The main problem with HIV today is stigma – and it is almost entirely based on outdated information and fear, says Mark Fisher of HIV+ support organisation Body Positive ahead of the World AIDS Day Festival which opens in Auckland tomorrow.

A person living with HIV on effective treatment cannot pass it on.

Yes, it’s that simple. This was first identified in the early 2000’s and formally announced in a scientific statement (the Swiss Statement) in 2008 that explicitly said that a person on effective treatment cannot transmit HIV through sexual contact. This was very controversial for the time and resulted in a number of large studies to validate the claim. Fast forward to 2016 where this is presented again, now validated with the results from the studies and over 126,000 condomless sex acts, to be met with scepticism once more. In 2018 the National Institute of Health and the World Health Organisation along with an array of supporters fully endorsed the statement. The Center for Disease Control signed on in July 2019 and in August 2019 advised their health departments to follow this guideline.

Eleven years on and the 2008 Swiss Statement is now official: “A person living with HIV on effective treatment cannot pass it on.”

So, if you can’t get HIV from having sex with someone that’s on effective treatment, why are we still seeing transmissions? The rates of HIV transmission in New Zealand had been historically low but increased from 2011 to the highest number of new diagnoses ever recorded in 2016. They’ve dropped over the past two years but we’re still seeing recent infections. The needle exchange program has been hugely successful and there are seldom any HIV diagnoses from shared needles. And the last child to be born with HIV in New Zealand was in 2007. Sex is the main way HIV is transferred and effective treatment eliminates any risk of transmission. So what’s going on?

A study from the US in 2016 found that 80% of transmissions came from people that either weren’t aware that they had HIV or from people that had disengaged from health care. This makes sense when you think about it. The first thing that happens when someone is diagnosed is that their behaviour changes. We don’t want to put people that we care about at risk so we do everything we can to minimise this. This ranges from not having sex (which is fairly common initially when coming to terms with the diagnosis) to using condoms or doing other sexy things besides penetration. Once diagnosed and engaged in effective treatment they cannot pass on HIV but it can take much longer for the behaviour to change back – even with regular partners due to the fear of transmission.

One of the main global strategies from UNAIDS is to engage people in testing to diagnose HIV as quickly as possible. This means easily accessible and affordable testing with the goal that all people living with HIV know their status. Some people choose not to get tested based on a lack of perceived risk, due to a sense of stigma around testing for HIV, or sometimes, for fear of getting a positive result. Some people aren’t offered testing due to perceived risk – even when they’re sexually active. A study from 2011 in Auckland identified one in five gay or bi guys weren’t aware they were living with HIV. In New Zealand, we have a lot of options to get tested for HIV ranging from your local doctor, sexual health clinic, a 60-second rapid test at an HIV community organization, or even a mail order saliva test.

So testing regularly is important if you’re sexually active with different partners. At Body Positive we also provide couples testing where a couple can get tested together. This helps with building trust and confidence in a new relationship and can also be extremely valuable if one (or both) partners test positive as there is an opportunity to talk through the result. This is a common practice in Europe as couples get a sexual health checkup when making a sexual commitment to each other. We suggest testing as regularly as indicated by your sexual practices ranging from annually to every three months if you have a number of partners.

For your own health, it’s always best to know and sooner is better. The current guidelines recommend that you start treatment immediately to shut the virus down so that it can’t impact your health (HIV treatment is available to everyone in NZ irrespective of residency). If you’re diagnosed with HIV today, medications work extremely well and you’ll have a standard life expectancy with limited health implications. But you do have to take medications forever as there is currently no cure. This is usually one or two pills per day with limited side effects but it’s still a burden.

The main problem with HIV today is stigma. A lot of that stigma is based on outdated information and fear – that HIV can’t be treated. That HIV can be passed on through sharing a glass, kissing or holding hands. A survey from 2018 showed that 42% of people were uncomfortable eating food prepared by people living with HIV for fear of transmission. Hopefully you can see how impossible this would be as the virus needs to enter your bloodstream to pass on the infection. HIV is a very fragile virus and doesn’t survive outside the body such that there is no record of environmental transfer. Even oral sex is not a concern for HIV as saliva acts as a natural barrier but it’s a risk for other infections such as Syphilis which can be passed through skin contact.

Most regulations and perceptions are perpetuated from the dark times when HIV was a death sentence and we didn’t understand it. The 2018 survey showed that 88% of people were uncomfortable having a sexual relationship with someone living with HIV. While I’ve talked a lot about using treatment to prevent transmission, we’ve always had condoms and other tools at our disposal to minimise any risk. Taking responsibility for our sexual health and choosing the tools and activities that we’re comfortable with gives us control and the ability to have happy and healthy sexual relationships.

Society has created a culture of shame around HIV and this is the component that causes the most damage. No other virus carries this level of stigma which is all based on fear of transmission where no risk exists. When you are diagnosed with HIV you don’t make an announcement on Facebook – you keep it hidden and perhaps tell your family, maybe your friends. More than likely it’ll remain a secret between you and your specialist. Potentially your GP doesn’t even know. Some people will collect their HIV medications from one pharmacy and any other medications from their local pharmacy to minimise exposure.

Society reinforces this fear. Any mention of HIV triggers people into panic and the person living with HIV becomes the victim. We’ve had people rejected from nursing homes due to their status, have their laundry washed separately, or have masseuses that insist on wearing gloves before providing a massage. These actions damage your sense of self-worth and tear people down. So while we can manage the virus effectively we continue to provide counselling and support for people to manage the emotional and mental stress.

We need to move beyond the fear and realize that HIV is simply a virus which does not discriminate and is one of the few conditions that elicits stigma and fear. If you’re living with HIV, it doesn’t define you. There’s no shame in having acquired HIV – everyone has sex and anyone could acquire HIV. HIV can be readily managed and you can live a healthy, long life. Everyone should get tested regularly to know their status and take control if they have acquired HIV.