The End of Innocence

The End of Innocence – Britain in the Time of Aids

Extract from the new Afterword (2021)

The world has changed, thank God. But the world still has AIDS.

This book went out of print a while ago, and I’m delighted Faber has reissued it. The publication coincides with the 40th anniversary of the first reported AIDS case in the UK, and a sense that we may be running the last miles of a brutal race.

The book is now a time capsule; with one exception, I haven’t touched a word of it. The first edition opened with an origin story, the tale of what may have been the first British case of HIV in a seafarer who fell unwell and then died in Manchester in 1959. The story was always scientifically problematic, and has since been disproved by genetic coding, and so I have excised it here. But apart from that, everything holds true, or at least consistent. This was the story then.

Reading it now, I can see oversights and omissions, and I regret being a little too cynical at times, but I’m proud of the anger it contains, and I still feel indebted to those who helped me write it. I hope someone close to the story will one day bring the narrative up to date.

For several years we have celebrated an epidemic in retreat, at least in the UK. HIV, if detected early enough, is entirely treatable. The antiretroviral medications that looked promising at the end of this book are now both highly effective and generically affordable, while Pre-exposure Prophylaxis (PReP) ensures that even transmission is preventable. Not all the stigma of HIV has disappeared with the decline in infections, but we are in a far better place than we were in 1994. And the dedicated hospices are long closed.

I have the figures. In November 2020, Public Health England reported that the number of people newly diagnosed with HIV in the UK in 2019 continued to decrease to 4,139 (1,139 females and 3,000 males). This was a 10 per cent fall from 2018, and a 34 per cent fall from a peak of 6,312 new diagnoses reported in 2014. In 2019, a total of 98,552 people received HIV care in the UK. The number of deaths remained stable at 622 in 2019.

But the numbers have never told the story the way people tell the story, and some of the most unforgettable are now to be found on the Instagram account The AIDS Memorial. Here, usually triggered by a significant anniversary, is an untutored outpouring of grief and loss, often from people who have never expressed these feelings publicly before. The site is reason alone not to despair of social media. Most of the photographs are fabulously posed, and for once don’t tell you very much, apart from what terrible taste in fashion we had. But it’s the text that slays you.

The stories are posted from Scotland by a man called Stuart, and that’s all he really wants anyone to know about him. ‘The account is a reminder to remember not just those who have passed, but also those left behind’ he said recently. ‘History doesn’t record itself.’

The fact that we have more AIDS history behind us than before us permits a certain level of reflection, pride even.

There are plans for a London AIDS memorial in Tottenham Court Road, close to the former Middlesex Hospital where Professor Michael Adler and ward sister Jacqui Elliott opened for business in 1987.

There is reason to consider the good that has come out of this terrible time. The galvanising of a community. Lower rates of STIs. A new way of talking about sex, and a new way of talking about a health crisis. The slow progress towards sexual equality has also been accelerated by the crisis, and we are slowly grappling with the racial inequalities of the disease.

And then there’s It’s a Sin. One reason for the renewed interest in my book has been the extraordinary success of this heartbreaking, life-affirming series on Channel 4, and nothing has done more to inform young people about the truths of the early crisis. Its creator Russell T Davies was my only choice to write the introduction for the re-issue, and I was overwhelmed by the generosity of his words.

I have tried to understand why I was both so devastated and uplifted by the show (I and a few million others). I came to it with a fistful of scepticism. I thought it would make me feel old, but it made me feel young, jumping back into that scrappy, mostly uncaring London of the 1980s. I feared it might be inaccurate or, perhaps worse, wear its research too heavily on its sleeve, but it got things right, the conflicted characters fully recognisable from the off, and so far from the ‘victims’ I remember from earlier melodramas. (No apologies if this appears like a mutual appreciation society: if you haven’t yet watched It’s a Sin, what on earth are you doing still reading this?)

I have asked myself how I came to write this book in the first place. A straight man living (as it says rather too pointedly on the original jacket) with his wife and two children. Weren’t there people better suited to the task? Yes, many.

But my biography also said I lived in London, and if you lived in London during that time you were infected with the story of AIDS. It was the backdrop of my early professional life, and it hit me in the gut, just as punk had done a few years before. In the 1980s, I was working at Time Out, and although there were other big issues in the air (the miners, Thatcher), and there were even other health issues (anyone for herpes?), I was surrounded by colleagues who were affected, and I was interviewing music and theatre people who were affected. People were hearing things, and then knew someone, and then became someone. There were more experienced writers on the magazine who tackled AIDS head-on; in the main, as crass as it sounds, I observed the early wreckage while reviewing the week’s LPs.

A decade later I was working at the Independent on Sunday, which for a while I considered the best newspaper in the world. I suggested a feature on the history of AZT, the drug on which so many had pinned too many hopes. When the Concorde trial destroyed the dream of the magic bullet, I thought it would be interesting to write a thorough account of the drug, and to ask what was coming next. The pharmaceutical industry spoke a lot about fast-tracking, but it appeared to me that things were moving incredibly slowly. Those who were unwell were taking desperate risks with untested (and sometimes clearly quack) treatments.

So I looked around for an accessible account that would help me put this dismal saga into perspective. And there wasn’t much. There was a lot of reporting in the gay and medical press, and a lot of activity from pressure groups, but no one directly involved had the time to attach a longer lens. I wasn’t directly involved, but I had enough journalistic curiosity and an approaching sabbatical. And within weeks I was talking at length to those who had lived and suffered through the epidemic, while others trustingly opened their files of correspondence and minutes.

And at some point in the middle of my research I realised I had another motive for writing this book, another inspiration. Jonathan, my older brother who was training to be a surgeon at the Royal Free, had died in his early twenties. It wasn’t HIV, but another critical viral emergency. So young men dying way before their time? Of course I was going to write this book.

What have we learnt?

For me, at least four important things. We discovered that health education and care moves slowly for those not considered a priority. Perhaps it was ever thus: those in a minority stay at the back of the queue until that minority – and the statistics – become too big to ignore. I told myself I wouldn’t draw parallels with Covid-19 in this afterword, but I just have. Official inquests move even more slowly: at the time of writing, the official public inquiry into the contaminated blood scandal is still ongoing.

Secondly, the NHS was both (dread words) villain and hero in this piece. There were clearly many terrible misjudgments regarding Factor VIII and transfusions. And there was much early fear and discrimination surrounding HIV on the wards. But then things changed, and the NHS became magnificent, particularly in London. Hundreds of individuals combined expertise with compassion. And they went under-appreciated and underfunded. Fancy that.

Thirdly, activism works. We gather, we fragment, we unite. Eventually the shouting becomes impossible to drown out. The energy and self-belief mustered and sustained long enough to effect change is still mind-blowing to me.

And finally, even the Tories get things right some of the time. And given enough time: when the government finally acted, with whatever motive, they acted thoroughly. Our AIDS campaigns set the pace, and for a while we were viewed with envy in Europe and the United States.

Although at the end of this book it appears that Sir Norman Fowler was signing off from his responsibilities, he was actually just signing on. His cross-party work has been crucial in ensuring AIDS has remained a parliamentary issue long after the headlines faded.

And as I’m singing praises, the Terrence Higgins Trust, the National Aids Trust, the Elton John AIDS Foundation (and of course others) have continued to campaign, fund and celebrate tirelessly and fruitfully. I could also mention people like Stephen Fry here, but then I’d also have to mention a thousand others. Their work and survival speaks to their resilience, worth and need.

By the end of this decade everyone hopes to have campaigned themselves out of existence. In December 2020, the multi-charity HIV Commission issued a blueprint to reduce HIV cases in England by 80 per cent by 2025, and end transmission entirely by 2030. Ambitious, but scientifically possible. The key is stigma-free universal NHS testing, a normalisation once quite unimaginable.

In June 2021, shortly before this new edition entered production, I spent a few instructive online hours listening to impassioned speeches at the United Nations. (Has there ever been a more deadening sentence than that?) Participants gathered in New York to signal the work ahead, and it was a familiar story: those in poverty face a critical double hurdle that has all but disappeared from our own experience of HIV – a lack of education coupled with insufficient access to services.

The global figures are stark. Almost 38 million people were living with HIV globally in 2020, with some 28 million on treatment. The roll-out of affordable, quality medication is estimated to have averted 16.2 million deaths since 2001. HIV-related deaths have fallen by 43% since 2010, but still stood at 690,000 in 2020.

To speed this decline to zero, a UN declaration agreed ‘urgent and transformative action’ to end the gender inequalities, restrictive laws and multiple forms of discrimination that perpetuate the global epidemic. Another resolution agreed a $29 billion annual investment in low- and middle-income countries. With the exception of Belarus, Nicaragua, Syria and the Russian Federation, 165 member states signed up.

‘If there was ever a time to remotivate ourselves…that time is now,’ Thailand’s Prime Minister said.

‘While we have made some significant progress as a global community … people are paying the price with their lives,’ said the celebrated founder of the Charlize Theron Africa Outreach Project.

‘There’s one single reason we are missing our goal: it’s inequality.’

By focusing on the UK, my book is necessarily an insular one. It tracks the pioneers of the interior. I hope that much of this history captures a country we may barely recognise. The fact that it reflects a darker time, from which we have pulled through to shine a little light, should give us hope. Soon, if not soon enough, this story might indeed be close to an ending.

November 2021