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Adam Shanely & Tonie Walsh

Mar 23, 2021

Culture Jam

Office

  • Dublin

Channel 4’s It’s A Sin burst onto TV and streaming screens in late January 2021. The five-part mini-series, created by Russel T Davies, instantly caught the eyes and hearts of audiences worldwide. As well as receiving critical acclaim, the show has also been a highlight performer for Channel 4’s proprietary streaming service, All 4. It recorded its highest number of monthly views ever in January 2021, nearly doubling the figure from the year previous.

The drama, set in 1980s London, centres on a group of young gay men and their friends as they live though the HIV & AIDS epidemic.

For this culture jam, we wanted to understand the Irish perspective on HIV & AIDS. Looking at it from the context of Ireland in the era that It’s a Sin is set, but also the Ireland of today. Asking what the challenges are, what stigma exists and why are we still talking about HIV & AIDS in Ireland in 2021. To help us answer these questions and learn more we were joined by

Adam Shanley - MSM Programme Manager at HIV Ireland

Tonie Walsh - LGBT activist, journalist and founding editor of Gay Community News and the Irish Queer Archive

Here are some of our key takeaways from chatting with them.

“Our memory of that period is dimmed but also fraught with distress, anger, sadness, regret, a whole host of emotions…it’s not dissimilar to Covid today”

We don’t have a reputation of tackling things head on in Ireland. We sweep them under carpet knowing that we will have to address them eventually – just not right now. The response to the HIV & AIDS pandemic of 1980s Ireland is no exception. It is moment in history that has never been fully examined, because it has never fully been accepted as having happened. The glossing over of this period and its events has caused indescribable damage to those who lived through it.

“It's still really raw for many of us who lived through it, because society has actually been very slow in addressing what happened and the damage that was done. The damage that was done to people who didn't survive, but also the damage that was done to those who did survive”

Tonie hits on something that is often overlooked when we discuss events of this nature: we often focus on the lives lost but omit the lived experience of those who survived. A generation of Irish men and women lived through a life altering and life threatening period. A period that up until recently, was seen as a shameful blip in the canon of Irish history. By not acknowledging the events of the past, we deny the experiences of those who lived through them. The concept of the LGBTQ+ community self-treating and preserving the memory of the HIV & AIDS crisis becomes more and more apparent in talking with Adam and Tonie.

The work of the late Mary Shannon (1947-2020), custodian of the Irish NAMES Quilt which was created in honour and remembrance of those who died in Ireland from AIDS and HIV related illnesses, serves as a reminder of this. In the absence of formal acknowledgment from the Irish government or mainstream society, the community most impacted by the HIV & AIDS crisis of the ‘80s have had to self heal and self-educate. A potential reason for why It’s A Sin is striking a chord with so many people is because it has humanised the experience of the LGBTQ+. Making it undeniable, making it true.

“HIV comes packaged with a culture of misinformation, stigma and shame. While a lot has changed in the past thirty/forty years, that stigma and shame has not”

Through his work in HIV Ireland, Adam is able to speak about the attitudes and perceptions of HIV & AIDS in Ireland today. While It’s A Sin has momentarily placed the topic top of mind for people, it does not address the present day stigma and shame that has pervaded since the ‘80s. Adam explains that there is stigma rooted in wanting to place blame with specific groups affected by HIV, in an attempt to rationalise the disease.

“When the numbers of new HIV diagnosis come out every year, you have the warriors in the comments going and looking for ‘Who do we pin this on? Oh it's the migrants coming in’ or ‘Oh it's the promiscuous gays or the sex workers or the drug users’ instead of it being met with compassion. So much of that still exists”

This discriminatory reaction to HIV is not new. The works of Susan Sonntag are noted by Tonie, explaining that, as society we will look for an available, vulnerable minority that already comes tainted with some societal ‘otherness’ to place blame on. We do this to make sense of things, to cope with something unquantifiable like a new disease. Tonie’s observations seem to echo the recent outrage against young people in Ireland as being the primary perpetuators of Covid-19.

There is still a stigma towards HIV and it can actually fuel new HIV infections. The more you feel a stigma (real or perceived) about HIV, the less likely you will access testing. Then, you are less likely to get diagnosed and get treatment.

In contrast to efforts of the past which has seen the LGBTQ+ community self-heal, Adam notes that the self-perpetuating stigma of HIV must be challenged by everyone , regardless of HIV status. The period of assigning blame to a specific cohort has passed. This is an issue that everyone in society should be working towards solving - not just those most at risk.

“If you're sexually active – go and get tested. If you have more than one sexual partner - go and get tested. There should be nothing shameful about it. It should be as easy as going to the dentist”

In spite of all the advances in the prevention and treatment of HIV & AIDS there are still people dying in Ireland. It should be noted that the numbers are exponentially smaller in comparison to the number of lives lost in the ‘80s and ‘90s, however it begs the question, why is anyone still dying in a country from something that is preventable through medication and antiretrovirals? Tonie explains that these deaths are generally associated with the late diagnosis of AIDS. That in itself poses more questions.

If someone presents for the first time with full blown AIDS it suggests one or more of the following:

  • they have not had access to adequate sexual health information
  • they do not know their status
  • they have not been encouraged to get tested
  • they are afraid to get tested

Adam reiterates this citing that nearly half of all new HIV diagnoses in 2020 were diagnosed late. While this nods to a lack of sex-ed and accessibility to the relevant services, noting that the MPOWER program at HIV Ireland is currently the only place where you can access a HIV test in Ireland, there is more at play here.

If you don't have the understanding of what makes you vulnerable to getting HIV then you may not feel at risk and not feel the need to get tested. Historically, HIV & AIDS has disproportionately affected certain groups, however Adam reminds us that HIV does not discriminate and if it has a chance, it will take it.

“There are more new HIV diagnosis now than there has ever been in Ireland…however we have all the tools at our disposal to end HIV”

The heightened number of newly confirmed HIV cases in Ireland can partly be attributed to higher rates of testing. Also, policy around individuals with a positive HIV status moving to Ireland is now recorded separately.

However, even if we take out those incidences, Ireland still has more new HIV cases than ever before. Infuriatingly, we have all of the tools to end HIV at our disposal – potentially the most significant difference between the events depicted in It’s A Sin and modern day. So what has changed in the space of forty years? It’s A Sin signalled contraception and celibacy as the only means of HIV prevention but we now have a number of breakthrough treatments and medications.

PrEP

PREP stands for pre exposure prophylaxis. Essentially it is a pill taken by HIV negative individuals before and after sex, on an ongoing basis. It is nearly 100% effective at preventing the transmission of HIV. PrEP is available through the HSE, free of charge, to those who are considered to be at substantial risk of contracting HIV through sex and is available in most sexual health services across the country.

PEP

Post Exposure Prophylaxis (PEP) is an emergency course of medication that aims to prevent HIV acquisition following a recent sexual, or needle-stick exposure to HIV. It is a 28 day course of anti-HIV medication that can prevent HIV establishing itself in a person’s bloodstream. It must be taken within 72 hours of possible exposure.

In terms of treatment and testing, much has changed. In the ‘80s, HIV treatment was available and while it had some success in extending a patient’s life it wasn’t able to improved quality of life. Waiting periods for the result of HIV tests could take as much as 3 weeks.

Today, treatment can consist of just one pill taken daily and the goal of modern HIV treatment is that the virus is supressed to a level so low and undetectable that a person with HIV can live as long and healthy a life as anyone else. Waiting periods for the result of a rapid HIV test today is 60 seconds and self-testing is also available.

Education

On the point of addressing the stigma and discrimination witnessed in the TV series, education and health information promotion is something that has also progressed.

Undetectable = Untransmittable (U=U)

Effective HIV treatment (or medication), and an undetectable viral load, means that the risk of HIV being passed on through sex is zero. People living with HIV can now feel confident that it cannot be passed on to sexual partners if they are taking the right medication.

“When you consider what we watched on It’s A Sin, it's a complete 180. People with HIV live long healthy lives, can have great sex lives, can have babies, can start a family and not be concerned about passing on HIV.”

Clearly, there’s a need for a series like It’s A Sin to bring that moment in time into focus and acknowledge that period in history. However the concern is that viewers may leave the It’s A Sin thinking HIV & AIDS is a problem from the past. So, what advice do Tonie and Adam have for us to move the conversation forward?

HIV is not over, but it can be. It's incumbent on us all to share information as often as we possibly can, and get comfortable with the message.

  1. Start a conversation with a partner, housemate or friend saying ‘Did you know that people living with HIV have better treatments now and live long and healthy lives?’ Normalising the topic of HIV will combat the inherent stigma and discrimination that has been built up over decades.
  2. Research and interrogate that period of Irish history in depth. During that HIV & AIDS crisis people developed coping mechanisms and survival strategies, some of which have never been more applicable for people living through Covid-19 today.

Clearly there is a lot work do. But things like It’s A Sin are starting long overdue conversations we are only now we are willing to have.

For more information please see www.hivireland.ie

*Image credits:
Tony Walsh - Laura Kinsella Walsh
Adam Shanely - Babs Daly

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