Exclusive: New study aims to break stigma surrounding HIV in NZ

A new study is aiming to break the stigma around HIV in New Zealand.

It follows former Welsh rugby star Gareth Thomas' decision to reveal he's living with HIV. In speaking out, he's hoping to change lives and help save them.

"I'm living with HIV," he revealed on Twitter. "But I choose to fight, to educate and break the stigma."

And it's a stigma that has thousands of Kiwis living in fear.

Rodrigo Olin was diagnosed with HIV 16 years ago, when he was 20 years old.

"It's just that fear that a lot of people have of saying it out loud," he says.

"People tend to change their attitudes to me or they just have literally told me, 'I'm not interested to get to know you because you've got HIV'."

He's lost friends because of it, and he's never told his family in Mexico. He says for people living with HIV, Thomas' example could be life-changing.

"Seeing a sport public figure of that calibre coming out and saying, 'I'm coming out because I want to take control of my life', it's inspiring," Olin says. "I think it will just make us stronger, rather than let us die alone or without sharing a secret."

Now a new project wants more people to share that secret. The Stigma Index is a national survey seeking to understand the impact of HIV stigma and find ways to reduce it.

The study will interview 200 people living with HIV across New Zealand. The interviewers all have HIV themselves, and sit side by side with the interviewee to go through the survey.

Its results will build a baseline of evidence on the extent and impact of HIV stigma, and will be used to inform advocacy efforts, guide national policy, and contribute to recommendations given to the sexual and reproductive health sector.

More than 100 countries are already running it, and for the first time it will be conducted in New Zealand.

"We have a huge problem with HIV stigma in New Zealand," Jane Bruning from Positive Women says. "And part of that is because it's a low prevalence country, which is great, but what happens with that is that there are so few people with it they feel isolated and afraid." 

Some of the early data shows devastating impacts - people losing their jobs, losing relationships, becoming socially isolated, suffering poor mental health and wellbeing, and discrimination in the health sector.

Examples of that discrimination include isolation, demeaning comments, and even dentists being reluctant to treat them.

"The most damaging thing that can happen is that people will be afraid to even get tested," Bruning says. 

She says stigma remains a barrier to testing, and if people don't get tested, they don't get treated.

The test is a simple finger prick blood test. For those who test positive, modern medicines make the levels of the virus so low it cannot be passed on, even with unprotected sex.

There are about 3500 people living with HIV in New Zealand: 178 people were diagnosed last year. Gay and bisexual men remain most at risk, but 15 percent of the 178 were infected through heterosexual contact.

A delay in diagnosis in 2014 left Heather Sangster Smith legally blind. Then a teacher in her 50s, she didn't fit the mould of someone at risk of HIV.

After years of worsening symptoms she was on the brink of death when doctors eventually found out why.

Former Wales rugby captain Gareth Thomas.
Former Wales rugby captain Gareth Thomas. Photo credit: Getty

"They tested for a particular type of pneumonia called PCP, which Freddie Mercury had, and the doctor said to me, 'well, we've really got to test for HIV because PCP pneumonia is a strong indicator' and it was like, 'pardon, what are you talking about?'?

Five years on and undergoing treatment, she's otherwise well.  She now wants to share her story to educate others.

"A lot of us live in ignorance, I was ignorant," she says. "We're just not a medical condition, we're real people living real lives."

It's now hoped that with more people sharing their HIV secret, it's the stigma that will be killed.

"We have really good treatments, but what indeed is still killing us is stigma," says Olin.

The Aotearoa New Zealand Stigma Index project is currently seeking people living with HIV to be interviewed. Interested participants should email info@stigmaindex.nz.