When her daughter was born, Kath Leane scored the usual trifecta of new mother experiences: elation, trepidation, sleep deprivation. But for Kath, something extra accompanied the birth – sterilisation.

“I had to have a caesarian section,” Kath recalls. “I remember about 24 or 48 hours after, the doctors coming to me to say, ‘Everything went ok, and we’ve got some good news for you, by the way. While we had you open we thought, oh well, we will just tie your tubes because that means you wouldn’t have to have another operation’.”

“They should have asked me about it, or talked to me about it. My partner was there and he has no memory of it being mentioned to him… it was said as though they’d done me a favour, or something.”

Despite how it may sound, Kath is not recounting a horror, straight out of a Victorian-era Home For Unwed Mothers. Rather, she’s talking of a South Australian hospital.

It was 1989, and Kath was 30 years old. How, in modern times, such a thing could happen is the story of a wider health and social crisis. Confronted with a frightening new disease, doctors and their patients struggled to find ways through. Sometimes, during those struggles, they achieved some wonderful things. At other times, they did not. Kath’s life is the embodiment of both.

Kath Leane found out she was HIV-positive in 1987. The Grim Reaper TV campaign was scything its way through Australian living rooms, warning of the dangers of AIDS. One morning, Kath woke up feeling sick.

Kath in 1989. Supplied image

“I was working in childcare and I already knew I had Hepatitis C,” she says. “So I went to the local doctor and said to him, ‘Look I’ve got Hep C, can you check my liver levels?’ As I walked out the door, over my shoulder, I said, ‘Oh by the way, can you just give me an HIV test as well’?”

Kath left the building, and didn’t give it another thought. She didn’t twig a few days later, when the doctor called and asked her to come back in.

“I sat down and he said, ‘Look, I don’t know how to tell you this, but the good news is your liver levels are pretty good. The bad news is that you are HIV-positive and you are pregnant’.”

Kath adds, with some understatement, “Of course, you don’t forget the day you find out you are HIV-positive, but it was a lot to take in. There was so much emotion… the details become a bit blurry.”

Soon, she discovered her partner was HIV-positive as well.

In those early days of AIDS, Kath wasn’t simply facing own turmoil. Fear infected far more Australians than the virus ever did. So much was still either unknown, or at best, uncomfortably new.

The Human Immunodeficiency Virus – the cause of AIDS – had only been identified in 1984, a mere three years before Kath became pregnant. An HIV test became available in 1985, but the antiretroviral drugs to treat it were years away. Not a single thing was available to halt the virus from devastating the immune system and prevent the onset of AIDS.

Doctors and patients were in the same place: one with no hope to offer, the other with none to look forward to. As a young immunologist beginning his career, Professor Steve Wesslingh remembers how dispiriting it could be, and how determined he was to help fix that.

“It was certainly frightening, and people were dying very quickly,” Wesslingh says. “That was pretty unnerving, but I also felt that we were trained for this, and we needed to take it on.

“There were a lot of people who were worried about things like touching and being in a restaurant, so that was an awful lot of work. There was a lot of work in hospitals as well… nurses who wouldn’t touch HIV patients. It was the nature of the time.”

Already with a four-year-old son she now never expected to see grow up, Kath felt she had to end her pregnancy. After doing that, she waited.

“I just thought one day I’ll wake up and I’ll be sick, and then a few weeks later I’ll be in hospital, and then a few weeks later I’ll be gone. We were told, you have two years to live at the most.”

Despite becoming sick – quite gravely on many occasions – Kath defied both her own expectations of death, and the lack of effective treatments. She lived.

In 1989, Kath became pregnant again. She’d always wanted a big family, so there was never any question: she would keep this baby. A caesarian offered the best chance of stopping the virus passing between mother and child. Still, as the day approached, Kath was nervous.

“Everyone expected she’d be born positive,” she says. “You know, I’m positive, my partner’s positive, of course she’ll be positive. But I was given this drug, I think it was called AZT, three months before she was born… in the most incredible doses, every five to six hours.

“I would hold my breath every time I kissed her so I wasn’t breathing my germs over her.

“I felt very guilty because I was sure that here was this innocent little baby that I’ve probably infected with HIV. It wasn’t until she was two years old that we knew for sure that she was HIV negative. Sometimes I think I was given a miracle.”

The miracle had two sides: Kath would never bear more children herself, but she did have an HIV-negative daughter. That healthy baby girl is now a woman in her 30s, with her own children. Moreover, Kath lived to be part of all these good things.

Kath and her daughter, soon after her birth. Supplied image

The AZT she took was crucial. It was the first of the antiretroviral drugs. Soon there were other drugs, also known by a gaggle of letters and numbers – D4T, DDC, and so on.

“These drugs were taken right across the day, 24 hours,” Wesslingh says. “People were setting alarms, taking drugs every 4 to 6 hours. There was a lot of nausea and vomiting and diarrhoea. Even though now we are able to offer treatment and hope, which was really important, it was still pretty unpleasant for the patient.

“They could have been taking up to 30 or 40 tablets a day, so, yeah, they were rattling!”

Science had begun knocking HIV back from a death sentence to an acronym, taming it to a manageable illness. Wesslingh says the drugs and side effects from the ’80s and ’90s are long gone, too. Living with HIV in 2023 involves a couple of tablets a day, and enjoying a life that can be much like anyone else’s, he says. But doctors and researchers didn’t arrive here alone.

“For me, HIV was the first example of consumer and community engagement in medical research,” Wesslingh says.“ It was an amazing example of where an affected community worked with the medical research community. To go from having a disease that no one understood, to finding a cause, to finding a test, and then we started to get some treatments. You don’t do that without the people who are intimately affected being involved.”

For HIV-positive people to speak, though, it was necessary to first find their voice. Some found it quickly. Others, like Kath Leane, went through what she’s dubbed her “decade of denial”.

“My partner and I didn’t talk about it, not even at home, in case the kids overheard,” she says.

It took a stint in prison and a meeting with a women’s health worker, to give Kath her voice.

Intravenous drug use had been part of Kath’s life well before she got HIV. It certainly was afterwards, as a feature of what she concedes was “not the world’s best coping strategy”. She describes herself being a member of a largely invisible group – people who use IV drugs, but hold down jobs, study and support families, like everyone else. A normal life. Not that normality mattered when she was arrested and convicted on a drugs charge. Kath was sent to prison in the mid-1990s.

“When I was at Northfield prison, they were running a program called Straight Talk,” Kath says. “It was for low-security prisoners going out to talk to high schools. I really enjoyed it, speaking to high school kids, because I found they were interested and really listened. I guess that was because here was an adult talking about all the taboo stuff: you know what kids are like.”

Across town from the prison, a women’s healthcare worker named Pam Price was working on a new program specifically for women with HIV. Naturally, she wanted HIV-positive women to talk about their lives. It was around this time that Pam Price recalls first crossing paths with Kath Leane.

“She was still in prison when we met,” Pam says. “A few years afterwards, when Kath got out, she started with the Women with HIV project as a peer educator, so we’ve known one another for a long time.”

From the outset, Price says Kath Leane shared the story of her daughter’s birth, and the tying of her tubes. She wasn’t surprised to hear it.

“There were many women across the country who had stories that were not quite the same, but not that different [from Kath’s],” Pam Price says.

“She’s from a generation of HIV-positive women that had that type of experience. The key thing, from the medical point of view, was to protect the child: it was about child protection, it was about stopping women [with HIV] from having children, and making it safe.”

Price also believes that many pregnant women during the ’80s may not have been fully aware HIV tests were part of the routine battery of checks they were given. Some found out about the test when they found out they were HIV-positive. They were different times, indeed.

Whenever Kath Leane is asked to speak, either as a peer supporter, or an educator, she talks about everything. Nothing about her life is off the table: not the drugs, not prison, not how she was infected with HIV (she’s not sure and asks, why does it matter?), not what it was like to live when so many died, and not the joy of seeing her family grow up. She’s especially happy talking about her granddaughter Angel. Sometimes, when Kath tells the bittersweet story of the miracle that medicine brought her, the audience gets angry on her behalf.

“I’m cross my choice was taken from me,” she says. “But I want people to be kind. I haven’t got time to be angry.”

As she reflects on those darker days, there’s really only one thing that’s held on to its power to make Kath cry. It’s the reason she keeps speaking today.

“The thing I get emotional about was the sense of total isolation. I remember asking for information and being given an A4 sheet about women in Africa. As a woman, feeling that I was the only one this was happening to –  you know, the only one in Australia. I now know that was not true, but that’s how I thought then. I think that’s why I’ve gone down this path of speaking. I didn’t want another woman to go through that alone.”

Pam Price argues Kath’s willingness to put everything out there makes her special.

“Her candour is amazing. I’ve got enormous respect for her,” she says. “She’s prepared to put herself in the middle of the conversation, and that takes a lot of guts. I’ve been there many, many, many times when she’s telling her story, and most of the time people are respectful, but not always. They’ll ask things that clearly show their judgement and she just hands it back. She’s very pragmatic about that.”

There’s one thing, though, people seem to rarely ever ask Kath. That is, what happened to her partner from the late 1980s? Perhaps they just assume he died before treatments came along. But if someone should happen to ask, Kath is willing to speak about him, too.

A few weeks ago at the annual Adelaide Pride March, Kath Leane was chatting with a group of friends. Everyone was standing around Light Square, enjoying the late afternoon sun, waiting for the show to begin. Kath interrupted her conversation, grabbing the arm of a slightly built man wearing a baseball cap. “Come here Joe,” she commanded. “Get your photo taken with me!”

The result is a snapshot of two very different personalities. Kath is up on a bench, her arms outstretched; it looks a bit like a well-earned ‘V’ for victory. Joe, by contrast, has a quiet smile as he stands beside Kath, right where he’s always been. The father of their two children, Joe is Kath’s partner.

“We both survived – HIV and each other,” Kath says, laughing. There’s more laughter at the inevitable follow-up: “And which has been difficult?”

“Do I really have to answer that one?” she asks. For a moment Kath pauses, and then continues.

“Relationships are hard, but I think it’s too easy to go, ‘oh look this is too hard’, and just walk away. We’ve both always been really committed to making it work, because what do you do? Just give up and go on to someone else? And then when issues arise, you do the same thing again? So no, we decided to stick it out.”

Kath and partner Joe at this year’s Adelaide Pride March.