Against all odds: 30 years of HIV

"I just can't believe I'm getting older. I feel very privileged" ... Peter Schlosser.
"I just can't believe I'm getting older. I feel very privileged" ... Peter Schlosser.

Peter Schlosser never thought he would see 25. He was 21 years old and studying at Sydney University, when he contracted HIV. It was 1984, and Schlosser and his partner decided to get tested before beginning their sexual relationship, fearing the new disease that was ravaging gay communities around the world.

They were both negative, but neither was told there was a window period in which the tests could be wrong.

''We thought we had done the right thing,'' Schlosser says. Six months later his partner started showing the first signs of illness. ''I had no hope,'' he says. ''There were no treatments, it was a death sentence.''

Only 4 per cent of people diagnosed at the same time as him are alive today.

''It's hard being so young and watching others die and wondering why you aren't. I was lonely,'' Schlosser says. ''In the early days you were pretty much shunned, there were no anti-discrimination laws and you were hearing horror stories every day of people being fired or kicked out of rental accommodation.''

Schlosser's partner died at the end of 1994, just a couple of years shy of the treatments that could have saved his life.

Schlosser nursed him through his last years, while battling cancer himself.

''It's terrifying, because you get a glimpse of what could happen to you,'' he says. ''Watching a person that you love decay. I had to do everything for him, bathe him, dress him. It was hard to see him go but in some respects it was a relief, because his suffering was so bad.''

The early HIV medications were brutal, stripping fat from his face, legs and arms and making him look so unwell that he feared going out.

But soon he will celebrate his 50th birthday.

''It's quite a change to go from having no future to living twice as long as you expected,'' he says. ''Everyone around me is bitching about getting older and I just can't believe I'm getting older. I feel very privileged.''

Today, 30 years since the first case of AIDS was identified in Australia (in an American tourist on holidays in Sydney), hope abounds: Australia led the world in developing a bipartisan political response that contained the deadly virus to a much greater extent than other countries.

And we are still leading the world in HIV research - potentially all the way to a cure.

Yet at the same time rates of new HIV infections have slowly crept up. Figures released last month show the number of new diagnoses increased by 8 per cent last year, and by 50 per cent during the past 10 years.

Don Smith, the director of clinical services at the Albion Centre and professor at the University of NSW, says complacency, combined with social media making casual sex all the more easy, is to blame.

When Smith started work 20 years ago at the Albion Centre, a community-based health centre that specialises in HIV, he was returning from eight years of caring for patients in Britain. As he left, he reviewed a list of 250 people he had been treating for AIDS-related pneumonia.

''They were all dead. They were all individuals I had been caring for, and some I had got to know quite well,'' he says. ''Now when I look at my patient list some have been coming for 15 years, and we are growing old together.

''The day-to-day reality at the coal face is more and more people are going on treatment and they are living normal lives. I'm telling my patients not to give up on their professional pathways. I'm telling them not to blow their super, because they will need it.

''AIDS has disappeared from Australia, although HIV is still here and is on the increase''.

Every now and then a person has the chance to change the course of history. The disappearance of AIDS from Australia can be put down to the actions of a few key political players: one of them is Bill Bowtell. In 1984, Bowtell was senior adviser to the federal health minister Neal Blewett, and together they helped shape Australia's response to HIV.

''It was very difficult, but the great thing that happened was that despite all the difficulties around the issue in terms of the mode of transmission, around sex and drug use, all of the Parliament at the time came together,'' he says.

At one stage 20 to 30 crossbench parliamentarians were meeting regularly for a parliamentary liaison group dedicated to AIDS.

All this happened against a background of deep fear and stigma, when even children could be seen as posing a threat. In 1985 the parents of a NSW girl who had caught HIV from a blood transfusion, Eve van Grafhorst, tried to enrol her in her local primary school. Other parents threatened to withdraw their children, and she was eventually told she could attend only if she wore a plastic face mask. The family ended up leaving the country.

''We had a very clear strategy to take the party politics out of it and to always have the science and evidence put in front of members of Parliament,'' Bowtell says, adding it is discouraging to see how fractured the present-day political process is.

Bowtell estimates Australia's quick response - including hard-hitting advertisements such as the Grim Reaper campaign and the implementation of needle exchanges - prevented between 20,000 and 30,000 young Australians from catching HIV.

''In the US, where it was used for party political purposes, they ended up with millions of people infected with HIV,'' he says. ''The Republican Party of the day rejected the science and used it for political purposes - with catastrophic results''.

Bowtell cautions that there are still millions of people living with the catastrophe of AIDS.

Today, on World AIDS day, it is estimated that 8 million people have HIV but cannot get access to treatment. Each year 350,000 children are born with it, yet if their mothers had been treated while pregnant they never would have passed it on.

But while activists like Bowtell fight for treatments for developing countries, scientists are pursuing a different end-game for HIV: a cure.

Professor Sharon Lewin, the head of the department of infectious diseases at the Alfred Hospital and Monash University, spent this week at the Strategies for an HIV Cure conference, sponsored by the US National Institutes of Health and held in Washington, DC.

It was the first meeting of three groups of scientists that have been given $70 million to find a cure.

If HIV is untreated, it spreads like wildfire throughout the body. It enters the cells, often the immune system's T-cells, and in doing so embeds into the DNA, producing new genetic material as well as new virus particles that can begin the process again in different cells.

In the process, the cells are usually destroyed, which is why doctors look for T-cell counts as a marker of damage to the immune system.

But HIV medication stops this.

''Within a month of treatment a person's virus in their blood can go from hundreds of thousands of copies per millilitre of blood to very low levels, less than 20 copies per millilitre,'' Lewin says.

The problem is that not all the virus particles that enter the cell begin on this destructive path. A few turn into sleeper-agents.

''We now know that the virus can hide in lots of places, and one of the ways it hides is effectively by going to sleep in a particular cell,'' Lewin says. ''It's like the embers of a fire just sitting there.''

But these cells can wake up again, and within a month of stopping treatment the virus returns to its previous level.

Lewin is in Washington to present the early results of her team's trial of a drug that is normally used for cancer, vorinostat, that appears to wake up the sleeper virus inside cells.

An interim analysis of the first 12 patients found it woke up the virus in the majority.

''Essentially we found it was reasonably well tolerated and it did what we expected it to do,'' she says.

The next step is to investigate combination therapies that will kill those cells once they have been woken up, a so-called ''shock and kill strategy''.

It's an exciting time to be working in HIV treatments, Lewin says. Techniques to prevent transmission by giving HIV medications prophylactically and circumcising men are proving effective.

Five years ago, an HIV patient living in Berlin was given a stem-cell transplant from someone who was naturally resistant to the virus.

He has not needed HIV medication since.

At the time, Lewin says, doctors attributed his improvement to the fact his donor was resistant to HIV. But three months ago researchers reported that HIV disappeared from blood in two patients who received transplants from non-resistant donors, and this week, another three were reported.

''At the moment we don't know if these patients have been cured as they haven't stopped their HIV medications yet,'' Lewin says. ''And we wouldn't use transplants to cure HIV, but it gives people hope.''

''It says, 'this is possible'.''

This story Against all odds: 30 years of HIV first appeared on The Sydney Morning Herald.