Fighting the Stigma

by Broede Carmody

Australia is seeing the largest spike in new HIV cases in 20 years. While some health professionals are saying gay men need to be more vigilant, others and those living with HIV say we should worry about more than just the statistics.

John remembers the exact day he was diagnosed with HIV. It was 4 January 2006. He hadn’t had a test for about five months. His boyfriend at the time came home from work and said he had tested positive. Despite being in shock, John immediately organised a doctor’s appointment so he too could get tested.

When he arrived at the clinic, he was told he would have to wait two weeks for the result. Given his boyfriend’s positive status, John couldn’t wait that long. So he went to Planned Parenthood, who offered him an instant result. It came back positive.

Walk-in rapid testing programs for HIV are only just being implemented in Australia, despite similar programs being available in New Zealand and North America for some time. Dr Marian Pitts from the Australian Research Centre in Sex, Health and Society at La Trobe University welcomes the rollout.

“It means that people can walk in off the street, get tested, and get a preliminary result – which is a pretty reliable result – within 20 minutes,” she says. “And that is so different from how it was a couple of years ago, when you probably had to wait weeks.”

John thinks having to wait for a result puts off some individuals from getting tested regularly. His hope is that when rapid testing becomes widely available, more gay men will get tested for HIV more often.

“It’s not so much HIV itself, but the uncertainty associated with it. The uncertainty of, ‘Do I or don’t I?’ And that’s where I think rapid testing will make a difference. Because even if it’s two weeks you have to wait for a result, limiting that enables us to better confront these things.”

Speaking from experience, John says a quick result helps the individual to take proactive steps in looking after their health. He had one friend (when he was still living in America) who did not have enough money to pay for a rapid test. After undergoing a traditional screening, he was too scared to go back for the results. Eventually the Department of Health had to track him down. A lot of time and stress would have been spared if John’s friend had access to a rapid test in the first instance.

…people with HIV were talked about as though they were sluts or substance abusers

Dr Graham Brown from La Trobe University says rapid testing is effective because it helps target the right people. If someone suspects they have been exposed to the virus they can get a reliable result quickly, minimising the potential harm to others. However Dr Brown says for rapid testing to be effective, it needs to be inclusive and part of the community’s culture.

“Australian gay men probably have one of the highest testing frequency rates in the world. But if we’re going to get a real benefit and have a real chance to make a breakthrough with HIV, then there are a whole lot of cultural and community things we need to pull together to make that happen.”

This is where Pronto comes in. Pronto is a walk-in rapid testing service for HIV, the first of its kind in Australia. Located in Collingwood, clients have access to a fingerprick test that provides a result within 10 minutes. The environment is warm and welcoming with a queer-friendly mural adorning the wall of the waiting room. The testing facilitators also provide a conversational environment that is non-judgemental.

John says initiatives like Pronto are important because they help create an environment where the gay community can take ownership of its health. Throughout his education, HIV was always talked about as though “other people” would get it: poor people, drug addicts, homosexuals. This attitude extended well into his 20s – even in gay bars. People with HIV were talked about as though they were sluts or substance abusers. These horrendous assumptions made John feel as though he was dirty. He felt he had let not only himself down, but his entire community.

This deeply internalised stigma and self-loathing affected the way he dealt with seeking treatment and support. Nurses would hand him brochures about HIV support networks but he would not look at them. He says HIV felt like his own problem – a problem only he should have to deal with. It was only after moving to Australia that he sought help because he had nowhere else to turn.

“It was then that I realised how necessary these services are and how I wish I had taken advantage of them back home. I think I really could have used the knowledge that there were people out there willing to help, willing to hear my story and help me along earlier.”

John is not alone. While science has made significant progress in the last 20 years, the community’s attitudes towards HIV have not necessarily kept up.

…while antiretroviral drugs can fight the virus, they cannot fight the stigma that comes with it

Michael is a 29-year-old Melburnian. He works for a major corporation that designs and sells consumer electronics, and says if his co-workers were to find out he is HIV-positive then his relationship with them would change dramatically.

Michael was diagnosed with HIV a month before his 21st birthday, and says it came as a shock because he was just starting to experiment with his sexuality.

“I was always pretty vigilant and careful because of remembering what HIV was like back in the late ’80s and early ’90s. I was really scared of it. I didn’t think I was doing anything that put me in a high-risk category.”

He initially planned not to tell his family. But being so young, he was terrified and eventually shared the news of his diagnosis with his family and a few friends in order to help him get through what was a very difficult time in his life.

“My mum didn’t handle it really well. I guess people’s reactions are reminiscent of what people know about HIV. So when you tell people and they don’t know what that means, their instant reaction is: ‘Michael is going to be dead in a few years.’ Then you’ve obviously got to play the counsellor role.”

John says the stigma around HIV has not gone away. Instead, he feels it has just gone underground. While people have realised it is not acceptable to talk about HIV-positive people in the terms used in the early days (think of the grim reaper ad or the phrase “gay cancer”), John says there is still a sense of otherness  directed at those living with the virus.

“I really don’t want to say this – it pains me – but the straight people in my life have been much more accepting, much more open and understanding about me having HIV than any of my gay friends,” John says.

“It’s not to say that all gay people are like that, but I think it comes from the gay community not wanting HIV. Even if it’s not a big deal as it used to be. Speech you can confront, but when somebody is doing something unspoken – even if they don’t know they’re doing it – it becomes much more difficult to address the stigma.

“I realised nothing was going to change in terms of how people felt about HIV unless I and others like me were willing to talk about our stories.”

For Michael, it’s not just the stigma from his family that hurt. Dating presented its own set of challenges.

“I’m 29 now, so I’m starting to think about buying a house and settling down. It’s really hard because you’ll start dating and you have to tell that person you’re HIV positive.

“A lot of people are scared of it, and I understand that because I think back to when I was younger. If someone told me then that they were HIV positive, I probably wouldn’t want to continue seeing them either.”

For John, negative reactions from partners only served to reinforce his sense of self-loathing. But it isn’t all bad news. After describing what it is like to date when you are HIV-positive, John offers a small smile and says: “It slowly and surely gets easier.”

John is worried that due to current treatments there are many gay men who view HIV as “not a big deal”. He thinks the community needs to adjust this concern.

“Treatment has been a blessing but a curse, in a way. Until HIV is gone, treatment isn’t necessarily fixing the problem. It’s just preventing it from being as bad as it was before.”

Over 33 million people around the world are living with HIV. And large numbers of people in third-world countries are still dying from it. In some of Africa’s poorest countries such as Zimbabwe, many people  only have access to treatments developed a decade or more ago. Some medications cause sickness and fat redistribution – physical deformities that bring their own stigma. In South-East Asia, clients of sex workers make up the largest section of the population at risk of developing HIV. The sex workers themselves often need to keep working to afford life-saving medication.

John hopes that initiatives like Pronto will help Australian gay men have these sorts of conversations, as unsexy as they are.

“Having a 30-second conversation is far better than worrying about whether you just exposed yourself, and whether you are going to have to take the medications and deal with the stigma for the rest of your life.

“Whether you’re HIV negative or positive, having safe or unsafe sex, you need to talk about it. And that’s where I think gay men need to – and it’s going to sound harsh – but grow up and take responsibility for themselves.”

For a while now, the media has turned its attention to the prospect of a cure for HIV. Matt Dickson, the Director of VicAIDS, says he tends to defer his judgement to the scientists.

“I think for the last 30 years we have always seemed to think that a cure was only 10 years away. But each year, it seems another 10 years away.”

However John is incredibly optimistic. He says a cure isn’t a “holy grail”, but an actual concept people in Melbourne and across the world are working on. Dr Pitts agrees, saying that next year we may be much further down the track than we are now in terms of a cure.

But whether or not a vaccine is discovered, there will still be thousands of people across the world living with HIV. And while antiretroviral drugs can fight the virus, they cannot fight the stigma that comes with it.