Thirty years ago, in February 1987, the Queen visited the Royal College of Pathologists. As part of her trip, she met Professor Jangu Banatvala of St Thomas’ Hospital, who explained how HIV can affect the central nervous system. He showed her some pictures of the brain of a patient, pointing out the areas that had shrunk as a result of the virus. “The Queen was very interested,” the professor remembered afterwards. “Above all, she was interested in treatment and the prospects of a cure. That is what we are all most interested in.”
Thankfully, we still are. At the time of her visit, HIV was the virus that almost always led to Aids, but this is no longer the case, at least not if you live in the developed world. Last week, the Lancet published a study with a modestly celebratory conclusion – that patients taking antiretroviral therapy are living longer than ever; a 20-year-old who began treatment in 2008 may now reasonably expect to live to 78.
There are, inevitably, caveats attending this good news. There are still too many Aids-related deaths; there is the false notion, always encouraged by improvements in healthcare, that HIV is now a thing of the past. Last year, a record number of people were diagnosed with HIV in Ireland. But one should still mark the positive news with some relief, if not joy. For our containment of the virus carries far-reaching lessons – and some ominous portents – for healthcare in general.
In 1994, when I wrote my book about the history of Aids in the UK, the situation was still dismal. It was then well over a decade from the first HIV diagnoses, but my research interviews were often cancelled by the need to attend my subjects’ funerals. Those present at the start of the crisis recalled the relentless homophobic judgments of the media and church, while there were stories of patients in less enlightened hospitals being fed Ryvita because it was the only food that could be slipped beneath a door.
Improvements in patient care had been slow, expensive and mostly disappointing. Blame clouded everything. The “magic bullet” optimism that accompanied the launch in 1987 of Wellcome’s drug AZT proved largely inflated and patients initially grasped at any voodoo remedy that might help them. The most desperate travelled to Mexico to smuggle back potions both unlicensed and dangerous; for a while, shark’s fin was the thing.
Then, in 1996, there was a genuine breakthrough born of prolonged dedication. Anti-retroviral combination therapy was shown to have a dramatic effect on reducing viral load in infected patients and boosting or at least maintaining pathogen-resisting blood cells. HIV could now be managed as a chronic illness and those infected no longer felt it necessary to cash in their life insurance for a last hurrah on a cruise ship. At first, the drugs were difficult to manage and carried many side-effects, but the fine tuning that attended each patient’s care over the last 20 years has resulted in life expectancy similar to the national average.
We shouldn’t be surprised by these latest projections. By and large, the UK has an admirable record when it comes to Aids, both politically and medically, and our policies are still admired and envied in Europe and the United States. Although it took untold suffering by many patients before the government decided to act, when it did (and, remarkably, this was Margaret Thatcher’s Conservatives at the height of their callous pomp), it did so with courage and conviction.
Some believe we overreacted: an information bulletin delivered to every home in the country and John Hurt voicing doomy television campaigns claiming that everyone was at equal risk scared the sensitive and righteous, but better too much than too little. And it came only after intense lobbying. Activism here had a wide and effective base: virologists in labs, practitioners in hospitals, far-sighted politicians and the many charities and pressure groups that acted because their friends were dying.
There has been another significant Aids-related event this month – the new production at the National of Tony Kushner’s masterpiece Angels in America. This is a monumental drama too rarely seen on the stage, an epic and elegiac examination of what America stands for at a time of uncertainty and crisis. Mostly, the answer is “the triumph of greed”.
Diversity does not fare well. Written in the early 90s, reflective of both the Aids epidemic and Reagan-era inhumanity, it is impossible not to draw parallels with America today. The dramatic links between Donald Trump and the play’s villain, the reactionary powerbroking lawyer Roy Cohn, are so blatant that to overplay them would be to tilt the balance of the play into farce. When Kushner conceived the idea, his rage had still not triumphed over despair. The mid-80s, when the play is set, “was a horrible, horrible time”, he recalled later, and he saw nothing but a Republican majority in Washington for eternity. “It really seemed like the maniacs had won for good.”
Today, we may perceive another alarming message on stage. We watch the drama of Aids from comfortable seats: we know things have improved, at least for those who can afford it. Yet there is a shadow overhead and it is not in the least angelic. With the repeal of the Affordable Care Act, and the ignorant and distasteful agenda of anti-science coming directly from Trump, any Americans watching the play in London have reason to grieve far beyond the script.
Under the current budget proposals, the National Institutes of Health, responsible for so much beneficial HIV research among its many other scientific advances, faces a $6bn (almost 20%) cut in funding. The play embraces magic realism and a reasonably optimistic outcome – humanity vaguely wins out – but Trump is not a theatregoer.
The HIV story remains far from over. In the UK, the Terrence Higgins Trust warns of complacency in the young and underfunding for those living with HIV in the long term, while many with the virus still go untested. But there are many lessons beyond the treatment room to be learnt from last week’s encouraging news.
Breakthroughs are cumulative; at its heart, our society is broadly compassionate, medical research may, with adequate funding, yield brilliant results and activism works.
Simon Garfield is the author, among other titles, of The End of Innocence: Britain in the Time of Aids