1: We almost didn't get the HIV game-changing drug PrEP - why not?

In the first episode of this six-part limited series documentary, we dive into the battle for PrEP access in the UK by not only looking at the court case fought here in England for the drug - but the advent of HIV and AIDS in the 80s.

Did you know we knew PrEP was effective from the early 2000s? Why did it take until 2020 to get it on the NHS, you ask?

Join me as I uncover the legal struggles, historic activism, and 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.

This week's guests are:

• Deborah Gold - Chief Executive of National Aids Trust
• Marc Thompson - Co-founder of PrEPster and The Love Tank
• Will Nutland - Co-founder of The Love Tank

Listen to understand

• The fierce activism and legal battles behind bringing PrEP, the revolutionary HIV prevention pill, to the UK.
• The profound impact of HIV/AIDS on the LGBTQIA+ community and the historical context of the epidemic.
• The economic, pharmaceutical, and societal factors influencing PrEP's availability and the importance of ongoing education and awareness in HIV prevention.

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

The number of new diagnoses was still rising every year. So it felt really urgent. In the end, making the decision to do what we did, which is to take legal action was the kind of hardest but also the easiest decision.

Phil Samba (host)

In 2016, the National Aids Trust and many across the health sector were told the process for providing an HIV-prevention drug had stopped because NHS England said they had got legal advice, which meant they could not prescribe it. 

The rug was completely pulled from under the HIV sector. 

We still don’t know who made that decision, but it ignited a fire—one that still burns today. 

Deborah Gold

It was honestly enraging, frustrating, and worrying. It felt like a really, really important thing that we were just on the cusp of achieving. The whole system had been working together to make that happen. And we knew that if it wasn't provided by the NHS, there was no other clear route to get access.

Phil Samba (host)

Have you heard about The Other Blue Pill?  No, not the one that makes folks - you know hard. The other one that’s revolutionised how people are having sex.

It’s called PrEP.

PrEP stands for Pre-Exposure Prophylaxis, it’s a pill that prevents HIV by taking it before and after sex. 

It’s available on the NHS in England for free now, but to make this happen was a historic battle that many people don’t know. 

One that left Deborah Gold, the outgoing CEO of National AIDS Trust feeling completely at a loss.

Deborah Gold

And the whole system is working together to make that happen. And we knew that if it wasn't provided by the NHS, there was no real other clear route to be able to get access. And the number of new diagnoses were still rising every year. So it felt really urgent. In the end, making the decision to do what we did, which is to take legal action with the kind of hardest but also the easiest decision.

And the number of new diagnoses was still rising every year. So it felt really urgent. And in the end, making the decision to do what we did, which is to take legal action was the kind of hardest but also the easiest decision I've ever made. It was so obviously the right thing to do.

Phil Samba (host)

This is the 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. As well as the people who take it and should benefit from it. 

This is 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 2017 - and working closely with this man ever since I met him the summer of that year.

Marc Thompson

Hi, my name is Marc Thompson. 

Phil Samba (host)

Marc is a very dear friend of mine. He’s one of the co-founders and is a non-executive director of The Love Tank. He played a huge part in England’s PrEP story. 

He’s also one of the people who started PrEPster - one of our biggest projects at The Love Tank. 

The project educates and agitates for PrEP access in England and beyond. 

But I’m getting ahead of myself. 

PrEP, though it feels like a relatively new thing to many in the UK, has a long history, which is, of course, rooted in queer activism.

Marc Thompson

The history of queer activism around health and inequalities and social justice, I mean, it's a really, really long one. I mean, I suppose the best way for me to frame it is when I came into it and my own experience. I mean, we know that there has been queer activism for a really long time, but predominantly kicking off in the early 70s with the Gay Liberation Front, but really catching steam in the early 80s.

Phil Samba (host)

Back in June 1981,  the U.S. Centers for Disease Control and Prevention reported unusual clusters of a rare type of pneumonia in five gay men in Los Angeles. 

Over the next few months, there were more and more cases of this pneumonia as well as increasing infections of Karposi’s sarcoma, a rare cancer typically found in much older men that causes legions. 

Images of these legions would become entwined with people living with HIV - through media and storytelling about the LGBTQIA+ community for years to come. 

Marc Thompson

We saw a real rising community activism in the early 80s, particularly around health, as many of our community were getting ill, dying, not receiving the services that they needed.

Phil Samba (host)

Then, in May 1982, this mysterious illness was given a name - not by a medical body, but by the New York Times. Creating a stigma that still plagues us today: they misnamed it Gay-Related Immune Deficiency or GRID.

That newspaper article single-handedly started a widespread misconception that HIV only affected gay men. 

It took three months for it to be deemed misleading by experts - but by then the damage had been done. It was only named Acquired Immune Deficiency Syndrome or AIDS for short when it was introduced by the Centers for Disease Control and Prevention after a consensus grew that the virus destroys the immune system and leaves the body open to all kinds of infections.

The following year in March 1983, Larry Kramer American playwright, author and outspoken AIDS activist wrote an impassioned front page essay “1,112 and Counting” 

Published in queer daily newspaper the New York Native. It was a call to action about the urgent need to address the AIDS crisis. It began: 

VOICEOVER:

If this article doesn’t scare the shit out of you, we’re in real trouble. If this article doesn’t rouse you to anger, fury, rage, and action, gay men may have no future on this earth. Our continued existence depends on just how angry you can get.

Phil Samba (host)

It was believed to be one of the first major essays written about the AIDS crisis.

In March 1985, a stark three years after the first widespread cases the US Food and Drug Administration approved the very first antibody screening test. And by the summer it was revealed that Hollywood actor Rock Hudson had AIDS. 

This was a huge revelation at the time, that had a monumental impact on raising awareness of AIDS. A feat public health campaigns were unable to achieve as many gay and bi men ignored what was happening, believing that publicity around the illness would just increase homophobic discrimination. 

But in early October, Rock Hudson died - https://www.youtube.com/watch?v=EI-jX5oeOEE 

Of the nearly 6,000 fatalities in the United States at this point, the vast majority were gay men.

Phil Samba (host)

In May 1986, it was understood that AIDS developed from a retrovirus, leading to the virus being renamed again to Human Immunodeficiency Virus and abbreviated to HIV.  

Around this time, the gay community was galvanised, and the fightback against the stigma and the disease itself was well underway.

Marc Thompson

There's also a sliver and a bigger line of HIV activism, which happened around the late 80s with the introduction of section 28, the Local Government Act, which then saw more and more people become politicized and taken to the streets and fighting back for equality. And I think that's really informed many of our queer movements around social justice, challenging inequity over the years.

Phil Samba (host):

Marc Thompson again

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 who was diagnosed positive or was in hospital with an AIDS diagnosis. It was completely alien to my world.

My earliest memory of it was a cover of a gay magazine called Him, and I would have been at school, and I would have been about 14 or 15. And on the front cover of the magazine, and I've got a copy of it somewhere, was a picture of young kind of twinks, young men in test tubes, and the kind of line was, the new killer of gay men. So there was really little informati on out there, and I think the first time I was presented with any information directly.

Will Nutland

For me, my first kind of awakening and awareness of queer activism was that activism that started to take place in the 70s and then the early 80s, 

Activism started to take place in the 70s and then the early 80s, which was around health inequalities that we were being pathologized as queer people because of who we were having sex with.

Phil Samba (host)

That’s Will Nutland, my boss. He’s a co-founder and director at the Love Tank too.

We were being forced to go into psychiatric units, we were forced therapy, electric shock therapy. 

I can remember someone who I used to work with in Norwich, who was only maybe 20 years older than me, who told me a very, very sad story about how he was pulled out of the UK army and forced to have electric shock treatment. 

So really only people a generation older than me were experiencing this. 

Phil Samba (host)

This pathologizing of us as queer people, and really the advent of HIV just galvanized that groundswell of activism that already existed.

Will Nutland

We quite literally were fighting for our lives on top of those fights that we were having around inequalities and access to health care and services and housing and having the legal right to love the people who we wanted to. 

So when you add HIV on top of that to all of those other things that queer people were facing in many parts of the world, there's no surprise about how good we were, how prepared we were.

Phil Samba (host)

This is all crucial context. We can’t talk about PrEP - the drug that prevents HIV - without understanding HIV, or the activism that came with it.

Especially as what comes next is the development of drugs. 

Phil Samba (host)

It took until 1987 -  for the first drug to treat HIV to come about. 

Researchers discovered a failed cancer drug from the 1960s, Azidothymidine known as AZT, could stop HIV from replicating itself, which helped people with AIDS to live longer. 

It was approved by the US Food and Drug administration in less than 4 months, fast-tracking a process that usually took many years. 

It was the most expensive prescription drug in history, with a one-year price tag of $10,000 which even by today's standard is crazy!

And while It treated HIV to an extent – it wasn’t a cure. Even worse, it had massive drawbacks. More about that later though. 

[News archive of Freddy AIDS coverage]

Phil Samba (host)

On 23rd November 1991, lead singer of British rock band Queen, Freddie Mercury, publicly revealed that he had AIDS, and the following day he died of bronchopneumonia, a complication of AIDS. 

This happened at a time when the media was punishingly cutthroat to gay and bi men diagnosed with the condition at the time. 

Freddie’s death however was significant. 

This is the moment where two crucial strands of the PrEP story really kick into action - because while drugs are a big part of the story, so is perception. 

Freddie’s death caused a substantial shift in the way society thought about HIV and AIDS.

Although AZT had been developed and approved years before, it took until the 1994 Concorde Study to as Marc Thompson likes to say be “the very first trial to put HIV drugs into bodies.”

Marc Thompson

In the late 80s, I was invited to be part of the CONCORS trial, which was looking at AZT, a single mono drug.

That was used previously a cancer drug to manage the virus. And I was offered it by my doctor and it was a randomized controlled trial. And I told them that unless you'll give me the real pill, I don't wanna be on it. And I'm really blessed that I didn't go on it because for many people, it caused lots of complications and the trial was stopped.

Phil Samba (host)

The Concorde study showed that AZT had no positive effect at best, and at worst it accelerated mortality rates.

The drug was extremely toxic, causing cell depletion in bone marrow meaning patients would need frequent blood transfusions to survive, while the general side effects mimicked the symptoms of progressing AIDS—​the treatment killed quicker than the disease itself. 

From 1995, we move into a period of pivoting towards two other types of drugs, the first being protease inhibitor drugs.

They are medications that prevent viruses from making more copies of themselves a crucial concept in the work against any virus. 

A year later, another class of anti-retrovirals called non-nucleoside reverse transcriptase inhibitors came about - they shut down HIV by stopping it from multiplying.

These drugs paved the way for a new era of combination therapy named highly active antiretroviral therapy (HAART) They became the new standard of care for HIV in 1996. 

They greatly lengthened the lives of people with AIDS. But it meant taking many pills every day. But the multiple doses and the drugs’ side effects drove many people to quit their HIV therapy.

Phil Samba (host)

A study later estimated that these drugs had cut the U.S. AIDS death rate by 70% since the epidemic peaked there in 1995.

This is where the medical journey starts to pivot - from saving people from AIDS to stopping people from getting HIV.

And until 2008 there weren’t really any major interventions. 

Drugs get better, HIV activists are focused on awareness, and testing becomes the focus for prevention work - because it wasn’t as common then, as it is now. 

But in January 2008, Swiss HIV experts put out a statement

VOICEOVER: “after review of the medical literature and extensive discussion,” An HIV-infected person on antiretroviral therapy with an undetectable virus load is not sexually infectious, i.e. cannot transmit HIV through sexual contact - AIDSMap

This is the first moment in what is now known as the U=U campaign, Undetectable equals Untransmittable. 

And now, the moment you’ve been waiting for. In 2012, the US Food and Drug Administration approved PrEP as the first drug to prevent HIV infection.

I want you to Remember that year. Twenty Twelve. And then start to count the years until England gets PrEP.

Phil Samba (host)

Will Nutland, from the Love Tank

Will Nutland

The FDA in the US approved PrEP in 2012 and I felt elated and excited because I've been watching the PrEP developments happen over in the USA for several years and I knew a bunch of the people who'd been on some of the early PrEP trials and so I was excited and I was elated. I was full of hope that finally, not only do we have evidence about the efficacy of PrEP, but we actually had a substantial authority rubber stamp it and prove it.

For me, that made sense that the rest of the world would follow very quickly and it would give permission for institutions in England and other parts of the UK to make PrEP available as soon as possible.

So around the same time as PrEP was approved by the FDA in the United States, we became increasingly aware in the UK of people who had questions about PrEP, people who were mistaking HIV PrEP with HIV PEP, of people who had already worked out that PrEP works and how it could be used, we started to hear of people sharing

The HIV meds of their partners or people who were using unused or discarded HIV medication. So they were guinea pigging other formulations of PrEP and not necessarily using the formulations that had been tested on major clinical trials. So for me, that started to raise concerns. It raised concerns that people were trying to interpret or navigate some of the evidence coming out globally.

Phil Samba (host)

And as we’ve already alluded to, all of this drug making? It costs a lot of money which means, when it comes to pharmaceutical companies who drive most of this forward - the bottom line of those companies plays a big part in what drugs get made, and who gets hold of them. 

Will Nutland

So I don't necessarily buy this argument that the problem just lays at the feet of pharmaceutical companies, but they are part of the problem. But pharmaceutical companies have to follow, quite rightly, strict regulations about how they bring a new medication from clinical trial onto the market. But also the way that the pharmaceutical pipeline industry is set up means that it's inevitable. Pharmacists need to make their money back on the clinical trials.

So for me, this throws up in the air the whole way that we should be thinking about how new drugs are trialed globally. And for me, I think we should be thinking about the role that the pharmaceutical company plays, which is primarily a profit -making role, and how we might start to think about new and different and forward -thinking ways.

That new medicines and new technologies can be developed that do not then rely on long patents being given to those pharmaceutical companies that inevitably mean that those drugs have to be marketed at the highest possible costs in order for those companies to get back their profits, the cost that they've spent on those drugs.

Phil Samba (host)

So the pharma companies started making the drugs. People in the US started taking the drugs. But what about in the UK? That’s after the break. 

[AD BREAK]

Phil Samba (host)

The US started to get PrEP to people in 2012. 

Remember I asked you to remember that year? 

2020 is almost a whole decade before people in England got it on the NHS. That’s despite people in Northern Ireland, Scotland and Wales getting it ahead of us. 

A whole decade where two court cases, more clinical trials and a whole load of prevaricating allowed the NHS to come to the same conclusion the community, the experts and health care professionals already knew: That PrEP could save lives, and play a huge part in ending the HIV pandemic. 

Phil Samba (host)

So that’s where it all began. But where it went from there - that’s a whole other story.

From every twist and turn in the court case, to how PrEP has liberated the sex lives of a whole generation - coming up on the limited series documentary - The Other Blue Pill:

[Clips]

Phil Samba (host)

The other blue pill has been an HIV and sex game changer - but PrEP’s story is far from over. 

As we’ve already started to uncover, the hidden history of the other blue tells a crucial story about the health of the folks who use the drug now - for generation PrEP.

There is a whole movement of people taking PrEP and crucially, they’re doing it as part of a wider revolt of people taking ownership of their health. 

Imagine: People being able to access what they need, when they need it - with their individual needs considered

That’s the real story of PrEP.  So let’s understand its history, and what those in generation PrEP have been advocating for so we can work out - where next? 

I’m Phil Samba, and this is The Other Blue Pill. 

The Other Blue Pill is a limited documentary series by The Love Tank and QueerAF, supported by the National AIDS Trust. It’s hosted by me Phil Samba and produced by Jamie Wareham.

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