Silence in the time of plague: [1 All-round Country Edition]
Stapleton, John. Weekend Australian [Canberra, A.C.T] 26 June 2004: 22.
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Abstract
Researchers at the Centre for HIV Epidemiology and AIDS Research suggest that one bright spot, if it can be called that, is that Australia, unlike other countries, is showing low rates of HIV transmission through heterosexual sex or injecting drug use — 22.6 per cent of new cases — with some suspicion that this is an overestimate due to reluctance to report homosexual activity.
“People in the first one or two years of their diagnosis are really reluctant to talk about it,” [Brent Allan] 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 seroconverted [developed detectable antibodies to HIV in their blood serum]. 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.”
“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 theproblem 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.”
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HIV cases have risen sharply in Australia and health authorities are worried about the cost to victims and taxpayers. John Stapletonreports
ROB Sutherland, now 23, was 19 and had just come out of a relationship with his girlfriend of two years when, one drunken night, his life changed forever. He contracted HIV from the very first man with whom he ever slept.
“I was kind of just questioning my sexuality. I didn’t think I was gay, I was very unsure of it,” Sutherland recalls. “I had never been to a gay club or anything before and was just starting to experience that. I went home with a guy. It happened like that. He was quite a bit older, about 30. We mucked around without a condom and that was that. I had no idea at the time. I knew only vaguely what HIV was. I was pretty naive and I was drunk at the time, which is pretty common.”
Sutherland says he didn’t find out he was HIV-positive until more than a year later, when he was “dating a guy” for the first time. He says he would probably never have gone for a test except that his then boyfriend had one and persuaded him to do likewise. Theboyfriend was negative. He was positive.
Sutherland says he tries not to think about the person who gave him HIV and whether the man knew he was positive.
“One drunken moment and my life has been changed in a drastic manner,” he says. “The hardest thing to deal with is to think about it. But I don’t blame him and I don’t hold any malice towards him.”
Almost 900 Australians a year are testing positive for HIV, the highest level 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, 2000 people a year were testing positive. Those figures had been on the decline since.
Researchers at the Centre for HIV Epidemiology and AIDS Research suggest that one bright spot, if it can be called that, is that Australia, unlike other countries, is showing low rates of HIV transmission through heterosexual sex or injecting drug use — 22.6 per cent of new cases — with some suspicion that this is an overestimate due to reluctance to report homosexual activity.
A scattering of people across the country 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 circumstances.
Although 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 their life. They also 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, he was “knocked for six”.
“People in the first one or two years of their diagnosis are really reluctant to talk about it,” Allan 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 seroconverted [developed detectable antibodies to HIV in their blood serum]. 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 on the whole not young guys who are seroconverting,” 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.”
Allan says he thinks research evidence will soon prove what he believes — that the rise is not being fuelled by people who know they are HIV-positive but by those who don’t know they are positive and don’t want to be tested because they see the discrimination in thegay 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 theproblem 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 suggests the rise in infections is caused by men taking only occasional risks. Baxter says some gay men are making sophisticated risk calculations. They might run out of condoms and make theassumption 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 stoplight, but just on the odd occasion you run across the road,” he says. “It is a risk calculation: just this time will be OK.”
Baxter says professionals in the field are surprised that the rise in infection rates did not happen earlier. “Our social research told us more people were having unprotected anal sex,” he says. “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.”
National Centre for HIV Social Research researcher Sue Kippax says the vast majority of gay men are continuing to use condoms but there has 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 ’80s, is one of those who never expected to make it to 2004. He says the rising rate shows 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,” Goddard 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. Theapproach to AIDS in Australia, which was a partnership between government, researchers, doctors and the community, set up by [Labor health minister Neal] Blewett, 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,” Goddard says.
“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 any more.”
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.”
Although 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 theback of their mind. The freshly diagnosed still plan their funerals, even if that funeral might not come as quickly as it did for others.
It is a journey another 900 people are beginning this year.
* The peak year for HIV diagnoses (about 2000) was 1985. The lowest year was 1999, when new cases were down to 724 nationally.
* That increased to 892 in the latest count, for the year to September 2003.
* The cumulative total of deaths from AIDS in Australia is at least 6319. Deaths peaked in 1999 with 759 deaths. As known by anyone who has watched a friend or relative die from AIDS, it is not a pretty way to go.
* Thanks to anti-viral drugs and new therapies, deaths have dropped to about 80 a year.