The British AIDS activists you might not know about

This World AIDS Day, learn how the ACT UP movement allows British activists to draw attention to the HIV/AIDS epidemic using protest and creativity.

On December 1, 1988, AIDS activists marked the first World AIDS Day by releasing 1,000 balloons, symbolising the approximate number of UK AIDS diagnoses the previous year.

“I was in my early 20s then,” says Terrence Higgins Trust Chief Executive Ian Green, “but as a young gay man, AIDS loomed large in my life. In contrast, many people were largely unaffected by AIDS and could ignore it.”

That World AIDS Day action was one of the first British protests raising attention around the disease. It began a tradition of creative AIDS-related protests in the UK that continues to this day.

The ACT UP (AIDS Coalition to Unlock Power) movement has a particularly prominent role in this tradition, staging protests still inspirational to AIDS activists today.

The ACT UP story begins in New York City where, by March 1987, AIDS had killed over 16,000 Americans. Four groups were particularly affected: Gay men, intravenous drug users, people who had had blood transfusions and Haitians.

In reaction to this, AIDS activists founded ACT UP. Its protests included throwing cremated remains onto the White House lawn or staging “die-ins” where members played dead in public places.

ACT UP New York targeted the US government, its Food and Drug Administration and the pharmaceutical company with the patent to first AIDS drug azidothymidine (AZT).

They also propagated the movement's most famous symbol. The Nazis marked homosexual men in concentration camps using a downward-facing pink triangle. In the late 1980s, the Silence = Death Project (later incorporated into ACT UP) made the triangle upward-facing, putting it onto posters linking government silence and AIDS deaths.

Rob Archer, a founder of ACT UP groups in London and Edinburgh, explains what these posters meant to him: “It meant you have to speak out – people were dropping like flies, but nothing was happening.”

The British government was more reactive to HIV/AIDS than the American administration. In 1986, they launched their AIDS: Don't Die of Ignorance campaign with TV adverts and leaflets.

Per Rob, the “scare campaign...did slow down the spread at least in the short term.”

The campaign prevented transmissions, but did not prevent stigma against the LGBT community and drug users.

After forming in 1988, one of ACT UP London’s first actions was to draw attention to stigma via die-ins. One of their first was outside The Sunday Telegraph offices, protesting articles about the gay community's link to AIDS.

Then, they floated condoms into London’s Pentonville Prison after the government refused to offer prisoners contraceptives. This protest was later repeated by other UK ACT UP groups.

While the New York group had targeted those who made AZT, ACT UP London went to their shareholder’s meeting. “It was the first time the company saw the anger of people living with AIDS,” says Rob.

In December 1989, the group was part of the World AIDS Day march on Westminster. This march brought AIDS activists from across the country together – and they returned home to form ACT UP groups in cities including Manchester, Norwich and Edinburgh.

An ACT UP Norwich pamphlet showed its activities: “lying in the road, telephone-blocking, fax-zapping, letter-writing, informing, condom-dropping, researching, lobbying, talking, shouting, screaming, stickering, misbehaving, lying-in, dying-in, painting, retaliating, creating and having fun.”

As HIV/AIDS drugs became available, ACT UP groups began to disband. By the mid-’90s, says Rob, “I don’t think there was anybody who had AIDS in the group any more…It had run its course.”

ACT UP London reformed in 2014 for multiple reasons. The group’s spokesperson Dan Glass explains there was, “a rise in transmissions among certain demographics before PrEP (pre-exposure prophylaxis), the cuts to education, prevention and support services, plus the general belief that AIDS was something solved in the ’80s.”

In November 2014, Public Health England reported an all-time annual high of UK HIV diagnoses in the previous year. The Terrence Higgins Trust reports that, at the most recent estimate, 106,890 people are living with HIV in the UK, with men who have sex with men and black African people disproportionately affected.

For Rob, the revamped ACT UP’s biggest success was its campaign encouraging the NHS to make PrEP available to all at-risk groups. “What the new group’s done with PrEP has been amazing,” he says.

When ACT UP was first formed in the 1980s, HIV was a death sentence. Now, people with HIV on antiretroviral therapy have undetectable amounts of the virus in their blood, allowing them to live healthy lives and not transmit it. Meanwhile, PrEP reduces peoples’ chances of getting HIV.

According to Dan, the fight is not over: “ACT UP's mission has always been ‘until there is health care and a cure for all.’ And, we're not there yet.

“An issue we focus on is the discrepancy between who has access to medication and who doesn't. It's incredible PrEP’s now available. But that's mainly just to the white gay male community.

“It's more than pills into bodies. We have to look at the whole holistic healthcare system.”

British ACT UP groups remain inspirational to contemporary AIDS activists. “What is inspiring about ACT UP,” says Dan, “is its organising skills, its intersectionality and its creative toolkit.”

Fraser says of the group: “Groups like ACT UP…had a huge impact and we stand on the shoulders of those who fought for government action at the height of the AIDS crisis.

“We’ve achieved incredible things in our fight against HIV, but it’s been a fight almost every step of the way. A fight for funding, a fight for research, a fight for our lives to be valued. Now we’re aiming to end new HIV cases in the UK by 2030 and that’s because of everything achieved in those darkest of days.”

The ACT UP movement's iconography also remains inspirational. This year on Drag Race UK, drag artist Cheddar Gorgeous brought attention to HIV/AIDS stigma via a pink triangle catsuit with the words “silence = death” written on it.

Asked why she decided to draw attention to the work of ACT UP, Cheddar says, “we’ve entered this age where we think the job [LGBT rights] is done. But anything given can be taken away.

“The ACT UP movement goes beyond a discussion of HIV. It’s about the association of homosexuality with shame and contagion which underpins a lot of homophobia in our society.

“It’s about standing with people who are positive and fighting stigma and ensuring HIV holds nobody back.”

Sources of support related to HIV are available via the BBC Action Line.

RuPaul’s Drag Race series 4 is streaming now on BBC iPlayer.

Article originally published on 3 November 2022.