The recently aired and hugely successful, award winning but emotionally challenging Channel 4 series ‘It’s A Sin’ focused on the lives of some members of the LGBT community living through the 1980’s AIDS epidemic. While watching the crisis developing at high-speed on TV it led me back to my time as a student and then as a qualified radiotherapy radiographer in the early 80’s.
At the start of the epidemic there was a little known and small radiotherapy centre located right in the middle of Soho! St John’s Hospital for diseases of the skin was situated in Lisle Street just off Leicester Square and essentially in China Town. It opened in 1862 but moved to Lisle Street in 1935 in what was even then, and I quote a ‘pretty seedy red-light district’ at the time.
Even in the 80’s it was still fairly ‘red’ with many Paul Raymond based clubs and revue bars and what used to be known simply as ‘sex-shops’. I didn’t go in but did frequent some of the pubs and restaurants locally, well I was initially a student living about a mile or so away!
Pic: St John’s Hospital today and Lisle Street in the early 1900’s
We had two X-Ray treatment machines and offered radiotherapy for Kaposi’s Sarcoma a version of which was initially limited, due to odd aetiological reasons to black African men and if I recall correctly when a student, sometimes elderly Jewish women from Eastern Europe? We also treated a range of non-melanoma skin cancer cases too and even used PUVA, a Psoralens and UV light-based treatment system for the treatment of non-malignant skin conditions.
We had a superficial ‘Siemens Dermopan’ that looked somewhat like this one below and rated up to 50kV, the other machine had a higher beam energy for slightly deeper-seated lesions. Dr Margaret Spittle, then the UK’s leading authority on treating skin cancer with radiotherapy was the ‘Consultant Radiotherapist’ or Clinical Oncologist in today’s speak and we worked together treating these cases.
Dr Spittle is specialist in breast, skin and head and neck cancer and AIDS related malignancies and still works in the private sector and I still see her very occasionally today. She also used to hold very nice and extravagant parties at her home in Esher for her colleagues and friends and had the first pink Rolls Royce I have seen outside of Thunderbirds and Penelope Pitstop. Those were the days!
Pic: ‘Siemens Dermopan’ unit
PUVA is a combination treatment consisting of taking a plant-based drug called Psoralens and then exposing the skin to long-wave ultra-violet light (UVA) hence the term PUVA. Psoralens makes the skin temporarily sensitive to UVA. It may be taken as pills by mouth or by applying it directly to the skin. The ultra-violet light is emitted by special fluorescent light tubes.
PUVA was useful for treating a number of skin conditions, such as psoriasis, eczema, polymorphic light eruption and mycosis fungoides
Pic: Lisle Street is partly in Chinatown and so gave a good opportunity for a nice lunch!
The hospital and radiotherapy department closed in 1989 with services relocating to St Thomas Hospital, St John’s is now the Slug and Lettuce pub and restaurant! Had that been the case in 1984 I might have stayed put!
The area of Soho around Old Compton Street increasingly became a very popular location for some of the LGBT community in London in the early 80’s and certainly is to this day. The Admiral Duncan pub on this street is well known as one of Soho’s oldest ‘gay bars’, however in 1999, the pub was the scene of a nail bomb attack carried out by neo-Nazi David Copeland killing 3 and badly injuring over 70 others.
According to online reports the Metropolitan Police undertook to maintain a crime scene van outside the pub to take witness statements and gather evidence until the perpetrator was found while the van would be staffed entirely with gay and lesbian police officers, rebuilding some lost trust between the Police and the LGBT movement.
So at St Johns’ we were located right in the middle of the rapidly growing AIDS storm, probably in the epicentre of the epidemic in London. People were scared of catching the HIV virus and becoming seriously ill with AIDS and others just being in close contact with infected people. The TV program shows patients shamefully dying in isolation wards on their own with the hospital, police and government controlling exactly what happened to them in what was a “George Orwell” style, overtly authoritarian health system response to the rapidly evolving crisis. This left an emotional and psychological scar on the lives of hundreds of thousands who suffered from HIV.
Not only did they have to contend with the ‘stigma and or shame’ of explaining to shocked or concerned parents that they had this medical condition they then had to comprehend the disappointment, discrimination and even anger shown in return added to the fact that when they started to attend the hospital in Soho with Kaposi’s sarcoma, they were met with staff in full PPE just as now with the Covid-19 pandemic! In fact, the early days of aids and Covid-19 had some similar themes. The derogatory term ‘Gay plague’ that was used by the media at the time did nothing to reduce rampant levels of homophobia.
Pic: Headline from the Sunday Mail in the early 80’s
It was not until Princess Diana became involved that people realised that this was not a contagion but largely a sexually transmitted disease. (Aside from presentation in some haemophiliacs and children) For those not involved in radiotherapy the symptomatic, purple blotches on the skin of many AIDS patients were in fact a rare superficial cancer of the lining of blood and lymphatic vessels, usually set off by a faulty immune system that required treatment with radiotherapy. The tumours usually appeared on the legs, feet or face while some lesions also appeared in the genital area, mouth or lymph nodes.
It’s A Sin followed the lives of five 18-year-olds who moved to London in 1981 who didn’t see the death and destruction caused by the virus coming and when it came it did so at great speed. Rumours were rife at the time in the LGBT community of an illness prevalent in the US that compromised people’s immune systems but their concern was initially limited to reading about it in US based magazines and newspapers that friends picked up when over the pond.
The TV series was based on Russell Davies’ personal experiences of the epidemic in the UK and filmed in honour of the generation who lost their lives to it.
The rare skin cancer which we now know was a form of Kaposi’s Sarcoma was reported in ‘The Lancet’ in New York while an unusual outbreak of ‘deadly pneumonia’ among California’s gay community emerged. These were found to be symptoms of AIDS. At the end of 1981 the first death in the UK was reported directly due to AIDS and in a regular traveller between the UK and US and so panic started to set in.
In 1982 the Terrence Higgins Trust (named after a patient who died in 1982) was formed to support patients but by 1987 AIDS was essentially a world-wide disease.
The UK then government launched a hard-hitting public information campaign called ‘AIDS – Don’t Die of Ignorance’ to educate the public with very authoritarian and haunting ‘War of the Worlds’ style adverts on TV and in the papers. Remember there was no Internet or twitter in those days and so information and the sharing of it was far less accessible! This was very powerful messaging indeed and put together by the then Health Secretary, Norman Fowler.
Pic: The ‘Gravestone’ as I called it, AIDS TV warning. You can watch the actual video on YouTube here: https://www.youtube.com/watch?v=iroty5zwOVw
That year, Princess Diana shook hands with a HIV-positive patient at Middlesex Hospital in London where I had trained as a radiographer without wearing any protective gloves while at the time people believed that AIDS could be transmitted through touching. Diana in that one moment changed attitudes throughout the UK towards people with AIDS.
She famously said that “HIV does not make people dangerous to know. You can shake their hands and give them a hug. Heaven knows they need it. What’s more, you can share their homes, their workplaces, and their playgrounds and toys.”
Pic: Diana at the Middlesex Hospital
This would also change the attitude of the NHS as to how to deal with these cases and that PPE was simply overkill while life-saving antiretroviral drugs were now under development.
Queen front man Freddie Mercury became the first high-profile person to die of an AIDS-related illness in the UK and his biopic 2018 movie ‘Bohemian Rhapsody’ is well worth a watch if you haven’t seen it yet. It won a Golden Globe for best motion picture and Rami Malik who played Mercury won an Oscar, BAFTA, Golden Globe and Screen Actors Guild for his performance, a fitting tribute to someone who died far too young.
I bought Sheer Heart Attack in 1974 and was one of the very first albums I purchased from my local record shop in Ruislip Manor with Killer Queen reaching no 2 in the charts. I still listen to it now quite often and is an iconic album, well before its time and said by some to be one of the first glam-rock’ acts. I’m not sure of that but in the words of Lemmy from Motorhead, it is definitely ‘Rock and Roll’.
Pic: Queen’s cover for Sheer Heart Attack
Some recent AIDS success stories taken from various media outlets:
Highly active antiretroviral therapy become the standard of care for HIV in the 90’s meaning that the progression from HIV to Aids was rare.
Under the ‘Equality Act’ of 2010 HIV became one of a few conditions which was considered a disability from the point of diagnosis, which means people living with HIV are protected from discrimination and it’s illegal to discriminate against a HIV-positive person at work, in education, when renting or buying property and when providing goods or services.
The UK exceeded its ‘UNAIDS targets’ for 2020. Of the 105,200 people living with HIV in the UK in 2019, 94 per cent of them were diagnosed, 98 per cent of those diagnosed were on treatment and 97 per cent of those on treatment were virally suppressed.
However, this still means that around one in 16 people living with HIV in the UK do not know that they have the virus.
Some latest news:
Government doubles funding for ‘PrEP commissioning’ in March 2021
The government has more than doubled its funding for the routine commissioning of pre-exposure prophylaxis (PrEP) in England over the next financial year.
A public health grant to local authorities for 2021/2022 includes £23.4m to cover the routine commissioning of pre-exposure prophylaxis.
“We know the significant impact PrEP plays in reducing HIV transmission, as part of a combination of preventative interventions.”
Finally, for patients and those of us working in radiotherapy and cancer care there is a great LGBTQ community website that provides support and information for cancer patients called Queering Cancer, you can go there by using this link. We follow each other on Twitter too @QueeringCancer!
Click here: https://queeringcancer.ca/