HIV

HIV stands for Human Immunodeficiency Virus. If left untreated, HIV weakens the immune system over time - our main defence against disease - leaving a person who has HIV open to other life-threatening illnesses, collectively known as AIDS.

HIV is transmitted when infected body fluids (blood, semen, vaginal/frontal fluids, breast milk or anal mucus) pass from a person with HIV into the bloodstream of an uninfected person.

HIV can be passed on in a number of ways, including unprotected anal or vaginal/frontal sex, and sharing of drug injecting equipment. HIV cannot be transmitted through contact like kissing, shaking hands,  sharing utensils and glasses, or through toilet seats.

This page was developed in collaboration with the Albion Centre’s T150. We also worked with the ACON teams responsible for Ending HIV and peer education programs.

Are HIV and AIDS the same thing?

No. AIDS (Acquired Immunodeficiency Syndrome) is a collection of illnesses that it is diagnosed when someone with HIV has a severely damaged immune system. People who take daily HIV treatment do not develop AIDS and cannot pass HIV on.

Safer sex practices like using barriers and testing regularly can be great ways to prevent HIV by reducing the transmission of fluids and knowing your status. There are several other ways of preventing the transmission of HIV that trans people should know about.

PrEP

PrEP stands for ‘Pre-Exposure Prophylaxis,’ and involves HIV negative people taking antiretroviral drugs to protect them and prevent HIV infection.

PrEP is recommended for anyone who has a partner who is HIV positive with a detectable viral load, or for anyone having sex with people whose HIV status they are unsure of.

Taking PrEP every day is a great option if you want to be protected from HIV without having to anticipate when your next sexual encounter may be. Sex is sometimes spontaneous! So if you take PrEP every day, you are always protected. Daily PrEP is also great if you know you are going to be having a lot of sex, or just have a generally busy sex life.

Some people take PrEP ‘on-demand’, or only just before and after a sexual encounter, though there is not yet enough research to show that this is safe for trans or gender diverse people. We still don’t know a lot about the way that on-demand PrEP interacts with hormonal therapies, and recommend taking PrEP every day or using other prevention methods.

If you have a Medicare card, PrEP can be accessed through the PBS, and you can also purchase a generic version of the drug online. Find out more here.

PEP

PEP stands for ‘Post-Exposure Prophylaxis,’ and involves a 4-week course of HIV treatment after a recent exposure to HIV. PEP works by stopping the virus from replicating so the cells originally infected with HIV die naturally within a short period of time, reducing the likelihood that HIV will establish itself in the body.

PEP is for anyone who thinks they may have been exposed to HIV. If you believe you’ve been exposed to HIV, you should start PEP as soon as possible, ideally within a few hours after the risk event. If it is not started within 72 hours (3 days) of exposure to HIV it is likely that treatment will not work.

You can get PEP at your local sexual health clinic, or hospital accident and emergency department. Contact the PEP NSW Hotline on 1800 PEP NOW (1800 737 669).

UVL or U=U

UVL stands for an ‘Undetectable Viral Load’. When a HIV positive person is taking antiretroviral treatment, the amount of HIV in their body (known as their viral load) can be reduced to a level that is ‘undetectable’ by a blood test.

Research in Australia and other countries has proven that U=U, or Undetectable = Untransmittable. This means if someone has an undetectable viral load, they are also not able to transmit HIV to another person.

If a person is undetectable it does not mean they’re cured or free of HIV. It simply means that the treatment has stopped the virus from replicating in their body. This means it is safer to have unprotected sex with someone with a UVL than with someone who tells you they’re negative.

Using new needles and injecting equipment

There are a number of viral and bacterial infections that are transferred through blood-to-blood contact, which means when the blood of an infected person enters the bloodstream of an uninfected person, including when sharing needles and injecting equipment.

Using new needles every time and not sharing with anybody else can prevent transmission of HIV, Syphillis, Hep B and Hep C. The NSW Needle and Syringe Program is a public health program which aims to prevent the transmission of blood borne viruses such as HIV and Hepatitis C amongst people who inject drugs (PWID), and provide free needles and injecting equipment for people who inject drugs to do so safely.

The NSP has outlets all over the state, and an interactive map of locations is available here.

If you’ve received news that you’ve tested positive for HIV, it’s normal if you feel shocked, confused or upset. However, we want to assure you if you’ve been diagnosed with HIV, you’re not alone.

It is important to take a bit of time to get your head around the news. Once you’ve done that, taking a few key next steps can help you feel like you are taking control of your health.

There are excellent healthcare and support services available for people who test HIV positive in Australia. That’s largely due to the excellent healthcare and access to treatment we are privileged with. Most people with HIV are living full lives and enjoying good health – and you can too.

Here are some strategies to help you adjust and plan for the future.

Connect with a doctor you trust

Whether it’s about treatments, nutrition or lifestyle changes you want to make, or resources you need for tackling any anxiety or stress you may be feeling – bring all your questions to your doctor or medical professional.

They will provide you with information about HIV and ask you for a detailed medical history. You’ll also have a range of blood tests done including viral load tests which determine how quickly HIV is reproducing in your system and if your immune system is being compromised.

If you don’t feel comfortable speaking to your current or regular doctor, there’s no reason why you can’t switch to a different healthcare provider. After all, it’s your health and you should feel safe and affirmed by who you open up to. You can look for gender affirming doctors on our list here, or visit a sexual health clinic across NSW.

Start treatment for HIV straight away

You may have heard that HIV treatments can be a hassle to take and have bad side effects. In the past, that was the experience for many people but it’s much less the case these days. The variety of new treatments that are available today are far more effective against HIV, far better tolerated and pose minimal side effects.

People starting modern treatment may take 1-2 tablets once or twice a day, some only needing one pill once a day. Discuss your options with your doctor.

HIV treatments don’t affect how gender affirming hormones work.

Why is early treatment important?

Since 2015, Australia’s policy has allowed people to seek treatment as soon as they are diagnosed, regardless of their CD4 count. Why? Well, we know that treatment reduces your viral load – usually to undetectable levels – which means you are much less likely to pass on HIV to your partner/s and it will help stop the spread of HIV in our community.

We also know that untreated HIV has detrimental effects on the body right from the start. Early treatment may prevent this damage, and reduce your risk of developing a number of other health conditions including cancer, cardiovascular (heart, blood vessel) disease and neurological (nerve, brain) complications.

Further, starting treatment early can dramatically increase your lifespan and quality of life. In fact, it’s believed that people who start treatment earlier will probably enjoy a typical life expectancy.

Inform your partners and practice safe sex

You can take steps to ensure HIV isn’t passed on to your sexual partners by practising safe sex. It is also important to let your previous sexual partners know that they may have been at risk of infection prior to your diagnosis. Your doctor or healthcare provider can provide guidance.

Open up, you have support

It’s understandable that the idea of opening up to someone – apart from a medical professional – about your HIV diagnosis seems hard. However, if you have someone you can trust, they may be able to offer you guidance and support.

ACON can offer priority support and counselling services for trans people who are dealing with being diagnosed with HIV.

Disclosure

There are very few situations in which you are legally required to disclose your HIV status. These may include:

• If you are having unprotected sex without reasonable precautions (ie. are on treatment) and are aware of your positive HIV status

• Health care workers who perform Exposure Prone Procedures

• When applying for the Defence Force

• When taking out insurance related to your health

• When applying for a visa to a country that asks about your HIV status

The HIV and AIDS Legal Centre (HALC) have put together a guide on Disclosing Your HIV Status, which is available here. This contains further information about the above situations, and a range of contact information for related services.

HIV stigma manifests itself in many ways, and it mainly comes from fear combined with a lack of understanding, knowledge or empathy. Stigma doesn’t just affect people living with HIV, it can also be directed to and impact their partners, friends, families and the broader community.

Stigma still occurs for many reasons, some including:

• The assumption that HIV is always associated with death

• Judgments around personal irresponsibility and sexual behaviour

• Incorrect information about how HIV is transmitted

HIV Stigma Today

While stigma was at its peak at the beginning of the HIV epidemic, for many positive people stigma and discrimination still exists. It can occur anywhere and everywhere – on apps and social media, on a tabloid or news headline, in bars and pubs, at dinner parties and during sexual encounters.

Some positive people say that stigma can sometimes make them feel shame, embarrassment or lack of self-worth or confidence and that can lead to issues around mental health and affect general wellbeing. Further, many may feel apprehension around disclosing their status as it might incite partner rejection, limit career opportunities or evoke an inaccurate image of who they are.

How can stigma affect HIV prevention?

We know that by continuing to encourage frequent testing and safe sex practices, we can end HIV. However, stigma can be detrimental to those efforts. Fear of negative social consequences of a positive HIV test can discourage people from getting tested and knowing their status.

For people living with HIV who experience stigma because of their status, they are more likely to miss HIV check-ups and lapse in adherence to their meds. That can lead to an increase in their viral load and subsequently increase the risk of onward transmission.

What can I do?

Think before you speak: You may not know it, but using certain phrases and language can lead to stigmatising people living with HIV. Questions like “R U clean?” fuel HIV stigma because of the negative connotations associated with HIV. Before you ask someone about their testing history, always consider the words you choose.

Arm yourself with knowledge: It’s important to keep informed about what the HIV landscape looks like today by understanding how HIV is transmitted, the prevention methods available and the work being done to end HIV.