HOW TO PREVENT CANCERS

by Dyani Lewis

HIV was a death sentence for thousands of Australians in the 1980s and 1990s. But improved treatment has turned a once terminal illness into a manageable one.

When John Manwaring visited his doctor for the results of a blood test in 2006, he didn't know what to expect.

The 22-year-old university student was still digesting the news he had contracted the human immunodeficiency virus – HIV. Now he was returning for the first of what would become a three- to four-monthly ritual to monitor his vital statistics: the number of viral particles in his blood and the number of his own immune system's CD4+ T-cells remaining to defend his body against illness.

"He could tell I was visibly worried," recalls Manwaring. After reading through the results in Manwaring's medical charts, his doctor turned to him and said, "John, you're going to die a very old man and it's going to be from something other than this."

Just three decades after the first recorded death from HIV in Australia in 1983, people living with HIV no longer anticipate an early death. Access to affordable and effective medication is now the norm in Australia and HIV has become a manageable condition rather than the death sentence it once was.

Professor Basil Donovan, sexual health physician and head of the Sexual Health Program at the University of New South Wales' Kirby Institute, has been diagnosing and treating people with HIV and acquired immune deficiency syndrome, or AIDS, since the early 1980s. He ministered to the predominantly gay men dying from the emerging epidemic years before HIV was identified as the culprit and a reliable test was devised. Over the decades, he has seen the fates of his patients change drastically.

"In the '80s, it was essentially palliative medicine," says Donovan. Delivering a diagnosis meant "pretty well universal devastation", because there was no treatment to offer and little hope to give. But by the mid-1990s, therapies were becoming more widely available.

For Deanna Blegg, these life-saving drugs arrived just in time. Blegg had just turned 24 when she was diagnosed HIV-positive in London in 1994. After a six week bout of tonsillitis that the normally healthy and athletic traveller couldn't shake, she took herself to hospital and asked to be tested for everything, including HIV. She had no reason to suspect she might have the virus, but she wanted to be able to "tick it off."

When Blegg was told that she was HIV-positive, she was also told she would be considered a long-term survivor if she lived for five years.

By 1996, after returning to Australia, Blegg once again found herself in hospital, this time with Pneumocystis pneumonia, an 'AIDS-defining illness.' "I was what was called a fast progressor," she says.

Some people who contract HIV show no signs of illness for many years. But for Blegg, her immune system had been rapidly weakened and her depleted army of CD4+ T-cells, the targets of the virus, were no longer able to fight off the normally benign Pneumocystis residing in her lungs.

"By the end of 1996, [medication] was available," says Blegg, "and as a result, I am alive and kicking today."

By the end of September 2012, 6,852 people in Australia had died from HIV/AIDS. But Blegg and Manwaring aren't 'dying from AIDS.' They are 'living with HIV,' along with around 25,700 other people in Australia.

Donovan attributes the turn-around to the "close and durable relationships" between clinicians, government agencies and grassroots advocates within the communities most at risk of infection – gay men, intravenous drug users and sex workers. These relationships, forged out of necessity in the midst of a crisis, are widely acknowledged to have been instrumental in curbing the spread of HIV in Australia.

Now 30, Manwaring is studying postgraduate law, working as a bar tender and enjoying a loving, committed relationship. Like many gay men of his generation, he doesn't personally know anyone who has died from HIV. He also couldn't tell you first-hand what it was like taking the early anti_HIV therapies, toxic drugs whose side-effects were often so debilitating that many people took their chances with the virus instead.

But living with HIV isn't without its challenges. For those who lived through the height of the epidemic in the 1980s, survival itself can be bittersweet. "I've still got patients that lost all of their circle of 20 friends and they're the only one still alive," says Donovan.

While HIV diagnosis rates fell throughout the late 1980s and 1990s, in recent years the annual number of new HIV diagnoses has been steadily creeping back up, from a low of 724 in 1999, to 1,253 in 2012.

Donovan and his colleagues are also seeing a worrying trend of younger men being diagnosed.

The rising rates could, ironically, be the flipside of having developed successful treatment for HIV.

"People don't die of HIV anymore," says Donovan. "Every new infection now gets added to the pool, so the pool of infected people is getting larger, which means there are more people out there to infect other people."

In many parts of the world, HIV affects men and women in almost equal numbers, but in Australia it's more common in gay and bisexual men. In 2012, 88 per cent of those who had acquired HIV within the previous 12 months were men who have sex with other men. In Australia, women and a very small number of children make up less than 10 per cent of those living with HIV.

Although Blegg initially shunned relationships after her diagnosis, she did eventually meet a man she trusted enough to disclose her status to. In 1998, Blegg gave birth to a baby girl, a delight she had thought impossible after her diagnosis.

In areas where HIV is rife, such as Africa, Asia and South America, mother-to-child transmission is common: around one in four babies born to a HIV-positive mother will become HIV-positive during pregnancy, labour or delivery. Globally, 330,000 babies acquire HIV through birth each year. Others have the virus passed to them during breastfeeding.

But in Australia, the risk of transmission from mother to child is extremely low if a woman knows she is pregnant and takes antiretroviral drugs to keep her viral count down. "You can get pretty close to 100 per cent protection for the babies," says Donovan.

Blegg's daughter was born HIV-negative due to the medication that had saved her own life; and having a child was a critical point in Blegg's coming to terms with her HIV-positive status.

"I lost my shame when my daughter was about six months old," she says. "I thought, 'why am I feeling so ashamed of this?' Shit happened that I got this, but I'm not a bad person as a result of it.'"

The success in preventing mother-to-child transmission has raised hope that others can also be protected with anti_HIV drugs given at the right time. Post-exposure prophylaxis (PEP) is already being used, though infrequently, to reduce the chances of a person who has been exposed to HIV from becoming HIV-positive.

Trials of pre-exposure prophylaxis (PrEP), to protect those likely to be exposed to the virus are also underway, though early results indicate that protection is not absolute. A HIV vaccine, perhaps the ultimate protection against contracting the virus, still eludes the research community.

the new battle cry and campaign slogan of the Australian Federation of AIDS Organisations is Ending HIV. "Test more + Treat early + Stay safe" is the message.

"None of these are magic bullets," says Donovan. "You need to keep all of the strategies going simultaneously."

"Probably 20 to 30 per cent of people with HIV in Australia don't know they have it," says Donovan. Trying to reduce this undiagnosed pool is one of the main goals of the Ending HIV campaign. Rapid point-of-care tests that work in a similar way to home pregnancy tests have recently been approved for use by some health services, and home-testing kits could increase testing rates even further, though they are not currently available in Australia.

Treatment is also crucial. "We're now encouraging people to go onto treatment earlier," says Donovan, "because we know it greatly reduces their infectivity."

This is particularly important for couples where one partner is HIV-positive and the other HIV-negative.

Manwaring's partner is HIV-negative, as are the partners of 56 per cent of people living with HIV in Australia. "My viral load is undetectable, my CD4 count is incredibly high," says Manwaring, who adheres to his medication and monitors his health religiously. "We're careful."

The challenges for people living with HIV have morphed greatly since the first grim decade of the epidemic. In many cases, the challenges today are ones we all face, of how to live responsibly and ensure that our impact on those around us is a positive one.

Blegg exemplifies how HIV needn't hold anyone back from their dreams. She now has two children and is a world-class adventure racing and obstacle racing athlete.

She recently placed second in the obstacle racing world championships in the USA. "It's a really bizarre thing," she says, "because not only am I carrying HIV, I'm also 44 years old."

Her life bears little resemblance to what her doctors anticipated for her when they told her she had HIV 19 years ago.

"It's like a fairy tale life."

Published 29/11/2013