Like HIV, we’ll look back on coronavirus as cautionary tale we ignored until it was too late

It’s 2020 and we’re fighting a global health crisis with lockdowns and quarantines, social distancing and shielding. People’s lives have been turned upside down. Loved ones and livelihoods lost. Healthcare workers are distancing themselves from their families. Dangerous misinformation spreads wildly. Terminology like “patient zero”, “R” and “super spreader” are now part of our daily parlance.

Sound familiar?

For those of us old enough to live through – and lucky enough to survive – the HIV/AIDS crisis of the 1980s-90s, it certainly should. The parallels are beyond striking, both in terms of the fear that pervades but also the community compassion which is and will remain so important in the coming months. So what did we actually learn from the HIV/AIDS pandemic?

Panic, ignorance and fear were early features in both crises. And all were driven by misinformation. In the early days, if you were even suspected of being HIV positive you could be shunned by friends, family, or employers. It was an all too common belief that simply being around an infected person was a death sentence. Such was the ignorance and misunderstanding that many thought HIV could be caught from toilet seats, by using the same cutlery or crockery, or that straight people did not get HIV.

Luckily, no one ever had to contend with the idea that 5G or other infrastructure was spreading the disease, though myths abound that both were man-made. It doesn’t bear thinking about what kind of impact a concerted misinformation campaign waged over social media could have had during the AIDS pandemic. Gargling saltwater, ingesting bleach or using UV light are to fighting Covid-19 what herbal remedies and sex with young virgins were to fighting HIV – wrong and dangerous.

Of course, there are differences between the viruses. Covid-19 passes indiscriminately even through the air and has disproportionately affected the elderly and the already unwell.

Regardless of who is most at risk, in any pandemic it is the human response that most matters. Intelligent thinking at the outset of a pandemic is just as important as the compassionate moves we make as human beings, whether that’s supporting someone as they fight the illness or honouring them with dignity in end of life care.

Seeing the global community working together and local communities mobilise to do their bit to tackle the virus whether by staying home, checking in on at risk-neighbours or volunteering reminds us of the good in humanity.

In the future we may come to take this kind of response as a given. It definitely was not the case in the 1980s. A slow response by the British government meant that by 1987 – when it launched its public health campaign Don’t Die of Ignorance, the largest such campaign at the time which, though controversial, brought the conversation to the fore – six years had already passed since the first HIV case was reported in the UK. By the end of 2018, there have been at least 160,493 HIV infections and 24,610 deaths recorded in the UK though the real figures are believed to be much higher for a variety of reasons, including families asking for any mention of HIV to be removed from death certificates.

We cannot help but see the plus ça change of the world. The nurse who held a dying patient’s hand as they died alone has been replaced by the nurse who holds a dying patient’s hand while video-calling their loved ones.

Some of those whose bodies were wracked by the infections brought on by HIV as their immune systems depleted were buried beneath concrete at lonely funerals. Today, people who die from Covid-19 are buried just as lonely, with tiny numbers of mourners allowed to attend. In New York for example, “unclaimed” Covid-19 bodies are buried in mass graves on Hart Island. Elsewhere on the island, secluded and buried singularly at the most southern point, are those who died of HIV/AIDS in the 1980/90s (when it became clear HIV/AIDS could not be spread from cadavers, victims were interred in other mass burials).

Despite clear failings, there were reasons even then to be hopeful. For those of us who saw our friends and loved ones succumb to HIV 40 years ago, we also saw good. In some of the most trying circumstances, people were fighting an invisible and novel disease that the world knew nothing about, against the background of hateful and ignorant campaigns people still displayed immense acts of bravery, compassion and love.

Activists who were themselves infected created institutions like charities, hospices and education centres to help others, amounting to small acts of heroism, and some of which still exist today. The community mobilisation to support one another during the covid-19 outbreak has been just as inspiring.

We may have failed to learn the lesson from 40 years ago that we should have acted quicker as soon as the virus appeared, but we have not forgotten the importance of humanity, compassion and warmth. If there is one thing to inspire us through this pandemic, it is how people across the country have stepped up to help, just like they did 40 years ago and how they doubtless will if called on again.

Paul Coleman is founder of the National HIV Story Trust, a registered charity set up by a group of volunteers to ensure the true history of the HIV/AIDS pandemic of the 80s and 90s is not forgotten

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