He is old enough to have sex, though, and now has HIV, the virus that causes AIDS. He was 21 when he was diagnosed after unprotected sex with a male friend. As the Queenslander, now 27, says on the film beaming across Federation Square, he didn’t ask if his friend was HIV positive … and the friend didn’t say. “I took a risk that got me to where I am now.”

Hooper’s story is repeated nationwide. Statistics show that since around the turn of the century, the rate of HIV infections – primarily a sexually transmitted virus – has been increasing in Australia and Queensland. The Seventh National HIV Strategy 2014-2017, released in July, and ratified by federal Health Minister Peter Dutton, found that in just one year – between 2011 and 2012 – there was a 10 per cent rise in diagnoses. “We are witnessing the highest rates of new infections in 20 years,” the report says.

The rise is off a low base. Australia is celebrated worldwide for its fightback against HIV, with between 28,000 and 34,000 people living with the virus, about 0.2 per cent of the adult population. But as former US president Bill Clinton told the 14,000 delegates at the global AIDS 2014 conference last month in Melbourne as they mourned the loss of six colleagues who were killed in the shooting down of Malaysia Airlines flight MH17 over Ukraine: “We live in the most interdependent age in human history … We are going into the future together whether we like it or not.” Australians are not quarantined from the 35 million people living with HIV worldwide.

Trends here are worrying – condom use is falling and HIV testing rates do not meet guidelines. An estimated 14 per cent of people with HIV do not know they have the virus. It’s a troubling combination, particularly in this era of smartphone applications such as Grindr which hook up gay and bisexual men – who represent 70 per cent of HIV cases in Australia – looking for no-strings-attached sex. Requests for “bareback” or unprotected sex are common.

Why the increase in risk? One reason is, ironically, one of the great success stories of the worldwide fight against HIV – it is no longer a death sentence. At least, not in First World countries where drugs that have revolutionised treatment are readily available. As Sir Bob Geldof told the conference, it is “staggeringly brilliant” that in just over 30 years, a completely unknown disease has been identified and made treatable, although a cure or vaccine remains elusive. The emaciated person with unsightly lesions who symbolised the AIDS victim of the 1980s and ’90s has disappeared – but with that welcome news has come complacency.

SIR BOB GELDOF IS UP ON THE STAGE IN ONE of his trademark shiny suits – purple this time – and recalling the fear that gripped the then frontman for the Boomtown Rats when friends started becoming ill in the early ’80s with a mysterious disease being linked to “lifestyle” choices. “Remember,” says Geldof, “I was in a rock ’n’ roll band, so shagging was part of the entire [environment],” he says to laughter from a packed room during the AIDS 2014 conference. “Those of my generation will remember the terror that we felt. There was complete confusion about exactly what is this thing, where does it start, where does it go?”

We know much more now. We know that “this nasty little f..ker”, as Geldof tags HIV, originated in West Africa, transferring from monkeys to humans sometime in the late 1800s or early 1900s. Some suggest the promiscuous colonial days helped spread the virus in Africa, others that it proliferated after unsafe medical practices on the continent in World War II.

A well-documented case of HIV in a human dates to 1959 in the Belgian Congo. Researchers believe that Haitians sent to the newly independent nation of Congo as administrators in 1960 returned home with it and spread it to the US in 1969. By 1978, gay men in New York and San Francisco were becoming ill and by 1981, the US’s Center for Disease Control issued the first clinical evidence of a cluster of homosexuals developing what would become classic “opportunistic infections” of the disease, pneumocystis pneumonia and Kaposi’s sarcoma. Some men had died.

Come 1982, the CDC coined the term AIDS – Acquired Immune Deficiency Syndrome. The first Australian AIDS case was reported in November 1982, a gay American living in Sydney; the first Australian death on July 8, 1983, in Melbourne. By 1985, about 4500 Australians were infected with the virus, which was formally named HIV, for Human Immunodeficiency Virus, in 1986.

We know now that the virus is spread by blood and bodily fluids through a variety of means: vaginal, anal and oral sex, sharing contaminated needles, transfusions of infected blood, and from mother to baby either before or during birth or through breastfeeding. It attacks CD4 T cells, weakening the immune system so that the body cannot fight infections or kill cancerous cells. People are said to have AIDS if they test positive for HIV and have one or more opportunistic infections. We know now it is not transmitted through casual contact. We were not sure of that in the early ’80s. What we did know was that in Australia, homosexuals and injecting drug users were developing AIDS.

Simon O’Connor, the executive officer of Queensland Positive People, an advocacy group for people with HIV, lived in Sydney in the ’80s when it was the epicentre of Australia’s infection and recalls the labels HIV/AIDS was given in the early stages. “It was initially referred to as GRID – gay-related immune disease – and there were even some people calling it WOG, which is wrath of god, so there was all that judgemental stuff going on,” says O’Connor. “It was pretty desperate.”

Paranoia was rife. In NSW, preschooler Eve van Grafhorst (pictured above), who contracted HIV through a blood transfusion, was hounded out of her home town in the mid-’80s, her family receiving a more compassionate reception in New Zealand where she died, aged 11, in 1993. O’Connor recalls how some staff at Sydney hospitals refused to deliver food to people dying with AIDS. “They’d leave food outside the door on plastic trays, everything disposable, and if the person in the room was too ill to get up and get the tray, they wouldn’t eat and then the cleaners would come through in gloves and masks and turf everything out.” He and others volunteered to serve the food, often making meals to take to the patients.

“You could see HIV, it had a kind of face, it was visible,” says O’Connor. “Especially around Oxford Street [in inner-east Sydney], you could see it. You could see people who were very obviously ill, you’d see people with Kaposi’s sarcoma lesions on their faces, and some people looked as though they’d just been released from a prison camp – really, really gaunt, very pale and very ill.”

It terrified the gay community – and mobilised it. Australia leapt to the forefront of the assault on HIV/AIDS, with homosexuals and intravenous drug users who felt the brunt of public panic leading the charge. By the mid-’80s, state-based AIDS councils were formed across the country and the newly elected, progressive Hawke Labor government decided to enlist the help of the key affected communities – homosexuals, sex workers and injecting drug users – to battle the growing pandemic. The health minister at the time, Neal Blewett, worked closely with his Liberal counterpart, Peter Baume, an effective bipartisan approach that Blewett said last month was unlikely to be achieved today because federal politics had become “nastier”.

Things weren’t so coordinated in 1980s Queensland, though. Then premier, the ultra-conservative Joh Bjelke-Petersen, declared his opposition to the “dirty and despicable acts these people carry out”. The tragic deaths of four Queensland babies from contaminated blood transfusions in 1984 heightened the fear of AIDS – and the anti-gay rhetoric when it was discovered the blood had come from a gay man. The fact he did not know he had the virus (HIV tests were not available until 1985) did not quell the antagonism. Gay bashings increased.

At times, it was high farce in the Moonlight State. In 1987, the year the federally funded Grim Reaper advertisement hit TV screens with the advice, “Have just one safe partner or always use condoms”, the Queensland government ordered police to rip condom-vending machines out of public institutions, such as universities. Other state governments worked with their AIDS councils, but not the Bjelke-Petersen regime. It refused to deal with the Queensland AIDS Council and denied it access to commonwealth money targeted at combatting the virus, leading to one of the more innovative approaches to government funding in Australian history. The money was channelled through the Catholic Sisters of Mercy, described by Blewett as “the most cheerful and altruistic of money launderers”.

Dr Wendell Rosevear remembers it well. Together with Dr David Orth, he started the Gay and Lesbian Health Service clinic in 1989 through the Queensland AIDS Council. “There were no HIV services available, still,” says Rosevear. “There was an obstetrician at the Royal Women’s [hospital] who used to do after-hours home care for men who were dying of HIV, but that was out of the generosity of his heart.

“We had to deal with meningitis and pneumocystis pneumonia and people getting Kaposi’s sarcoma tumours on their body, the purple tumours that were very stigmatising,” Rosevear recalls. “It was a very heavy burden. We’d have between one and five people dying in any week over the Brisbane region. Secrets, stigma, stereotypes and fear were the dominant factors we had to deal with.”

And the lack of effective treatment. In the early days, doctors could only try to relieve the symptoms. In 1986, a former cancer drug, AZT, which had been shelved because of side-effects, was trialled in the US to help prolong the life of AIDS patients. Many Americans believed it hastened death because it was too toxic – a high-profile example was Texan HIV sufferer Ron Woodroof, as portrayed by Matthew McConaughey in this year’s Oscar-winning performance in the film Dallas Buyers Club – but Australians desperate for treatment still lobbied to have it made available here.

“We started to be able to have AZT in 1990,” Rosevear says. “We didn’t have experience in how to use those drugs. We were thinking a higher dose might be more successful and so we would do the full blood count and if [patients] became anaemic, then we would reduce the dose. That was early HIV treatment, very naive treatment, really, because we had nothing else. It made people quite sick. Now we’ve got much more advanced treatments; we never use mono therapy any more, we use triple therapy.”

Concerted scientific efforts ushered in HAART, or highly active antiretroviral therapy, in 1996. Antiretrovirals, which had been used with limited success in the years prior, work

by suppressing the replication of HIV and its progression. HAART is the combination of three or more antiretrovirals that work in different ways in a single regimen and can lower the viral load – the amount of virus in the blood – to an undetectable level. It has been a life-saver.

And it came just in time for Deb.

SO, THERE YOU ARE, A 32-YEAR-OLD WOMAN on the Gold Coast, “a normal suburban mum with three kids doing the school runs”, and your husband falls ill. He’s rushed to hospital and diagnosed with pneumocystis pneumonia. The doctors run more tests. They sit you down and tell you the man you thought you knew has AIDS.

That’s just the start of the nightmare. He will die soon, they say. You will need to be tested, too. And your children, aged 12, 10 and 7. The children, thankfully, are clear. You, however, are HIV positive. You probably don’t have long to live, either, and you had better start organising who will care for your kids when you are both gone.

“There was a lot of anger,” says now 50-year-old Deb (who does not want her surname used) of those dark days in 1995. “Heaps of anger. There still is. I will never forgive him … but I do love him for giving me three beautiful children.”

Deb’s husband had a secret life. He had sex with men and, from what she has pieced together, also injected drugs. “He got dementia very quickly and brain lymphomas and was totally in denial of the whole thing.” She nursed him for 11 months until he died, “for my children’s sake”. At the time, she showed no symptoms and was put on an antiretroviral, boosted to the HAART regimen in 1996. In almost 19 years of taking the drugs, she has remained healthy and her viral load is now at an undetectable level and her CD4 count is high, another indicator of a strong immune system. She is tested every three to six months. “It’s only a small part of my life now,” Deb says. “I just keep on living.”

The reality is, more women around the world live with HIV than men. The Melbourne conference presented 2013 figures which show that globally, 57 per cent of all adults with HIV are women, with the risk of young women contracting the virus twice as high as for young men. Every minute, a young woman is newly infected.

Yet there is optimism that the world can beat HIV. Data from the Joint United Nations Program on HIV/AIDS shows that in 2013, HIV reached a tipping point – for the first time since the horror began, more people started treatment (2.3 million) than were diagnosed with the virus (2.1 million). New HIV infections have fallen by 38 per cent since 2001 and there are now 13 million people on antiretrovirals. Getting testing and treatment to some parts of the world is tricky and expensive and funding is tight, with Australia criticised at the AIDS conference by Geldof for deferring its commitment to contribute 0.7 per cent of its gross national income to the UN Millennium Development Goals.

The conference set its own ambitious target: to end (which means contain) the epidemic by 2030. In Australia, we’re aiming for virtual elimination of HIV transmission by 2020 but the Seventh National HIV Strategy admits the target comes “with enormous challenges”. A cure is some way off, although there is hope it lies in research aimed at awakening hidden “reservoirs” of HIV that stay dormant in cells, even when a patient is on HAART. These reservoirs make HIV a chronic infection and can re-emerge when HAART is discontinued, meaning treatment must be lifelong.

So the arsenal remains regular testing and treatment. Up until April, Australians had to wait for their CD4 count to drop below 500 cells per cubic millilitre of blood before being eligible for subsidised HAART. That limitation has been removed, as more evidence has mounted that the earlier the virus is hit with antiretrovirals, the healthier a person remains for longer. Side-effects are fewer than in the early days of antiretrovirals but remain, with liver function as well as cholesterol and insulin levels requiring monitoring.

Access to testing is being improved. Rapid HIV testing – which gives an indicative result in 20 minutes – has been available from the Queensland AIDS Council since late 2012, despite it being defunded the same year (under its former name of Queensland Association for Healthy Communities) in highly controversial circumstances by the Newman Government. Rapid testing has also been rolled out by the HIV Foundation, the new government-funded organisation, culminating in the opening of a dedicated testing centre in Brisbane’s Fortitude Valley this month. In July, the federal government removed barriers to accessing home testing kits.

There are also a couple of additions to the treatment arsenal which can be compared loosely with the morning-after pill and the contraceptive pill: post exposure prophylaxis (PEP) and pre-exposure prophylaxis (PrEP). PEP is a four-week course of antiretrovirals taken no later than 72 hours after high-risk exposure, such as a broken – or not used – condom. PrEP is a lifelong commitment to taking antiretrovirals for HIV-negative people, with likely users those who reject condoms, have multiple partners or whose partner is HIV-positive. Regular testing is imperative. It is being trialled in Queensland.

Treatment as prevention, particularly PrEP, is controversial, with concerns that it diminishes the condom message, and on a deeper philosophical basis that it panders to First World, high-risk people while those in the developing world can’t even access life-saving HAART. The counter-argument is that it is important to offer as much as possible in the “HIV prevention tool kit” because the old message of “if it’s not on, it’s not on” is faltering.

Complacency is the new enemy. The Gay Community Periodic Survey Queensland 2013 found unprotected anal sex had increased from 36.4 per cent to 41.7 per cent since 2009, the highest level recorded in the history of the survey. Headlines were grabbed in May when the Queensland Health Statewide Weekly Communicable Disease Surveillance Report found there were 93 cases of HIV in the first quarter of 2014, a 34 per cent spike compared with the previous year. A similar blip in infection figures was used in 2012 by Health Minister Lawrence Springborg to justify defunding Healthy Communities. The new beneficiary of the funding, the HIV Foundation, argues this recent big rise could be a result of more testing but admits the numbers are worrying.

Simon O’Connor of Queensland Positive People, who is on the HIV Foundation board, believes Queensland and Australia have been “sitting on our laurels” after being so effective in the early days of the epidemic. “If I’m honest about it, I think we’ve become a bit stale,” O’Connor says. “We’ve been pushing the condom message for 20, 30 years and you hear feedback from people in the community who say, ‘If I see an ad about condoms, I don’t even read it’.

“You do hear people say, ‘Oh, HIV, it’s all over, isn’t it? It’s all fixed, isn’t it? There’s treatments, what’s the big deal?’ I think we have fallen into this complacency. And that’s what HIV loves, of course, people stopping being vigilant.” That includes the heterosexual community, particularly given the “sexual revolution” on the internet and our love of travel to places with high HIV rates.

The internet is having a profound impact on how we copulate. You can log on to a site such as Grindr (or Tinder for straight people), key in your preferences and locality and voila, you are hooked up with a partner. Younger people are keen users of the apps, and are the same group more likely to dismiss HIV as a historical disease and who may be less confident about rejecting a suitor’s desire to have unprotected sex. Most of them would not have had sex education at school which, in Queensland, is not required to be taught.

“Instant, home delivery,” says Rosevear about Grindr, “and if it’s not available in five minutes, then they’ll go shopping somewhere else.” He says married men who are attracted to men but have “compartmentalised” their lives also use the app. Rosevear, a gay man, jokes that in his day, unless you went to a “beat” such as a public toilet for anonymous sex, you had to spend a bit of time getting to know someone you fancied, maybe even buy them a drink. Technology has changed that.

“With these apps, it’s so easy and many people will have multiple sex partners every day, five or more sexual partners in a day,” Rosevear says. “There is a big push where people are wanting what they call bareback or unsafe sex. If you don’t offer unsafe sex, they don’t want it.” Some of this activity is between HIV-positive men, but some is not. A 2013 survey of 725 gay and bisexual men from Australia, the Americas and Europe conducted by New York’s Community Healthcare Network found 46.4 per cent of users of such apps admitted to having “bareback” sex always, often or sometimes.

“HIV transmission in the whole world is decreasing but it’s increasing in America and Australia, especially among young men, so that’s something we can’t afford to ignore,” says Rosevear, who now runs Stonewall Medical Centre, a general practice with an emphasis on sexual health. “Something is happening; what is it? We need to help young men feel valuable and to gain knowledge to protect themselves.”

Homosexuality is much more accepted than 30 years ago, with out-and-proud Australians including young comedians Josh Thomas and Tom Ballard, Human Rights Commissioner Tim Wilson, and Qantas CEO Allan Joyce. But Rosevear points to a contemporary example to show the struggle for many in accepting their homosexuality and revealing it to society. “[Olympic swimmer] Ian Thorpe’s recent coming out is a good illustration of how we pick up messages in our world that make us think that our world is going to reject us,” he says. “The stigma is there. It’s subtle, but it’s real.”

That’s one reason Rosevear and the bulk of those who work in the HIV/AIDS arena believe campaigns of the future need to celebrate love and trust rather than return to fear-based campaigns such as the Grim Reaper. “We all get used to fear, we habituate it, we minimise it and we think it will happen to other people,” Rosevear says. “So we rationalise, excuse and take risks. If we are going to deal with an epidemic, we have to accept the humanity in all of us. That means we need to move from using fear as a motive to love as a motive. And love is, ‘I’m valuable, you’re valuable’. When I love me, I care about me

and I either use a condom or take a pill.”

DEB KNEW NOTHING ABOUT HIV/AIDS BEFORE she was diagnosed. “It just didn’t come into my world. It just wasn’t a part of it. I was so very wrong. In so many ways. I got very educated, very fast.”

Her first couple of years after diagnosis and the discovery of her husband’s secret life were filled with anguish, but then along came Paul. A friend of friends, Paul, who is HIV negative and is now tested regularly, knew Deb had HIV but saw the woman, not the virus. After some wooing, he proposed. Fifteen years ago, Deb gave birth to twins, Oskar and Alice. “I found out everything I needed to do to have a safe pregnancy and not pass on the virus to the babies and they were both HIV negative,” Deb says.

Sadly, Alice was born with severe disabilities unconnected to HIV and has since died. “Yep, had a few curve balls, more than most,” Deb says with a weak smile. She refuses to be beaten, however, and now does volunteer work with kids with disabilities, revels in the successes of her adult children – Tara, Ricky and Tasha – and is hoping grandchildren will come along soon. After years of keeping a low profile about her HIV status, she has decided to speak out because “people have forgotten about HIV”.

“It’s just not spoken about as much as it was,” she says. “It’s that thing that you can’t talk about, which I think is wrong. We need to speak about it and reduce the stigma.”

It’s the stigma that upsets Jesse Hooper, a prejudice that is generated inside the gay community as much as outside of it. In gay parlance, someone with HIV is “dirty”. “No-one can prepare you for that. Until you are diagnosed and experience it first-hand, you don’t realise what that’s like,” he says. Hooper is now a peer support officer for Queensland Positive People, helping recently diagnosed people weather the storm of emotions that comes with the news. “People are so unsure – what does this mean for work, for a career, for family, for love? Being able to share the parts of my journey helps.”

He remembers those feelings well. For days after diagnosis, he just sat and stared into space. “I had a sense of loss, like I’d lost my life, grief certainly, despair.” Today, he is living a big life, happy and fulfilled. His embrace of his positive status has given him a job he loves and, last year, he was the youth representative on the Australian delegation to the High Level Meeting on HIV/AIDS at the United Nations in New York. He, like Deb, has found his life partner.

The two are survivors, members of the post-HAART era of HIV – lucky enough to know that the virus is no longer a death sentence but scarred enough to know that “You have HIV” is a sentence you do not ever want to hear. l