The GUIDE clinic at St James' Hospital in Dublin has announced its collaboration with the Institute for Successful Ageing (MISA) in setting up a Platinum Clinic for people aged 65 and over who are living with HIV. It will be the first of its kind in Ireland.

Last month marked 40 years since the first ever case of HIV was diagnosed, but awareness in Ireland waxes and wanes. While statistically Ireland has the highest number of people living with HIV than ever before, attempts to destimagise the condition  are often left to those living with it. Since the mid-1980s nearly 10,000 people in Ireland have been diagnosed with HIV, with recent years averaging 500 new diagnoses each year. In 2017, 11 people in Ireland died of AIDS, the latest and most serious stage of the HIV virus.

In 2019, Mary Elaine Tynan commissioned a radio documentary called The Undetectables examining those living with HIV in Ireland today for RTE's Doc on One. For the project, Tynan interviewed two men and two women who have a positive HIV status. "It took the longest of any documentary I have ever made. It should have only taken me a few months, but, in the end, it took me three years in total," she says.

The intense stigma which accompanies HIV meant that people were not comfortable to come forward and share their experiences with Tynan. The two women interviewed for the documentary requested to remain anonymous and had their names changed and testimonies spoken by actors.

Tynan got the idea for the documentary after seeing a post on Facebook by a man named Michael who had written about how he had experienced abuse from the LGBTQ+ community for being openly HIV positive. Michael went on to be the first person Tynan interviewed.

Since the project came out in September 2019, Tynan has received numerous emails about the positive impact it has had on HIV awareness. One of the women interviewed even felt confident enough at the reception to tell her daughter about her HIV status.

De-stigmatising the conversation

Despite this, much of the activism around HIV in Ireland is still carried out by those living with the condition. Robbie Lawlor has been living with HIV since he was 21. He hosts the podcast Poz Vibe with Veda Lady where they talk about their experiences with HIV. Lawlor also recently appeared on The Tommy Tiernan Show to talk about his HIV activism. His passionate vulnerability communicates his urgent message about the rise of HIV in Ireland directly to all listeners.

"I always find that people with HIV tend to be dehumanised and HIV stands for human immunodeficiency virus. People forget the H and focus on the V or a sexual act or that you took drugs or whatever. They dehumanise you. The reason why I got involved with activism is because it is time to put the H back in HIV," he says now.

"Initially the activism came out of anger. The more I met people with HIV, the more I would hear their stories of rejection and the discrimination they faced. The amount of stigma that you hear is just so unjust. The majority of it is born out of pure ignorance about HIV."

As well as being an activist and an educator, Lawlor is studying his PhD in HIV treatment across the world, specialising in the Ukraine. The intensity of his work can result in burnout. "I am going about and telling my story on average four times a week and talking to people very openly and honestly – like on The Tommy Tiernan Show. I’m always revisiting the most traumatic moment of my life. I want to give it a positive spin, trying to reinforce the importance of education," he says.

"People can think so differently about HIV from one hour of conversation and I get a buzz from that but it can take its toll. I always feel like I can just tell my story, but my story is not representative of all those living with HIV. I have felt very frustrated because I just wanted other people to do the same. I have amazing support, great friends and I’ve been going to therapy the past few years. Giving so much a part of me is where the burnout comes from."

St James' Platinum Clinic for over-65s is a step towards normalising HIV as a chronic condition with little threat. In 1987, St James’s Hospital was the place that first established the HIV service and the Department of Genitourinary Medicine (now the GUIDE Clinic). In 2000, it expanded its services by appointing a specialist Infectious Diseases Consultant.

Lawlor presses the importance of having well-educated and compassionate specialised medical staff for those with HIV. "Our doctors aren’t equipped or prepared to deal with HIV so having a multidisciplinary clinic in St James’ hospital is culturally so important," he says.

"Medical professionals can be some of the most stigmatising people in the lives of people with HIV. I know so many people with HIV who don’t tell their parents, or siblings, or even their spouse at first. However, the people that they definitely do tell are medical professionals. Imagine you are opening yourself up for the first time to someone and they react horribly to you. HIV Ireland did a survey and found that 18% of respondents said that they felt stigmatised by health professionals at one point," Lawlor says.

"We don’t feel safe to open up a lot to our healthcare workers but if we don’t give our details to the GP it could be dangerous. If you are a gay man going to your doctor, talking about any kind of sexual health you get sent to a specialist even though it is so treatable. They will have their own hang ups about sexuality, gender identity, and other things. There needs to be an education for med students and nursing students to be able to deal with these things," he says.

Medical campaigns

John Gilmore is an assistant professor in nursing at UCD. They talk about the importance of the Undetectable = Untransmittable, abbreviated to 'U=U', campaign that was run by the HSE early last year. "I think there’s a big job of work to be done in Ireland around awareness of the realities of those living with HIV in Ireland and their risks. HSE ran a campaign last year highlighting the fact that people who are HIV positive who are on effective treatment cannot pass on the virus," they say.

"We’ve come to a stage where the medication, and the management of the medication, is so good there are relatively few side effects. However, with older people, it’s a bit different. Some of them will have acquired HIV at a time when we didn’t have the same type and scope of medication. A lot of the time, older people living with HIV are dealing with the consequences of medication they have taken in the past."

"Having a central point which is age-appropriate, as well as HIV responsive, is ideal. Obviously, we all have different needs, and a people-centred approach is core to healthcare. From that it is important to address what are the fears and concerns of older people living with HIV," they explain.

Ireland is one of the only countries in Europe where HIV is on the rise. Gilmore puts this down to a society still largely uncomfortable talking openly about sex and sexuality.

"HIV is most prevalent in a lot of seldom heard groups. We have the LGBTQ+ community, and gay men are gaining more of a voice but we think about other people who are exposed to HIV; we have IV drug users, migrants who we fail to care adequately for. It is important that we centre their voices and are responsive to their needs in particular. [The Platinum Clinic] is just one example of creating a service responsive to a particular set of needs which is older people living with HIV," they say.

Ireland was late when it came to providing PrEP (pre-exposure prophylaxis) which is a daily tablet that prevents HIV transmission even if you have sex without a condom. Whilst it should be widely available now, the pandemic curtailed sexual health services by 77%. HIV Ireland and Empower, two charities looking to provide HIV support and education, took the reins over the past year and worked to provide home test kits during this time. However, Gilmore and Lawlor both stress the need to invest in sexual health infrastructure. Only yesterday, a national outbreak of early infectious syphilis (EIS) was declared in Ireland.

HIV in media

On Lawlor's podcast with Veda Lady, they discuss being HIV positive with guests who are also HIV positive. This gives a safe, controlled space where the conversation around HIV can be shared by those most affected by it. One of the recent discussions was looking at how HIV is presented in the media, spurred on by the release of Russell T Davis BBC drama It's A Sin which looked at the AIDS crisis in early 1980s London.

"People in Ireland didn’t truly grieve the AIDS pandemic or deal with the trauma," Lawlor begins. "Once HIV started coming in in 1996 – I talked to lots of people who lost people during the AIDS pandemic – people just stopped talking about it. It went really underground even until I was diagnosed in 2012. Through the silence, the trauma lasted. It’s A Sin for many people gave a sense of feeling and educated a whole generation of people who had no idea what that was like – including me."

"However, as a young person who knew nothing about HIV and AIDS but is on medication that lets me live a normal life, I still live with the negativity of the AIDS pandemic because that’s the only education that people get. The grief and the homophobia and transphobia and sexism is still evident today," he says.

"[It's A Sin had] no representation of women even in the background, yet in Ireland, this demographic is seeing about 20-25% 0f new diagnoses. I know women who are HIV positive and have said to me, “Robbie, I thought this was a gay thing”. Even representation [of HIV stories] need to be more diverse. I have a friend who says 'give me a Fleabag with HIV'," he explains.

In the month following It's A Sin's finale, HIV tests went up 400% in Ireland. "It got me on The Tommy Tiernan Show and people all across Ireland were able to hear me talk about this," Lawlor says.

"However that still means it is still down to us to tell our stories and open ourselves up to potential rejection. I love doing what I do, but I didn’t set out to be an activist. I just wanted to get on with my life."