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4: Truvada tension - why some people didn't want PrEP
In the fourth episode of this six-part limited series documentary, about the battle for PrEP access in the UK - How PrEP created a still ongoing, albeit diminished, tension between prevention and provision for people with HIV

Are you a Truvada Whore? Is that something to be proud of? An article in 2016 changed the way many people saw PrEP for many years. Reflecting on it years later, the writer - spoke about why they'd since started PrEP, but their article put many people off for many years.

It highlights an ongoing, albeit diminished tension, between those who fight for HIV provisions, and those who are focused on preventing transmission.

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.

  • Deborah Gold - Chief Executive of National Aids Trust
  • Alex Craddock - co-founder
  • 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

It was exhausting, it was stressful, it was a bit frightening. The whole process for that was a lot at stake for us as an organisation. In terms of our credibility, organisationally, in terms of the kind of risk of taking the case. But also in terms of really, really doing this, because we really passionately felt like a prep was a really crucial thing to be available. And if we didn't win, it wouldn't be. And so for that reason, also.

Phil Samba (Host)

That’s how Deborah Gold, the outgoing CEO of National AIDS Trust felt ahead of the first court case against NHS England’s decision to not prescribe PrEP. And they actually won this case - but it was a short-lived victory…

Deborah Gold

It felt amazing and terrible because we already knew that they were going to appeal. And the process of getting from deciding that we were going to take the legal advice to get into the caucus was incredibly intense and exhausting and kind of all of the things. You know, there was, the whole thing happened really quickly and the reason is that there was this one really key meeting that was that they would consider like a whole bunch of drugs to be considered and there's a particular envelope of money so they have X amount of money to spend, they get 50 proposals for different things they might fund and they grade them based on how well they work and how much they cost and then when they start from the top of the list, the most cost-effective ones and they fund that and they keep going down the list until the layman's out, once the money's spent.

Phil Samba (Host)

And for Deborah, all of this was incredibly frustrating, because while the NHS stood by their case in court, in the real world - as we covered in the last episode - people were finding ways to get hold of PrEP to protect themselves.

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. We always felt that there needed to be proper, systematic availability of PrEP through the health system for free. You know, we're very aware over time, the cost of PrEP, generic PrEP that you kind of buy yourself has really reduced. But it was actually quite expensive at the time. So it was complicated to get. You needed to be pretty confident with internet access. You needed to have the money to be able to pay for it, which lots of people didn't have. To have the confidence, you know, kind of is quite frightening. And although I Want PrEP now provided really brilliant advice and did a lot of, of being on a pre-natal care PrEP through the health system for free. You know, we were very aware over time the cost of a pre-natal care PrEP by yourself was really reduced. But it was actually quite expensive at the time, so it was complicated to get. You needed to be pretty confident in internet access. You needed to have the money to be able to pay for it, which lots of people didn't have. To have the confidence, you know, kind of, is quite frightening.

Phil Samba (Host)

But the efforts of these groups was working, around this time a 21% reduction of HIV in the UK was revealed and at least partly attributed to people and community groups getting hold of PrEP on their own, as we heard last week. 

It was an important moment and perhaps the start of what is still an ongoing pivot in services from supporting people with HIV, to preventing people getting HIV. 

That might sound sensible, reasonable and understandable. But the true picture is more complex. 

Because the different vulnerabilities of communities mean every group has their challenges. And if funding is switching away from helping people who get HIV, what happens to those who do? That’s today on The Other Blue Pill.

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 2017.

But let's rewind to 2012 when there was a curious article.

HIV Advocate David Duran penned a Huffington Post article titled Truvada Whores question mark.

The article was released after the US Food and Drug Administration approved PrEP and asked questions using language that is not only unhelpful but massively stigmatising: 

He asked “for men who engage in, quote “unsafe” sex – as in, bareback or condomless – is this just an excuse to continue to be irresponsible?”

For many, the whole Truvada Whore thing was just nonsense but its impact was vast and long-lasting, and what it says about where people were at the advent of PrEP becoming available is even more curious. 

Alex Craddock, co-founder of I Want PrEP Now gives us his explanation of a Truvada whore.

Alex Craddock

What is a Truvada whore? A Truvada whore, I mean, I'm not sure if there is an urban dictionary definition. If there is, then I would love to read it. But from my understanding, a Truvada whore would be someone who starts PrEP and then sleeps around a lot and is probably really enjoying their sex life as well.

And the Truvada whore is probably very shameless about having a high number of partners and stuff like this. And to be honest, I support them as well. If you want to start PrEP and you want to have loads of amazing sex, then good for you. Enjoy your life.

I've also been on both sides of this myself where I've been taking PrEP for years on a daily basis and had periods of not really having much sex and then also having periods of having hilarious amounts of sex. And like, especially through COVID, I stopped taking Truvada completely because it was COVID and I was not really having sex with anyone. I was like, I don't know why I'm taking this every day.

Phil Samba (Host)

That term was so harmful to our community in more ways than one. It affected how we were viewed in the media, it affected what people thought of PrEP and it left long-lasting damage.

But it’s really crucial to see that article in the context of the time. 

When HIV first became known there were only three things you could do to prevent it – use condoms correctly each and every single time, have absolutely no penetrative sex whatsoever or just not have sex at all. For over 30 years, queer men only ever knew sex with condoms as good and sex without condoms as bad.

Because society holds prejudice about queer people - when a lot of us discover our sexuality, we already have internalised this hate we’ve heard all around us - all of our lives.  It affects the way we interact with the world and the people we’re intimate with. 

The vitriol around HIV supported those prejudiced notions that we are doing something dirty, wrong or immoral. I used to worry about getting HIV, even when using condoms. And I’m not alone in that. That fear is vivid for so many of us, then - and now.

Alex Craddock

I don't really have any shame in being called a Truvada whore. Like...

It means that I'm actually taking control of my sex life and doing it safely and probably having more sex than them and I would say they're probably just a bit jealous.

Phil Samba (Host)

The shade of it all!

And look, we’ve come a very long way since the start of the HIV/AIDS pandemic. 

Today we have a multitude of prevention options, known as combination prevention. 

Combination prevention is a holistic approach where HIV prevention is not a single intervention (such as condom distribution), instead, it is a mix of structural, behavioural and biomedical interventions, used to prevent the transmission and acquisition of HIV. 

I am sick and tired of people who are not like me telling me what I should do with my sex life. 

I hate being asked, “Why can’t you just wear condoms?” 

We don’t ask straight people that. And if we do, the guy might say “She’s on the pill” unfairly putting all the responsibility onto women. 

PrEP is relatively new and it’s also not for everyone so I understand why some people still prefer to use a mix of condoms and testing regularly to protect themselves and their partners - after all, there’s a lot of confusion about how it works, and where to get it. 

We do however, all know what condoms are, how they work, and where to get them. Perhaps because sex education is largely geared around pregnancy - it’s one of the few options presented to us in sex ed. 

Indeed, for some people, they are the best option. They’re cheap and can prevent other STIs from being transmitted.

But PrEP changed the game because it was a different form of protection and it works.

And so the real trouble with The Truvada Whore article was not its intention - a community discussing whether PrEP was the right next step in HIV prevention

Instead, it reeked of what many of us would now recognise as internalised homophobia - the shame that other people have about the quote ‘dirty, risky, not normal’ gay sex, that we’ve taken on board after years of having it. 

Some people hate the idea of PrEP because it normalises the sex we have. Actively supporting the freedom for us to enjoy sex would mean agreeing that it’s perfectly acceptable.

The author later penned an update after a huge backlash from the community with people explaining exactly this.  Although they defended the article, they also crucially recognised that PrEP was an effective HIV prevention tool. Indeed, several years later, they told Huff Post, who first published the article - they were now taking PrEP.  

HIV for many years has felt like an equivalent of unplanned pregnancy, the one truly life-altering thing that comes from having condomless sex. 

But with condoms, and now PrEP as another prevention tool, the risk of HIV is reduced significantly and the choice to use either or both together should be supported alongside testing regularly.

Phil Samba (Host)

Crucially though, all of this highlights what is still an ongoing, albeit diminished tension in the HIV world regarding the push and pull factors of both HIV prevention and HIV care.

So what does this look like? That’s after the break

Phil Samba (Host)

Let’s rewind to the early 90s, at a time where HIV testing was only just getting off the ground:

The original HIV services were bleak, at first we didn’t know what HIV was and there was a lot of fear as a result of that. 

Will Nutland

So HIV service provision at the time when I came out was very different from what we see today. I remember going for my first HIV test, I had to go into a clinic in a hospital. It took two weeks to make an appointment and wait for your appointment. You then had to receive pre-test counselling. It took two weeks to get the results and then quite often you would have to wait a week or more again to get an appointment in order to go and get your test results and again you would

Phil Samba (Host)

Will Nutland, co-founder of the Love Tank

Will Nutland

It took two weeks to get the results and then quite often you would have to wait a week or more to get an appointment in order to go and get your test results. And again, you would need to have post-test counselling usually before you were giving your test results. So you would have been held in limbo for some time, four or five or six weeks. And often it was seen that wait-in-time and post-test counselling was deemed to be good for us to have post-test counselling usually before you were given your test results. So you were kind of held in limbo for some time, four or five or six weeks. And often it was seen that waiting time and the post-test counselling was deemed to be good for us because it might make us contemplate on the reasons why we had needed to have a test in the first place because it might make us contemplate on the reasons why we had needed to have tests in the first place. But for people who were diagnosed with HIV, in those times it was a really traumatic experience.

Phil Samba (Host)

Marc Thompson, the other co-founder of the Love Tank 

Marc Thompson

So I was diagnosed in November 1986, about a year and a half after I'd come out. And I knew very little about HIV as a thing. I'd heard of it. I'd heard more about this virus that was affecting gay men, but they were gay men in the US. I didn't know anybody in the UK that was diagnosed positive or was in hospital with an AIDS diagnosis. It was completely alien to my world.

So when I was diagnosed, I mean, as I said, you know, it was in the mid-80s, the epidemic was just really starting to get a foothold in the UK. Thousands had already died in the United States and it was starting to encroach on the African continent as well. So I didn't expect to get a positive diagnosis because as I said, you know, I didn't know anybody, it wasn't part of my world. So it was shocking, frightening, incredibly distressing. I wasn't given a prognosis, you know, of this is a death sentence, but I was certainly left with a feeling that there was nothing that could be done about this. So I was just a walking time bomb, that this could go off at any time. I could get ill and I could die. And it wouldn't just be an easy death. It would be painful, it would be shameful because of the attendant stigma attached to HIV at that time and still to this day, but obviously much more virulent at that time.

Phil Samba (Host)

Marc talked about how things could have been different for him as a young Black queer man if PrEP was available.

Marc Thompson

If PEP had been available in the mid-80s, around the time that I became infected, it would have been a no-brainer. I would have got on it. If it was easy to access, if I'd known about it as a 16-year-old boy about to make my sexual debut, and I knew that it was available, I could access it for free, there were very little side effects, and there was no shame or stigma in taking it, then without a doubt, I would have taken that in a heartbeat in the same way that I would have got vaccinated against something at that time. I was never hesitant to do those things. And they often say to people that the reason I got infected back in the 80s is very much the same reason that many young people who look like me, so I'm black and I'm queer, I come from London, are still getting infected because they don't have access to information, resources or the tools to prevent them getting diagnosed or getting affected.

Whereas now there's a HIV prevention toolkit with all of the different options that one could have. Back when I was diagnosed, or in the early years of my diagnosis, it was condoms or abstinence. We weren't even promoting testing as a prevention tool. So we have a much richer landscape. And also not just the way that we talk about the tools, but we recognise...

the biomedical and the psychosocial impact that we have to consider. So we're not just looking at, give somebody a condom and tell them how to use it. We're looking at why some people use condoms, why some people don't. We think differently about people's backgrounds, about language, about their cultural needs. And I think that has been a huge shift. We think more around harm reduction rather than stopping this in its tracks.

So I think that's shown leaps and bounds. If you were break down of decade by decade, I think the best way to do it is kind of go to 1980s abstinence condoms, boom. The early 90s, mid 90s abstinence, condoms, testing. But in the UK, we weren't really pushing testing as a huge tool, that didn't come till later but it was abstinence and condoms and testing, but then also trying to understand where people's lives were, where people were operating in their own worlds and giving them the language to talk about HIV with their sexual partners from a position which wasn't fear-based, which was a bit more compassionate, a bit more caring. So we were moving away from put all of these positive people on an island to positive people exist within our world. We have relationships with them.

They have relationships with us. We need to talk about us rather than them. So that really shifted. We move into the 2000s and what we see there is the advent of particularly gay men really, really finding their feet. African communities coming to the fore and having a voice, women having a stronger voice. So we're starting to see a lot more nuance and segmentation around prevention work.

Phil Samba (Host)

Marc says that HIV prevention has changed over the years, but the implications of those changes are vast:

Marc Thompson

So what may work for an urban gay man in prevention is not the same for a black African woman. So we start to get to see different ways of addressing an issue and providing prevention tools. Also looking at the psychosocial issues which I've mentioned previously, you know, so trying to get people to understand how HIV might work in the body and what we might do to prevent it because we're getting a lot more information around viral load, around CD4 count.

So that really shifts. So we moved to the mid-2000s and we become much more engaged and Involved in promoting testing as a really good behavior as something that we can do if you know your status You can do something about it because in 1997 we have the advent of antiretrovirals after many trials

It was a delta trial, either way. And that found out the combination of parenchal work could reduce a person's viral load. But we're still not at the stage where we understand that somebody is uninfectious. So testing becomes a really, really important tool alongside condoms. Fortunately, the abstinence message kind of gets kicked out of the room, which is a good thing.

And then we move to the 2010s and we start to see the conversation around PrEP, starting to emerge in PrEP access, but equally importantly, and this is important for me as a man living with HIV, is the understanding and the confirmation of U equals U, untransmittable equals untransmittable. So when we have that, we now have these really four amazing tools that we can use. U equals U, PrEP, testing, condoms. So I think that has really shifted in what we have around prevention.

Phil Samba (Host)

As a PrEP-using HIV activist, I remember thinking if we can’t get PrEP available in England. What does this mean for the global south? Why hasn’t PrEP made a similar impact in the global south?

Deborah Gold, the outgoing CEO of National AIDS Trust

Deborah Gold

My guess is that it hasn't solved the problem in the global south because generally speaking, the challenge for HIV looks quite different there. So first of all, there's issues around cost of medication and availability of medication, and then even kind of systems of delivery of medication to make it available for people. I think there are challenges around real stigma to do with the idea of taking PrEP, and I think that still exists.

My guess is that it hasn't solved the problem of remote staff because generally speaking the challenge of HIV looks quite different there. So first of all there's issues around cost of medication and availability of medication and then even kind of system of delivery of medication to make it available for people. I think there are challenges around real stigma to do with your idea of taking PrEP and I think that still exists.

I mean, I think that it isn't gone in the UK by any means, that stigma exists, but I think it can be bigger in other places around the world. And ironically, one of the things that court case did is totally solve the problem of people not thinking that PrEP should be provided, because it turns out, turns out that when you when you tell us we can't have it, suddenly everyone really wants it. And so all those worries we had, you know, before.

Phil Samba

It’s also about the way people take PrEP, specifically because at the moment though new ways of getting PrEP into people's bodies are being developed - it’s mostly available as a pill, The Love Tank’s Marc Thompson:

Marc Thompson

The fact of how people take an access PrEP, so it's oral, so that becomes a challenge for the communities that most need it. And if we look across the global South, that it's overwhelmingly women that are infected with HIV, we can, if we just park for a minute, the homophobic laws, which impact on queer men, but we know it's overwhelmingly women in the global South that have HIV, and we know that there's a lower uptake of PrEP in women. So I think if we can start addressing the issue of women's access wherever they are.

Then we start to have a model and a template for what we can do in the global South. But I think until we can crack the nut of injectables and access for people, then that's always gonna be the issue. I just wanna add something to that as well, because I think that, you know, we look at the global South as if it's over there, whereas the global South is me as a person of color. The global South are the black African women that I work with who live in Hackney and Tower Hamlets and wherever they are. And the same issues that they face are facing the global South in the African continent. So taboos around conversations around sex and sexuality, the idea of taking a preventative measure, it means that you're having sex. So those are conversations which need to be tackled and overcome.

Phil Samba (Host)

This starts to paint an important picture -  because we did eventually get PrEP on the NHS in England, and while it was done so with great success for many gay and bi men who now take PrEP - and the victory lap we did at this point was deserved. 

It also meant we did an injustice to many other people who are vulnerable to HIV but don’t know if PrEP can help protect them too.

That’s next time on the Other Blue Pill.


Season One
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