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Greg, The People vs the NHS: Who gets the drugs?

The People vs the NHS: Who Gets the Drugs?

This is the story of a legal fight which saw doctors, activists and AIDS charities battle for PrEP on the NHS. 

About the programme

PrEP is a drug that experts believe could end the HIV and AIDS epidemic. But in 2016, the NHS made the controversial decision that they could not fund it. This is the incredible story of the battle for PrEP on the NHS: a legal fight which saw doctors, activists and AIDS charities come together to overturn the NHS decision. At the heart of the story is one man, Greg Owen, who helped stop thousands becoming HIV positive by setting up a website which allowed people to buy generic PrEP from drug manufacturers in India. Despite being homeless and without a wage, Greg found himself running Britain’s main gateway to PrEP.

Read more about it on the BBC's programme pages , or find out more about HIV and AIDS below.

Discover the range of qualifications and modules from the OU related to this programme:

Greg, on The People VS The NHS - BBC

Copyright: BBC

Will a pill be enough to end the HIV epidemic?

PrEP has been hailed the scientific breakthrough to end the HIV epidemic but is this really true in a world filled with social inequalities? Dr Peter Keogh explores...

The news that a daily pill can protect us from becoming infected with HIV is momentous and many people have started to talk about PrEP as a ‘silver bullet’: the scientific breakthrough with the potential to end the HIV epidemic. But can any medical breakthrough, any pill, ever be enough to end an epidemic that has raged for over thirty years claiming the lives of 35 million people around the world?

The story of the struggle for PrEP in England shows that pills alone are not sufficient. The government needs to be persuaded that funding PrEP is worthwhile and we need to fight to make it available to those who need it. People also need to be educated about PrEP, they need to have confidence that PrEP will work and they need to know how to use PrEP so that it is most effective.

But there are more entrenched battles to fight.

Like many global epidemics, HIV does not affect all people equally. HIV has a disproportionate impact on poorer and less educated people and those from marginalised and stigmatised groups. Across the world, HIV lays the heaviest burdens on women, sex workers, gay and bisexual men and migrants.

We see this pattern in the UK where the two groups that make up the clear majority of HIV infections are gay and bisexual men and Black African migrants. Gay communities have long been the target of virulent homophobia, only recently gaining human rights that the rest of us take for granted: the right to marry and form a family and the right to protection from discrimination. Likewise, African migrant communities have borne the brunt of racism and xenophobia which has worsened in recent years with the UK’s ‘hostile environment policy’. Many have found themselves stripped of their rights when they arrived in the UK.

The evidence from Public Health has long shown that when people are subject to stigma and discrimination, when they are poor, when their rights are denied and when they feel powerless, they are less able to protect themselves and their loved ones from disease and ill health.  To be healthy, people need a basic income, education, independence, self-determination and their fundamental human rights guaranteed.

So, although drugs can help to control the HIV epidemic, they can’t really deal with the factors that fuel the epidemic in the first place. We have a pill that can stop us getting infected, a pill that can stop us getting ill and perhaps one day, we’ll have a pill that can cure HIV. But there will never be a pill that cures poverty, inequality, stigma, discrimination and human rights abuses and because of this, no pill will ever be enough to end the HIV epidemic.

So, what is needed, and what is the role of treatments like PrEP? Global health agencies like the World Health Organisation and UNAIDS have long recognised that dealing with stigma, poverty and inequality are as important as medical treatments in tackling the HIV epidemic.  In other words, PrEP will have little chance of reaching its potential if people don’t know about it, can’t afford it, are more concerned with feeding themselves and their families than they are about contracting HIV, feel powerless or simply feel that their lives aren’t worth it. But likewise, tackling stigma, discrimination and poverty on their own is not enough to end the HIV epidemic. We desperately need the pills too.

There is so much to celebrate in the world of HIV. Those of us living with HIV and successfully on treatments can expect a normal healthy life expectancy - and we can’t pass HIV on to our sexual partners. Those of us at risk for HIV through the sex we have and the people we love can protect ourselves with condoms and PrEP.  But we need to remember that this is just part of a bigger picture and it is this bigger picture that we must keep in our sights if we are ever to end the HIV epidemic.

HIV Drugs - Close-up on table

A new era for HIV?

How has HIV changed since the 1980s? OU PhD student, Tom Witney, explains and tells us about his research into HIV and relationships.

Where were you in the 80s?

00:41

When you think of the 80s what comes to mind? Maybe it’s shoulder pads, stonewashed  denim and questionable hairdos. Maybe it’s the music. Maybe it’s dramatic adverts featuring icebergs and tomb stones. Like many people, it was the first time I’d heard of HIV and AIDS, and I was terrified – I didn’t want to die from ignorance.


No longer a death sentence

...it’s possible to stop the virus replicating, allowing people to live with HIV.

Somehow the news in the late 90s of the first effective treatments and the dramatic drop in AIDS diagnoses passed me by and it wasn’t until much later that I learned that thanks to a combination of drugs (called antiretrovirals), it’s possible to stop the virus replicating, allowing people to live with HIV. In fact, now we know that if you have your HIV diagnosed promptly and are on treatment, you can expect to have as long, if not longer, a life than the rest of the population.


Can’t pass it on

HIV Drugs Gilead 701

HIV Drugs

Then, nearly 20 years after I first heard of HIV, I worked on a project to make doctors and community groups aware of new data that suggested effective treatment could reduce the chance of transmitting the virus. Everyone was excited that this could not only stop the virus spreading, but that it could end HIV stigma too: if you can live well and can’t pass it on, what is there to be frightened of?

Fast-forward to 2018 and although stigma hasn’t ended, the idea that someone who has a very low level of HIV in their system (so low that even the most sensitive test can’t find any, called by doctors an undetectable viral load) can’t transmit the virus has been proven beyond reasonable doubt and is sometimes summed up as U=U (or undetectable means untransmittable).


What does this mean?

The question of what these changes meant for the everyday lives of people living with the virus and their partners stayed with me. So when the opportunity to study this at The Open University arose, I jumped at the chance! Not only because the OU is a great place to learn, but also because at the OU, we’re committed to doing research that makes a difference in the ‘real world.’


Taking HIV away from the everyday

U=U logo

Copyright: i-base

In my research, I have been talking to gay men in partnerships where one partner is HIV positive and the other is HIV negative (sometimes called being in a magnetic, serodifferent or serodiscordant relationship). And, thanks in a large part to U=U, they have been telling me that life is pretty ordinary: aside from the daily medication the positive partner takes, HIV and fear of transmission play little part in their lives. The things they worry about are the same as anyone in a relationship: whose turn is it to make the dinner or take out the bins!

For some, there were still occasional worries, like whether HIV could make it difficult for them to move abroad. And HIV stigma is still present: most were careful about who they told about their different statuses. Because of this, they were all clear that more people need to know that HIV has changed and, while it’s still better to stay negative if you can, that’s easier than ever and there’s nothing to fear from HIV.


A new era of HIV?

A gay couple

Trent Kelley under Creative Commons BY-NC-ND 4.0 license

HIV hasn’t gone away but it has changed dramatically over the last twenty or so years.  We now know that people living with HIV on successful treatment are unable to pass the virus on. And with advances like PrEP (pre-exposure prophylaxis) it’s possible to use the drugs that treat HIV to stop people becoming positive in the first place. However, these developments raise a lot of questions for those of us studying HIV in society. How do these developments change the meaning of being HIV positive or HIV negative? How are they affecting people’s sexual, intimate and social lives? How will they affect the course of the epidemic? And what impact are they having on HIV stigma?

At the Open University, we’re committed to continuing to explore these and other questions around HIV. So what will HIV look like in 30 years? Will it still be with us or will it be a subject for historians? We will have to wait and see, but you can be sure that the world (and hairstyles) will be as different as today was from the 80s.


Meet the OU experts

Dr Peter Keogh, Professor of Health and Society, The Open University
Dr Peter KeoghSenior Lecturer in Public HealthVIEW FULL PROFILE
Dr Peter Keogh, Professor of Health and Society, The Open University
Dr Peter KeoghSenior Lecturer in Public Health

Peter is the Deputy Associate Dean for Research Excellence and a Senior Lecturer in the Faculty of Well-being, Education and Language Studies at the Open University. He is also the lead for the Reproduction, Sexualities and Sexual Health Research Group. 

His research focuses on the ways people with HIV and those at risk for HIV manage their sexual, intimate and social lives as the epidemic unfolds. In particular, he is interested in looking at the ways in which biomedical interventions (HIV treatments and treatments as prevention) interact with sexual and intimate lives and with questions of identity, citizenship and community/collectivity. Most recently, he has been exploring, the processes of biomedicalisation of HIV - a period which commenced with the introduction of highly effective antiretroviral treatments in 1996 and recently led to the introduction of pharmaceutical HIV prevention technologies such as pre-exposure prophylaxes (PrEP) and HIV Treatment as Prevention (TasP).

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