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3: Queers are doing it for themselves: How activists changed HIV services across the UK
In the third episode of this six-part limited series documentary, about the battle for PrEP access in the UK - When the system doesn't provide, queers will. This week we look at how grassroots groups changed the way the UK tackles HIV transmission forever

PrEP's story is the perfect example of how we can democratise our own health - because when the NHS continued to refuse to provide the drug, grassroots activist groups found ways to get the drugs to those who needed and wanted it.

From I Want PrEP Now, to PrEPster and Act Up London - a coalition of groups came together, with different intersecting approaches, and literally changed the future of HIV in the UK.

This week, we understand the past of this HIV game-changer, so by the end of the series, you can understand the present and future of The Other Blue Pill.

  • Alex Craddock - IWantPrEPNow.com co-founder
  • Dani Singer - Act Up London activist
  • Marc Thompson - Co-founder of PrEPster and The Love Tank
  • Will Nutland - Co-founder of The Love Tank

Credits: Hosted and written by Phil Samba. Produced by Jamie Wareham. A QueerAF Production for the Love Tank, with support from National Aids Trust.

Full show notes, with sources

Deborah Gold

We were really supportive of the work that they were doing because it was empowering people to be able to get medication that they couldn't get in another way and prevent them from getting HIV. And that was great. But we definitely didn't see it as a solution to the problem.

Phil Samba (Host)

That’s Deborah Gold from the National AIDS Trust. 

She played a pivotal role in NHS England being taken to court as, at the time, they believed they couldn’t provide PrEP. 

NHS England made that decision after they got legal advice that deemed it a prevention activity, which, legally speaking, was now the responsibility of local authorities.

But that would have meant a postcode lottery approach to PrEP. That wasn’t good enough for the HIV sector, which saw PrEP as an early treatment for HIV - rather than just a prevention activity. 

That’s why National Aids Trust began the court case action.

But while they fought this case to give NHS England the legal security they felt like they needed, people weren’t waiting around. They were getting PrEP in the hands of those who needed it. 

Deborah Gold

The explanation they gave about it not being easy and possible for them to fund prevention activities didn't sit right on face of this, just like private information didn't sit right on us. And so we were angry about the fact that they, we knew that this had been happening for a long time and that they kind of delayed telling people. We were angry about the fact that it felt like an excuse not to fund it. And we were just like really, really worried about what that would mean.

Phil Samba (Host)

The continuous, and to many people in the sector, unnecessary setbacks in what would be a long and drawn out legal battle ignited a fire that still spurs so many - right across the UK’s HIV prevention sector.

It’s where we started our phenomenal story of the battle for access to HIV prevention drugs in the UK, told by health professionals, activists, and researchers who fought for it. 

And today, we’re going to go even deeper into the story of the Other Blue Pill: The past, present and future of the HIV game-changer, PrEP.

I’m Phil Samba, by the way. I work for The Love Tank, a not-for-profit community interest community that promotes health and wellbeing of underserved communities through education, capacity building + research.

I’ve been taking PrEP on and off since October 2017. And I was one of many who started using this life-saving pill long before it was available on the NHS. 

But that was only possible after grassroots action groups decided they would do something inherently queer - that when the system doesn’t provide, they will instead. 

Richard Kahwagi

In 2015, I had just moved to London and I was doing a master's program.

Phil Samba (Host)

That’s Richard Kahwagi, he’s my incredible colleague! He’s a creative director of The Love Tank and played a huge part in the UK’s PrEP story. He’s a co-founder of PrEPster - one of our biggest projects at The Love Tank aiming to educate and agitate for PrEP access in England and beyond. 

So far we’ve discussed the history of HIV and how attitudes towards PrEP have changed but what about how we first got access to the drug? 

That’s thanks to a handful of queers and HIV advocates who went out and got what they needed - because the system that doesn’t understand them and their healthcare needs, wouldn’t do anything.

Richard Kahwagi

PrEPster started at home. I was living with Will at the time and everything happened around the kitchen table when we both finished work.

When we first - created PrEPster, it was really a collaborative work between me and Will. And it was literally just us. It's the definition of grassroots.

PrEPster was important at the time because there wasn't a place, a repository where everything you needed to know about prep existed in one place. So it was important for us to create that resource for people to know what is prep, how does it work, and how do I get it.

Phil Samba (Host)

Around the same time I Want PrEP Now was created.

Greg Owen speaking on PrEP 17

I kinda didn’t really believe that like PrEP was a thing like. Truvada or the generic equivalent could have this amazing impact on HIV infection, so I called up my friend Alex, Alex Craddock - the co-founder of I Want PrEP Now and said “I’m sure there was a meeting like a few months ago where people talked about importing generic hepatitis C drugs for a cure and he was like “yeah, yeah I think so…”

Phil Samba (Host)

That’s Greg Owen speaking on our #PrEP17 documentary back in 2017, we used to work together at Terrence Higgins Trust a few years ago. He’s the other co-founder of I Want PrEP Now and is arguably one of the most prominent voices when it comes to PrEP access in the UK. I Want PrEP Now connects people who want to buy PrEP online from an overseas seller. It started doing this at a time when we couldn’t get it on the NHS.

Phil Samba (Host)

Alex Craddock, the other co-founder of I Want PrEP Now.

Alex Craddock

When we started building the website Greg didn’t have anywhere to live so we’d build the website in the evenings in my bedroom. We’d sit there surrounded by notes and random bits of information, coz we’d never bloody made one before and we had no idea how to do it.

Alex Craddock

Everyone needs to know about this because we've met so many people that are in the same place as us. And extremely stressed and anxious about being surrounded by HIV and watching their friends become positive around them and then thinking, I'll be next, I'll be next. And so we put a website together and we did it basically in, we wrote this website,

in my bedroom. We had to do it in my bedroom because Greg was homeless at the time. Neither of us had any money. We would just come over, we would just meet up and we would do it in my bedroom. And I remember we would usually drink Prosecco whilst writing the website. We would normally have a couple of drinks at the time. And, you know, it was like, it was important to actually have this because...

If everything was so dark in these times and doing like all of the activism was so dark and depressing that we needed things like to have a laugh and a glass of Prosecco whilst dealing with all of this stuff because you're dealing with horrible stories about people becoming positive, people desperately needing things and not getting them, healthcare people saying no. It was an it was an awfully depressing time. And we needed to hold on to these little things which actually gave us like hope and energy to keep going. And so we put the website together and basically it took us maybe a couple of weeks, couple of months to write it. And we were constantly asking people for little bits of information to throw in and people would say, what's it for? And we'd say, well, we're writing a website and they'd say, oh, what's the website about? And they would say, and then we would say, we're making website and telling people where to get PrEP from. And they were like, are you telling people to buy PrEP online? And we were like, yeah. And they were like, you shouldn't be doing that. That's a really bad idea. Like, this is a really bad idea. Like, I wouldn't get, like, don't get involved in this. Like, this is really dodgy. Just walk away from the whole project. Like, don't do it. And doctors were telling us this, other activists were telling us this.

They were saying like, you really, like, this is a really bad idea. Like, don't, like, just walk away from it, basically. And we were like, no, we have really important information, which we need to get out to people. We need to put this online. And then it became more and more clear that actually other people had this information too, but no one was willing to put it out in the public domain and actually spread the information because the supply chains were still like a bit shrouded and a bit sort of hard to see through sometimes. And so we put the website online and we published it and we didn't have any money to do any marketing or anything like this. I didn't even know that many people in the community and on the scene.

Phil Samba (Host)

But Alex and Greg had absolutely no idea what was to come next.

Alex Craddock

The only way that we launched it was Greg did a tweet and we put, we've made a website called I Want PrEP Now. And it tells people where to get PrEP now today before it's available on the NHS. And then we put a link to the website and then we were just like, and then we kind of just like shut the laptop and was just like, ah, that's done. We'll check on it like later sort of thing, just like in a couple of days or something like that. And just kind of walked away from it.

And then our target at that time was to save one transmission. We were like, if we save one transmission, actually all of this will be worth it. We wouldn't have changed that person's life. They won't have HIV anymore. This is worth it if we save one transmission. And I remember we checked the statistics on the website and in the first 24 hours we got 400 hits and we were like falling over in shock how popular that was. We were like, 400 like you fucking joking. And we were like, fucking hell, like it's actually really popular. And then 400 turned into 4,000 into 40,000. It just like the statistics just kept on spiralling and spiralling. And then we would start, people would start recognising our names. Like I'd be in bars and they would, say, they'd be like, like, they'd say to me, Hey, what's your name? And I tell them my name. And they go, like, where do I know this name? And then like, Oh, you you made this website, right? And be like, Oh, yeah, I made this website. Like, this is fucking weird. Like, I'm just in a bar and like in South London and a Saturday night sort of thing. And now, like people, people know what's going on. And the website spiraled and spiraled. And then even after launch, like six months after we put it online and it was getting so much usage, even still, doctors and community leaders and activists were still saying, this is super fucking dodgy. You should not be doing this. You should not be recommending people to do this type of stuff. And all we would say is, you're not making the drugs available. The drugs are not available, so we're making it available ourselves.

Alex Craddock

So as things were growing, the media started getting more and more involved and wanting to hear our story. And I remember articles were coming out and people started saying that this is just like the Dallas Buyers Club. And I'd never seen the Dallas Buyers Club and I didn't know what the Dallas Buyers Club was. And we were just doing what we what we planned and just getting the drugs out there and making them available. And actually now, like years later, when I've actually watched the Dallas Buyers Club and heard about this story that happened and learned more of my queer history, that actually it was very similar in retrospect. Yeah, it was.

[DALLAS BUYERS TRAILER CLIP]

Phil Samba (Host)

The Dallas Buyers Club is a film loosely based on cowboy Ron Woodroof. Set in 1985, at a time when HIV and AIDS were poorly understood and stigma was at an all-time high, he was diagnosed with AIDS and given just 30 days to live. 

Woodroof started smuggling unapproved pharmaceutical drugs into Texas to treat his symptoms and also distributed them to other people who had AIDS forgoing hospitals, doctors and AZT. 

Woodroof established the "Dallas Buyers Club", whilst facing backlash from the Food and Drug Administration (FDA).

It’s an example of how what happened with PrEP is based somewhat on learning from our history. 

In October 2015, I Want PrEP Now launched its website and people finally could buy PrEP directly from overseas sellers for £45 a month.

But they weren’t the only community group taking action, far from it. 

Dani Singer was part of ACT UP London when this was happening. 

ACT UP is an international, grassroots political group founded in New York in 1987 to end the AIDS pandemic.

Dani Singer

Yeah, I mean, I remember very well. So by the time I got involved, they'd already, I Want PrEP Now, and I think PrEPster had also been involved in Act Up, had already done the blue line to Dean Street. That action had already happened. So there was already a sense of momentum behind the campaign.

There was an action that I believe had already happened or was just about to happen, but that I sort of missed out on where Act Up and I think perhaps there was involved in this formed like a human chain, like a line of people leading to Dean Street, everyone dressed in blue and to sort of symbolise the number of people that wanted to access PrEP but couldn't. So that I think had already happened or maybe was just about to happen.

Um, but that, yeah, there was a real sense of momentum behind, uh, the desire to, to make PrEP more accessible and people were really, really galvanised by it. And as I said, because it was available already in New York, and I don't know if it was available in France at that time yet, or if it was, that was something that came a bit later, uh, but, but it was happening around the world. Um, and there was also just a lot of life behind, like restarting conversations around access to healthcare, um, that.

I don't know if they had been happening before, but it felt quite fresh and quite, quite new. Act Up London had only been reformed some months prior, like in 2014, after sort of fading out.

So the thing that made me get involved in Act Up London was some sort of weird divine intervention basically. It was very strange. I can't account for it, Phil. Essentially what happened was, well, I thought my oldest friend, Dan de la Motte, wanted to go to an event at the Glory RIP. This would have been in October 2015.

And I'd never been to the Glory before or indeed to any queer bar before and actually I was still like considering myself straight at that time which, lol. But anyway, Dan wanted to go to this event at the Glory but didn't want to go by himself and so I said would I come with him and I said yeah fine because I just always like to go to things and it turned out to be the first Act Up London HIV Blind Date event, which was completely fucking batshit. Like it was insane. I had no idea what was going on at any given time. I don't know if anyone did. There was just this bit where, where Dan Glass made us, we were throwing pigs at David Cameron, like actual pigs. I don't know. And then we all had to go and jizz in the canal afterwards. It was so insane. It was really silly.

Phil Samba (Host)

I checked with Dani. Jizzing in the canal is a regular Dan Glass joke who is all about radical acts of queer expression. It doesn’t actually happen. 

By the way, Dan Glass is an activist, academic, performer and writer who reformed the ACT UP London chapter in 2012.  

Dani

But I really enjoyed the night. And then Dan must have, Dan Glass must have said, so many times, Dan Glass must have said at the end, if anyone's enjoyed tonight, come along next Tuesday to an Act Up London meeting. And at that time, I was kind of looking for more things to be involved with, sort of generally. And I really liked, I had really enjoyed the HIV blind date, but my…

Yes, so I was just saying my stage management background led me to really think that I needed to help this event have a bit of focus and just a bit of general management really. So yeah, I just thought fuck it, I'll just go to this meeting and just see what happens because I'm always quite up for doing things.

So anyway, I decided to go to the next Act Up London meeting. I didn't know anything about Act Up London at that point. I was just, as I say, like looking for general things to get involved with. And that was why I went to the Act Up London meeting for no apparent reason.

Yeah, so the first meeting I went to was held at Positively UK, which was probably still is on what's that road that runs from Angel to Old Street? City Road. So I went there the following Tuesday. And there were quite a few people who've been at HIV Blind Date, who were there, I think, for the first time, and then some people who had been coming to a few more meetings before that.

And among the people who had already been involved was Alex, Alex Craddock and Greg Owen. And obviously I was meeting them for the first time. And I think a lot of people meeting them for the first time. It was so, it's so bizarre to me that that was my first Act Up meeting and my first like, the first queer thing that I'd ever actively decided to do because it was such a pivotal like moment in the development of PrEP awareness and activism because in that very meeting, Alex had just come back from New York, Greg had just been diagnosed and Alex had had access to PrEP in New York and then came back to London, went to ICM Dean Street and said, oh, hey, I've been on PrEP in New York. I'd just love to continue taking it here. And then be told, no, you can't do that. Because PrEP wasn't, there was just like, there was phase one of the Proud trial. Like it was so unavailable at that point.

So they, in this meeting that I was at purely by chance, I think they even had like a little PowerPoint or something of this little project they were going to put together of a website called IWantPrEPnow.co.uk. And they were very much like, oh, it's just going to be for our friends really. But we've done some research, we've looked into it and we've realised that, you know, you can buy the same thing, like the same PrEP. But abroad and they were explaining all about patents and so on. I didn't have a fuck, I don't know what was going on at all. Like I had no knowledge of HIV at all. I didn't even like the thought that I was sitting in a room with HIV-positive people was just like blowing my mind. I didn't know what PrEP was. I literally knew nothing about anything. And I remember also sitting in that room just saying to myself how funny to be in the minority as a straight person.

Phil Samba (Host)

Dani worked closely with the founders of I Want PrEP Now during this period of time.

Dani Singer

But everyone was super friendly and Greg and Alex were just instantly lovely. And, you know, I'm still friends with Alex and I visit him in Berlin whenever I'm going to Berlin. And I see Greg from time to time. It's always so beautiful to see them. And those were, they were a really, really instrumental connections to have made for me as a soon-to-be-like queer person. But just, yeah, in my whole activism introduction.

There's just, there's just like, yeah, there's just a legacy of like life changing and like community, like just community changing healthcare that came before us. And obviously, there's ACT UP, that's a huge part of that, but there are also small actions that people have taken themselves and within their communities, particularly within the trans community, to access hormones and healthcare that just goes back as far as forever, as far as I'm concerned.

Phil Samba (Host)

That’s something that chimes with The Love Tank co-founder Will Nutland.

Will Nutland

So there's been a long history of queer activism that goes back generations around things like Stonewall, but queer people were fighting for changes in legislation about how homosexuality was being defined. We were at the forefront of white health movements as well, including sort of anti-racism fights, some of the fights around feminism.

Phil Samba(Host)

Will’s brief history of queer activism got me thinking about the continuation of our activism when it came to PrEP and what happened after I Want PrEP Now and PrEPster launched. 

Will Nutland

So one of the reasons why we knew that PrEP was so impactful and was having a difference on HIV incidents in places like London was that clinics started to tell us that the staff members who would see people who were recently diagnosed with HIV suddenly found that their work calendars had black spaces in them. They suddenly were at work and twiddling their thumbs and one wondered, what on earth's going on? Could it be that We've got a fault in our system? Maybe our online calendars have stopped working properly. And that was the point when some of the people I worked with started to realise that something extraordinary was happening. Something extraordinary was happening because far fewer of us were receiving an HIV-positive diagnosis than we had in the five years or so before that. And so there was a change to HIV services in that suddenly over a relatively short period of time. Those people who were new diagnosed had less work to do. But also, I think it was probably an incentive to encourage not new people to start thinking about PrEP, but we all know that before you start to use PrEP, you need to have a negative HIV test. So my guess is that probably there was an increase in HIV testing, an increase in people who were testing and testing negative in order to facilitate their access to PrEP commencement.

Marc Thompson

Oh, that's it. So the drop in new in HIV service, start again, the drop in new HIV diagnoses in 2016 didn't immediately have an impact on the provision of HIV services. We celebrated that. It was it was really good news and we were really, really pleased it had happened.

Phil Samba (Host)

That’s Marc Thompson, one of the co-founders and is a non-executive director of The Love Tank. He was one of the people who started PrEPster. As someone who has been living with HIV for almost 40 years, I wanted to hear about his experiences using HIV services in England.

What was interesting for me was I was working at Positively UK running a peer support program. And prior to 2016, we were getting at least 10 calls a week for newly diagnosed people. We were seeing so many people come through our doors who wanted peer support or to become peer mentors. 2017, a year after those numbers we started to see less and less people call us up. We saw less clinics refer people to us. And our staff that were based in clinics were seeing less people. So we didn't see an immediate effect on our services, but it was starting to take hold a year, two years later.

Phil Samba (Host)

Around this time there was also the PrEP Impact Trial, which in 2017 aimed to recruit 26,000 participants who were at high risk of getting HIV in England and provide them with PrEP.

The trial was a hot mess, there were so many delays to it starting. But it ended up being the precursor to PrEP becoming available on the NHS in England. 

They said it would be at this time then it got pushed back to that time and then this time again. It was infuriating for those of us working in the HIV sector. 

But from that frustration, queer and HIV advocate groups took action. 

Reflecting on this now, it shows to me a united and connected community driven to fight for their health - and the health of their brothers, sisters and theyfriends. 

But as with any story, it’s a little more nuanced than that.

Because HIV and AIDS caused so much heartbreak, the arrival of PrEP was also a source of conflict for a community that was still grieving and fighting to remember those who it had lost  

That’s next week, on The Other Blue Pill.

Episodes

Season One
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