Modern HIV medication keeps New Zealanders alive and untransmittable. Nowadays, the stigma is harder to live with than the virus itself. Re: spoke with three HIV+ people at the Big Gay Out in Auckland about their experiences with stigma and what they think should be done to stop it.  

It’s estimated that 3500 New Zealanders are living with HIV. Although a lot has changed since the AIDS epidemic in the 1980s, the three bold letters still trigger panic among many of us. But in 2020, so much has changed. We need to educate ourselves. We owe it to these 3500 people.

So, some education: the virus is only passed through three types of body fluids - blood, genital fluids and breast milk. And for the infection to spread, it needs to enter the bloodstream via either a mucous membrane (found in the vagina, penis, anus and mouth), an open wound or injection. 

It can’t be passed by saliva, sneezing, sweat, tears or skin contact. The virus also can’t be transmitted through air, water, insects, pets or sharing toilets, food or drink. So you could go swimming, make out and share a sandwich with someone who is HIV positive and never be exposed to the virus.

The advancement of HIV medication is astounding, but the stigma and education around the virus has a lot of catching up to do, says Mark Fisher. Nowadays, the stigma is harder to live with than the virus itself.

Mark Fisher

Mark is the executive director of Body Positive, a national organisation dedicated to raising awareness, combating stigma and supporting those who live with HIV. He's HIV-negative himself, but the organisation provides a much-needed community to break down the isolation and discrimination many HIV+ people experience in Aotearoa.

HIV can affect anyone, but in Aotearoa gay and bisexual men are most at risk. Although HIV can’t be cured, modern medication has made it possible for people to live long and healthy lives with very few side effects. Effective treatment can even stop the transmission of HIV completely, with medication that works to suppress the viral load (aka the amount of HIV in the blood). 

When a viral load is so low it is undetectable in blood tests, it’s impossible for a person to transmit HIV sexually, even when they don’t wear a condom. 

In most cases, transmission happens during sexual intercourse, which means using a condom or taking Pre-exposure prophylaxis (PrEP) can prevent it. PrEP is a little blue pill that HIV negative people can take daily to lower their risk of contracting HIV. If taken effectively, PrEP can lower the risk of contracting HIV by 99 percent. 

In New Zealand, PrEP is funded for those who meet certain criteria. (The New Zealand AIDS Foundation has a handy tool to help work out if that’s you).

Mark says the first time he went to the Big Gay Out with Body Positive five years ago there was barely any awareness of HIV at all. With the festival being the “gayest day of the year”, this seemed like a wasted opportunity - especially with how much misinformation there is around HIV in this country. And how the event is literally brought to us by Ending HIV.

A survey in 2018 showed that 42 percent of New Zealanders weren't comfortable eating food prepared by somebody living with HIV due to fear of transmission. 

“The 2018 survey was interesting because it showed that people understood how HIV was transmitted,” Mark says. “But when it came to translating that into everyday things, like having a flatmate who's living with HIV, eating food prepared by someone with HIV, or letting your kids play with somebody who's living with HIV, people just didn't get it,” he says. (FYI - you can’t get HIV by eating food prepared by someone who’s positive).

To combat this ignorance, Body Positive set up Cafe+, an eatery at the Big Gay Out where all of the food is prepared by HIV+ staff. Another successful campaign Mark helped organise was creating a sperm bank where the donors were exclusively HIV+. 

“That got a lot of attention. People asked us, ‘Why would you go here to make a child, why not somewhere else? Why would you risk getting HIV?’ It really challenged people.”  

“But if a donor was on effective medication to suppress the virus so that it’s undetectable, meaning that it doesn’t show up in lab tests, then there is no HIV in the sperm.”

At the 21st Big Gay Out on Sunday, HIV+ people from all walks of life meet at Lounge+, another Body Positive initiative. The lounge was a safe space for people living with HIV and friends and family to hang out and share stories.

Jane Bruning

Jane Bruning has been HIV+ for 32 years. She was diagnosed in the late 80s, a time where HIV and AIDS were seen as a death sentence - because for many, it was. The stigma was so extreme, Jane kept her positive status a secret for 17 years. She tells me that despite the huge strides in treatment and prevention, the stigma hasn’t shifted. She knows this because she works for Positive Women, a support network for women and families living with HIV. The sad thing is, most of the stigma she hears about comes from the health sector itself. 

Re: Hello Jane. Have you experienced any stigma after being open about your status?

Jane: There have been a few incidents. One time I had a tooth pulled out and there was a student with the dentist. The student asked me “Do you want to keep your tooth?”. I was just about to say “no” when the dentist came rushing over with a jar and said, “No, no, put it in here. Put it in here. It's contagious!” And then stuck a lid on it and screwed it.

(Teeth are not contagious because it is impossible for HIV to be transmitted through saliva.)

How does that make you feel?

It makes you feel like there's something wrong with you. 

How does it feel to keep your status a secret for so long? 

When you sit with something like that, the secret kind of festers and it almost develops into an internalized stigma, where you take it on yourself, and you feel yourself not worthy. 

I'm out about my status and I'm comfortable with it now. But I think that's because I'm older and my children are growing up. Whereas a lot of other younger people are still living their lives and afraid that their children, their husband or people they date will treat them differently. So they're afraid. I don't think everybody has to be out but I don't think people should be afraid.

If you could guarantee all New Zealanders knew one thing about HIV, what would it be?

Most people that are living with HIV are on medications and if they're on effective medication, their viral levels are undetectable, meaning you cannot pass on HIV, even if you have unprotected sex. I think just by knowing that some of the stigma can stop because they're not so afraid of contracting it. I think that's a really important message.

What else can we do to reduce stigma around HIV in Aotearoa?

The main thing is to educate the community. We need to have education around HIV in the schools starting from high school, or even younger. We've never had much education in the school system about HIV and so people still think of HIV as it was in the 80s, and that stigma has perpetuated. 

Tim Bennett

Tim Bennett was diagnosed with HIV in March 2017. He tells us he’s been open about his positive status “since day one”. A big reason why is he was already clued-up about what HIV was and how to treat it, so he knew it wasn’t something to fear. His openness and confidence about his status have led him to work with other HIV+ people in the Waikato, where he grew up. As a social plus coordinator for Body Positive, he is involved in national testing campaigns and talking to people about what “undetectable” means. 

“I fully believe that there is change that needs to happen. And if I want to see that change, why don't I help make it happen? If I don't fight this fight, I can't expect others to fight it for me. So that's why I've been very active.”

Re: Hey Tim, have you experienced any stigma because of how open you are about your status?

Tim: I don't experience too much stigma because of the positive friends I have. But there have been a couple of incidents along the way. I was diagnosed when I lived in London. And just after the news, I got my nose pierced. When I ticked “yes” for taking HIV medication on the form, the lady completely freaked out. My friend ended up having to say, “He's ticked yes because he is taking HIV prevention medication, he doesn't have HIV”. And so she was okay to pierce it. But actually, there's no reason that somebody living with HIV shouldn't be able to get a piercing because you take precautions. 

(According to the United States Centers for Disease Control and Prevention (CDC), the risk of transmitting HIV through body piercing or tattoo is considered low to negligible. There has not been a single documented case of this happening. For this to occur Tim would need to have a very high viral load and bleed significantly on the equipment. Then the artist would need to forget to disinfect the equipment before working on another client. Standard safety regulations, such as sterilising equipment and wearing gloves, used for every client would prevent transmission from happening.)

If you could guarantee all New Zealanders knew one thing about HIV, what would it be?

The U=U message, I’m undetectable which means I'm untransmittable. 

What else can we do to reduce stigma around HIV in Aotearoa?

To engage in positive conversations. Often stigma produces a defense mechanism in us and it expresses itself through anger. I would challenge people to really try not to let that anger come out but approach it with compassion. Once you're both being defensive and attacking each other the listening or understanding is lost. So yeah, having robust, meaningful conversations when you can is really important. 

Geoff Ruaine

Living with HIV for 25 years, Geoff Ruaine has seen a lot of changes in how the virus is treated. He tells us he’s noticed a shift in attitude towards HIV recently because of the advancements in medication. “People are now preparing to live rather than preparing to die when they get told they are HIV+.” But the shift in attitudes requires education.

“Some of our Māori and Pacific Island communities have no idea about medications and treatments. So they still think that if you get HIV then you will get AIDS and die.” To fight this misinformation, Geoff visits marae and churches to talk about HIV and AIDS. He also talks about takatāpui (sexual diversity in Māori society) and the health impacts of homophobia. Today, Geoff is working as an interviewer for the HIV Stigma Index project, a survey done by HIV+ people to observe the level of stigma and discrimination in Aotearoa.

Re: Kia ora Geoff, have you experienced any stigma because of your positive status?

Geoff: I am one of the lucky ones. I haven’t experienced much except a little bit with health care services. But this was going back to the mid-90s. A time when when stigma was very, very strong.

What happened when you told others about your status?

Day one I found out I was positive and day three I plucked up the courage to tell my whānau. They were blown away. They were saddened because they didn't know much about it, but they wanted to know more. So the challenge for me was to get educated, so I could educate my whānau.

For a person to be diagnosed at that time, and to have your family support from the very beginning, was huge. It paved the way for me to learn how to tell my story in a public forum, and work for the New Zealand Aids Foundation for 10 years as a health promoter of the Māori programme.

What is the biggest misconception about HIV?

It’s alarming that people still think you can get HIV from casual contact. Working as a nurse I have experienced people's attitudes and there's a lot of people who still think “ew” you can't touch somebody with HIV. So I think we still have got a long way to go with education.

Where do you think the shame around HIV comes from?

A lot of our young Māori and Pasifika people get diagnosed and do not seek support or services because of the shame that they must carry around for their families. Māori and Pasifika cultures are very homophobic and transphobic even though it's a big part of our culture. Like the fa’afafine in Samoa or Māhū in Tahiti and Hawaii. We've got a history of a third gender. It wasn't wrong until the missionaries came and said that it was wrong. That's had a devastating effect on the health and well being of our young people. 

What's the biggest thing that we can do to reduce the stigma around HIV?

I think one of the biggest things we can do is talk to our own whānau. Because the biggest change can come when we speak to those closest to us. Educate them, call out homophobia or stigma when we see it. Making a stand if you see someone harassed in public. I think it must start within our own families so it can have a ripple effect into our communities.