HIV Circa 2000 The Australian

John Stapleton
ALEX, 32, took a calculated risk.
The bloke in the cubicle with him seemed healthy. He was certainly extremely handsome. It was late at night.
After a rotten week at work Alex had gone out for a few drinks, intent on losing himself in the crowded hour that is Sydney's gay nightlife.

He wasn't quite sure how he felt, lonely probably.
One thing was for sure - he was horny. The bloke was the best looking thing he had seen in a very long time.
There were no condoms left in the cubicle but what the heck, the risks were low and heh, you couldn't let a moment like this pass unheralded.

By the time Alex was diagnosed with HIV he had forgotten the name of the man who had, for that brief and wondrous moment, seemed like the beginning and the end of everything.

All he knew now was that in some strange way he had passed from being one kind of human to another; from negative to positive, from clean to diseased, and in the passing he had joined a group he had never wanted to join, the HIV positive.

He would never forget the day when, after a decade of regularly testing negative, the doctor had told him the very last thing he wanted to hear.

Alex might be fictional but the scenario is not.
Almost 900 Australians a year are now testing positive for HIV, the highest levels for more than a decade.
It's not as if these days everyone doesn't know what causes it.
The rising rates are the first time the trend has been upward since the mid 1980s, when, as a freshly diagnosed disease, some 2,000 a year were testing positive.

Those figures have been on the decline ever since.
The peak year for diagnoses was 1985, the lowest year was 1999, when diagnoses were down to 724 nationally.
That has now increased to 892 as of last count - for the year to September 2003.
The cumulative total of deaths in Australia is now 6319, Deaths peaked in 1999 with 759 deaths from AIDS. As anyone who has watched a friend die of AIDS knows, it is not a pretty way to go.

Thanks to anti-viral drugs and new therapies those figures have now dropped to around 80 deaths a year.
Researchers at the Centre for HIV Epidemiology and AID Research suggest that one bright spot, if it can be called that, is that and unlike other countries Australia is showing low rates of HIV transmission through heterosexual or injecting drug use - 22.6% - with some suspicion that this is an over-estimate due to reluctance to report homosexual or illegal drug activity.

There are now a scattering of people right round the country who have been living with HIV for 20 years.
Many of them did not expect to be alive in the new millennium. Many, having been preparing to die rather than live, are in poor economic circumstance.

While diagnosis once meant an almost certain death sentence, those diagnosed now have to accept that while they might not die tomorrow they will need to maintain a solid diet of medication for the rest of the life.

And they have to accept what to outsiders may seem obvious but to them is a cruel blow: they have been radically devalued in the extremely competitive sexual market place that is the modern gay world.

Brent Allan, education spokesman for the National Association of People living with HIV/AIDS, has run workshops for the freshly diagnosed. He says the day he was told he was positive, more than five years ago now, he was ``knocked for six''.

``People in the first one or two years of their diagnosis are really reluctant to talk about it,'' he says. ``There is still an enormous amount of shame, stigma and discrimination against HIV people, particularly in the gay community.

``Often they are terrified to tell anyone they have sero-converted. They don't want to hear that they should have known better. They already feel they have failed. They made a mistake. Often when they tell people that gets reinforced. Then they become really quiet.''

The puzzle remains: why, when everyone knows that unprotected anal sex is the primary method of transmission, are people still catching one of the most feared diseases of the modern era.

Allan says most people acquiring HIV are in their early 30s and have been sexually active for their entire adult life without becoming positive.

``These are not young guys who are sero-converting,'' he says. ``They know what is going on. They have taken calculated risks in the past and not become positive. They get tested regularly. They are trying to balance a fulfilling sexual career with condoms. They maintain consistent safe sex practices, but occasionally some things happen. Let's face it, most men would prefer not to use them.''

He says he thinks research evidence will soon prove what he already believes, that the rise is not being fuelled by people who know they are HIV positive but by people who don't know they are positive and don't want to be tested because they see the discrimination in the gay world against the HIV positive.

``Most men will not go to a doctor unless the situation is extreme, they don't want to seek assistance,'' he says. ``We have gay men who find out they are HIV positive when they have AIDS and are in hospital because they are sick.

``The only way we can address the problem is to question why we haven't addressed the stigma in the gay community against being HIV positive. Then we wouldn't have people fearing testing because they fear the results.''

Australian Federation of Aids Organisations spokesman Don Baxter also says the rise in infections is being caused not by people who don't care but by men taking occasional risks.

He says some gay men are making quite sophisticated risk calculations. They might run out of condoms, and make the assumption that because their partner is on treatment they have a low level of infectiousness.

``It is a bit like crossing the street when you are in a hurry, you would normally go to the stop light but just on the odd occasion you run across the road,'' he says. ``It is a risk calculation: just this time will be OK.''

He said professionals in the field were surprised that the rise in infection rates had not happened earlier.
``Our social research told us more people were having unprotected anal sex,'' he said. ``We have had dramatically increasing rates of syphilis and gonorrhoea, which make you more susceptible if you are HIV negative and more infectious if you are HIV positive.

``We know the rise is not complacency - there would be a lot more infections if that were the case.''
Researcher with the National Centre for HIV Social Research Sue Kippax said while the vast majority of gay men were continuing to use condoms there had been a gradual increase in unsafe sex.

``HIV is not being seen as something that kills you,'' she says. ``There has been a lessening of fear.''
Martyn Goddard, a former editor and journalist and now health policy activist who has been HIV positive since the 1980s, says the rising infection rates in Australia are being reflected necessarily. He is one of those who never expected to make it to 2004.

He says the rising rates show the importance of continuing education campaigns and innovative ways of dealing with the epidemic. After all, now that they're not all dying, HIV positive people can prove an enormously expensive drain on the health system.

``It has become politically safe for a right wing Federal government to neglect AIDS,'' he says. ``The epidemic has lost public profile. AIDS is seen as yesterday's problem. Most heterosexual Australians who don't use drugs don't have to worry about AIDS.

``The approach to AIDS in Australia, which was a partnership between government, researchers, doctors and the community, set up by Blewitt, has been effectively ditched.''

For those few who survived the first wave of the epidemic in Australia, some of what they have been through is unimaginable to most people - the constant sickness, and watching as all your closest friends pass away.

``In terms of the experience of living with it: we are no longer going to funerals every couple of weeks. We are no longer planning our own funerals, which all of us did. All of us thought about what we would like to happen at our own funeral.

``I remember walking to work down Oxford Street in Sydney and seeing someone I knew sitting in a coffee shop on the corner of Taylor's Square looking bad.

``I asked, what's wrong?
``Four of my friends have died this week, that is what is wrong, he said.
``What has changed with the anti-virals is, we're not going to funerals all the time anymore.''
So many relatively young men who died had held out hope almost to the end that a cure would be found.
``A lot died because they just got sick too quickly,'' Goddard says. ``For survivors it has been a matter of luck: because you were infected with a less virulent virus or you were more resistant than others.

``It is purely a lottery that I am alive today.''
While anti-viral drugs have changed the landscape of the disease, making survival more a case of diligence and medical science, everyone diagnosed with HIV has the thought of years of failing health, sexual ostracism, social isolation and death hovering in the back of their mind. The freshly diagnosed still plan their own funerals, even if that funeral might not come as quickly as it did for their brothers.

It is a journey another 900 people will begin this year.