Living with HIV
Speaking to HIV positive people at the 20th International Aids Conference in Melbourne.
This week I’ve been at the 20th International Aids Conference in Melbourne and it’s been quite a weird experience. There’s a giant condom tent, Bill Clinton, an “Ask a Whore a Question” booth and Thai lady-boys practicing their dance moves. Parties of local school kids wander around looking bemused. Melbournians can’t avoid it: “AIDS 2014” is spelled out in giant red letters on the city’s main bridge.
There are around 15,000 delegates here, mainly scientists, researchers, activists and people with HIV. Some did not make it. Alongside 292 others, six delegates died on flight MH17 over Ukraine last Thursday. The grim irony of what appears to be a stupid military error is that those six people, all major figures in the fight against Aids, were blasted out of the sky in a region presiding over the world’s fastest growing HIV epidemic.
At the conference, I hear that, despite the best efforts of some of the world’s top scientists, the hunt for a cure or a vaccine for Aids remains elusive. On the bright side, Bill Clinton tells us “the end of Aids is on the horizon”. Anti-retroviral drugs have been a huge success in suppressing HIV, preventing Aids and making people’s lives easier, but there are still some shocking statistics. There are 35 million people living with the HIV virus. Last year 1.5 million people died of Aids. Since the beginning of the pandemic in 1981, 78 million people have contracted HIV and 39 million people have died of Aids.
Walking around the conference, I decided to speak to some of the people with HIV who have come here to find out about how their lives had led them to Melbourne.
First up I meet Lalchanzuali, a 26 year old woman from the city of Aizawl, in Mizoram, a state in north-east India. Her story doesn’t reflect well on the men of Aizawl. When she was 18 she got married and became pregnant. After a routine health check, she was told she had the HIV virus. When she told her husband he chucked her out of the house, seven months pregnant, with just her clothes. His reaction was even worse than it first sounds – she later found out it was him who had given her HIV.
“I didn’t know anything about HIV," she said. Most of my neighbours said you could get it from sitting next to someone. I thought it was something a drug user or a sex worker got. They told me I could pass it on to my baby. I was stressed and depressed. I tried to hang myself in my parent’s bathroom. What stopped me was the baby inside me.”
Meanwhile one of her best friends decided that because she had HIV she was banned from seeing her daughter and stopped coming to visit. She confided in the local church leader who helped her get treatment. “I’ve learned that you have to fight for your rights when you have HIV. If you don’t talk about it, no-one can help you.”
Nick Rhoades, 40, from Plainfield in Iowa, USA has come to Melbourne to talk about his bizarre case. In 2008 Nick, a food salesman who had been living with HIV for 10 years, met a man through a website, chatted, got stoned and had sex. He used a condom and HIV was not passed on. But when the man discovered Nick was HIV positive he reported him to the police. He was sentenced to 25 years in jail and permanently placed on the sex offenders register.
“I am not claiming to be any kind of angel in this situation, I was intoxicated and I took a bad decision. But because I wore a condom and my viral load [the amount of HIV in his blood], was undetectable, it would have been almost impossible to pass on my infection.”
After seven months in jail, a letter writing campaign to the court judge ended with Nick’s sentence being cut to five years probation, although as a convicted sex offender he is still banned from having any contact with his nieces or nephews. In June, due to intense pressure from activists and the media, the law in Iowa was changed to restrict heavier punishment to those intending to and who actually transmit HIV.
Lloyd James, 66, is looking after the Positive Lounge, a chill out room on the second floor where people with HIV can get massages and relax away from journalists like me. Nevertheless, I make a nuisance of myself and ask Lloyd how long he’s had HIV. It turns out he was the first person diagnosed with HIV in Australia in 1981. He’s been living with it for 33 years, which is pretty incredible.
“I caught it off my boyfriend, a rock ‘n’ roll journalist who had Aids but died in a car crash in 1980. At that time they didn’t know what Aids was. They diagnosed me with a “gay-related immune deficiency disease”. I was in the closet for ten years. But when word got out it had a profound effect on my career as a make up artist for the theatre and advertising industry. My agent took me off his books because make up is seen as “intimate contact.” He moved to Melbourne, studied oriental philosophy and then took up theatre design.
So what’s it been like since? “It’s had its ups and downs. The upside is that I’m still alive. I jumped the fence in 1986 and raised a family. The downside is that I’ve been very unwell, I’ve been down to 31 kilos with meningitis and very nearly died.” Are things better for gay people and those with HIV now? “Well in the early days people used to bring their own cups when they visited my house, and that doesn’t happen now. Political correctness has made the expression of prejudice go underground. Banning it does not make it vanish.”
How has the MH17 tragedy affected people at the conference? “My wife, who is here as an HIV worker, knew all of those that died. It’s a tragedy. But a lot of people here are using it as spur to achievement. It makes this conference even more meaningful. I hope it puts HIV back on the agenda. We need to remind young people not to be complacent.” A fair point to make, as HIV is on a 20 year high in Australia, with one in seven people living with the virus unaware that they have it.
Twelve years ago, Svetlana, 33, from a rural village in Kazan, central Russia, met and fell in love with a man while on a sporting holiday in Sochi. After dating for four months, he vanished. It was only during a routine health check a few months layer that a nurse told her she was HIV positive. “I could not believe this was happening to me. I thought they must be wrong,” she tells me. So she got tested at six different clinics, all confirmed her HIV status.
Now Svetlana runs a charity that helps children with HIV. She has two children of her own and adopted two more after successfully battling a ban on HIV positive parents adopting children. One of her children was banned from the local nursery because of Svetlana’s HIV status. Despite this, she surprises me by saying her life has improved since getting HIV. “Before my only ambition was to be a hairdresser married with kids, I had no big plans in life.”
Adit, 29, a Radiohead fan from Bandung in Indonesia is one of the few people I have met at this conference infected with HIV through drug injecting. He started injecting heroin in the back streets of Bandung when he was 13.
“If you didn’t use heroin you weren’t cool,” he tells me. Clean needles were highly sought in the city because very few chemists gave them out. Even those that did had undercover police looking for an easy collar. “There was a group of five of us who gathered money together to buy the drugs and whoever managed to find a needle got the first go, then the rest of us had a go. Sometimes I use to pick old needles off the street and sharpen them,” he says.
After his third rehab, by the age of 17, he was off heroin. He was diagnosed with hepatitis C and then moved to Auckland, New Zealand to study. When he tested positive for HIV a year later the family he lived with threw him out and he moved into a hostel, where he hid, depressed and unable to afford his HIV medication, for five months. His lifeline was an Auckland project called Body Positive, which offered him access to free medicine and counselling.
He is now back in Bandung as an English teacher and HIV activist, with a wife and child and has learned to balance his HIV with exercise, healthy food and no alcohol. “Living with HIV is not much different than living without it. I have two jobs, a family and I travel around the globe. It’s just annoying having to take the pills twice a day, every day for 11 years.”
Yahir, 28, a programme director for an HIV organisation from Mexico City is ok with telling me he has HIV even though he hasn’t told his mum and dad. “The reason I have not told them yet? It’s a sentimental thing. I’m sure my mother suspects and I’m near to telling her. My father felt he had failed when I told him I was gay.”
He applied for a job in Mexico City with VW, but a compulsory drug test revealed he had cannabis in his blood, so he was rejected at the final hurdle. He hadn’t smoked in several months and couldn’t understand it until a doctor told him that his anti-HIV medication, Efabirenz, may have triggered the false positive for cannabis. But he knew that if he told them this he wouldn’t get the job either.
PORTRAITS BY DANIEL CAMPBELL