In the past few decades there have been great advances for HIV treatments available in Australia, but there is still much misunderstanding of what the virus is and the discrimination towards those living with it.
HIV, the Human Immunodeficiency Virus, is a virus which attacks the immune system so that it becomes susceptible to other opportune illnesses. If left untreated, HIV in its later stages of infection can cause Acquired Immunodeficiency Syndrome (AIDS).
This means that not all people living with HIV have AIDS, and this is important to distinguish in the fight to eliminate discrimination.
“When initially diagnosed, I kept feeling and thinking that I would die, and it took some time to believe that medication would allow me to lead a normal life.” – Person living with HIV
With treatment so readily available, and so effective, people living with AIDS has become much less common in Australia, and hence there has been a significant decrease in deaths resulting from AIDS.
Another important element of treatment available now is that it can, in most cases, reduce the viral load of HIV to undetectable levels - meaning that the virus cannot be passed on through sex.
U=U
Undetectable = Untransmittable
Understanding HIV and treatment
Viral load is used to describe the amount of HIV in a person’s blood. When HIV treatment reduces a person’s viral load to undetectable levels, the virus cannot be transmitted through unprotected sex (but it’s important to note that other sexually transmitted infections still can be!).
Unfortunately, HIV never leaves the body, so ongoing treatment is required to maintain an undetectable viral load and to stop progression of the virus in the body.
In 2019 it was estimated that just over 29,000 people were living with HIV in Australia* (about 0.1% of the population), and that 97% of those people who were receiving HIV treatment had an undetectable viral load*.
“Taking medication enables me to have an improved quality of life, and lead a basically normal life.” – Person living with HIV
If someone living with HIV has a detectable viral load, the virus can be transmitted through unprotected sex without a condom, or through the sharing of used/unsterile needles (this means HIV can be transmitted through tattooing, piercings, and drug injecting equipment)**.
HIV medication, while doing an exceptional job at reducing the viral load in a person’s body to undetectable levels, can also have many unwanted side effects.
“Side effects from the tablets greatly affect me - balance loss, fatigue, weakness, bloated abdomen…” – Person living with HIV
It is important to understand that each individual living with HIV will experience different symptoms and side effects, but while these experiences may vary vastly, one fairly common experience is discrimination from others.
“I live with HIV so I feel hurt when people say I have AIDS.” – Person living with HIV
Discrimination against people living with HIV
There is still much stigma associated with HIV – whether it be amongst family and friends, in communities, and even within the health sector.
Much of this stigma results from the misunderstanding or misinformation around HIV, particularly regarding the differences between HIV and AIDS, the uniqueness and impacts of HIV symptoms and side effects for each individual, and the effectiveness of treatment.
Hence, increasing understanding amongst our community about HIV can play a big part in eliminating discrimination.
“When people believe that HIV is a death sentence, then their response to me is a negative one.” – Person living with HIV
Some people living with HIV are fortunate to have not experienced discrimination on the basis of their diagnosis, but many have – to the point where it has had a severe impact on their relationships across different aspects of their lives.
“Although I am an honest person, I feel I have to be careful not to reveal my HIV status because I worry how people around me will respond. This means I’m also conscious about what I reveal regarding my everyday activities.” – Person living with HIV
Discrimination from family can lead to family breakdown. Discrimination in the workplace can affect a person’s ability to maintain or find employment. And discrimination in couple relationships, or notably, before a relationship may even be formed, can affect one’s ability to build a relationship with another.
Furthermore, discrimination and/or misunderstanding of HIV within the Heath sector can impact on one’s ability to receive the support they need in coping with HIV symptoms and side effects.
One person living with HIV mentioned, who as a subsequence of HIV is also living with peripheral neuropathy, made an NDIS application to make adjustments to his bathroom as he was often falling and hurting himself.
Peripheral neuropathy is a condition where nerves in the body have been damaged, due to infection or disease, resulting in a wide variety of symptoms including muscle weakness, numbness and pain in the arms and legs, and lack of coordination - often resulting in falls.
This person’s NDIS application was unsuccessful for his HIV diagnosis, and he was recommended to have his eyes tested.
“I feel threatened when assessors dispute my needs,” he says. “People living with HIV should have eligibility for NDIS without having to show co-morbidities in order to obtain assistance.”
“HIV does not recognize physical limits, nor social barriers, body types or demeanour… but people do.” – Person living with HIV
It is not right or just that people living with HIV experience the discrimination that they do. And of course, discrimination in itself is never right or just.
No one deserves to feel as though they are not accepted, that they’re alone, or that they are misunderstood.
At CatholicCare, it is part of our mission to bring in those from the fringes and empower everyone to live life to the full.
How can we support people living with HIV?
Our Catholic HIV/AIDS Ministry helps to reduce social isolation for people living with HIV/AIDS, and enables them to access a support network which, for some, is unavailable elsewhere.
“Our Monday Lunch Zoom Meetings and ‘virtual retreats’ (which were Weekend Away Retreats pre-COVID-19) provide a safe space for people living with HIV/AIDS – a place of non-judgement and support from peers and community,” says Marg Hayes, Coordinator Catholic HIV/AIDS Ministry at CatholicCare.
“This Ministry gives the most support because someone is available to talk to whenever necessary, whether coming to Monday lunch, a phone call or a Zoom meeting,” says one person living with HIV. “We also have a Facebook group together. What helps at lunch is that it is a welcoming atmosphere where we can ask embarrassing questions and feel safe. The Zoom retreats always make me feel happy and lift my spirits.”
“It’s a safe, non-judgemental environment where we can freely disclose our status.” – Person living with HIV
In addition to providing direct support to people living with HIV, we also have the opportunity to advocate for them and fight for the elimination of discrimination.
Undetectable Equals Untransmittable (U=U) is a worldwide campaign spreading the word that an undetectable viral load means the virus is untransmittable through sexual means.
With education being such a key method of reducing discrimination (amongst any topic!) the message from this campaign is one to remember – and one we need to keep talking about.
“Two other things everyone should take away from this is that HIV still continues to impact people, but it is rarely a death sentence here in Australia,” says Marg.
“The other is that it’s important to build a supportive community where all people feel cared for, loved and respected.”
Liz Gellel, Communications Coordinator | Marg Hayes, Coordinator Catholic HIV/AIDS Ministry
Sources:
Read more: