Advocates and doctors alike have called for quality of life to be a key measure in determining the success of treatment for people with HIV.

Sarah Feagan, Vice President of the National Association of People with HIV Australia (NAPWHA) said that while great progress has been made in terms of biomedical interventions and the clear understanding that undetectable = untransmittable (U =U), our community still has a long way to go in reducing the stigma and discrimination that continues to be as pervasive as it is damaging.

“There's still a lot of shame and a lot of isolation for people living with HIV. There are a lot of barriers still around engaging in the community, and so much internalised stigma and fear.”

Ms Feagan, who was diagnosed with HIV herself, understands first-hand the immense challenges that come with a diagnosis.

“We know from some research most of the stigma happens in the bedroom. And this is where a lot of us are the most vulnerable – and I know myself, like many other people, have experienced physical violence in these situations.”

“Those feelings of rejection and shame just reinforce that you aren't worthy, that you are a social pariah, and that you are somehow dangerous", she told HealthTimes.

“Of course that's going to affect your mental health. How can it not? As human beings, we all want to connect.”

Ms Feagan was recently part of an expert panel dicussion which identified quality of life as a key measure of HIV treatment success. The panel discussion was convened by the National Association for People with HIV in Australia (NAPWHA) and ViiV Healthcare Australia to mark World Aids Day.

Ms Feagan first started working in the HIV advocacy and promotion space after a difficult period of dealing with her diagnosis.

“After my own diagnosis with HIV, I certainly wasn’t participating in the community in any way.”

“I was quite suicidal. I was experiencing a lot of stigma and discrimination, and ended up going off my medication, was in a coma, and in the ICU. And it was a very long journey. But I came out of that with a lot of love and support from good people.”

“That's when I got to meet the HIV community and really came to understand, as a white, cisgendered woman in Australia, the privilege I had.”

“And even if I didn't want to live with HIV for myself, I saw that I had a lot of privilege and access that a lot of people could only dream about, and that kind of threw me into advocacy and work.”

She says she finds her work with the community to be incredibly rewarding.

“When you see people click into that gear of acceptance of their HIV status, and have that understanding that they have a virus that is really manageable, that you can reach an undetectable viral load, that you cannot pass it on, and realise that
they can reengage in a sexual relationship with somebody, that is such a beautiful moment.”

Ms Feagan said that as a community, having made remarkable advancements in medical interventions, it was time to turn our attention to quality of life and prioritising mental health outcomes for people living with HIV.

“We’ve got to stop looking at this just in terms of the biomedical – treatment wise, that side of it is all going fine.”

“We’ve now got to get that scientific understanding out there in the broader community that U=U.”

“Quality of life is about happy people who are well looked after medically and can then go on and thrive as well.”

“HIV has been around for 40 years and it has come a long way. People with HIV have the same right to experience pleasure and joy and all the beautiful things that life has to offer – without any guilt or shame about their status.”

Ms Feagan said that when it came to why the stigma around HIV has been so difficult to shake off, the experience of COVID-19 and the behaviours observed during this time have been illuminating.

“We know the stigma towards HIV is partly because of that connection between HIV and sex.”

“And what we’ve seen with the intersectionality of COVID, is when anything is communicable and can be spread, we start pointing fingers at each other.”

“We start showing blame, and HIV has sat under this blame of gay men and bad behavior and drugs and all that sort of stuff, for so long.”

“Yet we know that that’s not the case at all – you can have sex once and you can acquire HIV.”

“HIV really doesn't care who you are or what you are or how much sex you have or what kind of sex you’re having.” 

“We need to have way more conversations, across the whole of society”, Ms Feagan explained.

“I think the ability of people like myself to live openly with HIV, really does challenge those perceptions – because I'm not this evil person with a virus. I'm just a normal woman.”