New program aims to empower women living with HIV: 'Internalised stigma is probably our biggest issue'
By Kate Rafferty|
Despite effective treatments that control HIV to undetectable levels, the world has not moved on from the fear-mongering HIV 'epidemic' of the '80s and '90s.
Now, a new program spearheaded by community organisation Positive Women Victoria, which works to support women living with HIV, is aiming to rewrite the narrative and empower women in the community to 'reach their potential'.
"Fear about HIV has been really hard to shake," Heather Ellis, Communications & Engagement Coordinator at Positive Women Victoria tells 9Honey.
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As a result, Ellis says that today, there is "very little awareness" of how HIV can be effectively treated.
"When people living with HIV are on treatment and have an undetectable viral load, science has proven the virus can not be transmitted sexually," Ellis explains.
"This is a term called U=U or Undetectable equals Untransmittable, but most people in the general public don't know this."
She adds: "Ever since the 'Grim Reaper' advertisement of 1987, people have had a fear-driven, warped understanding of HIV."
Heather Ellis, who is a woman living with HIV herself, says that today, that same stigmatisation of the HIV community is still rife and has a devastating impact on people living with HIV, particularly women.
"The thing about stigma, is that when it's so widespread, and when there's not a lot of information around to prove it wrong, almost everyone starts believing it," says Ellis.
"For us, internalised stigma is probably our biggest issue," she reveals.
According to Ellis, at least 95 per cent of women living with HIV fail to disclose their positive status publically out of fear.
It's a voice going over and over in their head saying 'you're going to be rejected', 'you're going to be judged', 'you're going to be sacked'.
"It means that women hide away," she says.
"They hide from their diagnosis, or they hide from their family and friends กช because they are so afraid of being identified as someone living with HIV."
For this reason, Positive Women Victoria has decided to launch their Reaching Your Potential program กช a program designed to equip women in the HIV community with the skills and confidence to become HIV advocates and leaders, if they wish, and raise awareness and fight HIV stigma.
The program has been funded by ViiV Healthcare's Positive Action Community Grants 2021, which aim to support the HIV community and raise awareness about HIV more broadly.
"I know from my own experience, it wasn't until I started speaking out about my own HIV status that I truly started to feel confident in my own skin," Ellis says.
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Ellis was diagnosed with HIV in 1995 when she was 30 years old and living in London.
At the time there were no effective treatments available; when she was told the news by her doctor, she was given five years to live.
She recounts her experiences in her second memoir,?Timeless on the Silk Road, which details a motorcycle trip she took along the fabled 'silk roads' that link London to Hanoi just after the discovery of her HIV status.
The trip was meant to be her last trip before she died.
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Ellis says that it wasn't until the release of her first book in 2016, Ubuntu: One Woman's Motorcycle Odyssey Across Africa, and then her second book in 2019, Timeless on the Silk Road?that she truly started to reckon with the stigma she had internalised since her diagnosis in 1995.
"I remember feeling very alone, and very afraid. Stigma like that - it stops you from living a happy life," Ellis says.
"But when I wrote my books, and when I started speaking about them publically, and people started reading them, I felt this shift."
Ellis says it's her hope, the comprehensive?Reaching Your Potential?program can help other women also gain confidence in themselves to pursue their own goals.
"And maybe some of these women will become advocates in raising public awareness about U=U and ending HIV stigma, because the more we talk about HIV, the more understanding is out there," Ellis explains.
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Within the program, women will get the chance to be mentored by HIV advocates like Ellis, and also receive specialised confidence and public-speaking coaching.
Along the way, participants will learn various skill sets, including how to act in front of a camera, and tips on being interviewed.
"It's an incredibly varied and dynamic program, with the idea that some of these participants will grow to be the next generation of advocates in the community," Ellis says.
Bringing an end to HIV stigma
One of the program's broader aims is to bring an end or at least a dampener to HIV stigma.
Still, today, understanding of HIV and the advancement of modern treatments is lacking, and Ellis notes that the current conversation really needs some updating.
"Outdated views really do taint our community," she says.
"There's a total gap in understanding, both for people who grew up in the '80s, where there was basically no information around about HIV, and young people today, who haven't been educated about HIV at all.
"And today, the quality of life for many people living with HIV is mostly the same as it is for people without HIV."
For example, Ellis reveals there are now "amazing" effective treatments available, which can involve a person taking just one pill a day, or an injection every few weeks กช with minimal to no side effects.
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These treatments are so effective, those who take them are at zero risk of transmitting the virus to another person.
"This is because treatments can now reduce a person's level of the virus to such a low state, it can't be carried on," Ellis explains.
As the Australian Federation of AIDS Organisations website explains, modern treatments can now reduce a person's HIV 'viral load' to 'undetectable' levels, meaning they are safe to have sexual intercourse with partners, or give birth, without fear of transmitting the virus.
Not to mention, doctors are now "inches away" from finding a cure, according to Ellis, though she claims treatments today are basically just as good.
"The point is, people living with HIV today are just as happy, vibrant and healthy as anyone else," says Ellis.
"Now, there's a need to catch society up, because awareness is still so incredibly low."
