Key Takeaways
- Modern treatment has transformed the outlook for people living with HIV: Antiretroviral therapy can reduce the viral load to undetectable levels, meaning the virus cannot be transmitted to others - a principle known as U=U (Undetectable equals Untransmittable). With treatment, life expectancy is near-normal.
- Stigma remains one of the biggest barriers to care and open conversation: Outdated beliefs about HIV in Australia continue to cause people to delay seeking treatment or feel unable to disclose their status. Replacing fear with accurate, current information is essential for creating a supportive care environment.
- Support workers can provide safe, compassionate care with standard hygiene precautions: Universal infection control measures are sufficient when supporting someone with HIV. Carers are encouraged to focus on humanising the experience, being mindful of sensitivity around disclosure, and treating the whole person, not just the diagnosis.
Sometimes our way of thinking needs to be modernised. Our perception of things can remain in the past, with outdated notions of the truth, which contributes to taboo topics and stigmatisation.
HIV and HIV-related topics, unfortunately, are still stigmatised in Australia. This makes it difficult for those with HIV to have free conversations, removed from judgement, with those they consider close to them, even prospective sexual, platonic or romantic partners.
It’s this archaic understanding of the virus which can adversely affect the well-being and health of those living with HIV. So much so, that they could feel shy of accessing treatment – treatment which can prevent the transmission of the virus – or receiving care.
It’s true that when the virus was first transmitted that it had a devastating effect on many, but treatment has come leaps and bounds since then. Really, the virus’s ability to destroy families, lives and relationships, has been reduced to a mere conversation of: “Hey, I have HIV, but that doesn’t mean you will have it or that I can transfer it to you.” But people fail to realise this. The cause? A lack of education around HIV.
To best address any of our questions, Kimberley Care Group connected with The National Association of People With HIV Australia, or NAPWHA for short. NAPWHA1 was formed over 30 years ago to bring together all the state-based organisations of people with HIV, lobbying for the rights of positive people on a national level. They also support networks of HIV positive communities such as the Positive Aboriginal and Torres Strait Islander Network and the Positive Asian Network Australia.
So, let’s get enlightened, shall we?
What is HIV?
HIV (human immunodeficiency virus) is a virus that affects your body’s immune system. It is transmitted through certain bodily fluids (not all bodily fluids, which is a common misconception) such as:
- Semen
- Blood
- Rectal fluids
- Breast milk
- Vaginal fluids
The most common ways for the virus to pass to another person is through intercourse – anal or vaginal intercourse – as well as sharing drug equipment like needles. Merely touching someone’s faeces, urine, sweat or even tears cannot contract the virus. HIV cannot pass through healthy skin that has no sores or open cuts. It also cannot pass through water or air, which is an entirely incorrect notion – a notion which highlights the lack of education, still, around the virus and its threat.
What’s the difference between HIV and AIDS?
HIV is a blood-borne virus (BBV) and sexually transmitted infection (STI) which affects the immune system. If untreated, it can destroy CD4 cells which are cells that fight off disease within the body.
If HIV is left untreated, you can develop severe immune deficiency within 10-years which means the body can no longer fight infections. This late stage is called acquired immunodeficiency syndrome, or AIDS.
Adrian Ogier, Director of Campaigns and Communications at NAPWHA, tells Kimberley Care Group, “AIDS is extremely rare in Australia with the highly effective HIV treatments now available.”
“There is currently no cure for HIV, but people living with HIV who take effective antiretroviral treatment will not develop AIDS and have a normal life expectancy. This is because these medicines control the amount of virus in their blood (‘viral load’) and protect the immune system.”
“Effective HIV treatment can reduce a person’s viral load to such low levels (undetectable) that they cannot transmit HIV to sexual partners (untransmittable). This is known as Undetectable equals Untransmittable (U=U).”
Treatment for HIV today is two-fold in its power: it keeps those living with HIV healthy and it stops the transmission of the virus. But, not many people are aware of this and after the biomedical breakthrough, NAPWHA wants you to be informed, and spread awareness of this fact.
Has the perception of HIV changed over time?
“There is still a stigma which is a hangover from the 1980s when we didn’t know much about it and people were afraid.”
NAPWHA believes this is due to the fact that: “HIV is not very newsworthy these days and many people don’t think that it is an issue in Australia. People with HIV on treatment now live near normal lifespans and do the same things as everyone else.”
From research, the literature seems to be geared towards older Australians meaning sometimes it can feel a bit out of touch. Ogier confirms that this is because, “Over half the 30,000 people with HIV in Australia are aged over 50. Many lived through the early days without treatment and now have multiple health issues to contend with as they age.”
As a care-based organisation, does supporting someone with HIV incur extra risks? For example, when engaging with personal care.
Some irrational fears, exposed due to lack of education, might cause care staff to be concerned with caring for an individual with HIV. However, universal safety precautions such as optimum hygiene and gloves are “perfectly adequate for caring for people with HIV. There is no need to take extra precautions,” says NAPWHA.
Furthermore, “there have been very few cases of HIV being transmitted in occupational settings and none in Australia in over twenty years.” A care worker, then, shouldn’t be fearful of looking after someone with HIV.
“There is absolutely no need to be nervous when caring for a person with HIV. They require the same universal safety precautions as anyone else. In fact, it is important that you show compassion and support for that person with your attitude and actions.”
It’s about putting carers’ minds at ease “whilst humanising the experience of living with HIV”, says Ogier. To do so, we need the correct information out there, rather than outdated beliefs of the virus and its impact on us as a civilisation.
How can we reframe our thinking about HIV?
“Stigma is an intricate occurrence within our social discourse and understanding. But that doesn’t mean we can’t actively encourage societal and personal viewpoints to change and evolve.
Considering it is completely low risk to pass it on now, and it is able to be managed effectively with treatment, the stigma surrounding HIV and the idea that it remains a taboo topic should be dispelled.
It doesn’t help that much of the media representation of HIV is historical, for when the virus first came to be known. For example, while the show It’s A Sin (2021) was a masterful production, its identified themes of otherness, urban lifestyles, victim-blaming and heterosexism seem to translate to the current time. A way to change this is to have more representation in the media about HIV today, rather than HIV in the 80s and 90s.
With correct and up-to-date information as well as readily-available resources that prove HIV treatment and research are so distinct from how HIV used to be supported, we need to:
- Question our thoughts, and check that they are based on correct information
- Notice our thoughts and see whether they might be littered with prejudice
- Replace our unhelpful thoughts with thoughts that benefit others, rather than make them feel alone or like an outsider
As Ogier explains, “Many people with HIV are also living with other conditions that cause them stress. We should be mindful that they may be particularly sensitive to any sign of discomfort you may feel being around them.”
To remove the stigma for good, we need to: “Learn the facts and pass them on to your colleagues, friends and family.” Remembering that, “HIV is not easily transmitted, particularly today when most people are on treatment.”
If you, or someone you know, would like more information on HIV, please review our references at the bottom of this article. Many of these resources were shared by the team at NAPWHA.
References:
https://www.cdc.gov/hiv/basics/whatishiv.html
https://www.hiv.gov/hiv-basics/overview/about-hiv-and-aids/how-is-hiv-transmitted/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6446936/
Goffman E (1963). Stigma; notes on the management of spoiled identity. New York: Simon & Schuster
https://www.hiv.gov/hiv-basics/overview/history/hiv-and-aids-timeline
https://myhealth.alberta.ca/Health/aftercareinformation/pages/conditions.aspx?hwid=abk7438
https://healthequitymatters.org.au/wp-content/uploads/2022/11/hiv-in-australia-2023.pdf
https://www.health.nsw.gov.au/Infectious/factsheets/Pages/HIV-infection.aspx
https://livingpositivevictoria.org.au/wp-content/uploads/2016/09/PositiveCaringHandbook.pdf