Shownotes
A leading HIV consultant who went from writing prescriptions to needing them in the summer of 2002 - and became the first person living with HIV to lead the British HIV Association.
Summary
Tristan Barber was born in Cornwall in 1975, took his A-levels at 16, and arrived in London in September 1992 as a gay man from a rural county where nobody was out. Medical school felt like a small homophobic village. London in the 90s did not. He went to clubs every night, nearly failed his studies from enjoying himself almost too much, and eventually landed his first job in sexual health and HIV at a busy East London clinic in 2002 - the year everything changed.
Towards the end of that rotation, Tristan got sick. A ten-day viral illness in the middle of summer. His GP prescribed antibiotics and didn't ask anything else. Tristan went for an HIV test himself, struggled to find a clinic where he didn't know anyone working, and bumped into an old colleague in the waiting room who asked why he was there. The test was positive. He enrolled in a seroconverter trial at Imperial College - four drugs for three months - and became rapidly undetectable. Then the trial required him to stop treatment, his viral load rebounded, and a small depression set in. That was his summer of 2002.
What followed was a career that took in research at Imperial, clinical trials recycling old drugs for people who had run out of options, an elective in San Francisco where HIV drugs were advertised on bus stops, and fieldwork in rural Nepal supporting doctors who were delivering HIV care with a manual and a telephone line. In 2018, he set up a dedicated HIV and ageing service at the Royal Free Hospital - the first of its kind - built around the idea that your birthday age and your HIV age are not the same thing.
He became the first person living with HIV to chair the British HIV Association, led the campaign to allow people with HIV to donate sperm and eggs, and helped change Civil Aviation Authority rules so commercial pilots with HIV could fly. He is clear-eyed about the mixed messaging in HIV medicine: one pill once a day does not mean it's sorted.
Key Moments
- [01:26] The summer of 2002 - starting a first job in HIV medicine at a busy East London clinic, and the ten-day illness that made him suspect something was wrong
- [03:23] Finding somewhere to test - the difficulty of getting an anonymous HIV test when you work in the field, and bumping into a colleague in the waiting room
- [04:18] The seroconverter trial - quadruple therapy at Imperial College, rapid undetectability, treatment interruption, viral rebound, and the deflation that followed
- [05:41] Shame and sex - why we can't shame people for having sex or for acquiring STIs, and the fact that most sexual activity globally is condomless
- [08:07] Cornwall to London - A-levels at 16, arriving in 1992, and the 90s gay scene: Love Muscle, Popstarz, and smoking in every pub
- [12:12] From Brighton to San Francisco - Martin Fisher as a leading light, HIV drugs advertised at bus stops in 1998, and a city still in shock
- [14:42] Coming back to HIV - leaving the field for A&E, thinking it was too obvious a career choice for a gay man, then realising it was the perfect fit
- [15:20] Two waves of optimism - 1996 and triple therapy, then the mid-2000s when drugs became well-tolerated and effective against resistant virus
- [19:14] Being your own field of expertise - the privilege and the complication of clinical literacy after diagnosis, and the newspaper articles his father left on the kitchen table
- [30:35] HIV and the ageing brain - Tristan's MD research into cognitive impairment, and the finding that most people on contemporary treatment do not have a direct HIV-related cognitive problem
- [32:59] HIV and ageing - the Royal Free service, the interplay of birthday age and HIV age, nursing homes where staff have never knowingly met a gay older person, and the 2025 HIV Action Plan's promise to address stigma in care settings
- [38:11] Mixed messaging - one pill a day doesn't mean it's sorted, and why even HIV professionals can minimise the lived experience of a lifelong condition
- [41:06] Law catching up with science - changing rules on sperm donation, commercial pilots, and the armed forces, and why criminalising HIV transmission perpetuates stigma
- [44:15] Nepal - two months in far western clinics, supporting doctors delivering HIV care in rural isolation
Dedication
Tristan remembers a young heterosexual patient who never fitted the model of HIV care, who couldn't take oral antiretroviral therapy because of the weight of her own self-stigma, and who once surprised his ward round team by jumping out of a cupboard in fancy dress. She lost her life to HIV.
About Dr Tristan Barber
Dr Tristan Barber is a consultant in sexual health and HIV at the Royal Free Hospital, London, where he runs a dedicated HIV and ageing service. He is the first person living with HIV to chair the British HIV Association. His MD research focused on HIV-associated neurocognitive impairment. He led successful campaigns to allow people with HIV to donate sperm and eggs and to permit commercial pilots with HIV to fly.
Resources
- British HIV Association (BHIVA)
- National AIDS Trust
- Terrence Higgins Trust
- The 2025–2030 UK HIV Action Plan
If you have been affected by the themes in this episode, support is available at tht.org.uk.
This podcast uses the following third-party services for analysis:
Podtrac - https://analytics.podtrac.com/privacy-policy-gdrp
Transcripts
Dan Hall
Welcome to 'HIV: The Morning After'. I'm Dan Hall. I'm a documentary producer and director. I've spent my entire adult life watching ignorance and prejudice play out around HIV. And frankly, I'm tired of it. And I'm sure many of you are too.
This podcast is an attempt to do something about that. By doing what I do best, interviewing people and letting them tell their own stories.
I can make these episodes, but I can't make people listen to them or find them on their algorithms. That beats down to you. Please rate, review and share 'HIV: The Morning After'.
Right then, let's get started.
::Dan Hall
is Doctor Tristan Barber. In: ::Dan Hall
Today, he is one of the UK's leading consultants and the first person living with HIV to ever lead the British HIV Association. This is a story about the reordering of a life. Tristan, welcome to 'HIV: The Morning After'.
::Tristan Barber
Thank you very much for having me.
::Dan Hall
we start with that summer of: ::Tristan Barber
What happened in: ::Tristan Barber
It was in the old days where we had a male floor and a female floor, which seems quite archaic now, but incredibly busy. And of course, seeing people who were anxious, worried, testing and treating them. On the same day, I was also undertaking, HIV work on the ward, which was at the old Bart site at the time.
::Tristan Barber
So I was in a show covering the out-of-hours service as a senior health officer for those who know old medical language, but still a junior doctor covering out-of-hours care for people with HIV, many of whom were late diagnosed very sick, quite complex patients, to care for. And, during that job, I became unwell towards the end of it myself.
::Tristan Barber
I was off work for about ten days with quite severe viral symptoms, and having a prolonged viral illness in the heat of the summer. I kind of knew that something was amiss. I remember seeing my GP who thought I had a bacterial sore throat infection, prescribed me antibiotics, and didn't ask me anything else about my life or risk factors, or for me, any testing for bloodborne viruses.
::Tristan Barber
And I subsequently went on to, seek an HIV test, which was reactive. It was very difficult for me at the time, even in my first sexual health and HIV job, to find somewhere where I could test and didn't know anyone who was working in that service. And sure enough, I bumped into an old colleague who was there, who asked me why I was there.
::Tristan Barber
Just as I was waiting for my positive result. And that stays in in my memory.
::Dan Hall
I have to say, that seems surprising that a medical professional would go. Why are you here?
::Tristan Barber
I think he was shocked to see me in the waiting room for some reason. And, my test was positive. I subsequently, enrolled in a in a clinical trial at Imperial College at Saint Mary's because I was very aware that I'd been recently infected or had recently acquired HIV. And, I went on to a trial for sera converters.
::Tristan Barber
ult to take at that point. In: ::Tristan Barber
And I think we were all very optimistic that positive things would come from that early intervention. In actual fact, that trial meant that you interrupted therapy. And of course, my viral load rebounded, to quite a high level. And it was at that point I felt a little bit depressed and a little bit sad, I guess because I'd been very actively engaged in seeking early treatment and participating in the clinical trial, and it felt like it had no real impacts.
::Tristan Barber
dy, but that was my summer of: ::Dan Hall
ss, Kristen, in the summer of: ::Dan Hall
What would you say to that?
::Tristan Barber
espite the fact that we're in: ::Tristan Barber
The gay population, certainly the gay male population in the early days of the HIV epidemic was some of the most rapid adopters, of condoms for sexual contact. In fact, condom uptake in game, bisexual men who have sex with men was far higher, in the late 80s and 90s than it was in heterosexual populations. But but nonetheless, we are all human.
::Tristan Barber
Sexual contact happens sometimes. It happens in the context of intoxication and with the best will in the world. Most people do not have, perfectly protected sex every time they have a sexual encounter, particularly not when they're in their, early 20s or, I've just moved, perhaps to a metropolitan area and, enjoying exploring life.
::Tristan Barber
So I would say that, things happen that are not always perfect. We now have better combination prevention approaches to HIV, prevention. So we have, of course, pre-exposure prophylaxis. We know that being undetectable on treatment means you cannot sexually transmit your virus. Would my story have been different had I, moved to London 25 years later when, prep was available, perhaps?
::Tristan Barber
I'm not sure. But I would say that we cannot shame people for having sex. We cannot shame people for acquiring sexually transmitted infections. And that includes blood borne viruses. Despite our best attempts to offer better prevention technologies.
::Dan Hall
I absolutely agree that we can't. And when I think back of every time that I've had unprotected sex, I'd say majority of those are because I was seeking intimacy and connectivity. And I don't think there's anything wrong with that.
::Tristan Barber
I would agree with you.
::Dan Hall
So then, Tristan, what was your journey that brought you to London?
::Tristan Barber
up in Cornwall. I was born in: ::Dan Hall
Just a step in that briefly, as most of our listeners are from outside the UK. Tristan should have been taking those exams two years later. So very precocious.
::Tristan Barber
I got to London in September: ::Tristan Barber
Coming from Cornwall. Again, for your listeners, this is a relatively rural area. At the time there wasn't a lot of diversity, all aspects of diversity, but particularly, in people who were open about not being heterosexual, and, moving to London seemed the obvious choice. It was quite interesting. Medical schools in London at the time were kind of standalone institutions.
::Tristan Barber
They weren't always part of a larger institution. And actually my first year at the medical school I chose felt like being in a small homophobic village, which wasn't dissimilar, to growing up, in Cornwall. I did, of course, venture out into London more widely. And I think demographically, in terms of the HIV epidemic, it was a very interesting time because whilst I wasn't, I was kind of too young to have been directly affected by people who died from HIV or indeed from Aids related complications.
::Tristan Barber
And, but even people that were just a few years older than me, I would say maybe five years older than me, had been directly affected. So it was easy to meet people in London, but quite difficult to form strong connections at that point. And I think some of that was because of this Gulf and experience, really just across those five years between people who'd seen people who died from HIV related problems and then people who were starting to realise, in the early 90s, although we didn't have triple combination therapy, the outlook for HIV was starting to look a little bit more optimistic.
::Dan Hall
And what was your London like? What was it like for you? Because I lived there all my life. I was born here, so I'm always interested to know what did the city seem like to people who who come into it? Whittington, like.
::Tristan Barber
Wow, gosh, London in the 90s. It was hedonistic. It was exciting. It was fun. It was probably dirtier. I mean, I think we're talking about a time when, you know, smoking in pubs was still allowed, smoking in bars was still allowed. Certainly smoking in nightclubs was allowed. I remember, you know, if you went to the pub after studying the end of a day, you'd need to wash your clothes from the cigarette smoke that was pervasive.
::Tristan Barber
I remember that very much. I remember the tubes being the tubes had a the underground system in London had a very distinctive smell. And, it was a really fun time. I mean, I think in many ways my social life, I was studying hard. My social life became, quite busy, and I was certainly making the most of London at the time.
::Tristan Barber
I actually remember thinking, I wasn't sure I'd complete my medical studies successfully if I stayed in London because I was enjoying my social life so much.
::Dan Hall
Well, we had pop stars, didn't we? We had such amazing clubs, like pop stars, which I tried to make. Not.
::Tristan Barber
Yeah, we had love muscle.
::Dan Hall
It's to me like the London gay see now seems so monocultural compared to what we had in the 90s. Yeah.
::Tristan Barber
I mean, you could go out every night in the 90s. There was something on every night of the week.
::Dan Hall
What were some of your first medical experiences with the virus?
::Tristan Barber
I had a really interesting time after graduation. My first job, after graduation as a doctor, was in Brighton, and I met more people in six months of working in Brighton that I've stayed in touch with for life than I met probably in six years of medical school. I've got some very good friends from medical school, but I met a lot of people that I really bonded with in Brighton.
::Tristan Barber
I was introduced by my first consultant, Doctor Nicky Gainsborough. I was introduced to, professor or then Doctor Martin Fisher, who sadly died just over ten years ago. But Martin was a real leading light in HIV. He was a fantastic individual who was active in research as well as clinical care. And I got to know Martin a lot better later in my career when I was working in the sexual health, and HIV space, I.
::Tristan Barber
elective in San Francisco in: ::Tristan Barber
ke when I'd come to London in: ::Tristan Barber
So, again, I met some people in San Francisco. It wasn't an easy atmosphere, I think, to make, good friends. And at that time, although I did enjoy my experience. And so if we flip back to Brighton. Moving on, I then thought I wanted to do something more acute than HIV and sexual health. In many ways, I thought it was actually too obvious a career choice for a gay man.
::Tristan Barber
And I wanted to do something else. And so, worked a lot in accident and emergency. Really enjoyed that. And, then applied for a training scheme and had a six month gap before my training scheme, which is when I got that sexual health and HIV job. So I kind of went away from HIV and sexual health for a little while, and then HIV and sexual health found me, again.
::Tristan Barber
And once I was in that environment, I realised I had been avoiding it. But actually it was the perfect fit.
::Dan Hall
And I'm guessing across this point you must have gone from seeing the reports. The medical reports go from basically palliative care into life management.
::Tristan Barber
eah, it was a dramatic shift.: ::Tristan Barber
It was often multiple pills a day. Many people who'd been treated in the early 90s had acquired resistance to the treatment they'd been given. That wasn't strong enough, essentially, to be effective. And so they had quite difficult to treat virus. And so the early years of triple therapy, there was a lot of optimism, but also there was a lot of toxicity and a lot of people struggled to take treatment well.
::Tristan Barber
And so when we got to about: ::Tristan Barber
d part of that decade, around: ::Tristan Barber
it was really in that kind of: ::Tristan Barber
So first step of optimism: ::Dan Hall
And I think that reticence makes a lot of sense, because certainly speaking to a lot of guests who people were bruised by the Concorde trial, the AZT trials. Yeah. So, you know, there was this I remember this dual narrative going on where people were fighting to get access to AZT, thinking it was going to be a miracle drug, that it was being withheld from pharma and it was going to save everyone's lives.
::Dan Hall
And frankly, most of the people I've guested on the show who've come across the Concorde trial seem to attribute the living today to the fact that they either didn't go on the trial at all, or came off a very early when it had hideous side effects on them.
::Tristan Barber
You've absolutely taken the words out of my mouth. The people I look after today say they survived because they didn't take AZT as a single agent. I think we have to pay tribute to the people that participated in those trials because we learned so much, from them. But of course, people could have life threatening anaemia from monotherapy AZT.
::Tristan Barber
That would mean they were transfusion dependent. And this was an incredibly dark time, for people who were watching their friends who'd fought to get these drugs become so sick, on suboptimal therapy.
::Dan Hall
Now, then, from a professional point of view, you're in a rather curious space when you test positive and realise that you're living with HIV and that, of course, you have a lot of the personal issues and personal concerns that anybody who received that diagnosis would have. But was there also an element of professional curiosity because you had sort of become your own field of expertise?
::Tristan Barber
Yeah, I think that's a really good point. I mean, I think growing up and realising you were a gay man in the 80s and, early 90s, HIV was constantly there as a potential fear. I certainly remember my father leaving newspaper articles, on the table in the kitchen about Aids when I was a teenager, which I really don't think it really wasn't done in a malicious way.
::Tristan Barber
at I received my diagnosis in: ::Tristan Barber
My basic needs were always met. So there's many aspects of privilege that I have, in terms of my own journey with HIV. But nonetheless, I think it was very fascinating, as you say, to be on the receiving end to, and to participate in a trial and to look at the outcomes of that trial. And I do think many people have life experiences they bring to their work as a doctor.
::Tristan Barber
But I do think as someone living with HIV, it does give you huge insight into some of the challenges that people living with HIV face. So in terms of lived experience, HIV has become, of course, only part of my personal life. It's also part of my professional life. In many ways, it is my life, and I know not solely.
::Tristan Barber
end new HIV transmissions by: ::Tristan Barber
So to have seen the first case of Aids presented, to have looked into the history of HIV, to have grown up with that fear and threat, for that fear and threat, to have become something that's controllable and manageable, to deliver HIV care and research, and now to be looking towards efforts to end, the HIV epidemic, perhaps not being helped by global cuts in funding at the moment, but nonetheless, to have that as an aspiration and something that we actually have the tools to be able to achieve is actually, I think, an incredible privilege.
::Tristan Barber
And some of the people I've met through HIV personally and professionally, some of the relationships I've had established through HIV, personally and professionally, have been some of the strongest and most important ones in my life. So it's difficult. The external perception of HIV is often not the reality that people live. I understand why many people struggle with, an HIV diagnosis.
::Tristan Barber
Perhaps I have the privilege to say that HIV for me has often given me, huge gifts and opportunities. And that's not to not acknowledge the the downsides and the negative aspects. That, of course, HIV gives to someone both personally, but also, thinking about other people who experience HIV differently. But nonetheless, for me personally, the opportunity to work in a fantastic career with people, I love to be connected globally, you know, is a real opportunity and privilege.
::Tristan Barber
And I have to say, for me personally, I've been very lucky in that it's not necessarily impacted me in some of the negative ways that it impacts others.
::Dan Hall
You and I are of a similar age, and I think that we have lived through a really fascinating period. I still can't quite believe it. Every morning when I type my prep, I still can't believe that that I'm just taking this little pill. Yep. Now. And and it's and I was born in 73 and so I'm similar age.
::Tristan Barber
You're much older than me.
::Dan Hall
When were you born again.
::Tristan Barber
There's 75.
::Dan Hall
Oh, sorry, I thought no.
::Tristan Barber
No joking. That teasing you. I'm teasing us.
::Dan Hall
Nasty man. But I, I remember, I can't even remember exactly where I was, but it was around the time of the Olympics. I remember thinking, fuck this. I'm so bored with condoms. I don't want to do this. I'm starting to. And I know I wasn't supposed to, but starting to use PAP as a form of prevention, and it just meant that I didn't have a lot of sex, but it.
::Dan Hall
I just felt my, my patience had worn out. Frankly. Yeah. I was bored having sex that I wasn't enjoying. And I wanted the intimacy of bareback ING and and it was when I think about even, even that seemed like a miracle. And then when prep came along and I was it for the first three years, the was here we were buying bits from were buying from India.
::Dan Hall
I remember doctors handing out a website where, yeah, where it was like a trusted website to buy it and it just seems like a miracle. It seems like medicine has has just taken us on this incredible journey.
::Tristan Barber
There was I want prep now. Of course, there are other websites. People like Greg Owen, who's very active in the field at the time. And yeah, Dean Street was, really led the way in terms of allowing people who were attending an NHS service book, signposting them to places where they could access prep before it was NHS licensed and need full credit for that.
::Tristan Barber
I think, what you reminded me of done is a bit like a bit like me, which is that, you know, I've become two sides of the coin, if you like, but you did exactly the same thing you took. And this is where medical literacy and a little bit of knowhow really, really helps. But, you know, you took matters into your own hands.
::Tristan Barber
You were sick of waiting. We know that people's mental health, impacts on the type of sex they're having or they're seeking, but vice versa. The type of sex you're having can really improve or not your mental health, again, depending on what kind of sex we're having. But, you know, you took matters into your own hands. You thought, well, this kind of makes sense to me, surely that, you know, I can use these drugs in a pragmatic way that allows me to live my life in a way that's more positive for me.
::Tristan Barber
So also, with your prep journey, you've experienced something someone who didn't have access to that technology, who had access to it at a time when it wasn't licensed as Prep, but you were able to use Pep in a pragmatic way. And now someone who's able to access NHS funded pre-exposure prophylaxis. So really incredible journey as well.
::Dan Hall
And I remember you have literally just broken this memory. I remember my one of my buddies who lived just down the road from in Highgate. We would literally go. I was always very lucky with PAP. It had no effect on me, but it had a bit of an effect on him. It would not be the one. He wouldn't feel fantastic for a few days anyway.
::Dan Hall
And literally we would plan it and he would go, right, okay, well I've, you know, arranged my work so I can be a bit out of sorts next week now. And, and it was that planned. Yeah. And I'd completely forgotten that memory. And I remember having these conversations with him where you go. Right. You know next was going to be a light week.
::Dan Hall
So do you want to come round and then and we'd and I remember one time we went down to Dean Street, together to go and get our pap.
::Dan Hall
So then you said in your notes, that haven't got your diagnosis, there was a stage of unravelling and then reordering. What was the reordering that you did?
::Tristan Barber
I think when I think about my life retrospectively, I think the I, my, my medical degree, I, I enjoyed I enjoyed most of my medical degree, after I'd got off the starting blocks from year one, the, the bit where I unravelled a bit was after I'd graduated, I think. And I say this to medical students now, you don't need to come from a medical family to do well at medical school, but people from a medical background, I was not from a medical background.
::Tristan Barber
They know how to navigate the postgraduate space very well. And postgraduate training in medicine is a bit complicated. And also, you know, people are telling you you've got to do more exams. The thought for me of more exams, having done a six year degree, was not a positive one. And in many ways, you need to get those exams done as soon as you can after graduation because your knowledge is still fresh.
::Tristan Barber
It makes a lot of sense there. There are sort of structural delays to when you can do them within your training, but I advise people now to get them out of the way as soon as possible. I didn't have that advice and so I spent, I would say, the first five, 6 or 7 years after graduation, a little bit lost.
::Tristan Barber
But when I look back on it, in retrospect, the important work I was doing in that time period was solidifying, building my personal life, which I think is it's fine to invest some time in your personal life as well as your professional one. And so I don't feel negative about that time point. Now. I could at the time I might have felt like I was unravelling a bit, and I think at work I wasn't very I obviously was working hard when I was at work, but I didn't have a clear direction of travel.
::Tristan Barber
I didn't have a clear, structure to what I was doing with work. And in some ways, those years were a bit wasted professionally. But I don't think anything in life is truly wasted on investing in my personal time was always important to me and has also been important to me ultimately professionally, because of course, feeling comfortable as a gay man, exploring gay spaces, being able to then talk to people who attend sexual health clinics and HIV services.
::Tristan Barber
Not that I see gay men exclusively, but being able to talk to people in a way that makes them feel comfortable about those lived experiences is, I think, a very positive one.
::Dan Hall
Absolutely. There is nothing more likely to make you clam up than saying glassy eyed confusion. Yeah. When you're talking about your life, this happens to all of us.
::Tristan Barber
got my the exams I needed in: ::Tristan Barber
And so the professional bit for me came together a bit late. But I think that time spent making sure that as a person I was feeling okay about life, was time well spent.
::Dan Hall
So that interested, can you tell us about your MD and how that plugs into your story with HIV?
::Tristan Barber
f study towards my MD between: ::Tristan Barber
So kind of dementia type illness in people living with HIV. And we constructed a number of studies to look at best ways to screen for cognitive impairment in people living with HIV. Also, whether you could intervene with particular drugs to make cognitive function improve. And so that was a dedicated two years of time spent looking into cognitive issues and people with HIV in quite a lot of depth.
::Tristan Barber
And I really enjoyed it. It really not only helped me, design research trials, but also it really, impressed me that when you included people living with HIV in the design of those trials and you consulted people living with HIV, you improve the trial design very strongly. I think cognitive impairment is an interesting one. What we found was that most people with HIV, most people living with HIV, do not have a direct HIV related cognitive problem.
::Tristan Barber
Of course, as people with HIV now get older, they may experience, dementias that other people experience, maybe sometimes earlier, maybe more severely. But whether HIV that is managed in a contemporary way with early antiretroviral therapy really affects the cognitive function of most people, I think is, not so likely to be true.
::Dan Hall
And I think we're entering a fascinating stage now in HIV treatment with the fact that people are now heading towards the final chapters of their lives because these medicines have kept them alive. But, you know, we've had guests on here who have developed neuropathy. There's all sorts of, conditions, not to mention maybe having to go into retirement homes with members of staff who are, pretty crappy about HIV or pretty crap about.
::Dan Hall
Yeah, great people. What do you feel are some of the main points that we need to be looking out for when thinking about caring for people's over 50, over 60 living with HIV?
::Tristan Barber
of specialist interest, since: ::Tristan Barber
And the service is now up and running again. I work very closely with a colleague, a geriatrician called Hal Jones, who really delivers that service himself entirely now with HIV input from me. But it's been that we've spent a lot of time looking at issues that specifically affect people with HIV as they get older. We know that people may experience a number of premature co-morbidities and things like cardiovascular disease, kidney disease, bone disease, but also they may just develop frailty syndromes a little bit earlier.
::Tristan Barber
Now, for me, this is an interplay not only of someone's age on their birthday, but also their HIV age, because you can have been born with HIV, meaning that by the time you're 40, your birthday age doesn't look that old, but your HIV age is four decades, which is an awfully long time. We can be 80 and have been diagnosed with HIV five years ago, which means your birth age is high, but your HIV age is actually quite small.
::Tristan Barber
So there's an interplay, I think, of those two factors your best age and your HIV age. In addition, I think we really need to start thinking about things that happen outside of hospitals, outside of dedicated clinics. And you're absolutely right to mention social care to mention, nursing homes, residential homes. And these are places where we really need to get stigma training, HIV training in quite urgently, as well as, training around managing older LGBTQ+ individuals.
::Tristan Barber
I was at a meeting, we have a network called chain UK, which is a network of people providing aged care for people with HIV in UK, and Ireland. And one of the geriatricians, speaking of that meeting, said he spoke to his colleagues, who work in elderly care about the work we're doing. And they said, oh, I've never seen a gay older person, which is statistically I mean, it just cannot be the case.
::Tristan Barber
It just means they're obviously not asking the questions or not thinking about, an inclusive approach to, to sexuality.
::Dan Hall
Where do they think we we are.
::Tristan Barber
We just don't get old, right?
::Dan Hall
No, it we just lock ourselves away at the Golden Girl marathons and just never leave.
::Tristan Barber
Oh, it's only us. And.
::Tristan Barber
So there are a lot of things we need to do to look at co-morbidities. People get older. We also need support people with end of life planning. You know, many people have not thought about wills or about pensions, or about where they might spend their later years. So these are all exciting opportunity. There are so exciting opportunities for education, and better inclusivity.
::Tristan Barber
launched on world Aids day in: ::Tristan Barber
But the fourth and fifth pillars, if you like, of the HIV action plan, are thrive and collaborate. And what I really like about thrive is thrive is looking at increasing quality of life for all people living with HIV, across the life course. And I think that's where we can really step in, both as a unit here at the Royal Free, where we're specialising in HIV and ageing, but also, as the British HIV Association, to think about how we improve quality of life, how we develop better care models for older people living with HIV, how we support people with better coordination of care, particularly when it becomes very complex, and also thinking about
::Tristan Barber
what we can do in some of those end of life scenarios and how we can better support people there. The Department of Health in the UK has promised, as part of the action plan, to look at HIV education and stigma reduction in nursing and care home settings. It's a little bit difficult because there isn't a very clear network of those institutions, but we really need to do that work because, as you say, it's often described as people having to go back in the closet when they go into those settings, whether that's about their sexuality, whether it's about their HIV status.
::Tristan Barber
And we need to make sure that that is not the case moving forwards.
::Tristan Barber
I think in addition to sexuality, I think there's also this, you know, I think we're guilty of it in the HIV professional spaces is mixed messaging. Always which and of course, the both of these statements are going to be true. Right. But, you know, HIV is treatable. It's manageable. You can have a normal life expectancy is true.
::Tristan Barber
Know your status, get an HIV test. All true. But also for some people, HIV is a highly stigmatising, illness that, has complex treatment, and may predispose you to be at higher risk of certain co-morbidities as you age. And for some people, it may take off some years is good life expectancy. You know, in HIV clinics we pick up on people's other diagnoses really early.
::Tristan Barber
So they're usually well managed. But I often feel that that HIV bit can be minimised and could be minimised by other health care professionals because they're like, oh yeah, HIV one pill once a day it's all sorted, you equals you. And you're like, yeah, but then I, you know, I go to a conference, I read some data that says, you know, if you started treatment with a CD4 count that was below 200, you might lose 5 to 10 years of life expectancy.
::Tristan Barber
I'm making this up. This is not facts, right? I'm just using it as an example. But those kind of posters are presented and you then come back to your own job in an HIV service, in a place where people are specialists, where people should be aware of these kind of data and it's overlooked, it's often overlooked. So people feel like, oh, you're HIV is controlled, you're well, you've got a normal life expectancy.
::Tristan Barber
You think, did you just sit through that presentation? I sat through where they said that some people will have a reduced life expectancy. And do you not understand that the pressure that puts on me to maybe want to achieve things a bit sooner, achieve financial security a bit sooner? And it can be those concerns can be really minimised even within an HIV environment.
::Tristan Barber
And so what I worry about when we think about people, even people who've not felt highly stigmatised by their HIV, and if they develop some problems as they get older, they then go to see their GP or they're in a nursing home and people go, oh, your virus is suppressed. HIV is the least of your concerns. And they're not understanding that lived experience of someone who has carried that with them their whole lives, even if for most of it they've not felt stigmatised, they've not felt concerned, they've not felt worried.
::Tristan Barber
The experience of living with a lifelong condition can change as you get older, and there needs to be some acknowledgement that it's not just one pill once a day and it's sorted. We're not eradicating the HIV, you're still living with HIV and your experience of that may evolve with time.
::Dan Hall
So then in episode two of series two, I spoke to Alexander Teves, the sex writer and author, and he's from America. And when he talked to me, he was really clear about how in parts of the U.S., people living with HIV can still face criminalisation around disclosure, transmission, even intent, and that they're the laws basically like miles behind any medical reality.
::Dan Hall
And I wanted to if we could bring that conversation to home and ask you what the current legal issues are of people living with HIV here in the UK, and do you feel that sort of law, stigma and science are clashing?
::Tristan Barber
I think we're quite lucky in the UK for the most part, in that we have seen huge advances in making sure that legislation catches up with the science. We've seen the removal of any restriction for people living with HIV, of serving in our armed forces, and myself and Doctor Nicola mackey spent many years, campaigning to change the legislation around donation of sperm or eggs from people living with HIV who have an undetectable HIV viral load.
::Tristan Barber
We did that in the end with the support of the National Aids trust. I think it's fair to say that some of the challenges we faced, which are a little bit analogous to what you're describing around criminal transmission. With that, people are very worried about defending the woman, protecting a woman who would be not living with HIV.
::Tristan Barber
Should a man living with HIV want to donate sperm. And we really had to push back against that and just say we're we're not talking about forced insemination here. We're talking about an adult who can consent based on the science, can be educated about the benefits, potential risks, and can make an informed decision about whether or not they wish to proceed.
::Tristan Barber
And it's interesting to me that people often want to take the agency away from, someone else from making an informed decision. And I think in terms of the criminal transmission piece, we know that laws around criminalising HIV transmission a tremendously unhelpful they perpetuate stigma, and they do not ultimately, help end the HIV epidemic. We have nonetheless seen, a few reasonably high profile cases recently in the UK discussing criminal transmission.
::Tristan Barber
And when I say perpetuate stigma, you instantly see that the person living with HIV is, you know, made out to be bad or to have done something wrong, not commenting on individual specific cases. But of course, we have legislation around sexual assault. That's something completely different when you're talking about consensual sex and disclosure or non-disclosure of information.
::Tristan Barber
Of course, there there can be very complex factors that play into what happens there, including someone's mental health, well-being at the time, and so on. But I do think, we have made huge progress in the UK around changing laws so that we are keeping up with the science. We are one of the first countries in the world to make many of those changes, including around sperm and egg donation.
::Tristan Barber
We also, change the law with the Civil Aviation Authority so that commercial pilots with HIV could continue to fly. And there are many of the, aspects of continuing HIV stigma or restriction, where we are continuing to challenge and hope to change things in the future.
::Dan Hall
Now then, Tristan, before we enter into the final stages of this episode, can I ask you to tell us a little bit about the work that you've done in Nepal? Because it looks incredible. From the research that I was doing, could you share a bit about that?
::Tristan Barber
So I think one of the great things HIV obviously in the UK is not fixed. It's not perfect. We've still got a lot of work to do, but one of the fantastic things about working in the HIV space is being able to have global connections. And in many countries, the epidemic is worse still. And so continuing to support people with educational exchanges, I think can be really helpful.
::Tristan Barber
country environments. And in: ::Tristan Barber
Sometimes they were delivering HIV care on their own, with advice and support, from a book or a manual with other people supporting them on the end of a telephone. But they were able to actually sit in clinics with people in these remote, rural locations and support them to improve not only their HIV knowledge, but also to deliver HIV care was just incredible.
::Tristan Barber
Some of the real life stories we heard from the staff, as well as from the patients, were just incredibly moving. So that was just a really, really wonderful experience. And I maintain connections with the health care teams of voluntary sector organisations, there on the ground in Nepal for many years.
::Dan Hall
And have they managed to stay open following the cuts currently?
::Tristan Barber
Yes. So I am supporting some individuals and groups of people living with HIV whose clinics have closed. Most of those individuals are in African countries of high HIV prevalence, where some of the cuts have led to clinic closures as incredibly difficult situation on the ground in those areas.
::Dan Hall
So the interesting we're coming towards the end of the show now, and this is the point at which we pause and have a moment of remembrance for people who have been lost. And this is where I would like to ask you, who would you like us to spend a moment or two with you now remembering.
::Tristan Barber
I would like us to particularly remember, a patient of mine who moved me profoundly. She was a young heterosexual, woman who felt that she never really fitted in to the model of HIV or to HIV care, HIV services. She consequently struggled to take any form of HIV medication. This was before injectable HIV medication was available.
::Tristan Barber
She shared an awful lot of laughter and hilarity, as well as tragedy, not only with me, but also with the teams I worked with with her over many years, including on one of the final ward rounds where she surprised the team by jumping out of a cupboard in a fancy dress. But but unfortunately, because she was unable to take oral antiretroviral therapy because she experienced so much self stigma, she did ultimately lose her life to HIV.
::Tristan Barber
And she stays in my memory as a patient who has moved me profoundly over the years, I have the privilege to take care of her. So that's who I would like us to remember.
::Dan Hall
So the very final question now, Tristan, if you could write a postcard to the world, what would it say?
::Tristan Barber
HIV is not a death sentence, and knowing your HIV status should be part of routine health care. So test.
::Dan Hall
Doctor Tristan Baba, thank you so much for being a guest here on HIV the morning after. It's been wonderful to have you.
::Tristan Barber
It's been delightful. Thank you very much indeed.
::Dan Hall
For.
::Dan Hall
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And remember, if you encounter HIV stigma and a bar, call it out. If you encounter it at work, call it out. If you encounter it online, call it out. Because if you don't, you're part of the problem.
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