‘HIV is the least of my worries’: Australia observes World AIDS Day 2024 in a changed world

New HIV diagnoses have risen over the past decade in Australian populations born overseas, as well as in the number of people acquiring HIV through heterosexual sex, despite a long-term downwards trend in new diagnoses over the last decade. While overall HIV notifications in Australia have decreased by 33 per cent in the past decade, a 2024 study by the Kirby Institute found that over the same period there was a 21.5 per cent increase in HIV notifications among people from culturally and linguistically diverse (CALD) backgrounds. There has also been a slight increase in HIV notifications resulting from heterosexual sex. Program manager at the Bobby Goldsmith Foundation, Ruan Uys, said it was important to bring the HIV education of these communities up to “equilibrium” with the gay community. “When you talk about transmission, we’ve shifted our focus in education and health promotion to those communities, because they are going to be the new frontier.” For women, heterosexual men and culturally diverse communities, Mr Uys was emphatic with his concern. “It’s not an equal playing field for all of us,” he said. World AIDS Day is Sunday 1 December, observed since 1988 to raise awareness about HIV and AIDS and to honour those who have passed from the disease. Mr Uys, an HIV-positive man, said while the disease was “the least of my worries”, he said this is not the reality for everyone living with a positive diagnosis. “For me, personally, HIV is the least of my worries. I am more concerned about paying my bills and where I’m going to have dinner tomorrow night than I am with HIV,” said Mr Uys. “But that is not the reality for many of the people in my community. What it means to live with HIV doesn’t look the same for any two people. If you’re part of the gay or MSM (men who have sex with men) community, I think things have gotten easier.” Mr Uys was diagnosed with HIV in 2014, and at the time thought his life was over. “When I was younger and I was uneducated about HIV, to me it was a death sentence. I didn’t know anyone who had it, even the thought of getting it would scare the life out of you.” HIV was first identified as a pandemic in 1981, and has since resulted in over 42 million deaths. Today, about 40 million people globally are living with HIV. Mr Uys said that there were many misconceptions about people living with HIV, leading to stigma and discrimination. “There’s a perception in the wider community that people with HIV are promiscuous, we’re not careful – 90 per cent of transmission happens from people who don’t know they have it because they haven’t been tested and got treatment. If you’ve had sex without a condom once in your life, you should get tested. It only takes one time” he warned. “When I was diagnosed, all those feelings and things I was taught about HIV and people living with HIV, I focused on myself. I thought, ‘I’m dirty, I’m broken, there’s something wrong with me’.” After his diagnosis in 2014, Mr Uys started to volunteer with HIV organisations and running workshops for his community. “Seeing other positive people with partners and jobs, kicking goals and living their best life where HIV is probably their smallest concern, that was really eye opening and really helped me get back on my feet.” Previously working with the AIDS Council of NSW (ACON), Mr Uys now runs community programs with The Bobby Goldsmith Foundation – Australia’s longest-running HIV charity. Through the support of the gay community, Mr Uys said he was able to build a life surrounded by people who supported him and didn’t discriminate against his HIV-positive status. “It’s very different for women, heterosexual men or bisexual communities living with HIV, First Nations communities and culturally and linguistically diverse (CALD) communities,” Mr Uys explained, as they may not have the same level of education or experience around HIV prevention and healthcare. “So for them to disclose an HIV diagnosis could mean the loss of community, housing, the loss of a loved one. Because of that stigma and discrimination, we are now seeing in Australia that HIV is shifting from an MSM problem to a wider community problem.” ACON chief executive Michael Woodhouse is similarly concerned with expanding his organisation’s outreach efforts. “As we mark World AIDS Day 2024, we share the Australian government’s commitment to ensuring no one is left behind as we progress towards ending the HIV epidemic throughout Australia,” he said. World AIDS Day is commemorated by ACON through fundraising efforts across the state. The Red Ribbon Appeal is ACON’s largest annual fundraising appeal. “We’ve made remarkable progress toward the goal of virtually eliminating HIV transmission in NSW, particularly among gay and bisexual men living in the inner city,” said Mr Woodhouse. “There is still more work to be done to ensure all people who need it get the benefits of HIV prevention.” Beyond prevention, great strides have also been made in treatment for those living with HIV. Now, Mr Uys and many others living with HIV don’t even need to take a daily pill to manage the virus. First approved by the Therapeutic Goods Administration in 2022, long-acting injectables are now available in Australia. Administered every one to two months by a doctor or nurse, injections for HIV treatment can eliminate the need to take a daily pill. This comes as a relief to HIV-positive communities, eliminating the fear and anxiety that can come with a “viral blip” resulting from forgetting to take a pill. “I want to know that I am in control,” Mr Uys said. “It’s about knowing that I’m controlling this virus,” he said. Mr Uys is in a “sero-different” relationship, meaning that while he is HIV positive, his partner is HIV negative. “A person living with HIV who is on effective antiviral treatment and has an undetectable viral load is essentially uninfectious. They can’t pass it on,” he explained. For his work with the Bobby Goldsmith Foundation, Mr Uys said “we want to end transmission by educating communities, making PrEP available to everyone, making antiretrovirals accessible even to people who aren’t Medicare eligible – which we’ve done in Australia.” Community advocate Matt Rule has also been living with HIV for over a decade and shared his message on what needs to be done. “HIV is not over for the 30,000 people living with it in Australia. We’ve done an amazing job reducing transmission, but we still have a long way to go in reaching outside the inner city and improving the quality of life for people living with HIV.” Mr Uys is also focused on improving life for those living and ageing with HIV. “We want to make sure that people who are living with HIV have a good health related quality of life, that they’re looking after themselves and their mental health is good.” “There’s ending transmission and there’s supporting people living with HIV. You can’t have one without the other, they go hand in hand.”