In the mid-1990s, two critical developments changed everything for people with HIV. The first was the ability to directly measure viral activity or viral load. The second was combination therapy that included new drugs with novel mechanisms of action and which had a profound impact on viral load. To our relief, we at last began to see patients beginning to get better, instead of spiralling inevitably downwards. 

 

This was very different from when I started to work in HIV medicine. In 1988, things were very grim indeed. Although a few HIV patients get sick quite rapidly, the average time from acquiring the virus to becoming ill was, typically, eight to ten years. Most people went through a period where they were relatively or completely well and unaware they’d been infected, but still able to pass on the virus to others. People were often reticent about testing, because it simply revealed they were infected with something untreatable and unmasked the likelihood of soon becoming ill and dying early; a positive HIV test was also the thief of hopes and dreams. The CDC definition of HIV disease led only one way: well to ill, to AIDS, to death. 

 

People would often present with something mild but persistent – thrush in their mouth, white marks on the side of their tongue, skin problems. Others would present with the hallmarks of AIDS, such as unusual pneumonias, a viral infection in the eye, or the disfiguring Kaposi’s sarcoma on their face. All we could do to help was to treat those infections, with antibiotics, antivirals or other standard medication. With each new infection, they would accumulate more and more treatments, more tablets, more injections, more intravenous 

 

infusions, with all the concomitant side effects: rashes, nausea, diarrhoea, anaemia, weight loss. We, as doctors, were dealing with something much more overwhelming, in terms of numbers of infections and severity of their immune deficiency, than we had ever dealt with before or seen described in medical literature. We had a thousand patients on our books for whom we might need 30, 40 or 50 beds at any one time, and we could expect to see five patients a week dying. But we were diagnosing as many as ten new patients a week, so numbers were growing. This was just one clinic of several in London, many more across the country. 

 

The Kobler, part funded by a generous donation, was a purpose-built block separate from the main St Stephen’s Hospital, subsequently rebuilt as the Chelsea and Westminster Hospital. It was close to Earl’s Court, whose pubs and clubs were one of the centres for gay life in London, but even in the early days we also saw many women, as well as people from some more established risk groups such as people from high prevalence countries in sub-Saharan Africa, people who had injected drugs, as well as people who had no clear idea how they may have acquired HIV. Often the only risk factor for acquiring HIV is that they have been sexually active, and we know the majority of HIV transmission globally is heterosexual. 

 

We made sure the physical environment was sympathetic to patients’ needs – soft, comfortable chairs, for instance, for wasted, bony posteriors. None of the doctors wore gowns or white coats. Our philosophy was to wear street clothes to break down the doctor–patient barrier. Volunteers provided tea, coffee and cakes. We had our own onsite pharmacy so people who had difficulty walking didn’t have far to go to pick up medication, and our own day care unit for infusions and onsite diagnostic facilities, so endoscopies and other tests could be performed there instead of having to make arrangements in the main hospital. 

 

An equally important part of our work was recognising there is a balance between length of life and quality of life … and ensuring someone’s quality of death was good when that time came. What’s the point in continuing on toxic medication if you only have weeks to live? I remember one patient who went out to buy the best pair of silk 

he could find, a luxury he’d not enjoyed before, so he could die in them. People faced their premature death with such dignity and nobility, often supported by friends and loved ones who knew their time was also running low. 

 

By the early 1990s, many of the bars and clubs in Earl’s Court were closing and the London Apprentice pub in Old Street had already shut because, effectively, its entire clientele was dead. It is estimated that 70% of the gay men from the Earl’s Court area died, a bigger impact on a community than, for instance, a village whose young men went off to fight in the First World War. A whole generation of gay men was wiped out by HIV, beautiful, creative, talented, loved young men. Think what they might have achieved with the 40 years of life stolen from them. Society is the poorer for their passing. 

 

That more didn’t die is largely down to the efforts of the gay community themselves, who were active in promoting messages around safe sex and placing pressure on the levers of scientific power, so the development of new treatments became a priority. As a result, we now have a gay community in London which is mostly HIV free, and we limited an expansion of HIV more broadly into the UK’s population. 

 

The only treatment for the virus when I started in 1988 was AZT, an important development because it proved that a weak antiviral drug could buy time. Unfortunately, it didn’t extend life by much, because the virus became resistant to it and,as we gave it in high doses, hoping for greater effect, it often made people sicker than before. But it became an important building block for adding new antivirals as they were invented. My job was a mixture of clinical care and research, because we wanted to get new drugs out to patients as fast as they became available. The way to do that is through clinical trials, before drugs are licensed or approved. Through that process, HIV brought about a reinvention in medicine. Because so many were dying, we had to put our foot on the accelerator very rapidly. Something very similar has been happening during the coronavirus pandemic,where patients willingly consent to what are still experimental treatments. 

 

At the Kobler, we did some of the first studies looking at combination therapy and were involved in the development of viral load testing. When we began combining drugs, going from one to two, we saw a small improvement in people’s CD4 numbers – that is, the T-cells that help fight infection. Unfortunately, there was also an increase in the amount of side effects so, as we began trials using three drugs instead of two,we were not expecting any significant improvement. How wrong we were. 

 

The watershed moment was July 1996, at the World AIDS Conference in Vancouver. Several groups reported on clinical studies where, starting on three drugs at the same time, patients’ viral load dropped below the limits of what could be measured – and remained there. Alongside came remarkable improvement in their CD4 cell counts. From the moment we began using triple therapy routinely in the UK, we saw what we called the ‘Lazarus’ phenomenon. People we’d thought would die had their health restored. The social workers employed at the Kobler to help patients claim disability benefits now found themselves helping many return to work. A patient of mine, whom I’d advised to take early retirement and make his will, started on triple therapy involving a protease inhibitor called Indinavir, and described starting his new ‘cocktail’ as if someone was turning off the switches on his switchboard of symptoms. One by one,they went away – the night sweats, the fatigue, the weight loss, the diarrhoea, until two years later he was able to return to his profession and rise to the very top of it. 

 

Now, 25 years later, side effects from the medication have been vastly diminished as we have refined treatments and expended options. People are less fearful of diagnosis and stigma, while still a problem, has diminished. We are at a point where, provided we diagnose HIV early enough, we can rapidly reduce viral load to undetectable levels and safely say that person can no longer transmit HIV: “undetectable = untransmissible. ”Additional, PrEP – pre- exposure prophylaxis – is available for people whose activity puts them at risk of the virus. 

 

But to suggest HIV is no longer a problem would be naïve. Donations, that funded much of the care and were at their peak when many people were dying through HIV, are drying up. Studies of how people age with HIV already reveal that those who’ve been infected the longest and exposed to the older generation of treatments, tend to carry a bigger burden of health issues into old age than the general population – a greater chance of high blood pressure, diabetes, kidney disease, heart attacks, cognitive disturbances. The precise cause is not yet clear: some of it may relate to the virus, some to medications they received in the past as well as lifestyle factors such as smoking, alcohol and recreational substances. 

 

Above and beyond, there is also the question of how surviving HIV has affected mental health. In the early 1980s,a gay man called Stephen Crohn was the partner of one of the first people to die in New York of AIDS. Crohn had been exposed many times to the virus, through his partners, yet he never became infected and seemed to be uninfectable. It turned out he had a genetic variation in his CD4 cells, missing a receptor called CCR5 for the virus to latch onto. Over the years, he assisted scientists, who were eventually able to use his genetic variation to develop a new treatment and, via a bone marrow transplant in one individual, an apparent ‘cure’ for HIV. But in 2013, aged 66, Crohn committed suicide. The note he left explained the burden of being the last one of his friends left, of having photo albums and diaries recording the fabulous lives of people who had died long ago in the glow of their youth. He had lost his social network, those people with whom he would otherwise have grown old disgracefully, and he couldn’t live with that knowledge. 

 

As a result, we now have a gay community in London which is mostly HIV free, and we limited an expansion of HIV more broadly into the UK’s population.