Good evening.

Welcome to the HIV Hour on Brighton and Hove 97.2 FM and on the ABC+ radio.

And don't forget, there's always our podcast here. You can listen to after the show it has aired.

I'm delighted to be joined in the studio this evening by the lovely Sue.

Hello, Sue.

How are you?

Good evening.

How are are you?

I'm good, thank you.

Yeah, you in the middle of dodging rainstorms.

I know.

What's going on with the weather?

I know, Same old English story.

What's going on with the weather?

Literally, Bangk they awesome.

Yeah, yeah.

We're changed.

Everything changed.

Pack your summer shorts away.

Get your long johns out and there we go.

I do love warm on.

Oh, you.

Shame on no.

I didn't have trousers on top, but They were comfy and I thought they were jogging bottoms and put them all I realised they were a little bit skin huggy.

Anyway, you't have about that.

You were listening to the beautiful South singing Rotterdam or anywhere, and in fact, the tunes that we're going to be playing you tonight have got a holiday theme to them, because they've all based on the places that's the swimming group from peer action have been to this year. There's the flavours of France and Canada and the Netherlands and Italy, amongst that.

And I'll tell you more about Per action later, because we've got some fantastic news that anyone doesn't know about peer action, you're going to learn a bit more about it.

So as this show episode has got a little bit of a theme to it.

So we're going to be talking about activism.

So in in particular, obviously, HIV activism , and the other little side theme we're going to have is about research and some studies that are going on.

So activism, what is HIV activism?

So what would you say?

An actress is.

Okay, an activist can be comes in all shapes and sizes.

What I mean is you don't have to get on a massive soapbox in front of millions of people in front of millions and people and say something or do something.

Activism can be quite small within your own community.

You're speaking out in your own community.

And that could be very small.

Sharing knowledge of what you know with someone else.

You're actively seeking justice for someone else.

You could be called an activist.

So for me, an activist is all shapes and sizes, as in what you can do to be in that, I mean, I know some amazing activists, that do amazing, massive things.

But I also know some people that do smaller things within their own community, David.

Yes, I I couldn't have put it better myself, really.

Yeah, so an activist, I think it's somebody that really talked about their HIV, the fact that they're living with HIV publicly, really, because it's just, because HIV is it's a chronic medical condition, as we know.

It's once you have it for life and it is private information.

And you don't have to talk about it at all. When people understandably quite private about certain medical editions that they have.

But in order to sort of break down the stigma, and we know stigma affects people's understanding of wanting to test and how to access services.

Yeah, just talking about it, it goes a great deal to dealing with the fear and stigma about it, doesn't it?

Absolutely.

And share in the knowledge, and I've always got this key, you know, shown this, you know, knowledge is power, knowledge of information, you know, given some that extra information to empower themselves, not necessarily to be an activist themselves, but to give them reassurance and understanding that they're not going to die from HRIV, that they can positively live a long and healthy life.

But sharing that information with someone, you know, it was just absolutely key.

Yeah, it's shared lived experience, isn't it?

It's , you know, just making other people realise that they're not alone.

So, you know, if you've been through an HIV test or you're going for an HIV test, you're just knowing that somebody else can talk to you about it and you know, just to reassure you about things.

It's quite natural for humans to have anxieties about anything in particular, but to just to make someone with lived experience in any field is really val.

It's the unknown.

It's the unknown about what's HI going to be like for me?

You know, what's going to happen?

I've heard these stories, you know, I'm talking about someone that's maybe newly diagnosed.

I'm maybe going for that HIV test for the very first time and thinking, oh my goodness, what happens if what's my life going to be like?

I've heard these stories.

I've heard heard these misconceptions and it gets built up, you know, but just getting that clear understanding, you know, really does help.

Yeah, great.

I know yeah, again, so much agreement today.

Oh, gosh, I I'm sure it's not going to last.

No. , you said that, you, we can have sort of very small acts of kindness on activism, but we also have very great results of activism.

So, you know, a lot of the charities that we enjoy receiving service from, such as the Charitan's Trust or the Tssex Beacon or lunch Positive, they have all been created from grassroots initiative, from the community, from activists, getting together and saying, we can make a difference here.

We can change things.

So, you know, we don't have to accept the status quo.

If we want better services, it's up to us to say what we need and to help steer people to deliver those services.

So I don't know.

I mean, turntakers, trust I mean, you work for Tertakers Trust.

I do. Amazing organ.

Yeah, and to be quite honest I'm not sure many people understand that the actual depth of what we do, you know, with there's so many different layers of work we do within the community, and within, you know, Brighton and Hope, the of services, we can deliver and help and support people, you know, in all the communities we help and support yeah.'t the testing, isn't there?

There's a test testing services that, you know, the drop in centres, you know, we do a lot of chem sex training in Brighton and Hopeful communities and organisations.

We do well, you know, we've got the welfare, which we can support you going through PIP applications and housing and that sort of thing.

We got the HRV prevention team that go into the balls at night, you know, how hand and that condoms, hand and that information.

We've got the, you know, the lived experienced speakers that go into our local schools and talk about what HRV is like today and how and, you know, empowering the young people of today's generation and the future generations, that is a good idea to test and know your status.

So, oh, gosh, you know, the endless list of things that we do, can we have an amazing counselling system, you know?

So, yeah, but, you know, anyone can connect to the towns he can just just go on our website, you know, call in at the office if you want some information..

B right in the centre of Brighton.

So just for listeners that may be new to the show or maybe don't know much about you, what's your job title at the Parent Against trust?

Okay, so so my jobr has changed throughout the year, so I am one of the lived experienced programme coordinators.

So basically, David, I manage people who all live with HIV and we go into organisations, we go into schools and colleges and we talk about our lived experience to empower people about what HIV is like now.

So, you know, through our stories and our journeys, we're trying to create a stigma-free city, a stigma-free world, if we want to extendend that.

So we do that by talking about what's happened to us, how we manage HIV, how we manage to overcome some of the stigma that has affected us affected our lives.

I've heard many, many of the speakers.

I would say that they are all activists. In their own rights.

And some like I said, some do smaller things, some do massive things that blow blow my mind away, to be quite honest.

But as I say, you don't have to stand on in a massive soapbox to get your voice that you can do so small, you know, yeah.

Should we have another song?

Should we?

Go on, go on, let's have another song.

So I'm going to choose.

This one is Mambo Italiano from V Shaft.

Wow, what a song that was so..

I was Jigging aitre there, David. Different voices of it versions of it.

So that was Mambo Italiano by Shaft .

Shaft as Joshua Skes.

Shaft.

Yeah, he's.

Anyway, greetings to Josh, Philip, and Stephen, who copy with us tonight, but we send them our love.

Right, what should she talking about now?

So Stephen has that?

She sent us a a great audio clip.

So Stephen has an activist hero, an HIV activist hero, called Pedro Zamora, who inspired Stephen to become an act activist .

So should we have a listen to that audio now?

Right.

Come aboard, sister.

Right, dear Refo.

Hey, everybody, welcome back to the HIV Hour at 97.2 FM and on DAB radio and podcast.

So I just wanted to do a piece on our advocacy and tell you a bit about an advocate that was a big inspiration to me.

I think the majority of current advocates would see that there's been another advocate that has inspired them to tell their story.

For me, there has been many, but the one that made the most impact was Pedro Zamora, and I'd love to tell you more about him.

Pedro Pablo Zamora Diaz was born in February 1972 in Havana, Cuba.

By the time he was eight years old, he was forced to to leave Cuba due to the revolution, and this meant leaving behind four of his older brothers and one older sister .

Pedro and his parents and one sister and brother crossed the water and headed to Miami, Florida to start a new life.

Pedro lost his mother to cancer when he was only 13 and a year later came out to his family, admitting that he had his very first boyfriend.

I's awareness was rising in America, but there was no information being taught in schools, so Pedro was not educated on this at all.

When Pedro was 17, he donated blood and was called back for further tests as his blood had shown unusual readings. Still age 17, Pedro received the news that he was HIV positive.

Pedro and his family were heartbroken and Pedro's one wish was to graduate from high school before he died.

By the time he was 18 and after he'd graduated, he was working for a number of HIV organisations, learning about what HIV AIDS was and how to live with it and make the most of whatever time he might have left.

Next, Pedro started telling his story in the hope that he could educate others, especially young people about how to prevent them becoming HIV positive.

Over the next few years, Pedro had spoken hundreds of times to schools, churches, on TV shows like Donahue and Oprah.

And then on July 12, 1993, he testified before the United States Congress , arguing for a more explicit HIV AIDS educational programmes, saying if you want to reach me as a young man, especially a young gay man of colour, then you you need to give me the information in a language and vocabulary that I can understand and relate to.

Later in 1993, Pedro applied to be on the TV show The Real World, San Francisco.

He was honest with the producers about his status, but said that he wanted to be able to reach so many more people than he could by doing his talks.

Six months later, he was on the show, having beat 25,000 other applicants on February 12, 1994 Pedro and six other housemates moved into the real house apartment in Russian Hill, San Francisco.

The other housemates were told that someone in the house was living with HIV, but did not disclose who it was.

Pedro did not like take long to share that it was him who was living with HIV and immediately started educating them and and tried to ease any concerns and fears that they might have.

This was not always easy, and Pedro often felt tired and run down by always being the educator, but he never never let this stop him.

Whilst in the real world house, he met Sean Sassa and they started dating.

A few months later, Sean proposed to Pedroro and they exchanged vows and had a commitment ceremony in the real world house.

They made TV history by being the first same sex commitment on TV.

Midway through filming, Pedro started to become unwell.

His health declined very quickly, and it's believed that Pedro knew that his time was coming to an end.

He spoke with the producers on the show and made them promise to tell his story to the end.

Cathmates often covered for him in the weekly catch-ups as he was often too tired and unwell to take part in them.

In June 1994, the real world started airing each week .

By this time, Pedro had a number of hospital admissions with pneumonia, night sweats, fatigue, and other issues.

In August, Pedro checked into St.

Vincent's Hospital in New York City and was diagnosed withxicoplasmosis , which caused him to develop brain lesions, headaches, and confusion.

Pedro's T cell count at the time was 32, and he was getting given three to four months to live.

On September 3, he was flown home to Miami to be closer to his husband and family.

At that time, the then then President Bill Clinton telephoned Pedro to say thank you for all the amazing work he had done to educate and inform people living with the HIV Pedro had always made it clear to his family that he did not want to be kept alive by artificial means as having gone through this with his mother, he knew how painful it was and he wanted to spaceare his family going through this again once he became unresponsive, Pedro's family honoured his wishes and on November 11, 1994 at the age of 22 Pedro died .

This was only hours after the final episode of the Real World San Francisco aired.

You can probably hear that that writing this peace still fills me with emotion. 22 years was not enough.

Pedro was born in the same year as me and the same month so he would have been 53 years old now and I can't help thinking what more he could have done but saying that, I know that he fitted in a lifetime of advocacy to his 22 years and every time I stand up to tell my story, I know I'm doing it because of people like Pedro who showed me that sharing can change lives like Pedro changed mine.

Thanks, everybody.

Catch you later.

97.2 FM.

Radio reverb.

Wow.

Yeah, it's always wiring.

I mean, you.

And Steven himself is one of my heroes.

Yes.

And that has an actual Because what he talks about in his show, Shadow Dreamer is is shocking what he's been through, but how he's turned his life around to not be sort of sort of driven by the sort of misfortunes that that he's had to suffer an injury.

So not every activist has a dark story or a sad story.

No, no..

Some, you know, you know, but they all seem to sort of have an optimism, don't they do?

Of course, you know, it's coming out It' coming out of the dark and into the light, how I see it.

Sue, I've got to admit this, but you are one of my HIV activists.

That's you.

Yeah, yeah.

I mean, how long have you been speaking as a, it used to be called positive voices.

It used to be called positive voices.

It's called a lived experience programme now.

I mean, I've been , I mean, I've been with the Tren Sigins Trust nearly 18, 19 years and I was one of the first speakers, just just after I'd got diagnosed on the as a volunteer, I started as a volunteer in Brighton.

I think I was into my first year of diagnosis and, you know, still navigating whether I was going to still be here or whether I was not going to be here or, you know, all the misconceptions I had back then.

So that's way I started and not even foreseeing what the future was going to bring to be quite honest, David.

That must have been quite wrought to do it within your first year.

I mean, I must admit, when I was first diagnosed, I was in shocks to begin with.

Yeah, Mm-hmm.

I don't know if you, you.

I was, but I'll tell you what drove me and still drives me to this day .

It's the anger.

I had a lot of anger.

I think we all do. With some of us show at some of us.

We're angry with ourselves.

We're angry with the people.

We're angry with the world.

We're angry while we may be blaming us.

And this is all the self-stigma, as we know, putting ourselves in that position, blah, blah, blah.

But I think it was the anger that drove me to try admit my first all admit myself feel better, make myself feel more worthy and try and make a difference and obviously think things started to happen through that.

So it came the anger came revelations that I could actually do something to change the things.

There's an energy with anger, isn't it.

It can consume you or you can birectly. And use it.

That's exactly what I do.

Absolutely.

Yeah, yeah.

But yeah, I mean, you know, when I look back, I'm thinking, did I really do, have I really done all those things?

And why am I still doing all of these things?

But it's, you know, when I see, when I think I'm going to be calming down or taking a lighter seat, I see something maybe in the media, I see something that maybe happen to one of my colleagues.

I' hear their story for the first time of how they came at HIV and I get reignited.

I don't know what it is.

You know, the lights keep going off and like trying to keep putting them, turning them off.

And it's so difficult, David.

Do you know what I mean?

Yeah, It is so difficult, you know?

I mean .

I mean, you can hear when some of the lived experienced speakers speak to crowds and there can be small crowds, or big crows.

Yeah, absolutely.

And it can be an intimate space or a big public square, like the Jubilee square outside the library.

But you can see the crowd just listening intently and just the silin as you can sometimes see their jaws drop when they see, you know they hear what people have been through.

Yeah.

But yeah, I mean, activists, I think they make the world a better place, don't they?

They their intention is to do so.

Absolutely.

And if we go back through the decade, you know, when , you know, I mean, gosh, you know, you go back the 80s and the 90s and March my gosh, they were activists, you know, when we didn't know maybe what an activist was with them, we were talking about HIV.

And what they did and, you know, when you look at the stuff they were doing in America and , you know, and I always remember one thing reading, I seen, I think it was called to do with Act Out or something like that, one of the thing, Act up, Act up.

And I always remember seeing this thing on the television on one of the newsreels that, you know, that there was this massive parade and that was along , it was they were walking past the White House gardens and the men that had lost a lot of their loved ones were opening the caskets of the ashes of their loved ones and thrown them in the White House garden as an absolute stick your fingers up.

We're here.

Yeah, yeah.

Wake up , smell the coffee, whatever, and, you know, to have thrown their loved ones ashes away, in the fact of activism is just mind-blowing.

And, you know, I always remember sitting thinking, oh my goodness, you know, and, you know, we we talked talk about activism now and maybe even a few years ago, but if you go back, you know, the 80s and the 90s where people were dying in the fight to get the care and the support and the medication.

We have today, David, you know, and I am truly thankful of maybe the gay population that done a lot of that fighting back there.

So we, as everyone could have maybe that medication we have today.

So Activision, Activision, I can't even get my words out, can go back quite a few years.

Yeah, I mean, you know, we are standing on the shoulders of giants and the people that have passed before us as well.

Gosh.

There's just that act of scattering the ashes on the way of the garden.

I was literally laying the dead at the feet of the president, isn't it?

They wanted to look up, listen, because they were just closing the door and then there were the parade and there were, you know, getting knocked down in the streets, you know, and there were oh, awful, awful if you go back into history books.

Look at what's happening today.

I mean, you know, you know, the cessation of the PepFar funding to much of the much of the world, you, especially in Africa and and other continents as well., the amount of death that are going to occur from that, or premature deaths through lack of access to antral virals and things.

Yeah, the impact is going to be massive.

The needs for activists is Maybe even more so David, right?

Yeah, yeah, yeah, yeah..

Everyone doing their little bit if they can, if they can, do their little bit.

Exactly.

And so later on in the show, we're we're going to talk about some research products things are happening.

And that's inviting people to talk about their lived experience.

And we will, after the next song, talk about how you can get involved and be an activist, whatever level you feel comfortable with, with any organisation that you have them to admire and want to be a part of.

So shall we have another song?

Yes, go on then.

Yeah, okay.

So let's have this wonderful song from the, oh, Blue Ey himself, Frank Sinatra.

What a voice.

Wow.

If you've just tuned in, this is the HIV R on Radio Reverb 97.

FM in the Brighton Are.com online.

You can again, access our amazing famous podcasts at any time.

And David, we cannot finish that song without mentioning a global icon when we talk about HIV names, the fabulous, gorgeous, no longer with us, Elizabeth Taylor.

Oh, yes.

Oh, my goodness.

You know, Elizabeth Taylor , I was the first global recognised celebrity to speak out against HIV and AID.

Elizabeth was the ultimate advocate today.

Her voice and vision guide all we do .

On a national stage and across the globe, raises awareness and promotes education about the most important issues inactton people and communities living with HIVN age.

And it all started, David, when she was , you know, when she was filming.

And I've read a book, actually, and it was absolutely a famous, it was I don't read much, but I read her book and I thought spoke of all her confident, her friends within the gay community and, you know, Rock Hudson was one of many that had died from AID and she thought, I'm happy I had enough.

No one else is speaking that.

And I remember she said this, but I'm going to try try and do it.

And it started small and it's still going really well, still after a death, many, many, many years after her death.

AIS Fation, yeah.

Elizabeth Taylor AIDS Foundation.

And I've just looked, there's still loads of stuff they're doing in her name, in her memory.

So have she didn't have to.

Why did she do it?

She didn't do it for money.

She had she had enough of it.

She'd done it because of personal impact and the friend she'd lost to aid as what it was, back then, David.

And yeah, and it's a great read if you ever want to read her biography Amazing and lots and lots of celebrities' information you never knew, but it comes from the voice of Elizabeth Taylor.

Yeah, making a difference.

You can make a small difference or make difference , but it's a difference nonetheless.

Make world a better place.

Yeah.

Yeah, fantastic.

I'll thank you that.

No, great.

Great.

Yes, so as you' quite rightly mentioned, this is a radio show put together by activists, I might just said quite to FM.

Yes.

In fact, the whole of Radio Reverb is a a non-for-profit radio station.

So if you would like to donate some money to us, a price for a cup of coffee will be lovely or more or even a little bit less.

You just go to radio reverb.com and there's a donate button on the front page .

For this show, we actually have our own website and that's www.hour.org.uk and you can email us with your song suggestions, ideas for the show, experiences you want to share with us.

You can do that at info@ hvour.org.uk.

Yes, Yeah, and if anyone would like to come on and share their story with us, yeah, we'd love that would be fabulous.

Yeah, because I mean, every person's story is unique to them.

It's very, very different.

And yeah, , we' We love hearing from our listeners. And in fact, we're going to be meetings some of our listeners in the field, so to speak, at the weekend, but more about that later..

Just also a quick note and I like, no, I'm not whizzing by this, but we're really grateful to Jack Russell's technologies for sponsoring the show.

So thank you to fill Flash and the team at Jack Russell Technologies.

Thank you very much.

Gosh.

So are you going to be talking about UK Cab?

Yeah, so UK Cab, what is UKKab is?

Is it where you get a taxi?

Yeah, get a cab.

Uberber No, it's not.

So, UKCA is an organisation based in the UK and it's it stands for the UK Community Advisory P.

That's the one.

And it's for people living with HIV , and it's a free group to drawing, and it's a place where people can share their experiences and in and in influence.

Research projects, caregivers, national bodies.

So if you want to get involved as an activist, then that's a good way to do it.

You can just be a so what they do is you sign up and join them, and then they send you emails as and when people post it's like a message.

Yeah, yeah.

I mean, I'm part of it and I get, you know, messages, what's going on, any meetings, any sort of seminars, any sort of educational, you know, and they' just do a lot with medications, lots of, you know, things that happen with people's medication, really informative, actually.

I mean that was the basis of it happening, that's it, yeah.

It's grown in its scope and what it's able to do.

So obviously our treatments are quite complicated.

I mean, we do sell the idea that it's just one pillar day, but it's not quite often they're quite that simple, especially if you've got co mobidities and you're taking sy several medications as well.

So the UK can, so you get these messages coming through on the message board and you don't have to do anything.

No, you don't.

You don't.

You can just absorb the information from then, you are a more informed person or f.

Definitely.

And yeah, yeah, why not?

So it doesn't cost you anything.

You know, it's not spam email.

You don't get bombed with loads and loads.

You can follow certain threads or groups like you would on other message boards that you think you have on the Internet.

So I'll just read a little bit from their website.

So they're very strong on advocacy.

So as an HIV treatment advocates network, at the heart of all their work is their envision to give all people living with HIV and affected by HIV , the support to have their voices hurt.

So it's an online network, and it has online forums that helped and connect advocates from across the UK.

So there remember only forums enable advertocates to contribute to clinical trial design , commonantum treatment guidelines, communicate with other advocates and to keep up to date with the reports on the latest research.

Members can publish their own personal opinions and view or forward information from other organisations.

So if you are a volunteer of lunch positive fr for example, you could message the next network and tell the network about the lunch positive events that are happening in the forth in their future.

So yeah, so it's people together, just sharing information, and that's really a form of activism, I think.

Exactly.

And even being part of that gives you an insight of what's going on, what's going on in this country, you know, what's going on around. Around the world.

So you get that firsthand information, David, which makes you don't have to stand on that soapbox, what we've just been talking about.

You can still feel it are you're part of action.

Yeah, yeah, yeah.

So the UK cab, so it's the website address to sign up and it's a free sign up is UKC .net.

So UKCab.net..net.

Welcome back to the HIV Hour on 97.2 FM in the Brighton Hove area.

And if you're not in the Brighton Hove area, you can listen to it on BDB+ radio.

And don't forget, straight after the show has played, you can do it go to the radioreverb.com and go to the Listener again page and then about a week later, there's the podcast, which is world famous and downloaded the world over, isn't it?

Absolutely.

The whole world.

I know.

But they're famous.

Yeah, yeah Love it.

Yeah, whole world's heard your voice .

That's that a microphone.

I know.

Sorry.

Anyway, so we talked earlier before the song about how to get involved in in the UK CA and just learned the information, amazing information that's going around the UK about as a community of people living with HIV, we can get involved in the care that's given to us.

So, more locally, there are several charities that we're aware of that involve people in with HIV provide activist, really.

So the Sex Beacon has a service user forum that meets every month or so to discuss events that are happening within the Sotics beacon and the patient experience.

Everybody's welcome to attend if you are receiving Sussex Beacon services, or have used Sussex Beacon services, and we certainly know that exciting news ahead with it becoming the first LBT hospice, as well as hospice and Care Centre for people looking in the HIV.

So a great opportunity to get involved in that.

So if you're interested in getting involved in that, why not drop us a line at info at hivvour.org.uk and we can pass you on with the proper email, because I don't quite have my papers to hand.

So there is that.

Sue, you work for THTs and don't use volunteers, don't they?

Yes, I mean, you know, if anyone is interested in doing any volunteering for the town that he just go to the town Sec just website, you just pop in THT and then everything will probably come up there.

It'll give us give you all the information on what volunteer roads or you can also just ring the opposite ship Street or even just pop in.

Yeah.

Just pop in, you know, without giving that too much information yet.

Uh-huh.

Yeah.

So I haven't got any numbers at hand, but, you know, just put THT T Tiggins in on your Google and you'll get lot of information.

Yeah, a volunteer.

61 Ship Street is That's one, yeah the centre of town.

Really handy.

You don't even, I be best if you don't have a car Yeah, it's a bit difficult to park down there, but yeah.

But great to know where it is so it's in case you might need testing.

Testing, information, leaflids, condoms, lube, all sorts of things.

Or meet the wonderful Sue.

Ooh, you never know.

Maybe they're on the occasion, yes.

Yeah, yeah, yeah, because you do travel right a lot bit.

I do.

I'm a bit of a traveller, yes.

Where's your next visit?

Well, I was at Brighton College this morning at the Met. Sounds at the police, doesn't it?

But I do travel., yeah.

Yeah, now that we were doing a great f fair there, you could meet all yeah, meeting all the young people, telling them about all the services and our fabulous city of Brighton and home, telling to keep, you know, showing them how to keep save all the information hadadd and at the condoms and what have you.

But, you know, I travel around a lot I go to London a lot.

I go to a lot of the Brighton and Hope schools.

But yeah, the lift experience speakers, they're nationwide, aren't they?

Nationwide, nationwide.

So yes.

Is that just in England or is that the other?

It's just we've got some in Scotland and we got a couple in miles as well, David.

So, yeah..

And if you'd like to be involved as a positive voices speaker, or if put a lived experienced speaker.

Yeah, you just contact the tone as he can trust again.

Also, our very own Lawton unit, which is the HIV Clinic in Brighton Hove, has a patient panel, and that's really important to discuss sort of feedback where it be positive or negative feedback or just neutral feedback about the Lawson unit Clinical Services.

So they also have a newsletter, which they publish a few times a year seasonally.

The patient panel meets every few months, and again, if you email us at info at hvhour.org.uk , we can forward you details about the next patient panel, which is coming up in September, and the wonderful nurse, Connie Fitzpatrick, as chair of the patient panel and we're allowed to bring friends as well.

So I go to the patient panel and it's been encouraged that the people that already attend bring a friend, and they provide pizza as well.

Oh, Sourdough pizza, so it's good for your gastrointestinal gubbins as well.

Very nice pizza.

They do vegan ones too, if you are that way inclined.

So, yeah, patient panel.

There's the service user forum at Sussex Beacon.

I know that lunch positive, they are always asking for feedback from their service users.

So, actually, I was talking about that, that HIV Hour, we are going to visit lunch Pitive in Eastbourne.

We've never done this before.

No.

So we're going to go to Eastbourne on Saturday, because as listeners may or may not be aware, the Eastbourne Lunch Positive Group meet on the first Saturday of every month .

And it's facilitated by member of staff Jim Stanford, who I regard as a an activist, because we's one of the few people I knew in the medical profession that stood up back in the day and said, I'm sure of you positive I'm living.

So we're going to visit the patient group in Eastbourne.

So if you do live in Eastbourne or you live near Eastbourne, and you've never been to the group before, please do get in contact with Jim, that's Jim.stanford atlunchpositive.org and he' he'll tell you the details of the venue.

If you're already going and now where it is, then I hope to see you there.

And you can tell us about what you want to hear from the show, and what songs may be. Look like.

We do a little shout out for you.

So let's be nice.

And I think we are going to go and visit some other community groups in the future and just tell people about the show, because we do want to be a part of the community.

We don't want to be telling you the audience what to do and we want for you to be telling us what to do.

It's your show.

Share your knowledge.

It.

Come and share your knowledge.

Share your experience, your knowledge, give us ideas, give us your songs .

We'd love to hear from you. Info at hivivour.org.uk.

So that's it for activism.

I think we've done a lot on that, haven't we?

I think we have.

We've got a little bit of news on the research, and I'm going to just jump straight into that.

Yeah, go on.

Have you heard of the word cedar that's spelled SID-A?

It's a funny word, and you may not be aware of it because it's actually a European word and it's AID.

It's aids backwards.

Really?

Yeah.

Wow.

So in France, they call it the syndrome immunodeficiency Right, okay.

C or something.

Something like that.

Because they pronounce things some things are good about, don't they?

So, yeah.

So Ceda is the European word for eight.

And back in the day, so I was diagnosed in 1993.

And I remember, I think in 1994, I was asked if I' participate in a Eurosedar study.

Wow.

And this is as they were taking what seemed like loads and loads of blood off me in lots of little bottles.

And I said, yeah, go on, then why?

It's only one extra bottle.

So anyway, I have been giving them my blood for the last 30 years or so.

Yes, it has.

Gosh.

They have been celebrating 30 years of Eurosedar.

I've never heard from them.

Didn't know what they were doing with this..

I did say, yeah, yeah, you can have your blood.

In fact, it blood a about it because I was only young. Something year old at the time.

Here I am in my mid 50s.

Yeah.

And they're still taking me blood.

Wow.

So, yeah, they emailed me a lovely leaflet celebrating 30 years of Eurosedar, and they said that they would like to extend their thanks and gratitude to everyone that's taken part in reaching the 30th anniversary since the two people that created the study created it.

So what they have done with the Eurosedar blood, so since 1994, they've collected clinical data for more than 25,000 people living with HR across Europe.

And this includes countries like Latvia, F, Spain, France, even Ukraine, because Ukraine was then and still is an independent country because it had already broken away from the Soviet Union at this point.

So, yeah, to me, and other wonderful Europeans have been giving our blood, and they actually know now more about how to improve the health and quality of life of people with HOV across Europe and beyond .

So in the 30 years, they have published over 300 research papers, building steps for evidence based improvements in HOV treatment. Care.

And the blood has also helped increase the understanding of the long term effects of anti retroviral therapy. .

And how to use its its optimal advantage.

Also, treatment guidelines have been adapted to reflect real life patient needs, because sometimes often come up with guidelines which aren't really appropriate in the real world..

So studying people in the real world helps them create guidelines that are more appropriate.

And they also notice that the difference in HIV care between countries that's been studied, and they've tried to make sure that people across the European continent receive the same quality of care, whether you live in Ireland or Greece or Latfia or wherever.

So important stuff.

And it just shows the importance of research.

And, you know, they've already got a needle in my arm, they're taking the blood.

It's had no negative effect on me.

And if anything, my little little contribution, made a difference.

Me and 25,000.

Yeah, good for you.

I done.

Yeah. Blowning the own trumpet there, but I' Happy anniversary to Eurosedar.

The poppy study, I don't know if you're involved in the poppy study.

Well, the poppy style is 10 years old.

Now, the poppy study, I can't haven't got the words in front of me, but it's the pharmokinetic observations of people over 50.

So it's studying how people age, basically, with the medications that they're on.

And now they're entering their 10th year and they do their research in ways..

In previous years, they've been really focussed on brain health and ageing, HOV and ant retrviral therapy affects the brain.

Now they're going into their fifth wave and they're looking for people to reengage with them.

So if you've already been involved in the poppy study, I would encourage you to answer their emails, which they're sending out now.

So if you do live in Brighton, the clinical Research facility in Sussex House, just around the corner from the old, HIV Lawson Un, is the place where the research is going on.

Please do contact Stephen O'Farrell, who's the research nurse, and his telephone number is 01273523079.

So I think, actually, that's the telephone number for the research research department as a whole.

But if you're interested in getting part in research, and it really does help people.

So again, this is only possible because of people's participation in the study.

So you can be in activists by just being a participant in study.

Exactly..

And all you're doing is you're being studied.

Yeah.

But, you know, so that's them, they're passively taking blood and making observations on you.

There are studies that are a little bit more tailored towards the lived experience side of things.

So there is a study that Stephen wanted us to share.

And Sue, could you tell us about that one?

Ask Us Europe.

And it's by the well, it's led by Cher Collaborative at Queen Mary University of London and sharing share your experience.

So it's asking, are you living with HIV in Europe and taking HIV treatment?

Yes.

Great.

We would love to hear your thoughts about your medical consultations and new HIV treatments.

Your experience could help improve HIV treatment across Europe.

So our service was developed with members of the HIV community, David, across 17 European countries..

Oh, wow.

Do you know what?

I think I'll take part.

Yeah.

And I encourage all of you two as well.

Yeah.

There you go.

So it's all it's about just our experiences, isn't it?

Yeah.

So it's just, I think it's a questionnaire.

Yep.

I had a little quick look at it.

Yeah, you did some very good names that are involved in it.

Yep.

I know Steven's friend Angelina, a big shout out to Angelina.

Angelina. Is involved.

Yeah, so get involved.

Yep.

So, yeah, that's something you can do.

And like you said, not, not standing on a massive so box, but you're contributing to future.

Yeah, great.

So very quickly, we've got a little bit of local news.

So we've got Ozie, the HOV Hour is visiting the Eastbourne patient Group on Saturday.

So please do come along if you live in Eastbourne.

Also, I'd like to tell you about a peer action, so peer action.

I go swimming with a group called Peer A. They are all people living with HIV, and we all go swimming together twice a week .

If you're interested, a little bit more, we go swimming on Tuesdays at 1130 a.m., and we go swimming on at 8 a.m on Thursdays, and both swims happen at the King Al Alfred Centre in Hove.

So if you would like to join peer A swimming, get in touch with me at info at HIHard.org.uk.

But peer action is a group, is a community group and for former charity that is now a part of the Sussex Beacon, and it is for people living with HIV to help improve community and health and wellbeing by organising things ourselves.

So if we want to do yoga, so we'll do it together as a group, we organise it ourselves, and this will be done under the safety framework of the Sussex be as well.

So if you want to do yoga or perhaps we' like do some walk walks and a lovely countryside on the downs or just some urban walks, like along the undercliff or from pier to pier.

Then just get involved, meet other other people living in the like.

It's like-minded ideas, do you know?

Yeah, like-minded people.

Be the change you want to see in the world.

So there is an open meeting on Friday, the 19th of September. At 10 a.m. At the Sussex Beacon.

So again, if you'd like to go along to that, we'd like to know numbers, so please do get in touch at info at hvour.org.uk.

So on that day, 19th of September, there's something that THT are doing.

It's.

Yeah, in collaboration with Marie Krie, so they're launching a new research project in and it's called I don't Want Other People to write My History for me.

So it's exploring what's important to people living with HIV towards the end of their lives.

It will be an opportunity to hear about our research project and the subsequent work we are doing together here hear from some of the key people who were involved and celebrate the community who contributed.

So it's something we don't like talking about, David, you know.

We'll have to do it.

Yeah.

So it's it's been recognised.

We've been collaborating with that Mariuri for a couple of years now in some pieces of work.

So this is a new research report.

So , so it's it says, plus, you can see, I think you're signed up to this, aren't you?

I am, yes, I. There's the links.

If you go to trybooking.com slashk slashFJB you can get free tickets to the event, which is on Friday, the 19th of September, from 1.45 to 3.30 p.m.

So that's a busy day.

Friday the 19th.

Sussex speaking in the morning.

I know.

Lunch positive, 10 tickets trust to Mary Curie in the afternoon.

Get your pat lunches out ready. .

I think lunch positives may even provide some food.

Oh, yes, of course.

Day of activism.

Yes.

Thank you so much for listening, listeners.

We are going to you with memories of Canada with Cina, Dion and the Titanic tune.

Right.

The t, I love you so way you say, the tune.

The tune.

Cheerio, folks. Care, everyone.

Speak to you soon.