The State of the Virus

Back in the 1980s and 90s, HIV/AIDS was everywhere you looked. On the news, in your Geography text book, in the movies – even at the local library. We never knew “just who we were going to bed with” and if it wasn’t on, it just wasn’t on. These days, HIV/AIDS is still around, but you’d be forgiven for thinking otherwise. At the end of 2004, almost 15,000 Australians were living with HIV, and with condom use on the decline, infections are on the rise. YEN looks at the state of HIV/AIDS in Australia today and asks why we’re getting so complacent

When I was 9 years old, I was convinced I was HIV positive. I had contracted the virus, I believed, from a discarded syringe on a Sydney beach. Never mind that the syringe turned out to be a shell or that to this day there are no recorded cases of a member of the public getting infected from discarded injecting equipment – for the next three years I harboured a secret fear that by the time I hit my mid-teens I’d be dead.

It was an irrational childhood fear, for sure, but it was one that was characteristic of the times. In the early 1990s, pamphlets on HIV/AIDS lined the walls of my local library, children with AIDS would appear on TV with their grief-stricken parents (my parents and I would be next, I feared), and the Grim Reaper had solemnly informed us a few years previously that we could “never be sure just how many people [we were] really going to bed with”. It almost seems natural that, for children born in the 1980s, discarded syringes were right up there with kidnappers and monsters in the closet when it came to bogeymen.

As we moved into our teens, the messages about HIV and the importance of safe sex continued to run like a well-played record, with dedicated episodes on Beverly Hills 90210 and Janeane Garofalo’s character’s AIDS scare in Reality Bites. We learned about it in Geography and in PE, and having unsafe sex without first being tested was non-negotiable. The threat of infection seemed too real.

Fast forward to the 21st century and, outside the gay community, HIV is virtually off the radar. In contrast to their 1980s and 90s counterparts, HIV can seem like a non-issue to Australians in their teens and twenties today. “If anything now people think that they’re not at risk, that it’s a disease of the last generation, not of their generation,” says Professor Julian Gold, Director of the Albion Street Centre.

But HIV/AIDS isn’t a disease of the last generation. And for all the criticism the Grim Reaper campaign attracted, the dark angel was right about one thing – it doesn’t only affect “gays and IV drug users”. At the end of 2004, UNAIDS estimated that nearly 40 million people worldwide were living with HIV and AIDS. Almost half of them were women. In the same year in Australia, 14,840 people were living with AIDS. Approximately 6 per cent – or around 900 – of them were female.


THE GOOD NEWS
If HIV is no longer in the news, it’s at least partly because – in Australia, at least - a lot of the news is good. Where once AIDS was the second major cause of death amongst young Australian men, now 90 per cent of people diagnosed with HIV are expected to live for at least 20 years after diagnosis. And cooperation between governments, community groups and affected communities through initiatives like needle exchange programs and safe sex campaigns have kept the incidence of HIV in Australia lower than even most of the Western world.

One of the main reasons for the good news has been the improvement in HIV treatments - specifically the emergence of triple combination therapy in 1996, which reduces the number of HIV particles in the blood stream, can increase T-cell counts and has been highly effective at improving the quality of life for people living with HIV/AIDS.

“It’s hugely different now,” says Stevie Clayton, CEO of the AIDS Council of NSW. “Before 1996, the only drug available was AZT, which lengthened lives for only a short time with fairly significant side effects. So HIV was seen as something that would move fairly quickly into AIDS and which was a death sentence for the vast majority of people who had it.”

“Most people who are diagnosed today in Australia only need to take a couple of tablets each day – with some side effects, but they’ll stay fit and healthy for a really long time. The challenge now is less about debilitating short term side effects and more about long term toxicity. We still don’t know what it’s like to be on treatment for 20 years – the longer term effects on the kidney or the heart – but for the majority people diagnosed now, they stay in employment, and they’ll stay healthy for a really long time. Clearly that’s a huge change.”

Rob, 25, was diagnosed with HIV five years ago, when his boyfriend of just under a year suggested they both get tested. He says that when he first found out, it “blew [his] world apart”. “It came as a complete shock,” he says. “I had no reason to think I had it at all. The only reason I went was because of my partner. It was just sort of a routine, go get it for his sake, to put his mind at rest – never because I actually thought I would have it. I was completely devastated.”

“I got it from the very first guy I slept with, when I was 19. That was the only time I’ve had unsafe sex outside my long term relationships. And knowing what I do now, that’s the only time I would have been put at risk. By the time I got tested that was a year earlier, and I had no symptoms. So there was an entire year I had it that I had no clue.”

These days, Rob is faring well. He says having HIV hasn’t affected his relationships with his friends or family, nor has it precluded him from entering sexual relationships. Physically speaking, his T-cell count is high and his viral load is low – so low that five years after his diagnosis, he is yet to start taking medication. “It’s just a part of my life that I incorporate into everything else,” he says. “I guess I’ve gone from the point where I thought about it every day and got extremely upset to the point where I thought about it every day but didn’t really upset me, and now to the point where most days it doesn’t even occur to me.”


THE NOT-SO-GOOD NEWS
Jason, 27, feels similarly. In the six years since he was diagnosed, he says the one thing he’s kept consistent is not wanting to make his whole life about HIV. “I see it in a lot in guys who have this sense of HIV community, who were infected in the early 90s and late 80s and who’ve lost lots of their friends and their lovers and partners or whatever. For them, identifying as HIV positive is a strength, whereas for me it’s such a negligible part of who I am. So while I am involved in the community, I prefer to barrier that.”

Jason’s health has been affected by HIV more than Rob’s. He was put on medication immediately following his diagnosis, and recently took 15 months off work dealing with an HIV-related cancer. “Back in 2000 when I seroconverted, the strategy for dealing with HIV was very different to now,” he says. “We had the combination therapies, but back then the strategy was ‘hit hard and hit early’, so I had to take these seven tablets twice a day while I was still getting used to having HIV – trying to time them, trying to get meals around them – and it made me feel butt-ill on top.”

“Even before I was taking time off work, at one point it was unusual for me to have a full working fortnight. I was using all my annual leave as sick leave and when that ran out taking days off without pay. I think that’s fairly uncommon for people my age - I’d like to hope so. I definitely need to get back to full time work or something close to it, but I’m also keen to keep my health boundaries up as much as possible. I mean, I still go out and party every now and then but I won’t do it every weekend like I used to. I think it’s just about being respectful of the natural boundaries that exist.”

Nonetheless, he believes HIV positive people today are better off than their predecessors. “We don’t have that sense of loss, that sense of urgency. When we were infected with HIV there were options straight away for us – we may have been confused about them, but they were there.”

But has the sense that things are better now lulled us into a false sense of security? While he’s always disclosed his HIV status to his sexual partners, Rob says that in the five years since he was diagnosed, not one asked him his status. According to Julian Gold, this isn’t uncommon. “What we are finding [amongst gay men] is that unless someone explicitly says they have or don’t have HIV, positive people will assume that their partner is positive and negative people will assume their partner is negative.”

“The use of condoms has gone down significantly in casual high risk sexual encounters, the idea of negotiating safer sex between new couples is changing and cases of new HIV infection are rising.”

THE BAD NEWS
Attitudes amongst young heterosexual people are similar. Stevie Clayton says, “For the most part it’s just not on their radar, which is silly because STIs are absolutely out of control across Australia, and a lot of that is because young heterosexual people are not taking precautions. If the girl’s on the pill, they won’t worry about condoms. Chlamydia is going through the roof and it’s mostly young women who are being affected.”

The incidence of HIV amongst women in their 20s and 30s is also increasing, although the numbers are still low – according to the National Centre in HIV Epidemiology and Clinical Research, 89 Australian women were diagnosed with HIV between July 2004 and June 2005. The vast majority of them were infected through heterosexual intercourse.

“I’m not sure if it’s because more women are being tested, but we’ve had an increasing number of young women with HIV,” says Gold. “We tend to find that the diagnosis is made almost by coincidence. They may be going for an HIV test because they’re about to get married, they may be going to work overseas, they may be going for health insurance, but they tend not to go for one because they think they’re actually at risk.”

This sense of invincibility rings true for Liz*, 25. “People are more worried about pregnancy than diseases,” she says. “I get the general feeling that people pass HIV off as a disease that 'won’t happen to me'. I'm surprised by the number of intelligent people I know who will happily sleep with a random and get so wasted that they forget to use a condom. I've been sleeping with guys since Year 11 and for me, if it wasn't on it wasn't on.”

Kylie*, 24, agrees that HIV is seen as a bit of a non-issue in Australia, but says it’s different overseas. “When I was younger and going through my backpacker phase, I met a Belgian boy and we were getting quite intimate and there was a stage when he didn’t have a condom. I told him I was on the pill and he said we should use one anyway, because he was worried. It was the first time I’d ever come across it, and obviously it made me feel a bit grotty. In Australia, I don’t think people see AIDS as such a big issue,” she adds.

So why are we taking HIV less seriously? According to Gold, “People perhaps believe treatments are more effective than they really are. They believe that if they do get infected it’ll be alright, that there’s a cure, when there’s not a cure. The treatments mean that people with HIV have to take tablets every day of their lives, and those tablets have side effects - many times very serious ones. While they may keep you alive they come at a very high cost.”

Clayton says, “It almost seems bizarre that that’s the problem we have in Australia, when you look at it in the global context. 40 million people infected worldwide, a new infection every 7 seconds, an AIDS death every 11 seconds. That we’re struggling to get people to take it seriously.”

* Names have been changed.

- Rachel Hills

Published in YEN, June/July 2006.