Dr Rupert Whitaker OBE is a British psychiatrist, immunologist, and patient advocate. He fell sick with an undiagnosable condition in 1981 and is one of Europe’s longest-surviving people with HIV. Following the death of his partner, Terrence Higgins, from AIDS in 1982, he co-founded the Terrence Higgins Trust. He describes the emergence of a true LGBT-community in response to the HIV pandemic.

 

At the time Terry died, we knew very little about the illness that was causing such a stir in America, which was called at the time ‘Gay Related Immune Deficiency’, or GRID. But we knew that if it was spreading in the LGBT-community in America, then Terry’s death was proof that it would soon be spreading in the UK too. By then I was also too sick even to climb the two flights of stairs to the flat I lived in; a year after his death, Terry’s physicians were surprised to find I was still alive. 

 

Through the Terrence Higgins Trust, we were trying to organise and get ahead of the curve to prepare for the onslaught of what came to be known as AIDS. What we weren’t prepared for was the degree of resistance from physicians, who felt they didn’t need any help. Yet all they had to show for their self-sufficiency in the early days of the pandemic was a desperate scramble to try to stop people dying so quickly from a range of bizarre opportunistic diseases few had encountered before. Much of the rest of the actual care was provided by the community, going into homes and hospitals to work within the clinics and on the wards. Activism had a major effect on the nature of the response. In the US, for example, this included working with governmental scientists, drug-companies and federal officials to speed through the development of new medication, even changing the way clinical trials were conceptualised and carried out. But that very success ironically sowed seeds of future failure: once effective medication came out in 1996, physicians took back control; their view was the community was no longer needed in the clinics as now there were medications to treat the virus, regardless of the disabling and sometimes life- threatening toxicities they brought with them. 

 

The consequence is that we are still struggling to create a response to problems of mental illness, chronic disability, unemployability, and ageing in the older cohort living with HIV, not to mention pervasive problems like chemsex across all age-groups with HIV and at risk of HIV-infection. The marvellous medications have stopped people dying but have also left a generation disabled rather than returned to health, while mental and social problems are sidelined. Meanwhile, problems with homophobia and transphobia remain to cause mental illness in affected youth, increasing their risk of HIV, substance-abuse, self-harm and so on, over time. “Health”-services’ wilful blindness to these problems will not make them go away; they simply store them up for the future. 

 

Yes, we may now live an almost normal lifespan with HIV – but we do not necessarily live it well. As we get older, we suffer disproportionately more from age- related illnesses, particularly the first generation of us for whom HIV-medications were not as well-developed as they are now, causing higher rates of heart-disease, dementia, arthritis, diabetes and so on. There are people whose lives have been wrecked by HIV, who have been on disability and welfare for decades, if they haven’t been thrown off it through the government’s hostile environment towards the disabled. Some of us are only surviving, not living. 

 

We need to look at housing and find care and accommodation for those who have no family to look after them in old age. Again, we need to look at mental illness. A generation of people were affected by HIV and AIDS – not only those of us with the virus, but also those who had to live alongside it, wiping up their lover’s vomit as he died; that generation has been traumatised and some suffer from a kind of survivor- syndrome, a type of complex Post Traumatic Stress Disorder. That’s about personal loss and the stress that comes from living long term under the threat that either you, or people close to you, will die. Often – and I can speak personally here – it manifests as what the sufferer imagines is a self-sufficiency, but which is actually withdrawal and detachment. You cannot continually be saturated with grief and stress for so many years without finding a way to stop yourself feeling so inexpressibly raw, to cope with wounds that haven’t been allowed to heal. Most everyone can get over a broken heart or two in the course of their life. But thirty? Forty? Learning how to trust that you can rely on someone, that they are not going to die too soon, is hard. It becomes difficult to form new relationships and it isolates. If you do try to reconnect, there are volatile feelings, distress and anger, the desire to be able to walk away at any point, which doesn’t make for healthy relationships. Over time, this becomes normal, so that people enter lives of everyday misery and become unable to imagine anything better. 

 

Many of us have been through this, but we rarely talk about it. Instead, we have a sense of fear of the future in all its manifestations. How will you work out what is normal illness when you are getting old or what is a toxic effect of the medications on your already-damaged body? You can see a lot of problematic self-care that turns into self-harm, people managing by misusing alcohol, drugs, or sex that isn’t healthy. Survivors killed themselves because they could no longer bear the pain of surviving so many losses, including the final one,the loss of a community with a shared purpose. 

 

Social pressures are potent triggers for mental illness. Losing your disability-welfare, or becoming isolated long-term because you are shielding through lockdowns, such things can reactivate old trauma. You can lose your courage and will to fight through the day — and being disabled often requires fighting through the day. Remarkable as the new drugs are, research I carried out identified a telling problem: the greater the loss you suffered through HIV, the more friends who died, the less likely you are to take your meds today, no matter how long you have been infected. You will also be more likely to have arguments with your physician or disengage from services. It’s a form of self-harm, fostered by medical services that are wilfully blind to the importance of mental and social issues. 

 

A major issue, not just for long term HIV survivors but all people with HIV or at risk of it, is that neither social nor mental issues are addressed adequately by clinics. Within the NHS, everything is compartmentalised and physical illness and mental illness are dealt with in different silos. The only reason for this is because it works for physicians, who believe that only they do ‘real’(i.e.,physical) medicine; what is best for the patient is considered only secondarily to that. The integrated teams we saw in the early days of the HIV pandemic no longer exist. Yes, your physician might assess you and refer you to mental health services, but is that different from a social worker determining whether or not you need a referral to oncology because you have a suspicious lump? The presenting problem is not within the physician’s competency (regardless of what they claim), nor the social worker’s, so why do we allow the first if not the second? 

 

The problem with a physician-centred approach is that it becomes: We have a pill for that! For example, take pre- exposure prophylaxis (PrEP) against HIV-infection. When someone turns up in a clinic saying they’re worried about the risk of contracting HIV, because they’re having sex without condoms, it’s not enough simply to offer them PrEP. Why are they not having safer sex? As HIV-infections have gone down over the past ten years, syphilis has become epidemic; ditto with gonorrhoea etc.; sexual infections now are the worst since the Second World War. Is that person at the clinic also using harder recreational drugs to have sex, which can indicate mental illness, particularly anxiety, depression, and substance- dependencies? Are they feeling lonely and isolated? These factors are all potent predictors of illness. With the wrong clinicians not asking the right questions, it’s obvious that we should set person-centred standards for medical services, so that they’re not just about our bodies, but competently addressing our physical, mental, and social health all together. Similarly, we need to audit clinics in a way that isn’t just a review of how many blood tests they do, how many infections they diagnose, but how are they really helping people to get well — and stay well? Some of the help can only come from the community, not clinical health services on their own, but our excellent model for that not only didn’t develop further, it was wiped out. We need to answer “who benefits from that?” and change that fact. 

 

As a young man, barely a decade after the legalisation of homosexual acts in the UK, I saw a true LGBT-community emerging, bonded by a common fight against bigotry; with AIDS, that community came together with a vengeance. Change only occurs if you really push — often only if you stand up and shout. It should be recognised that the LGBT-community and our allies radically changed the face of the response to the HIV-pandemic. We should be very proud of that. We learned lessons for how to respond effectively to a pandemic; those lessons were forgotten in Covid. We showed how to create fundamental changes in our health-services too, so that they became about people and health, not just bodies and disease, creating a model of how to treat all people with chronic conditions effectively. That lesson has also been forgotten, the model wiped out. 

 

This is not good enough. For the community of people living with HIV, particularly long-term survivors, people with complex comorbidities, and the ageing, it’s time to get ahead of the curve again.