Rory O'Neill: There are still people living with HIV who haven't told a single soul due to stigma
Rory O'Neill and Denys Samson behind the scenes at The Late Late Show
Appearing on the on Friday, O'Neill told host Ryan Tubridy, "if you wanted to do a show about cancer, you could easily fill this audience ten times over with people living with cancer happy to talk about.
"If you wanted to fill this studio of people living with HIV, who were happy to talk about it, you would struggle to fill this sofa. Because the stigma still clings to HIV to this very day.
"Everytime I speak publicly... I know this week now, after talking to you [on the ] Ryan, I'll be getting emails this week and they'll be from people who are living in different parts of the country, mostly in smaller towns but not always, people who are living with HIV and they have never told a single soul, not a brother, not a sister, not a friend... nobody."
"The reason that I wanted to do this on Sunday night live entertainment is because most people out there still have an image of living with HIV that's trapped [in the past].
"People still have this massive fear about it. They think it's a life-ending condition, and that is not the case anymore. And it hasn't been like that for many years now."
Speaking to the earlier this week, O’Neill said he has been “inundated” with positive messages from the public since Sunday night, both on social media and on the streets of Dublin — and he even received a “lovely” message from Neil Tennant of Pet Shop Boys.
“It’s all sorts of people,” he said, “it's been amazing.”
"We were aware that we were taking a big swing [with the performance]. It was very different to what people expect maybe from Panti, quite dark in a way. We thought it was good, but you never know... other people might have thought it was pretentious nonsense.
"To find out nearly everybody else was into it too, it's lovely.”
“I've had quite a lot of messages on social media, and texts from people I haven't seen in years," he went on, "and quite a number of them were basically saying the same thing - that they were watching with young people and that there was a lot of questions and conversations about it afterward.
“That's lovely to hear because that's what I was trying to do."
The performance earned the highest score of the night from the judges (29 out of a possible 30 marks) and was voted the top dance of the night by viewers at home.
O’Neill’s performance has been welcomed by many who work to destigmatise HIV, including the executive director of HIV Ireland, who said the performance demonstrated "that there are no real barriers to what people living with HIV can achieve when we banish stigma".
"Where stigma persists to prevent people living with HIV from participating and achieving their goals, we all lose," Stephen O'Hare said, adding that O'Neill is "a wonderful ambassador for the community of people living with HIV".
"As he paid tribute to Prof Fiona Mulcahy, so we pay tribute to him for his tireless efforts to educate and inform people about HIV and HIV-related stigma, including the benefits of testing and being on effective treatment," he said.
Pádraig Burke, communications director with Gay Health Network (GHN), said the performance was “a landmark moment”.
“With this prime-time performance, Rory is breaking down HIV stigma and shining a light on the U=U message to people across the country,” Mr Burke said.
“The U=U message, Undetectable = Untransmittable, highlights the fact that people on effective HIV treatment can live long, healthy and fabulous lives without transmitting the virus to their partners,” he said.
“Rory and Panti are living proof of this.”
Mr Burke's role with the GHN includes working with the HSE’s Sexual Health and Crisis Pregnancy Programme (SHCPP) on the Man2Man program, which aims to provide clear and accurate information surrounding sexual health for men who have sex with men. He said despite the significant progress made in reducing HIV stigma “much work still remains to be done”.
“An exciting new HIV stigma campaign, developed in partnership with the HSE/SHCPP, other community partners and people living with HIV, is due to be launched in the coming months.
“But moments like this... can often be more impactful and wide-reaching than a campaign.”
Statistics published by the Health Protection Surveillance Centre in December 2022 indicated there had been more than 750 newly notified cases of HIV to-date in 2022, more than double the number for the same period in 2021.
Mr Burke said O’Neill’s performance can also be a reminder to people to get tested.
"The only way to know your status is to get tested and that's very important. Because if you know your status, you can get your treatment and you ensure you do not pass it on to anyone else.”
"And people should be aware that they can take precautions to protect themselves.
“Wearing a condom is one way to protect yourself from HIV and other STIs. There is also PrEP(Pre- Exposure Prophylaxis), a once-a-day tablet that can prevent HIV. Although not everyone who wants PrEP can get on the programme due to capacity and resources. Hopefully, the HSE will sort this out soon.
“Another tool in the kit to fight HIV is PEP (Post-Exposure Prophylaxis)”, he added, a course of tablets you can take after recent possible exposure to HIV, available from your local STI clinic or Emergency Department.
Rory O'Neill's performance was a signifier of how far we've come - but it was also a tribute to those who, sadly, were not as lucky as him, and did not survive to live and thrive.
“In the 80s, [HIV] was a death sentence," Terry O’Sullivan remembers.
The psychoanalytic psychotherapist and founding member of the Rutland Centre lost his best friend, RTÉ music-television personality Vincent Hanley, to the disease in 1987.
The Clonmel native, who started out his life as a young presenter in Cork, is most fondly remembered for presenting , a first-of-its-kind pop-music show that provided Irish fans a lens into Stateside pop culture.
When Hanley died on April 18, 1987, aged 33, the media did not report that he had died of AIDS.
"Rory was very lucky that there was a way of saving his life when he got it. My friend, and other people, were not as lucky, and they had horrible deaths," Mr O'Sullivan says.
Dr Fiona Mulcahy, whom O'Neill dedicated his dance to, was one of the doctors that treated Hanley in the late eighties.
"I do remember her," Mr O'Sullivan says. "She was just starting her career in St James's hospital at the time. And I remember her being a very humane and very nice woman."
"This was in the day when some doctors and nurses wouldn't touch anybody with AIDS or with HIV because the message on the street was that it was airborne and you could get it.
"But, there were people in Ireland who were at the forefront of making it possible for people to be treated.
"When my friend died, there was no specific designated place for the treatment of AIDS and HIV. There was a doctor, Dr Daly, he was the consultant hematologist in St James's, and he brought people with AIDS into his unit, but we couldn't talk about it.
"I worked in the Rutland Center, and the secretary [at the time] knew my friend was dying of AIDS and I had a very senior position there, and she didn't want me coming into work.
"That's what it was like," he recalls.
"It was a very different Ireland.. it was an Ireland that wasn't very welcoming to gay people, and many people didn't tell their family, and they ended up dying alone."
When his friend Vincent Hanley died, he was put in a body bag, O'Sullivan recalls.
"His parents were brought into the mortuary and that was the last they saw of their son, the last I saw of my friend."
When Dancing with the Stars judge Arthur Gourounlian commented that O'Neill's performance was not just for Dr Fiona, but for all the lives she saved, O'Neill was quick to add "and the ones she wasn't able to".
For O'Sullivan, it was his friends and the many others that died long before their time, he thought of on Sunday night.
"It wasn't just about Rory, it was about all the ones that didn't make it. And there were a lot of them.
"Thinking about Sunday, I can't get out of my mind that Rory was very, very lucky to be given the chance of living a life."
"I don't know him personally, but I'm glad that he's alive."
