard. I was convinced that my life would change forever and nothing would be the same. I was told that my time would be cut short and that I’d never get to the age I am today. At this point life-saving treatment was only coming on board and there were serious side effects.

Then something remarkable happened. Scientists started to discover that that the likelihood of passing on HIV is linked to the amount of virus in the blood, which is otherwise known as viral load.

By the mid-2000s, there was an increasing consensus among the scientific community that when the viral load is suppressed then it cannot be passed on to someone who is HIV negative. This can take up to six months from starting treatment.

Now, we can say with absolute certainty that someone living with HIV and on effective treatment can’t pass it on. Not won’t or don’t, but can’t. For context – that’s 97% of all of us diagnosed and on treatment in the UK. Back in the early days of the epidemic that you experienced before they even knew what HIV was, this would have been thought to have been nothing less than a dream, never mind a reality. But that’s exactly what’s happened. Treatment has saved my life and the lives of millions of other people around the world. That very treatment has allowed us to live without fear and live the same lives other people do.

In the two decades since I was diagnosed with HIV, I’m now happily married, healthy and cannot pass the virus onto my husband, it’s truly incredible.

One thing hasn’t changed though. Those stigmatising attitudes that were fuelled by misinformation and fear still exist in 2019. Polling we have published today reveals that almost half of people in the UK would feel uncomfortable kissing some one living with HIV. More than four in ten Brits believe everyone living with HIV can pass on the virus. While over one-third wouldn’t feel comfortable going on a date with someone living with HIV. The level of misunderstanding when it comes to HIV remains far too high.

That’s why today we are launching our Can’t Pass It On campaign. This campaign celebrates that progress we’ve made in HIV but also tackles HIV stigma head on. We want to make sure that every person understands the realities of HIV. It features Sadiq and Charity, who are both living with HIV and passionate about getting this message out there.

On Saturday, we will be marching at Pride in London and shouting loud and proud about Can’t Pass It On with your name written on our t-shirts and placards. Every cheer we get, every mind we change and every time we bust a stigmatising attitude about HIV, we will be doing it in your name. We’ll then be taking that message up and down the country to Pride events and African festivals, as well as touting for retweets on social media.

I won’t try and explain Twitter to you, Terry, but it’s a great way of getting information on people’s radar. Maybe in the next letter…

That’s because we know that if everyone knows that people living with HIV and on effective treatment can’t pass it on, we wouldn’t just end HIV stigma, we could end HIV transmissions full stop. That’s why I am so determined to get that message out there.

I hope you are proud of what we have achieved in the 37 years since you passed. I hope you are amazed at how HIV has been transformed in these years. And I hope you will be with us in spirit this weekend.

With love,

Ian and all of us at Terrence Higgins Trust

Ian Green is CEO of the Terrence Higgins Trust

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