What the AIDS Pandemic Can Teach Us about Living with Covid-19

·14-min read
Photo credit: David Levene
Photo credit: David Levene

Before the blast, it’s hard to make out the mountain. But we know it’s there: we see its outline, a ghostly void against the night sky. Then it comes, the detonation, and rocks fly, fire lights up the scene, and the film cuts to a close-up of grubby hands wielding a digger.

Milton opened Paradise Lost with Lucifer’s fallen angels carving into the underworld with pickaxes and spades; Wilfred Owen used the image of “dark pits” to evoke the agonies of war. To the Romantic English imagination, mining has long served as a shorthand for the horrors of Hell. And on British television screens, one evening in 1987, here it was again, that sinister vision, repurposed in the service of public health.

Half a decade had passed since the Royal Brompton Hospital logged the first confirmed British death from AIDS. By the middle of 1987, 939 cases had been recorded in the UK; many more went undiagnosed. When the Thatcher government belatedly decided to inform the wider public of the fast-spreading illness that had already claimed thousands of lives around the world (and was making its lethal progress in at least five million others infected with HIV), it turned to Nic Roeg, the director of the horror movie Don’t Look Now.

The objective was simple: to inspire fear. Roeg had been “specifically chosen for his doom-and-gloom sci-fi aesthetic”, the campaign’s designer, Malcolm Gaskin, told the Guardian in 2017. And so Roeg’s public information film dutifully presented the Coronation Street audience with the violent destruction of a mountain, faceless miners and, to the chiming of Hammer Horror church bells, the deadly acronym being chiselled into a headstone. In its final moments, a flyer falls into frame from somewhere off-camera, revealing the slogan: “Don’t die of ignorance.”

It was public messaging through terror – closer to the shock tactics of Bill Murray’s Frank Cross in Scrooged than the cool, Julian Opie-style illustrations of mask-wearing protocol that have accompanied the COVID-19 pandemic. “That tombstone cast a long shadow, and we’re still living in that shadow,” the campaigner Matthew Hodson told me recently. Now the director of AidsMap, a charity providing information about HIV and AIDS, Hodson came out as gay to his mother in 1985, when he was 17. “She used to work as an occupational therapist, and many of her clients were living with HIV. Many of them died of AIDS. So, the first thing my mother said to me when I told her I was gay was: ‘I expect you’ll get AIDS, then.’”

For Hodson, who had lost his virginity at 15, it was the last thing he wanted to hear. Yet he understood that her reaction “came from a place of fear”. “It sounds horrible – and it was horrible. But she had known lots of people who’d died.” This was, he reminded me, “the mid-1980s, before there was any effective treatment”. HIV meant AIDS, which in turn meant death, painful and often disfiguring, from infections and cancers that grew in bodies stripped of their immune response. And a couple of years later, Roeg’s TV advert would underscore that reality in the most schlocky, sensationalist terms.

Hostile Environment

The “Don’t die of ignorance” campaign offered little but despair to the more than 20,000 British residents who already carried HIV in 1987, and it contributed to the further stigmatisation of the most afflicted communities at a time when they needed compassion, not fear. Yet it was highly effective. A Gallup poll that year showed that 98% of the public had been made aware of how HIV was transmitted. Within three years, new diagnoses, which exceeded 3,000 in 1985, dropped by a third and condom use had increased by a fifth.

Photo credit: Science & Society Picture Library
Photo credit: Science & Society Picture Library

The campaign, in other words, was flawed but necessary. Or, at least, it was the best that could be hoped for at a time when reactionary attitudes were holding back a fully adequate response. On 4 July 1982, the 37-year-old Hansard reporter Terrence Higgins died of an AIDS-related illness. Soon afterwards, his friends and partner, Rupert Whitaker, formed the charity that bears his name; by the following year, the Terrence Higgins Trust (THT) had become one of the most prominent groups spreading awareness of AIDS and providing support for those with the disease. While the tabloids moralised about what they saw as a “gay plague”, magazines aimed at teenagers began to cover the crisis in earnest, and home-made pamphlets created by activists started to circulate in pubs and businesses in the worst-affected areas.

But as the crisis took hold, the state and its wider apparatuses initially chose to drag their feet. Sir James Anderton, the chief constable of the Manchester Police, announced in 1986 that the predominantly gay victims of AIDS were in a “human cesspit of their own making”. Prime Minister Margaret Thatcher privately supported him. Mark Addison, her private secretary, told colleagues that she should “stay clear of AIDS”; meanwhile, finding the notion of gay sex unseemly, she repeatedly attempted to tone down urgent health warnings, groundlessly suggesting that such information might “fall foul of the Obscene Publications Act”.

By 1988, the government was declaring a culture war on LGBTQ people with the introduction of Section 28, which villainised homosexuality by banning its positive representation in schools and local authority services – even as the health of the British public depended on more, not less, information reaching high-risk groups. Perhaps the Tory MP Peter Bruinvels spoke for many in his party when he said: “I do not agree with homosexuality. I think that Clause 28 will help outlaw it and the rest will be done by AIDS, with a substantial number of homosexuals dying of AIDS. I think that’s probably the best way.”

Against the Tide

It was in this hostile environment that the then health secretary, Norman Fowler, worked to turn the tide on an ever-deepening crisis. Circumnavigating internal opposition and following the emerging science, he pushed through the 1986-87 public information campaign of which Roeg’s tombstone was a central part. Flyers were sent to 23 million homes, adding scientific meat to the house-of-horrors bones of the televised film. Against the advice of his colleagues, his department created clean needle exchanges for injecting drug users. And, reinforcing the message of Roeg’s film, a poster campaign emphasised that AIDS could kill anyone, regardless of their sexuality. It was everybody’s problem.

Fowler, a man of compassion who was photographed shaking hands with an AIDS patient months before Princess Diana did the same, recently told the Guardian that there was “no question at all” that his own government lacked empathy towards those hardest hit by the disease because its primary victims were gay men. Fighting his lonely battle, he was a hero, but a conflicted one. He, too, voted for the punitive Section 28 – though he now recalls it as a “terrible mistake”. Still a passionate advocate for those living with HIV and AIDS, Fowler published a book about the continuing global struggle in 2014. It was titled AIDS: Don’t Die of Prejudice. What a difference that one-word revision of the old slogan makes. Ignorance can kill, it's true. But prejudice is just as lethal.

All in This Together

It has been 40 years since AIDS was first clinically reported in the US, on 5 June 1981. Long gone are the days when an AIDS patient could be detained in enforced isolation in a hospital – a dehumanising experience dramatised in Russell T Davies’s Channel 4 drama It’s a Sin. The majority of people with HIV in England, if diagnosed early enough, can now expect a near-normal life expectancy. And with the increasing availability of new medicines such as pre-exposure prophylaxis (PrEP), which reduces the risk of contracting HIV from sex by as much as 99%, eliminating HIV transmission altogether within the coming decades is now a realistic goal. It has taken almost 33 million deaths worldwide to reach this point.

Yet it is premature to consign AIDS to the past. In the UK, 94% of those living with HIV have been diagnosed and 97% of those on treatment have an undetectable viral load. However, around 3,000 men and women are newly found to carry HIV each year. In 2019, 181 people had AIDS when they were tested – it was too late for them. More than 68,000 Britons receive HIV care today. If access to effective medication were ever compromised, the virus would easily progress in those who carry it. And without a sustained commitment to eradicating the threat and to providing care for those affected, the epidemic could resume the lethal course it was on before modern therapies were introduced in 1997.

“We always run the risk of opening ourselves up to new infections when we become complacent,” Tom Hildebrandt, an associate professor of social policy at the LSE, told me. “Economists call this prevalence elasticity – as prevalence goes really high, people become super-vigilant and you get a drop in cases. But as you get a drop in prevalence, people become less vigilant, then they bounce back up again.” According to Hildebrandt, this “absolutely happened” following the dip in new HIV infections after the normalisation of condom use. He also pointed to the similarities of the situation playing out with COVID-19 and its lockdowns – which have often been followed by an over-enthusiasm to return to the old normal. “Any time prevalence goes down, we have to be very careful of not letting up on the gas,” he warned.

Photo credit: Joe / Alamy Stock Photo
Photo credit: Joe / Alamy Stock Photo

The coronavirus pandemic and the spread of AIDS are very different crises, yet several parallels suggest themselves. In both cases, the response in much of the world seemed to happen in slow motion, with confusion rife about the precise nature of the diseases and how they could be transmitted. In the early years of AIDS, alternative facts circulated about the risks of kissing, handshakes and toilet seats, the notion that it affected only the “4-Hs” (homosexuals, haemophiliacs, heroin addicts and Haitians), and so on; while more recently, efforts to tackle COVID-19 were hampered by the variance in the responses of governments and officials around the world – some of whom went hard with lockdowns and masks, while others politicised such strategies as signs of weakness, or resisted lockdown and floated fantasies of vaccine-free herd immunity.

Both AIDS and the coronavirus have also had a disproportionate impact on the West’s marginalised communities. Since its emergence in the UK, AIDS has affected far more gay men than any other group; in 2019, sex between men was the probable cause of 1,700 exposures, while heterosexual contact accounted for 736. Black Africans represent less than 2% of the UK population, yet comprise a third of all those diagnosed with HIV today. Meanwhile, as COVID-19 progressed in 2020, it emerged that black men and women were three times as likely to die from it than their white counterparts. A survey conducted last December found that vaccine hesitancy, too, is highest among the UK’s black, Bangladeshi and Pakistani populations – a symptom of the inadequacy of health messaging in reaching minority groups.

Without Exception

In the 1980s, those in government initially looked upon the AIDS crisis with distaste because so many of its victims were gay men. They were deemed, in effect, not to matter. Last year, the Johnson government seemingly made a similar assessment of those with “pre-existing conditions” – a designation extending from people with asthma to diabetics and sufferers of dementia – as well as those who were simply old and infirm. In the rush to free up acute hospital beds, more than 25,000 vulnerable elderly patients were discharged without testing into care homes before mid-April 2020, where COVID-19 deaths surged to more than 17,400 by summer – almost half of the UK total at the time.

Downing Street denied that it had overseen such a debacle, contradicting its own data. It denied a Sunday Times report claiming that Boris Johnson’s then chief advisor, Dominic Cummings, had outlined the government strategy in February 2020 as: “Herd immunity, protect the economy, and if that means some pensioners die, too bad.” And it also denied a Daily Mail report that claimed Johnson had said, in November 2020, “No more fucking lockdowns – let the bodies pile high in their thousands” – an allegation supported by Cummings’s public testimony in late May. Regardless of who you believe, one thing is clear: disregard the suffering of one group and the whole nation ultimately suffers.

Public health is a collectivist enterprise. As the coronavirus pandemic has demonstrated time and again, it must encompass all members of society – and in a globalised world, all members of humanity. Apathy fuelled by delusions of exceptionalism and bigotry was a killer in the 1980s, slowing the response. It continues to kill.

Look at HIV/AIDS in the global context and this becomes clear. Though its transmission levels are more or less under control in the affluent West, it remains one of the world’s most lethal infectious diseases, claiming the lives of almost a million people each year. In several countries across Sub-Saharan Africa, it is the leading cause of death, accounting for a quarter of all fatalities. Yet as people die in their hundreds of thousands, high-income countries have reduced funding in recent years for the HIV response in poorer nations; a massive 7% decrease was reported between 2015 and 2016. And as other nations bolster their foreign aid budgets in the wake of COVID-19, the UK has chosen to slash its annual commitment from 0.7% to 0.5% of gross national income.

AIDS will only cease to be a threat when the response to it is globally co-ordinated, sustained and immune to this kind of prevalence elasticity in foreign aid. And as wealthy countries emerge from their domestic coronavirus crises, efforts – and, crucially, resources such as vaccines – must be directed to flashpoints in regions less equipped to handle the disease. US President Joe Biden’s support for waiving COVID-19 vaccine patents is a positive step. Viruses don’t respect sovereignty or state borders. There’s no use thinking, “We’re OK, so let’s move on…”

Busting Myths

The obvious corrective for such inhumane attitudes, whether they affect the global or local population, is empathy. One afternoon in November 1991, the LA Lakers basketball player Earvin “Magic” Johnson – a much-loved, heterosexual sports star – stood before a room full of journalists and announced his retirement “because of the HIV virus that I have”. His revelation – as well as the AIDS-related death of a haemophiliac teenager called Ryan White the previous year – had the effect of universalising the crisis in the US, a country whose government had hitherto largely treated it as an irrelevance or a joke. (Ronald Reagan, the president when AIDS first emerged, refused even to mention its name in public until 1985.)

Such moments of dawning fellow feeling are welcome, galvanising support for effective, society-wide responses – yet they also speak of the tragic limitations of our compassion. What does it say of us when we are moved to action only by the plight of those we identify with tribally? Hildebrandt at the LSE made it clear that, as a Niebuhrite pragmatist, he was not waiting for a “kumbaya moment where everyone becomes empathetic about people who are less fortunate than us. I think the best we can do is minimise the opposition to helping people who are disproportionately affected.”

And so, those such as Takudzwa Mukiwa, the head of social marketing at the Terrence Higgins Trust, continue in their work against the backdrop of “cuts in statutory funds”, which have afflicted HIV and AIDS advocacy since austerity policies began to bite in 2012. With less money, he and others rely on ingenuity to help the marginalised communities still living through a crisis that the majority now assumes is a thing of the past. Mukiwa, who pioneered digital schemes that apply the marketing strategies of money-transfer companies to offer HIV services to black Africans in the UK, told me he was optimistic about the current government’s commitment to step up its work in HIV prevention. Yet he also insisted: “For us to make progress, we have to have a lens on equity, to make sure that we are not leaving anyone behind.”

Elsewhere in London, Matt Hodson of AidsMap, who was diagnosed with HIV in 1998, fights to challenge “the stigmas still associated with living with HIV”, which he believes are the “largest single barrier to testing”. He does so through his charity, and also by dispelling myths about the disease by publicly living a fit, healthy and ordinary life. In the UK, at least, HIV may no longer be the death sentence that Nic Roeg’s headstone warned of. But the battle against AIDS continues – as I suspect it will for COVID-19, for many years to come.

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