In the second episode of this six-part limited series documentary, about the battle for PrEP access in the UK we ask those who remember a time before the drug, what life was like before and after the drug started to get into the hands of those who needed it.
This drug literally liberated a whole generation who lived in fear of either direct or inherited trauma from a community ripped apart by the AIDS pandemic.
So we look at the NHS trial that, six years before NHS England agreed to prescribe it found PrEP to be so effective, it was closed early because it was deemed unethical to not protect those on the trial who were on the pacebos.
Join host Phil Samba as he uncovers the legal struggles, the historic activism, and the groundbreaking moments that made PrEP a reality. From the early days of HIV awareness to the modern fight for equitable healthcare, this is the compelling journey of The Other Blue Pill.
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
- Deborah Gold - Chief Executive of National Aids Trust
- Faruq - NHS Administrator
- Sheena McCormack - Clinical epidemiologist at University College London.
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
Alex Craddock
And so, and I remember we had a meeting with Will Nutland from PrEPster and I think it was in what's that pub on Compton Street called Compton's it's called Compton's. We had a drink in Compton's one evening and just to meet each other.
Cause we were like, we've kind of just been doing the same thing but in different places actually.
And I remember Will was super supportive, even though he could see that me and Greg were both a bit crazy. Will knew HIV doctors and Will had been working in public health and things like this.
I remember Will was doing a PhD at the time and I was like, oh, fucking hell, someone's doing a PhD, fancy.
Phil Samba (Host)
That’s Alex Craddock, one of the co-founders of I Want PrEP Now.
Alex Craddock
Um, my name is Alex Craddock. I, um, um, I lived in London, um, for a while, um, throughout the early 2010s. And, um, I was an HIV activist for, um, and I set up a website with a man called Greg Owen. Um, and the website was called I Want PrEP now. And it became surprisingly popular.
Greg Owen
Let’s go, let’s do some research. So I went in, spoke to some people did our research and six/seven weeks later I want PrEP Now was launched.
Phil Samba (Host)
That was Greg Owen, the other co-founder of I Want PrEP Now. He was speaking in PrEPster’s #PrEP17 documentary, filmed in 2017.
I Want PrEP Now was set up a few weeks after PrEPster the organisations both saw what was going on in the US and asked the question - how can we bring that to the UK?
Alex Craddock
So I found out about PrEP around, I think, 2014 or so, possibly 2013, when I moved to New York for three months from London. And then I found out about PrEP because everyone was on PrEP. Like, I was basically living the life of a happy young gay man moving to New York. And all of the other gay men that I was coming into contact with, they were all on PrEP and it was already fully normalised in their culture by this point. And they were surprised that I wasn't on PrEP. And I was like, why is everyone surprised? Like, what the fuck even is this thing? And they were like, well, why don't you just go and get it? And I was like, well, like, I've just moved here. Like, I don't have health insurance or anything. Like, I can't just go and get healthcare. We're in the United States. And they were like, yeah, you can actually. Like, there's programs in, I think at the time it was New York, San Francisco, and LA had programs where it was all covered by local authorities. And they were like, well, you absolutely can just go and get it.
And you don't really, I think I had to pay something like a $20 copay bill just to see the doctor or something like that. And then that was it. Um, and the guy, um, I won't mention the doctors because they told me when I went, um, they were like, yeah, just fill out this form. And I don't remember the exact figure, but it was approximately, they said, if you just write on the form that you earn less than $54,000 a year, then it's for free. So just write that.
And I was like, okay, sure. And I wrote that and then they were like, yeah, by the way, here's your free PrEP. And they were like, thanks, have a nice day. And then that was it. And I was like, okay, wow, I have this thing now. And then everyone was just like, yeah, you just take it every day. And then like, you don't need to worry about HIV anymore. And I was like, okay, I guess this is happening.
Phil Samba (Host)
This week on The Other Blue Pill - how PrEP became the next blue pill to change the way people have sex.
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.
And I guess - The most crucial thing to know as we head into this episode is that even as people in the UK were discovering the drug:
It was old news to many folks who’d already liberated their sex lives with it.
Alex Craddock
PrEP definitely changed the way I had sex because at the time I was very anxious around sex. When I was 21, which was let's say 2013, so this is just before PrEP sort of started becoming widespread in the UK.
Phil Samba (Host)
Most people who take PrEP in the UK take a dual pill called Truvada which was first approved in the US in 2004 - but before that, the two active ingredients Emtricitabine and Tenofovir disoproxil were approved as single pills.
Emtricitabine in 2003 and Tenofovir in 2001. They both do what Truvada does - what PrEP on the NHS today does.
That bears repeating. We got PrEP on the NHS in England in 2020. The US had it approved in 2012. The first drug found to do this that worked was approved all the way back in 2001!!
It took another seven years before the NHS *finally* agreed to make it available for free. And by the time they worked it all out, PrEP had fundamentally changed how people were having sex. So let’s rewind the clock, back to New York in 2013 or 2014.
Alex Craddock
I barely had sex for quite a long time, for like a year or something like this. I had sex very few times when I was 21. And a lot of, because I was just very anxious about it. And it was also the time when chem sex was really on the uprise as well. And so there was a lot of things happening around your sex life which make you nervous, basically.
And I was living in East London at the time. And I was having what I thought was quite dysfunctional sex. Like I would have casual sex like after a night out or something like this. I'd meet someone in the club across the road and then sort of be like, hey, I live across the road. Like, do you want to just come back to mine? And then we would have sex. And then the whole time, in my head, I'd be like, absolutely must use a condom, absolutely must use a condom, absolutely must use a condom. And then the real world happened and real life happened and he didn't want to use a condom. I didn't want to use a condom either. I had it in my head. We'd both had a lot to drink. It was maybe five in the morning, something like this. And then it would not happen. And then I would basically spend the whole of the next day or the next weekend or the next week just feeling awful and just being quite shocked at myself and being like, everyone is constantly saying, you must use a condom to not get HIV. You absolutely must do this. Otherwise, you will get this horrible disease, which you've seen in movies kills everyone. And I was just quite shocked at like, just not being able to consistently use condoms in like, in real-life scenarios.
Phil Samba (Host)
Excuse me while I do a ‘throwback to back in the day’ - and it’s not like I’m an expert in the field of HIV and sexual health *cough* but there have always been taboos within sex, especially the sex men have with men.
Before PrEP - bareback porn, where guys had anal sex without a condom - was taboo. Like, it genuinely was a big deal, an argument causer, and a big turn-off for some.
It went against what a generation of gay, bi and queer men had grown up learning - that to stay alive and not get HIV, you *had* to use a condom each and every single time – without fail.
Alex Craddock
So when I was growing up and I started doing things like watching porn, and it was probably around the mid-2000s. And it was a mixed bag in those days. A lot of it was from companies that were absolutely rigidly using condoms and doing notices at the beginning of their videos saying,
'Hey, all of our actors have been tested for STIs, plus we're using condoms', stuff like this. There was also porn companies that were saying, that were not saying these things and were not using condoms. And then there was also like a number of porn companies that were actively avoiding using condoms and fetishising the use of not using condoms.
And this was reflected in the community as well. Like this was like, there was people in the community who thought like the, who followed these paths that the porn companies were going along as well. Um, and I remember it being pretty confusing because it's also, I never got taught anything about STIs or, uh, HIV or any of these things until I was much older than when I started watching porn, probably.
Like my late teens or early twenties is when I really started learning about STIs because no one tells you about these things. And so I found it pretty confusing. And actually it was, it was also shown across people's, uh, Grindr profiles as well because this was when Grindr was really starting to get popular. And people would often say on their Grindr profiles whether they would have sex with condoms or not. And a lot of this was influenced by porn.
A lot of my confusion about this was also influenced by porn as well. I didn't really know what is the norm, what is the done deal, what is the right thing to do, is the right thing to do different from the norm? What about this person who lives near me? Is this the norm? Is he doing the norm? Is he doing the right thing? So it was all pretty confusing for a young teenager.
Phil Samba (Host)
What this began to create was a generational divide about PrEP.
Alex Craddock
Some elder people gay, bi and queer men who have sex with men felt like potentially ditching condoms, and having what for so many years had become viewed as ‘risky’ condomless sex was doing a disservice to all those who had died.
Like I remember having it, I was at an after-hours bar at Glastonbury and another gay man who was also there was like, oh, you're on PrEP now, are you? And was like, mm, don't know how I feel about that. And I was like, well, like, what's your problem? And he was like, sounds like an excuse to me and stuff like this. And you would get these little comments all the time. And I'm like, this is even coming from within our own community. And this was also at the time when like, like even Larry Kramer was against PrEP at the beginning as well. It took several years for Larry Kramer to come around and start supporting PrEP. And it was close to, it was, it was in the last few years of his life. I remember he, he didn't live long past 2016, but I remember like even very influential figures who have got like huge platforms and like a lot of, like a lot of, um, sort of like history behind them and stuff like this. Even they would be saying that even coming out with like, like, comments that they don't support people being able to stop using condoms now and stuff like this. So the stigma really felt like it was coming from all sides, from all sides. And it was coming from everywhere from all sides of the political spectrum, from within the community, from without, from outside the community. It was the stigma was coming from everywhere.
Phil Samba (Host)
I have this theory that Gen Z have a very different relationship with HIV compared to millennials like myself and Alex.
Millennials born roughly between 1980 and 1995 grew up with an awareness of HIV and inherited the trauma of the epidemic from Gen X who were born from the mid-60s to 80s - who also lived through it.
But Gen Z who were born between the mid-to-late 90s and the early 2010s are almost completely removed from our HIV history. Why? Because by the time they were coming of age, things like PrEP and campaigns like Undedectable=Untrasmissable were more prevalent.
They also had much more queer representation than we ever did growing up - even though it still has a long way to go.
Here’s what Alex thought.
Alex Craddock
Well, I would hope that Gen Z don't have the same trauma that actually that we did because we had it so directly passed down onto us and actually so much work has been done with PrEP and making it available and also, you know, with the battle against HIV in the wider sense with, you know, with the help of positive people and the partner study and U equals U and all of these campaigns and stuff. I would really hope that they don't have the same trauma as us because...
It's fucking horrible having trauma like that, you know? Having community trauma that comes at you from all sides. So I would really hope that actually attitudes really fully have changed in the last decade, that all of this change has been happening. And I would hope that actually that Gen Z people don't have this fear of HIV that we used to because they can actually just get PrEP.
Phil Samba (Host)
If Millennials like me have inherited the fear and trauma of HIV from the generations above us what does that mean for the generations after us??
Let’s hear from someone *slightly* younger than me.
Faaruq Mansaray
My attitude towards HIV when I was first exploring my sexuality I would describe as aware, ideally try not to catch it but I definitely would say that I engaged in probably what would be categorised as like risky behavior because I didn't see it as like a death sentence. I didn't see it as like the end of the world. I saw it as a major inconvenience.
Phil Samba (Host)
That was Faaruq, a Gen Z-er taking PrEP.
So if it was already changing the way people had sex, but wasn’t available on the NHS - how were people getting hold of it? That’s after the break.
Phil Samba (Host)
Years before PrEP was available on the NHS, it already began changing the way gay, bi and other queer men were having sex.
It was a conversation that was thriving in the US - and starting to cross the Atlantic to the UK thanks to people like Alex Craddock who we spoke to earlier
But if it wasn’t yet available on the NHS - how were people getting PrEP?
One way was through clinical trials.
The start of the process in the UK started in December 2012, a few months after - the Medical Research Council began a UK trial of PrEP, the Proud study.
Sheena McCormack
I was the coordinating investigator of Proud
Phil Samba (Host)
That’s Sheena McCormack, a Professor of Clinical Epidemiology at University College London.
Sheena McCormack
So the study followed a trial, the first PrEP trial in gay men and transgender women, in which they had compared active drug to a placebo, so a dummy pill.
So the participants, the clinic teams, nobody knew who'd had the real drug and nobody knew who'd had the placebo. And at the end of the follow-up, they looked at the rate of HIV infection in these two populations and they did find a reduction, but it was only 40% and nowhere near as high as they had aimed for. They were aiming to see a 50% reduction and they actually, I think, anticipated it would be higher than that. And they did a kind of sub-analysis looking at people who had evidence from the drug levels in their systems that they had been taking the tablets really well and they estimated that the reduction was closer to 90% in that population but that was taking a subpopulation from outside the randomised population. So in the UK, our thinking was this pill probably did work pretty well.
But what we wanted to know was what would happen if you gave it to people and they knew that they had a pill that had some biological activity against HIV, might it actually lead them to reduce the other methods that they were using at the time to prevent HIV, which honestly were working pretty well. Condoms when you weren't sure of someone's status and when you knew someone's status making a decision together about what sort of sex you were going to have. So these things were working pretty well.
But to really answer that question, what we needed to do was randomly allocate people to get the drug for the whole of the two years they were in follow-up or not to get it to the second year. And that way artificially in year one, we produce this randomised population who either have the drug and knew they've got it or didn't have the drug. And we have an independent data monitoring committee and that group is the only group that sees the HIV rates by treatment allocation.
Phil Samba (Host)
But the study was stopped early in 2014 because it found PrEP had worked SO well that it was unethical to keep it away from the trial participants, some of whom, were on placebos.
Let’s just pause and repeat that.
In 2014 a UK trial found PrEP was so effective, it was morally wrong to not protect all the trial participants and continue giving them placebos.
That’s six years before NHS England agreed to prescribe it.
Sheena McCormack
And when we were not completely finished with the trial, they looked at the data and they said, you've got to stop this randomisation now and offer everybody in the deferred arm PrEP because it works so very well. And when we looked at the data finally, they had seen an 86% reduction in HIV.
And I think as well as that being fantastic news, the thing that really quite shook us was just how high the rates of HIV was in the people who were deferred, the people who didn't have access to the drug. We thought the highest rates of HIV in the UK were probably about 3%, 3% per year, but actually that was 9% per year. So that was almost as shocking as the good news of the 86% reduction in HIV. And we were not the only trial to produce that level of effect. There was another European study in France. They were placebo-controlled, but they were doing something very interesting. They were looking at event-based doses when you take the drug around the time of condom and sex. And they also, by coincidence, showed an 86% reduction in HIV. So in these two European populations, two quite different trials.
Suddenly a sort of confidence that if you give people a drug and they know it's working, it's going to work extremely well. And also, you know, when people do take the drug well, even taking it only around common with sex, it can be incredibly powerful effecting.
Phil Samba (Host)
Around the same time, NHS England formed a working group to assess whether PrEP could be available on prescription.
All of this sounds super positive, doesn’t it?
This is where the question of science shifts into one about money. And those court cases we teased at the start of the series. Well, here we go.
HIV organisations called on the public to sign an open letter. In a press release Deborah Gold, outgoing Chief Executive of National Aids Trust, who we heard from last week, said:
Deborah Gold
“HIV and sexual health are too easily side-lined or ignored by politicians and decision-makers. This community statement on PrEP is our chance to get our voices heard – to say that PrEP works, is urgently needed and that the NHS must make it available without delay.”
Phil Samba (Host)
This was an important moment, and not long after a Clinical Priorities Advisory Group - who basically get to decide what medicines and services the NHS provide - was launched.
But trials, particularly this early one, were limited.
But people knew this drug was saving and changing lives. They’d seen that in the US. The data was there. And so were the stories.
So, doing something tied uniquely to both the queer and HIV community - grassroots organisations did something radical.
They found a way to get this drug, to those who needed it - while the system caught up.
