Reporter: Michael Usher
Producers: Steve Burling, Danny Keens
It wasn't so long ago that AIDS was a guaranteed death sentence. And thanks to those confronting ads in the 80s, we all knew it.
They weren't exactly subtle - in fact, they scared the hell out of us.
But the shock tactics worked and the rate of HIV infection in Australia plummeted.
We thought we had it all under control. That we were playing it safe.
But the infection rate has shot up again, and it's now straight women who are among the most vulnerable.
HIV support groups:
(03) 9863 9414
(03) 9921 0860
Youth Empowerment Against HIV/AIDS
(03) 9682 2001
MICHAEL USHER: A stunning morning in Apollo Bay, on Victoria’s Great Ocean Road. While many sleep in, a few of Australia’s fittest are about to hit the sand and surf in a day-long sports festival.
DEANNA: Yeah, I woke up feeling good this morning – alert, and I've gone for a couple of little light jogs and the body's responding. So yeah – should have a good run this morning.
MICHAEL USHER: Deanna Blegg is a true ironwoman. She’s 41, but competes against athletes half her age. There's no doubt Deanna is in amazing shape and this is what she loves doing – racing and pushing her body to the limit. But what's not obvious is that she's living with a life-threatening illness and doctors once told her she had just months to live. You’re super-fit and you seem to be an absolute picture of health. Is that the case?
DEANNA: I am fit, I am healthy. However, I also carry the HIV virus.
MICHAEL USHER: It was 16 years ago that Deanna contracted HIV from unprotected sex with a former boyfriend. It’s a grim reality that Deanna lives with amid the challenges of daily life as a busy mum to 13-year-old Tia and a son, who’s just turned eight.
MICHAEL USHER: Tell me about that moment when you found out.
DEANNA: Nothing, nothing can prepare you for the words. The test results being positive. It took me a while to get my head around it cause I felt very, very ashamed. I just felt, “you idiot Deanne,” you know? “How on earth do you let this get into you?”
MICHAEL USHER: Alarmingly 1,000 Australians a year are now diagnosed with HIV, the deadly virus that can lead to AIDS. That’s almost double the rate of 10 years ago.
HEATHER: Cause I was infected from travelling overseas…
MICHAEL USHER: These women are proof the virus is no longer confined to a single group.
SUSAN: I think for all of us when we first got diagnosed that it shatters the spirit and I think I guess all of us just felt so isolated – so cut-off.
MICHAEL USHER: They’re all women, all HIV positive and like 98 % of all new infection, they contracted HIV through heterosexual sex.
SARAH: I mean, HIV is something that has never crossed my mind until it happened. It’s something that’s never spoken about, it’s something that’s never put to you as a heterosexual woman
MICHAEL USHER: Sarah is 24 years old and was diagnosed with HIV in 2008. So what did you know in school about HIV? What were you taught about HIV?
SARAH: Nothing. You know, you get told about pregnancy, you get told about other STIs but when you’re a young, heterosexual couple you’re not thinking about HIV. It’s like, because that happens in Africa and not in Australia
MICHAEL USHER: Sarah always heeded the warnings. She wasn’t an IV drug user and never took chances with casual sex. But like many people, once in a relationship, she believed she was safe. And because you were in this relationship you didn’t think there was a risk.
SARAH: No, we were in a long term relationship so you know, we weren’t practising safe sex. I went and got tested, came back positive and told him about it and he sort of thought it was possibly him who had it first.
MICHAEL USHER: Medical advances mean HIV can now be managed with proper treatment, but it’s a long hard road. Sarah faces a lifetime of powerful medication.
Do you get mad?
SARAH: Yeah. I think everyone that gets sick gets mad, you know.
MICHAEL USHER: Yeah.
SARAH: You know you don’t wouldn’t want it to happen…
MICHAEL USHER: And it’s not just the virus Sarah must live with – it’s also the prejudice, fear and stigma that still surrounds HIV. The stigma is still enormous.
SARAH: It is, it is. I mean...
MICHAEL USHER: How have you experienced that?
SARAH: I’ve had people tell me that I should just go die and that you know...
MICHAEL USHER: Are you serious?
SARAH: Yeah. Just you know, that I’m disgusting and that you know, I don’t sort of deserve to be breathing the same air, you know. Like, and that still happens today and...
MICHAEL USHER: How do you handle that?
SARAH: Oh well, you’ve got to let those people go.
MICHAEL USHER: If such ignorance exists today, just imagine what it was like for Deanna back in the early 90s, when she was diagnosed while on a backpacking tour around the world. When did you first know – what were the first signs?
DEANNA: I had really huge fevers, hot and cold, sweating massive like I just drenched my clothes. I knew something wasn't quite right. Over a period of about six weeks of time, I lost about 20 kilos of weight...like, it just dropped off me.
MICHAEL USHER: Twenty kilos?
DEANNA: Yeah, I just went to skin and bone in no time and it just got to a stage, I went to the doctors and said, “look, test me for everything” and that's when I also requested a HIV test.
MICHAEL USHER: The news was bad. And within months, the virus had progressed to AIDS. Deanna was on a cocktail of toxic drugs – almost 30 pills a day – that ravaged her body even more. At one point, she even considered giving up the fight.
DEANNA: I remember discussing it with the counsellor, talking about euthanasia. Like I just thought, “I don’t want to die, I don’t want to fade away.”
MICHAEL USHER: You explored that?
DEANNA: Yeah, for sure.
MICHAEL USHER: How to die?
DEANNA: Yeah. Not that I didn’t want to kill myself but at that time, I didn’t want my strong body to fade, yeah.
MICHAEL USHER: Thirty years ago if you were diagnosed with HIV, what was your fate?
SHARON: Thirty years ago, HIV was universally a death sentence and a pretty awful one at that.
MICHAEL USHER: Professor Sharon Lewin is Australia’s leading HIV expert.
She coordinates three research teams – at Melbourne’s Alfred Hospital, Monash University and the Burnet Virology Centre.
SHARON: People with HIV are leading really, really improved, almost normal lives. They still have to take tablets every day and there’s still side effects from the tablets.
MICHAEL USHER: Last year, Sharon and her teams made a breakthrough – they found where HIV cells hide in the body. It was a needle in a haystack discovery.
SHARON: It's a really, really clever virus on a whole lot of levels. Not only in its capacity to change all the time and evade the immune system and evade drugs, but this capacity to go to sleep in some cells and hide in these small pockets of the body.
MICHAEL USHER: The discovery means better treatment, but now people with HIV are living far longer, the drugs themselves are creating a whole new raft of health issues.
SHARON: So we see a lot of heart disease for example. Diabetes, liver problems.
MICHAEL USHER: Is the virus changing or is that the result of the medicine?
SHARON: It’s the result of people living longer with the virus.
MICHAEL USHER: Deanna Blegg has lived 11 years longer than doctors predicted. But remarkable success stories like hers have created new problems. There’s now a widely-held perception that the battle against HIV has been won.
SHARON: One of the fallouts from having such improved prognosis is that people aren't as scared of HIV as they were before.
MICHAEL USHER: That's a dangerous complacency.
SHARON: It's still not a walk in the park. People have to be in regular medical care, on treatment lifelong and there are still ongoing toxicities and complications from the treatment.
MICHAEL USHER: A number of support groups now operate specifically for heterosexual women.
SUSAN: Meeting other women, it’s like “oh you, oh you’ve got it too…oh really?”
MICHAEL USHER: Here they can be open about their health, their problems and their men.
SARAH: Relationships, I mean they do work in the long-term run but it’s like getting to that point, it’s…
MICHAEL USHER: Do you find it difficult having relationships now?
SARAH: Yeah, yep. Because it is, it’s that whole negotiating you know, like when to tell a partner, stuff like that and I’m – yeah. I mean, that’s just an absolute minefield that will take a while to learn how to negotiate through I guess...
MICHAEL USHER: Have you been able to get into a relationship?
SUSAN: I’ve had short-term relationships but again then, it’s just my fear of infecting them so it’s generally me that sort of backs away.
MICHAEL USHER: Many more personal challenges lie ahead for Sarah – perhaps the biggest for HIV-positive women is motherhood. To have her two children, Deanna knew there was a very slim chance the virus could be passed on.
DEANNA: How do you conceive without putting your partner at risk? Fortunately, we had a few options to work with and we decided to go natural. Two consenting adults aware of our risks. We spoke with our doctor and we conceived first go so that was low exposure, but yeah.
MICHAEL USHER: And your partner wasn’t infected?
DEANNA: That’s right, he was not infected.
MICHAEL USHER: And happily, neither were Tia and her brother. And from the start, Deanna’s been open with them about her condition. How proud are you of Mum?
TIA: I’m really proud. She’s my mum. I love her, it doesn’t really matter.
MICHAEL USHER: Deanna once thought she had just months to live. Now the finish line is a long way off.
DEANNA: I have also learnt through life that you can never predict your future, but I believe all being well that I will live a long life and I'll see my daughter reach well beyond 21.
MICHAEL USHER: And you weren't meant to live to 30.
DEANNA: That’s right, yeah. I’m 41 now and feel amazing and just, I celebrate each year. Yeah, 40 – fantastic. Bring on 50.
MICHAEL USHER: But Sarah’s just starting her life with HIV – and at times it’s a lonely, confusing journey.
SARAH: I feel like it’s branded across me but you know, I don’t look like I’ve got HIV but who does look like they have they have HIV?
MICHAEL USHER: If you had one message for young women about HIV, what would it be?
SARAH: HIV exists, it’s real and it can happen to anyone. Just to be aware and be safe and smart cause it could happen to you .