On my first day as a newly qualified doctor in 1984, working at St Mary’s, I was called to the AIDS ward to set up a drip for a very sick young man who was going blind from cytomegalovirus retinitis. In those days there was very little we could offer in the way of treatment for people with AIDS but, in this instance, huge vials of immunoglobulin had been flown in with the hope an infusion might help him. I was inexperienced and, try as I might, I could not get the cannula into his arm. So I rang an colleague to ask for help. When it was clear which ward I was on, it was suggested I call another colleague instead. Looking back, I think that moment shaped the rest of my career. I was shocked that a doctor would decline to help desperately sick patients, dying before our eyes. 

 

In those days the AIDS ward at St Mary’s was very unlike today’s hospital wards. There were ten or twelve rooms, all single occupancy, painted a stark clinical cream. There was a set of cold, pretty bleak waiting areas in the corridor for visitors, and there was one huge room for the nursing staff and doctors, part medical hub, part social centre, warm and always full of cigarette smoke because in those days everyone smoked. 

 

Barrier nursing was the order of the day, gloves, aprons and masks for the staff, not just because of the virus itself but because of other pathogens. People with AIDS could have a wide range of infectious conditions. Some patients were coughing with tuberculosis, others might have torrential diarrhoea. Everyone carries a whole variety 

of bacteria and pathogens they’ve met in the course of their life, which normally don’t cause any bother so long as their immune system is strong. But the immune system needs only to weaken a little for TB to develop, so that would often be one of the early illnesses patients would present with, or perhaps shingles, depending on what they had encountered earlier in life. The more immunosuppressed they became, other bacteria or viruses they had been playing host to would get their chance. Pneumocystis, a fungus that causes pneumonia, tended to appear before cytomegalovirus. But being sick with pneumocystis would suppress the immune system further, so another condition would emerge. It also depended on where people had grown up. In parts of Africa, for instance, there’s a strong link between HIV and TB, because so many people in Africa have already encountered the tuberculosis bacteria. Sometimes it was as if AIDS had an unnerving ability to target whatever was most precious. I cared for several visual artists who developed CMV retinitis and began to lose their sight. 

 

There were difficult conversations with families, some learning for the first time their son was gay at the same time they had to grapple with knowing he had a fatal disease. Some refused to visit. And there was ongoing fear among a small minority of staff. We had to argue hard to get lab tests processed, if they required blood to be pipetted or handled manually. Even in 1990, when I set up the HIV unit at Bart’s, there was a reluctance among some lab staff to process liver function tests. I had to explain that HIV positive blood was almost certainly going through their machines every day, from people in the community who hadn’t been tested. All blood needed to be treated the same, because it was the specimen you didn’t know about that was more dangerous. 

 

On the wards, though, the staff were utterly dedicated, even in the face of all the deaths. In those early years, one of the most important aspects of our work was taking care of people – there was no magic pill. I went to a lot of funerals. 

 

At first, in London, we were only seeing gay men with AIDS. The first woman I saw with AIDS was from an African background. That was the point at which I realised AIDS was even more complicated than I’d originally assumed. Other questions began to emerge. What if a woman were pregnant? Could she or should she safely have children? This was the beginning of a new set of issues we needed to address though, of course, in some areas of Africa doctors were already seeing heterosexual people with HIV. 

 

As doctors, the experience we were gaining with the illness meant that our careers moved more rapidly than we would have expected, as the number of posts were expanded in response to the epidemic. I went from being a junior houseman to consultant in just six years, appointed in 1990 to set up a new HIV unit at St Bartholomew’s Hospital. Fortunately, we had powerful peer support and good networks – if a colleague didn’t know the answer to your question, they might know somebody in New York or San Francisco who had experience of whatever it was. 

 

By the time I became a registrar in 1987, the first antiretroviral drug, AZT, had been approved. At that time, it would normally take eight to ten years to get a drug fully trialled and approved. With AZT, the process took a matter of months, such was the need to find something that could stop the virus in its tracks. At the beginning there was a lack of understanding about how best to use it. Patients were given high doses every four hours. We issued them with pillboxes that had timers and beepers to wake them in the middle of the night to take their scheduled dose. And the side effects could be brutal. It often made patients anaemic, so they had to come into hospital for blood transfusions. Next came DDI, in big boxes of powder that needed to be mixed with water, tasting revolting. All the early drugs were unpleasant, some leaving people with a metallic taste in their mouth that never seemed to disappear. With the early protease inhibitors, the bioavailability – the proportion of the amount swallowed which can get from the gut into the bloodstream – was quite low, so that meant the quantity of tablets people had to take was enormous. Some patients were taking 18 pills, twice a day. We discovered that drinking grapefruit juice could block the enzymes in the liver that broke down the drug, so we recommended that. But still we weren’t going fast enough developing new treatments that would save everyone. There was a real push and pull between activists and researchers to get the drugs approved faster – moving out of the labs and into sick people. 

 

In those early years, it was about partnership, that there were two of us feeling our way through this illness, doctor and patient. Since we had only a few blunt instruments that still could not completely halt the disease in its tracks, it was essential that patients be involved in all decisions about what would allow them the best quality of life, whether to proceed with what were often punishing drug regimes – or not. New treatment information was shared – every few weeks pages of shiny fax paper would roll off the ward’s machines – it was called Dr Fax – with information the activist community thought could be useful for us to know about. 

 

Inevitably, when you start to challenge a virus, it fights back and is able to mutate, which can make it drug-resistant. Fortunately, by the early 1990s, other drugs were coming through and we used them more effectively. Once the structure of the virus became known, it was possible to make more targeted compounds designed to fit just one specific part of the virus, with new technologies in drug design being pioneered. HIV pushed the barriers in terms of biotechnology, in ways of measuring viruses and unpicking their genetic material to identify mutations. And as a result, our work as doctors now became much more technical. The power dynamic shifted, and the nature of partnership working between doctor and patient changed. 

 

Today’s challenges are very different. The real shift has been that we are now aiming to test people routinely for HIV in areas where it is most prevalent, whenever they come into contact with a health care professional, because the quicker people with the virus are able to access treatment, the better chance they have of staying well and living a long life and are not infectious to other people. And apart from anything else, this helps save the NHS money. We recommend anyone who is changing sexual partners regularly to take a test at least every three months, to help break the chain of transmission. 

 

Looking to the future, Jonathan Mann was right in 1987 when he said we really need to see this as three separate but intertwined epidemics: AIDS, which we have largely been able to deal with; HIV, which increasingly we can solve; and finally, the social and political context, the way we plan for the future. We have effective treatments for the virus. But do we yet have social policies and a national strategy for the longer term consequences from this infection? People in Western Europe have lost a sense of the seriousness of HIV. They seem to think the epidemic is now over. But HIV and AIDS have not gone away. In fact, there are more people today living with HIV in this country than there have ever been. Our real challenge for the next decade, especially in the wake of Covid-19, will be ensuring that HIV remains a key priority – in order to end new infections and ensure that people living with HIV live long and live well.