“HIV has changed radically since the 1980s.”
It is now 40 years since the HIV/AIDS crisis began in America and subsequently swept across most of the world. Since that time, much has changed – from our understanding of the illness to treatments available – but there is still a long way to go in terms of education, stigma, and prevention, especially here in Ireland.
U=U, or Undetectable = Untransmittable, has been one of the most important scientific discoveries of this century. In 2018, a groundbreaking study found that those living with HIV – who are on effective treatment – cannot pass HIV on through sexual intercourse.
Executive Director of HIV Ireland Stephen O’Hare says that the discovery of U=U completely changed people’s lives. Where HIV was once seen a debilitating lifelong illness, or a death sentence, it is now a manageable condition.
He tells Her: “Modern treatment for HIV means that if somebody reaches an undetectable viral load they cannot pass on HIV through sex.
“This is still a revolutionary concept but one that everybody really must become aware of. It completely changes the situation, circumstances and opportunity for people living with HIV.”
There is ongoing research around HIV and finding a cure. The US Food and Drug Administration (FDA) recently gave the go ahead for human trials to begin for a one time “functional cure for HIV.”
The medicine uses a gene editing treatment that could be effective in this kind of treatment, and has been hailed an “important milestone” in the fight against HIV – progress that seems a world away from the 1980s.
“People were just sent home after being diagnosed, they were given a blanket and told – keep yourself warm until you die,” says Holly Shorthall, an activist with ACT UP Dublin.
“People would die from these AIDS-related complications all the time, but now because of these amazing scientific and medical advancements, if somebody who is living with HIV has access to proper care and treatment they can lead a life that is just as long and happy as anybody else’s.”
ACT UP Dublin, the AIDS Coalition to Unleash Power, is a diverse group committed to ending the HIV/AIDS crisis. They hold bi-monthly meetings and create different campaigns around awareness and reducing stigma.
The Dublin chapter was founded in July 2016 “in response to the lack of respective response from the government with regards to quite a steady rise of new HIV diagnosis in Ireland,” says Holly. “And obviously in response to the huge amount of silence and stigma that continues to surround HIV. “
Robbie Lawlor, another member of ACT UP, spoke this year about his own experience of living with HIV on the Tommy Tiernan Show. Diagnosed with HIV at 21 years old, Robbie had little knowledge of the virus, but now speaks openly about his status online, on TV, and on his HIV-focused podcast, Poz Vibe, with Lady Veda.
https://www.instagram.com/p/BzkxFnAiIRF/?utm_source=ig_embed
The interview elicited a fantastic response from viewers, but it also highlighted the lack of education around HIV in Ireland, and the stigma that still exists for those living with it.
A 2017 study by HIV Ireland found that 70% of people believed HIV could be transmitted through a bite, 24% believed it could be transmitted by kissing and 10% believed that it could be acquired from sharing a glass. HIV cannot be transmitted in any of these ways.
Holly attributes some of the stigmas around HIV in Ireland to a cultural attitude. “There’s always been a shame and a kind of uncomfortableness around sex in Ireland,” she says.
“I have friends who have been in the dentist and been told, I can’t operate on you today. One of my friends went to get a pedicure in a hotel, he mentioned his status and they didn’t know what to do with him.
“There’s a lot of misinformation, I think misinformation leads to confusion which leads to people kind of stigmatising other people.”
The stigma around HIV not only makes life harder for those living with it, but also contributes to the spread of the virus. “Stigma is one of the biggest issues in relation to prevention around HIV,” says Stephen. “It prevents the conversation from taking place, it prevents awareness from taking place, it prevents full awareness of how HIV is transmitted.”
Stigma affects all aspects of HIV and those living with it – and this is particularly true for women. The latest data released by HIV Ireland in 2018 showed that 20% of people diagnosed in Ireland with HIV that year were female.
“Women’s voices are very, very rarely heard when it comes to HIV,” says Holly. “There are so few people who feel comfortable enough to speak out, there’s almost no outreach groups or support groups available to them.
“While a lot of the stuff we see in the media is obviously around gay men and men who have sex with men, it does affect women as well.”
Stephen adds: “We have the gay men’s health service, but we have to ask ourselves what are we doing in pushing service delivery for women who may be at higher vulnerability to HIV.”
While people living with HIV fight stigma every day, the past 20 months has seen another barrier introduced to the fore – the Covid-19 pandemic.
There were significant delays in testing for the virus throughout 2020, which Stephen says has no doubt affected case number statistics going forward.
“In 2019 and 2020 there was less testing, and with less testing, you don’t know,” he says. “As we learned with Covid, if you don’t test you don’t know where the virus is, but similarly when testing was limited you couldn’t see where it was.”
Aside from this, the past few years have seen improvements in HIV prevention in Ireland. The introduction of PrEP, a medication people can take before having sex to have a very low risk of contracting the virus, has been a game-changer – although there is still work to be done to ensure it is made available to everyone.
PrEP was made free in Ireland in 2019, but a PPS number and medical card, or drug payment scheme card, is still required for anyone wishing to avail of the scheme.
Every person has a role to play in ending the stigma around HIV in Ireland – not just activists, and not those living with it.
Holly says: “It’s up to people who are not living with HIV to create an environment in which people who are living with HIV can, if they want to, discuss their status.”
You can find out more about HIV by contacting HIV Ireland on +353 (0)1 873 3799 or by email at [email protected].
You can find out more about the work ACT UP Dublin do here.
