HIV treatment has transformed lives in the UK, but stigma lingers

by Hannah Revill, The Conversation

edited by Gaby Clark, reviewed by Robert Egan

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Nearly half a century has passed since the first recognized case of AIDS in the U.K. in December 1981. During that time, perceptions of HIV and people living with HIV have been transformed by medical advances and changing cultural attitudes. Yet the stigma created during the early years of the epidemic has proved much harder to leave behind.

The first years of the U.K. epidemic were characterized by fear and uncertainty. There was no effective treatment, and people diagnosed with AIDS often became seriously ill and died. HIV also became associated with communities that already experienced prejudice, particularly gay and bisexual men and people who inject drugs.

As part of my Ph.D. research, I interviewed LGBTQ+ people living with HIV about their experiences and how the condition affected their daily lives. One difference became particularly apparent. People who had lived through the earlier years of the epidemic often spoke about HIV differently from those diagnosed after effective treatments became available.

That divide is understandable because the medical reality of HIV has changed dramatically.

Beginning in 1996, effective combination antiretroviral therapy became widely used in the U.K. Antiretroviral therapy, usually shortened to ART, uses medicines to stop HIV from making copies of itself in the body. This allows the immune system to recover and means that people who are diagnosed and treated can now usually live long and healthy lives.

Treatment has also transformed the possibility of passing HIV on. When ART reduces the amount of virus in the blood to a level that standard tests cannot detect, and it remains suppressed, there is zero risk of transmitting HIV through sex. This is known as U=U: undetectable equals untransmittable.

For people who remember a period when HIV was widely understood as a death sentence, this represents an extraordinary change. But my interviews suggested that social attitudes have not always kept pace with medical science.

Popular culture representation

Popular culture has played an important role in shaping how HIV is understood. Films such as "Philadelphia" brought AIDS and discrimination into mainstream cinema, while British television has approached the subject in different ways. "Queer as Folk," first broadcast in 1999, deliberately focused on gay life without making HIV its defining story. More than 20 years later, "It's a Sin" looked directly at the AIDS crisis of the 1980s. Its impact extended beyond television: During its broadcast, orders for HIV tests rose sharply.

Public figures also challenged some of the fear surrounding HIV and AIDS. In 1987, Diana, princess of Wales, opened the first specialist AIDS ward in England. Her willingness to meet and touch patients was especially significant at a time when misconceptions about casual transmission were widespread.

Freddie Mercury's death from an AIDS-related illness in November 1991 similarly brought the epidemic into public view through somebody millions of people already knew. These moments did not eliminate stigma, but they challenged the distance that often existed between the public and people affected by HIV.

Government communication had a more complicated legacy. The 1986–87 Don't Die of Ignorance campaign was designed to inform the public about transmission and encourage safer behavior. Its leaflet was sent to households across Britain and provided practical information about how infection could be prevented. But the campaign also relied on stark images of tombstones, icebergs and death.

Government records show how deliberately urgent the messaging was.

For people who lived through that period, those associations could be difficult to shake. HIV became connected not only with illness, but with fear, secrecy and shame.

Continuing stigma

Some of those feelings remain visible today. Research into HIV-related stigma in the U.K. suggests that overt discrimination has declined since effective treatment became available, while fear of rejection, shame and stigma continue to affect some people living with HIV.

This was also apparent in my interviews. Several participants described anxiety about telling other people their HIV status, particularly when dating or beginning a new relationship. Some encountered stigma within LGBTQ+ social and dating spaces, even though effective treatment meant they could not transmit HIV sexually once their viral load was undetectable.

Those diagnosed earlier in the epidemic could also carry memories formed when HIV meant something very different medically. The scientific facts may have changed, but feelings developed during years of fear and loss do not automatically disappear when treatment improves.

Life with HIV in the U.K. today is radically different from life with HIV in the 1980s. Effective treatment can protect health and prevent sexual transmission. Yet the experiences described in my research suggest that the cultural memory of the AIDS crisis still influences disclosure, relationships and how some people living with HIV see themselves.

More than four decades after the U.K. epidemic began, medicine has transformed what it means to live with HIV. The continuing challenge is ensuring that public understanding catches up.

Key medical concepts

HIV

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Infectious diseasesHIV & AIDSPsychology & Mental health Provided by The Conversation Who's behind this story?

Gaby Clark

MA in English, copy editor since 2021 with experience in higher education and health content. Dedicated to trustworthy science news. Full profile →

Robert Egan

Bachelor's in mathematical biology, Master's in creative writing. Well-traveled with unique perspectives on science and language. Full profile →

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