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Let's Be Positive: Together, We Can Beat HIV-Related Stigma

01/12/2016 15:21
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On this year's World AIDS Day, I've been asked to give a talk on what the annual event means to me. I've decided to talk about HIV-related stigma, and how this has or hasn't changed throughout the thirty-plus years of the HIV epidemic.

We've made huge advances in the science of treating HIV and AIDS. But experiences that I've had over just the last few days remind me that we still have so far to go - that HIV remains not only an infectious agent that affects millions of people around the world, but a condition which society still finds very difficult to understand or accept.

Why is this? It's due, I think, to the fact that this infection is most commonly transmitted during sex - and, to one extent or another, sex brings out the moral judge in all of us.

To trace this tale, you can go back to the beginning, to the early days of the epidemic in San Francisco - before HIV was known to be the cause of AIDS. The gay populations in San Francisco, Los Angeles and New York were demonised with talk of GRID - or "Gay-Related Immune Deficiency". People called it a gay plague, claimed that it was a punishment from God for the debauched behaviours they claimed gay men exhibited.

People died. They died in their thousands.

I wonder how much more the American government may have done if HIV/AIDS had instead predominantly affected the heterosexual community. In the event, it took organisations such as ACT UP, the AIDS Coalition to Unleash Power, to unite and call the American government to account. The fact that the authorities' inaction was killing the gay community needed to be stated again and again.

But the stigma continued to creep well beyond homosexual populations. When it was disclosed that a young schoolboy named Ryan White had HIV, the amount of vitriol and hatred that was directed towards him was really quite unbelievable. The fear that this young boy would infect whole classrooms simply by sitting in them led to entirely irrational responses.

And yet this young boy's bravery was ultimately what began to change people's minds about HIV. Ryan chose to go on, and demonstrate that you couldn't catch HIV by sharing cutlery or by shaking hands. He sadly succumbed to the infection before adequate treatment was available, but he and others such as Rock Hudson did untold amounts for HIV awareness.

This power of celebrity has been an ongoing theme in the fight against stigma. Princess Diana made a huge dent in stigma by holding hands with a person dying from AIDS. The pictures of this event shocked the world - but perhaps into embarrassment, and reconsideration. The charity of which I am a Medical Director, Saving Lives, is proud to claim many celebrity ambassadors - and their faces and names win us a hearing in the mainstream press.

The media is crucial in defining the tone around HIV. I recall one of my patients, Chris - perhaps one of the first people to be diagnosed in the UK - telling a close friend in the church where he worked that he had HIV. Unfortunately, that person was not so good a friend as Chris had believed - and, on the following Sunday, The Sun invaded the church with photographers in tow. The resulting front page headlines? "AIDS Organist is Playing in your Church." Chris's parents drove the length of the country to prevent the newspapers making it to his elderly grandparents' house; they failed, and that was the last time his grandparents ever spoke to him. He subsequently lost his friends, and his job.

At least it's not like that anymore, right? Well, you'd like to think so. But, only yesterday during clinic, a young man, Matthew, told me about his diagnosis. He was a virgin before he met his first partner, with whom he believed himself to be monogamous. His partner, however, had other partners - and was HIV-positive. After a severe flu-like illness, Matthew wisely came to the clinic for a test - and was diagnosed positive.

At work, Matthew asked his boss - they worked for a well-known national name - if he could have some time off to visit the doctor. His boss asked him what for; Matthew thought he'd be open and tell the truth. The response? Matthew's boss called him "disgusting", said that Matthew made him sick. "If you'd have told anyone else on the shop floor, you'd have been punched," he spat. The following day, Matthew received a letter to say he'd been dismissed.

This was just two years ago. Matthew was overwhelmed by guilt and shame about his new diagnosis, amplified by the response of his employees and those he thought were his friends; he moved away from his hometown. Luckily, his parents were extremely supportive and he's now found a partner who educated himself about HIV, about the myths and untruths that are still in common circulation.

With this support, Matthew is now ready to speak out. "Being HIV positive needs a face. It needs people to 'stand up and be counted'," he says. "I would never want the way I was treated to happen to anyone else."

(Matthew is one of many positive people who have taken the decision to be open about their status and can be seen in our latest health promotion poster. He tells me he's the good looking one!)

People need to know that you can live a long, full and healthy live with HIV. They need to know that if you're on treatment it's virtually impossible to pass on the virus to others. And they need to know how it feels to hear jokes in the workplace or classroom about AIDS. HIV is not a term of abuse.

Without a doubt, it is this stigma which stops people testing. We spent some time at a Caribbean festival several months ago, trying to raise awareness about HIV and HIV testing. Having been used to doing promotions in the gay community, which by and large is relatively accepting of what we are trying to do, I was surprised how different a scenario this was. People would do 180-degree turns simply to avoid us; they did not want to speak to us.

This is the reason why people are not testing. It's the reason why we have people in our clinic who will not confide in anyone that they are positive, despite the fact that there may be another forty people in their church who share the same diagnosis. They are suffering unnecessarily, and in isolation.

I'm convinced that the only way we can actually beat this stigma is to have role models who are willing to stand up and say: "Yes, I'm HIV-positive - so what? It doesn't define me: I'm a teacher, a doctor, a nurse a student . I work in the City, I'm a footballer. I can do all of these things with HIV, and I can do them because I was diagnosed early and I'm on treatment."

The opposite is true: we ignore HIV at our peril. We've had eight people die this year in our hospital, all of them because of advanced, late-stage HIV to which we were simply too late for treatment to be effective.

Today, it's less HIV and more HIV-related stigma that's the killer. Stigma brings people to my clinic who have been living with HIV for too long before diagnosis. And they haven't been diagnosed because they are scared, ignorant or isolated.

That's why it's incumbent on us all to push back against misinformation; to stand up and be counted, and tell people about the importance of getting tested.

I hope on this World AIDS Day we can make some dent in the almost impenetrable wall that is HIV-related stigma. At Saving Lives, we've gathered together a diverse group of ambassadors - positive and not, from every walk of life - to play our part in this effort. I hope you'll do yours, too.

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