A Positive Life: HIV from Terrence Higgins to Today

In the final episode of A Positive Life, Sam Smith explores the experiences of young people in the UK who were born with HIV, and looks at what's next in the ongoing fight to end the HIV epidemic.

When we think about people who have lived with HIV for a long time, we often think about older people who lived through the AIDS crisis of the 1980s and 90s. People who remember the days before effective HIV treatments were discovered, and how the world changed when they finally arrived in 1996. But there's a whole generation of young people in the UK who have had HIV from birth. Many of them have lived with the virus for the same amount of time as much older people who we'd now consider long term survivors of the epidemic.

In this episode, we hear from Mercy Shibemba. She's 23 years old and has lived with HIV her entire life. She was born in the time after life saving HIV treatments had been discovered, which means she's always had access to medication that makes HIV a completely manageable health condition. So HIV shouldn't have a big impact on her life. But when she was told about her HIV status as a teenager, she discovered that her life was going to be deeply impacted anyway - because of the stigma that still persists around this virus.

Mercy shares how stigma around HIV forced her to live a double life, like a "really unglamorous Hannah Montana", and put emotional barriers between her and many of the people she was closest to in her life. She explains how the experiences of young people differ from those who acquire HIV later in life. And she shares how she's working to resist the impact of stigma in her life, and the lives of everyone living with HIV today.

As this series draws to a close, we hear from people we've met throughout the series, reflecting on what still needs to be done as we work to end the HIV epidemic once and for all. How do we make sure no one is left behind as we make progress towards that goal, no matter how marginalised they may be, or where in the world they live?

In "A Positive Life", singer Sam Smith presents stories of HIV in the UK over the last forty years. They hear from people who remember the earliest years of the AIDS crisis; the grassroots activists and marginalised communities who came together to fight stigma and raise public awareness; and a new generation living with effective treatments for HIV in a radically-changed world.

An Overcoat Media production for BBC Sounds

Producer: Arlie Adlington

Sam Smith explores HIV stigma and misinformation in the Noughties, and how people from marginalised communities are still being left behind today, even as huge strides are made against the virus.

In the early 2010s, nearly three decades after the first cases of HIV in the UK, we had life saving treatments for people being newly diagnosed, and medicines like PEP - and later PrEP - that meant that people could have sex with almost no risk of acquiring HIV. But even with all the information and treatments available - even up to today - there are still people in the UK being left behind.

In this episode, we hear from Sham Waraich, who grew up in a Muslim family in Rochdale, Greater Manchester. Sham talks about his own multiple, overlapping identities as a queer, South Asian man, living with HIV.

Both Sham and Sam share how a fear of HIV runs deeply through the queer community. And we learn how on-going misinformation and stigma - even among communities with the most experience of HIV - means a diagnosis can still be a frightening and isolating experience. But it doesn't have to be that way.

And, as we step back and appreciate just how much progress has been made in the fight against HIV, we also consider which groups are benefiting most from the successes of recent years - and explore why it is that people from marginalised groups are less likely to see rates of new HIV transmissions going down, and less likely to be able to stay on treatment after they're diagnosed.

In "A Positive Life", singer Sam Smith presents stories of HIV in the UK over the last forty years. They hear from people who remember the earliest years of the AIDS crisis; the grassroots activists and marginalised communities who came together to fight stigma and raise public awareness; and a new generation living with effective treatments for HIV in a radically-changed world.

An Overcoat Media production for BBC Sounds

Producer: Arlie Adlington

Sam Smith explores the ways HIV affects women and child-bearing parents, and the ongoing fight to end gender inequality and stigma within the fight for greater AIDS awareness.

By the late 1990s, new, effective treatments had dramatically changed the implications of a positive HIV diagnosis. But that remarkable news was still taking time to filter through - both to the general public and even to some healthcare professionals - and people with HIV were still regularly subject to misinformation and stigma.

Susan Cole was a mother of two when she received the news she was HIV positive almost by accident - after a routine immigration medical check at the time of her moving to the USA. It was only after spending weeks researching new advances that she realised she could be alive to see her children grow old.

Sam hears the story of how Susan has gone on to live - in her words - a “full and fabulous life”: helping to spread independent, accurate and accessible information about HIV and AIDS. We also find out about how Susan has gone on to have a third child - and from health researcher Bakita Kasadha about the huge advances regarding pregnancy and breastfeeding / chestfeeding for women and other parents with HIV.

Bakita also unravels the specific implications of an HIV-positive diagnosis for women, and the ongoing challenge to end gender inequality within the fight for greater HIV awareness and against stigma.

In “A Positive Life”, singer Sam Smith presents stories of HIV in the UK over the last forty years. They hear from people who remember the earliest years of the AIDS crisis; the grassroots activists and marginalised communities who came together to fight stigma and raise public awareness; and a new generation living with effective treatments for HIV in a radically-changed world.

An Overcoat Media production for BBC Sounds

Producer: Arlie Adlington

Sam Smith explores how the 1990s brought new, effective treatments for HIV that changed people's lives forever - and hears how peer support networks were a lifeline for women living with HIV in the era before these life saving treatments became available.

When Angelina Namiba was diagnosed with HIV in the early 1990s, she didn't know any other women with the virus. In this episode, she tells the story of how she broke through her isolation and fear to become one of the UK's most prominent advocates for women with HIV - supporting and amplifying their stories and experiences with the charities like Positively UK and the 4M network, a peer-mentoring organisation led by migrant women, that works with mothers with HIV.

Through the first decade and a half of the HIV epidemic, a positive HIV test usually meant you expected to die. But in 1996, life saving treatments were finally discovered, changing HIV forever.

Sam hears from people who were there, about what it was like to see these effective treatments arrive - including how some people struggled to adjust, after years living with a hugely stigmatised virus that they believed would eventually kill them.

In "A Positive Life", singer Sam Smith presents stories of HIV in the UK over the last forty years. They hear from people who remember the earliest years of the AIDS crisis; the grassroots activists and marginalised communities who came together to fight stigma and raise public awareness; and a new generation living with effective treatments for HIV in a radically-changed world.

An Overcoat Media production for BBC Sounds

Producer: Arlie Adlington

Special thanks to Hamzaa for letting us use her song 'Someday' in this episode.

Sam Smith explores how more than a thousand haemophiliacs in the UK acquired HIV through their treatment - in what's come to be known as the contaminated blood scandal.

At the same time that the queer community was fighting the devastation and stigma of HIV in the 1980s, another community was also being profoundly affected by the AIDS crisis. Through the 1970s and 80s, around a quarter of all haemophiliacs in the UK - more than 1200 people - acquired HIV through blood products given to them as treatment for their condition.

Today, fewer than 250 of those people are still alive.

Mark Ward was just a child when he was put on a new treatment, Factor VIII concentrate, to help manage his haemophilia - a rare bleeding disorder which stops a person's blood from clotting properly. In this episode, Mark tells us how he and his parents came to learn he had acquired HIV and hepatitis from this treatment. He shares personal insights from the long struggle for justice that he, and thousands of others like him, have faced to see accountability for this scandal.

As we hear about the claims being investigated by the public inquiry into infected blood that's happening right now, we also learn how stigma was used to divide those impacted by the HIV epidemic in the 1980s - as haemophiliacs were labelled "innocent victims", and gay men were blamed for their infections.

In "A Positive Life", singer Sam Smith presents stories of HIV in the UK over the last forty years. They hear from people who remember the earliest years of the AIDS crisis; the grassroots activists and marginalised communities who came together to fight stigma and raise public awareness; and a new generation living with effective treatments for HIV in a radically-changed world.

An Overcoat Media production for BBC Sounds

Producer: Arlie Adlington

Sam Smith explores how AIDS became headline news in the 1980s, and how communities came together to raise public awareness - and fight a growing tide of fear and stigma.

Terry Higgins' death in 1982 was one of the first in the UK from an AIDS-related illness. In the years that followed, a steady drip of information - as well as misinformation - slowly spread about HIV.

Much of the early, pioneering work around HIV was done by volunteer organisations from within the queer community, like the London Lesbian and Gay Switchboard and the Terrence Higgins Trust - while many of their members simultaneously faced their own ill health, and the deaths of friends and loved ones.

The people most affected by HIV faced horrendous prejudice: in 1986, the Chief Constable of Greater Manchester, James Anderton stated publically that gay men, drug users and sex workers were "swirling about in a human cesspit of their own making."

The British government eventually launched one of the biggest public information campaigns in UK history - with the slogan Don't Die Of Ignorance. It delivered facts about HIV onto TV screens and onto the doorsteps of every household in Britain. But it also stigmatised the condition even more.

Sam Smith discovers what it was like to live through that period from writer Juno Roche, Bill Smart who worked in Manchester's gay bars, and Lisa Power, a former volunteer at Switchboard and one of the founders of Stonewall, about how they brought people from the queer community together to share information - and support those who were living with HIV in a time before effective treatment.

In "A Positive Life", singer Sam Smith presents stories of HIV in the UK over the last forty years. They hear from people who remember the earliest years of the AIDS crisis; the grassroots activists and marginalised communities who came together to fight stigma and raise public awareness; and a new generation living with effective treatments for HIV in a radically-changed world.

An Overcoat Media production for BBC Sounds

Producer: Arlie Adlington

Sam Smith explores Terry Higgins' life in 1970s and 80s London. His closest friends remember his unforgettable character, and a community on the edge of the AIDS crisis.

Like many queer people of his generation, Terry Higgins moved from his small hometown to a big city. In London, Terry found a thriving gay nightlife scene, a supportive community of friends, and a place he could be free.

But in 1982, rumours of a "gay cancer" started to emerge from the USA. And Terry suddenly fell ill.

Sam Smith learns from some of Terry's closest friends and loved ones about his remarkable character and approach to life - including Rupert Whitaker, Terry's partner at the time of his death, and fellow Welshman Martyn Butler, who would subsequently found the Terrence Higgins Trust with Rupert and others.

In "A Positive Life", singer Sam Smith presents stories of HIV in the UK over the last forty years. They hear from people who remember the earliest years of the AIDS crisis; the grassroots activists and marginalised communities who came together to fight stigma and raise public awareness; and a new generation living with effective treatments for HIV in a radically-changed world.

An Overcoat Media production for BBC Sounds

Producer: Arlie Adlington

Terrence Higgins was one of the first people in the UK to die of an AIDS-related illness. But Terry also lived. Sam Smith explores his early life as a young gay man in Wales.

In "A Positive Life", singer Sam Smith presents stories of HIV in the UK over the last forty years. They hear from people who remember the earliest years of the AIDS crisis; the grassroots activists and marginalised communities who came together to fight stigma and raise public awareness; and a new generation living with effective treatments for HIV in a radically-changed world.

Sam begins our series with the story of someone who's no longer around to tell it themselves.

Many people will know the name of Terry Higgins because of the way he died - one of the very first people in the UK to die of an AIDS-related illness, in 1982. After Terry's death, his closest friends set up a charity, the Terrence Higgins Trust, in his memory; it's gone on to become one of the longest-running HIV charities in the world.

But we almost never hear about Terry's life - and the remarkable person that he was. Sam takes us to Terry Higgins' birthplace in West Wales, as we meet the people who knew him as a young man. As we find out about Terry's character and world, Sam explores what it would have been like to grow up as a young gay man in a small community in the 1950s and 60s - a time when homosexuality was illegal, and conservative attitudes were widespread.

An Overcoat Media production for BBC Sounds

Producer: Arlie Adlington

Sam Smith presents stories of HIV in the UK over the last 40 years; beginning with the life of Terrence Higgins, one of the first British people to die of an AIDS-related illness.