openDemocracyUK: Opinion

I lived through the AIDS crisis: like then, citizens must take control

In the 1980s and '90s, AIDS taught us to look after each other, put human dignity first and insist that governments step up. This is no time to defer to power.

Jonathan Cooper
17 April 2020
ACT UP (AIDS Coalition to Unleash Power) "die-in" on Fifth Avenue, New York, in June 1990
ACT UP didn't take it lying down: Fifth Avenue, 1990
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Richard B. Levine/SIPA USA/PA Images. All rights reserved

I was lucky. Only four people who I loved died. It was bewildering to be caught up in so much illness and death. Over 10,000 died in the UK alone before there was effective treatment. To begin with it was pneumonia that took them; in time they got better at managing that. We had so many questions: why is the government so slow to respond? Why aren’t there the resources in the healthcare system to manage this? Why are my loved ones expendable? Why am I?

In the early '80s, as AIDS took hold, we whispered these questions amongst ourselves. The similarities between the coronavirus pandemic and HIV, the virus that causes AIDS, are obvious.

In those early years of AIDS, there were people who realised what was happening and sought in vain to warn key decision-makers. It is the same with COVID-19. Some experts very early on drew analogies between AIDS and hepatitis B: AIDS was following a similar pattern of spread. They were ignored by people with power. Had they been listened to vast numbers of lives could have been saved.

Fast forward to January 2020 and the editor of The Lancet, alert to what was happening across the globe in relation to the coronavirus, was quick to publish his concerns (following earlier scepticism). No one listened. Under the circumstances, how terrible to be proved right.

Ignorance about transmission is another shared feature of both pandemics. You can't get HIV without intimate contact with a person who already has it. You can get the coronavirus that causes COVID-19 simply by spending time close to an infected person. They require a different health prevention response. Condoms, protecting the blood supply and avoiding direct contact with blood keeps HIV under control. Quarantine is the only solution to preventing infection with the coronavirus. The most effective way to spread COVID-19 is for people to mingle. Yet in the early moments of the current pandemic, messaging from those in power suggested that COVID-19 was avoidable without quarantine. That washing your hands, in and of itself, could keep you safe.

It was the opposite in the age of AIDS. People believed they would catch HIV through casual interaction with others. The failure to make clear the routes of transmission for both viruses was, and is, a significant failure in public policy. Ignorance breeds fake news. Will we really catch COVID-19 from our washed lettuce, or from a letter sent through the post? Theoretical risk needs to be authoritatively discounted.

Both conditions are caused by a virus which does not discriminate, yet those most affected become expendable: gay men in relation to AIDS in the UK, and older people for the coronavirus. AIDS was only taken seriously when straight women and some straight men were also infected. It is the same with the coronavirus. We comment mostly when younger people die.

The biggest lesson from AIDS is that it taught us to speak out. We stopped whispering in the shadows

HIV and COVID-19 have consequences for mental health. Fear of AIDS became part and parcel of AIDS. Its harm still haunts. The mental health repercussions of the coronavirus pandemic will live with us for years to come, and well after the virus has been brought under control.

HIV and COVID-19 also share mourning. During the AIDS crisis, we became expert at grief. How will we mourn those who died from the coronavirus? When your loss is part of a global pandemic, how do you make sense of that sorrow?

AIDS taught us that the crisis is not more important than the individuals affected by it. We talked about ‘people with AIDS’ (PWAs), not ‘AIDS victims’. They were people living as well as dying with AIDS. We put human dignity first and we looked after each other.

As with the early years of AIDS, those affected by the coronavirus are presented as faceless and nameless victims. This denial of dignity is a problem. It suggests that a higher value can be attached to some lives than others. We could not countenance that during the AIDS crisis. Ventilators must not be rationed.

The biggest lesson from AIDS is that it taught us to speak out. We stopped whispering in the shadows. There can be no deference to government or people with power during a pandemic. PWAs took control. They resolved that crisis. It was those most affected who ensured that governments, drug companies and healthcare providers stepped up. It was PWAs who demanded the treatment regimes that would go on to solve the crisis.

My four beloved friends did not die in vain. They helped pioneer a new future for healthcare where those most affected became key partners in its delivery. In this pandemic we need to follow their example. We cannot be passive. We need to multiply our toolkits to ensure we outlive COVID-19. If there are licensed ventilators to be had within the EU, we must compel our government, through the courts if necessary, to join all schemes that protect the right to life. We must demand access, again through the courts if need be, to experimental treatments.

And we must hold our government to account – legally if required – if it turns out that more of us died due to decisions they made or chose not to make.


Update, 18 April 2020: This article has been amended to clarify the communicability of the viruses and diseases in question.

Stop the secrecy: Publish the NHS COVID data deals


To: Matt Hancock, Secretary of State for Health and Social Care

We’re calling on you to immediately release details of the secret NHS data deals struck with private companies, to deliver the NHS COVID-19 datastore.

We, the public, deserve to know exactly how our personal information has been traded in this ‘unprecedented’ deal with US tech giants like Google, and firms linked to Donald Trump (Palantir) and Vote Leave (Faculty AI).

The COVID-19 datastore will hold private, personal information about every single one of us who relies on the NHS. We don’t want our personal data falling into the wrong hands.

And we don’t want private companies – many with poor reputations for protecting privacy – using it for their own commercial purposes, or to undermine the NHS.

The datastore could be an important tool in tackling the pandemic. But for it to be a success, the public has to be able to trust it.

Today, we urgently call on you to publish all the data-sharing agreements, data-impact assessments, and details of how the private companies stand to profit from their involvement.

The NHS is a precious public institution. Any involvement from private companies should be open to public scrutiny and debate. We need more transparency during this pandemic – not less.


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