Transcript generated automatically by AI and may contain errors.
Chapter 1: What personal story does Emily O'Reilly share about her brother Brian?
Emily O'Reilly, good morning. You're very welcome.
Thank you, Brendan.
So, Emily, people have known you as the Irish, then European ombudsman. Of course, you were a renowned journalist, investigative journalist, author. But today you're going to talk about something more personal to you. But I think you think there's an untold story here. So. Your brother, Brian, was many things, a brother, obviously, a son, an uncle, a partner.
He was also a gay man who contracted HIV back in the late 80s, early 90s. And he died three years ago yesterday. Is his anniversary a hard day for you, by the way?
Yeah, well, obviously it's the memory of Brian, his birthday as well, because that was just a few weeks before he died. And yeah, but I think of him literally every day.
Do you? Yeah. And he was the baby in the family, your mother's favourite, I believe.
Yeah.
Yeah, I said that at his eulogy. I'm not sure how my siblings, my other siblings thought about it. But yeah, Brian was, he was the baby. We were incredibly close as siblings. Not always that usual to have that close a bond. And I reckon he was my mother's favourite. Maybe not exactly at the time he came out. But in later years, I mean, she absolutely adored him. And yeah. Yeah.
So would you have been aware of his sexuality? When would you have known?
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Chapter 2: How did Brian's HIV diagnosis impact his life and family?
Oh, absolutely. I mean, it was criminalised. And so anything was done if you wanted to go to clubs or pubs and meet other men. You know, you always run the risk of a raid by the Gardaí or being sort of exposed in your workplace or whatever. So that was a huge deal. And it's hard to remember. In fact, before, you know, today, I decided I kind of just refresh my mind about that. And I watched...
A documentary that was made a few years ago by Bill Hughes about Vincent Hanley, the RT presenter who died of AIDS in the 90s. No, not even the 90s, 1987 he died and he was 33 years of age. And I met him in New York with Brian, but the documentary, it's a wonderful documentary and well done, Bill Hughes again. But it's still extraordinary to recall just how terrifying things were for gay men.
And the year that Brian went to the United States was the same year that there was an infamous killing in Fairview Park in Dublin. And that was of a young gay man, Declan Flynn, who was beaten to death by four teenagers, including a 14-year-old. And that was horror enough, but the real horror was actually the court case when they were found guilty of manslaughter. The judge let them walk free.
He said there didn't need to be any correction really because they all came from good homes. And that was it. And in fairness to the community, there was a lot of anger about that. I think there were marches as well. But it was as if, you know, there was a little daylight between, you know, the judicial system in relation to the way it treated gay men and the way society did.
So that was the environment in which Brian headed off to New York.
Yeah. Now, unfortunately, heading to New York at that time, he was heading into another environment, wasn't he?
Yeah.
His timing was terrible. He went from one hell into another hell because in 1981, June 1981, was the first official recording of AIDS in the sense that the CDC, the Centre for Disease Prevention and Control, issued the first report about the deaths of five young gay men from a form of pneumonia. And these were the first recorded deaths from AIDS in the United States.
And between 1981, which is the time that Brian went, and 1990, sorry, 1981 and 1995, which is just before the Miracle drugs came on stream. Approximately 60,000 gay and bisexual men died in New York City alone. So it was literally a plague. And it was as if your entire community was being wiped out in front of your eyes. And of course, you didn't know whether you were going to get it.
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Chapter 3: What challenges did Brian face living with HIV in the 1980s?
Brian stayed in Dublin not for that long. He was a big city boy and he went to London and Whoever was protecting him or whatever was protecting him, he managed to live, obviously, long enough for the miracle drugs, the antiretroviral therapy, to come on stream in the mid-1990s. And that was it for him in terms of the terrors being lifted from that time in 1990 when he was first diagnosed.
OK, so he went on the antiretrovirals and I think he kept all that quite private, did he?
Yeah, well, yeah, I mean, I think when you have, you know, a chronic illness, which this obviously was, you don't want constantly to be reminded of it. So whenever I would meet Brian, if he was fine, I would take my cue from that. I wasn't going, how are things? And, you know, how's the ART going? And blah, blah, blah, blah, blah. And I was in the 90s. I had five children.
So, you know, I was up to my knees in small babies and toddlers. And I didn't see him that often either. But Brian was a, you know, he was a he was a bubbly guy. Very, very funny, very charming. And the last thing he wanted was a sort of a downbeat conversation about his health.
OK. Yeah. I gather everyone loved him. Your kids loved him. Yeah.
Yes, absolutely. They did. They really did adore him. He was the, I remember when shortly before he died, my son sent him a WhatsApp, which Brian was delighted with. And he said, not everybody can boast of having such a buff, fabulously handsome gay uncle, you know. So, yeah, they loved him.
So was he well most of the time then?
He was, yeah. He was well. And I mean, he, you know, the truth of it is he did have a great life for most of that period. He worked for a global company. He travelled a lot. And because it was a travel company, he could travel first class and business class and everything. So he had a super job. He had a long term partner. So life was good in that period. Yeah. Until it wasn't.
Yeah. So tell me then about Easter. It was Easter 2021, was it?
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Chapter 4: How did societal attitudes towards LGBTQ+ individuals affect Brian's experiences?
The big one being?
The big one being Kaposi's sarcoma. Now, for people of my age, we well remember Kaposi's sarcoma because it was the iconic illness of the AIDS era. It's a form of kind of skin cancer. Anybody who watched Philadelphia, the movie with Tom Hanks might recall his character. He was a lawyer and he was doing very well in his corporate company.
And one day one of the partners spots this lesion, this spot on his face and he is sacked because they know he's gay, they know blah, blah, blah and so on and so forth. So I always remember that. And my daughter was trying to refresh my cultural references. And she talked about the drama documentary series, It's a Sin, which was about the AIDS epidemic in the UK in the 90s.
And I think Kaposi's sarcoma. So Kaposi's sarcoma marked you, branded you as somebody with AIDS. And it was incredibly... Unusual. Well, it was beyond unusual that Brian would get it because the metrics of his HIV, if you like, of his immune system were perfect. You know, he was very good. He had a super HIV consultant.
And when his doctor wanted him to go and have this lesion on his knee and on his ankle biopsied, his consultant was amazed. No, surely not. You know, your HIV metrics are fantastic, blah, blah, blah, blah, blah. But it turned out to be Kaposi's sarcoma. And that completely terrified him more than the kidney, more than the heart, more than everything else.
Yeah, because that was that was the one, wasn't it? Absolutely. And that was the one that terrorised the imagination and everything.
Yeah.
Yeah. So so what happened then health wise?
Well, he well, the Kaposi's sarcoma, Brian, he just he just he was terrified it was going to go to his face. And he insisted on chemo. I mean, one day when he was getting a transfusion for the sodium thing, he happened to be in a ward where people were having chemo. And he said to me, I envied them.
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Chapter 5: What were the medical challenges Brian encountered as his health deteriorated?
I wanted him, I wanted, I mean, I said this at his eulogy, to take him to a place of comfort, of greater comfort than what he was enduring at that time, because he'd had to go into, he lost his job because of his illness. He'd had private health insurance. He lost that. So he was therefore in NHS hospitals with slightly chaotic atmosphere there.
I remember when he broke his shoulder two months before he died and he was in the hospital and four days in a row they cancelled his operation because somebody else had come in and blah, blah, blah. And four days in a row, he had had nil by mouth, you know, over the bed to say you can't be fed. And one day he rang me and he said, Emily, they forgot to reorder my lunch.
You know, once they heard that the operation had been cancelled. So could you bring me in a Pret-a-Manger sandwich? And I can't pass by a Pret-a-Manger cafe in London now without thinking about him. So that was it and he couldn't, he had the shoulder break, he had the leg thing, he was in a wheelchair, he lost four stone in the space of six months to a year.
He was withering away and still nobody could say what was fundamentally wrong. wrong with him and how it was going to be fixed, because everybody was happy with their own little silo piece. But collectively, there was no one individual, no medic looking at the bigger picture, if indeed he could have been saved at that point.
Did he accept at some point that he was dying? When did he know?
Well, he did not accept it. He would not accept it. I mean, even a month or so when I sort of said something that might have entered that area, he said, I mean, I'm not dying. You know, I said, no, it's OK, Brian. Nobody's told me that you are. Nobody had. I tried to. I didn't want to. The first person to tell him he was dying was...
The doctor, a random doctor who went to see him when he was admitted after a collapse in his nursing home and who very bristly said to him, by the way, if your heart fails, we're not going to resuscitate you because you're in too bad shape. And that would have been the first time that anybody had indicated to Brian that he was dying and he died one hour later.
Okay. Did he die of AIDS?
You see, I remember, you see, people would ask me after he died, what did he die of? And I'd start this rigmarole saying, well, he had HIV and then and then and then and then and then and then. And I remember one time somebody said to me, what did he die of? And I said, he died of AIDS. And this person was shocked and I was shocked. No, he didn't in the sense that, you know, he didn't get...
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Chapter 6: How did Emily navigate her brother's healthcare and treatment decisions?
So I got them and I spent, you know, every few months I'd look through them and, you know, trying to get to grips with the medical language. I'm fairly good on science and medicine and all of that in terms of basic technology or basic vocabulary. And I did get to see, I got to see his HIV consultant, but shortly after Brian had died.
Yeah, so this was the thing as well that set me off on this particular journey, as they say. I met his HIV consultant and actually all I wanted to do then was to talk about Brian because Brian adored him. And he was the doctor who was kind of who most, who best knew Brian. Yeah.
And would he have been over, again, that word you used, the collective. Would he have been over the collective illnesses?
Well, he certainly would have been emailing the various consultants and so on. But There was nobody, you know, he was doing the HIV bit and somebody else was doing that bit. Anyway, it's got a bit of a long story.
And what did he think?
Well, I was sent a pricey and they wouldn't give me his records. They offered me a pricey of the conversation that we'd had for a few months after Brian had died, before I'd really started looking into all the medical stuff.
Okay, so this is the HIV doctor's notes of a conversation he'd had with you.
Had with me, exactly, exactly. And in it he said, first of all, the note is titled HIV death. Okay, so on Brian's death certificate listed, number one, a form of pneumonia and a pseudo bowel obstruction, which are the classic things that happen when you're dying. And then under two underlying causes, it was Kaposi's sarcoma, HIV and severe frailty.
And he said in this note, while HIV and chaos are mentioned, his word, mentioned on his death certificate, they were not major players. And yes, he had kidney this and blah, blah, blah, blah, all of these illnesses, but they were not linked to HIV. And I thought, how the hell could they not be linked to HIV? And that's what I set out to find out.
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Chapter 7: What insights did Emily gain from reviewing Brian's medical records?
I mean, it just wore out. And the KS is still a bit of a bit of a puzzle. But and, you know, there is a lot of his HIV consultant or woman had said to me, well, yes, aging with HIV is something we're just starting to look at. And I thought, well, actually, people have been looking at this for a while. But Brian's generation had to grow old or older.
before doctors and scientists could actually see what was happening. Because as far back as 1996, a scientist had spotted these cells getting older very quickly, but that was under a microscope. So there's a big difference between cells under a microscope and a living body in front of you, ageing, and what's happening to them. And this has become...
Since Brian died, and not because he died, but because other people were kind of beginning to experience this, the clinic that he attended, they are now employing a frailty consultant, a geriatrician effectively. And the pharmaceutical companies are now looking for new drugs for Kaposi's sarcoma because it is emerging again in people of that generation.
Why have you decided to talk about this now?
I think I almost I felt I had to. Well, if you were thinking in musical terms, this would be a coda. You know, the end definitive point to something. So it's the end point of the last five years. Two years watching my brother die horribly with nobody able to tell me or tell him what was wrong and whether he would be better. And then three years of trying to find out why.
And I think I now know why. And I do see that change. Things will change. I mean, I was I was reluctant to do this as well, in the sense that and I was me who approached you and all of that. And I was kind of reluctant to do it because kind of I don't want to scare people either. You know, there was an ethical issue for me.
Last year, the HSE started running a campaign, You, Me and HIV, which gave a very modern, contemporary image, shall we say, to HIV, that it's not a big deal, that one pill a day and all of that. And I can perfectly understand why they were doing it. At the same time, when I would watch some of these ads, I wanted to throw a brick at the screen because it was...
So at odds with the way my brother had died. Now, it's a public health campaign. You know, they can't curate it for my particular circumstances, the circumstances of my brother. But I did speak with them and they were wonderful and they did listen to me and they did take on board what I was saying about the lack of nuance. You see, on the one hand, it was a difficult thing for them to do.
They're trying to... Encourage people to get tested, to take the taboo, to remove the taboo, to take the fear away. But by doing that, they almost kind of downplayed, you know, the reality of HIV. And it certainly ignored the reality of HIV for an older generation, the pioneers, if you like, you know. So, yeah.
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Chapter 8: Why does Emily feel compelled to share Brian's story now?
And I think that it is important for the sake of that generation of people who are also, as well, hugely psychologically traumatised by what they went through, watching all their friends die. And, you know, the way that they were treated in the media and perhaps in their own homes where they worked. And I think...
By their own families. Exactly.
So something is owed to them. You know, I'm not wearing a halo, but when Brian turned 60, I gave him a gift of a memoir writing course from Oxford University. And he'd started to write it. And in a way, you know, this might be the last chapter of that memoir.
Emily O'Reilly, thank you very much.
Thank you.
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