World AIDS Day - reflections on 40 years
It's World AIDS Day and 2021 is also the 40th anniversary year of the first UK AIDS death. Our current and former clinical leads for HIV share the reflections on the last 40 years.
Dr Stuart Glover, now retired, remembers treating Aled Richards, whose friends went on to set up a support group in his name. This group later became part of the Terence Higgins Trust and its office has a Bristol Civic Society Blue Plaque to acknowledge its significance,
He recalls: "Having qualified in medicine in 1972 and having trained in Aberdeen, Birmingham and London I was appointed as a General Physician and specialist in Infectious Disease and Tropical Medicine assuming the post in February 1982. I recall reading (and filing) a copy of the 18 June 1982 Morbidity and Mortality Weekly Record which gave details of a cluster of PCP (Pneumocystis pneumonia) and (rare cancer) Kaposi’s Sarcoma cases in California. I also recall the description of a syndrome reported in this publication of gay men with fevers, night sweats, severe weight loss and diffuse lymphadenopathy.
Thus primed, I recall seeing Aled Richards (not his given name) who presented with the same syndrome, and for which no then known cause could be found. Suspicions aroused I took the case details to a meeting of Infectious Disease specialists in London. It was agreed that Aled in all probability had the same condition which was being seen with increasing frequency in the USA. Aled remained unwell and ultimately developed a very disfiguring Kaposi’s Sarcoma and from which he died in 1984.
I was originally based at the old Ham Green hospital in Pill. This was an old infectious disease hospital with separate pavilion style buildings, the most remote of which was the Dangerous pathogens Isolation Unit for Lassa Fever and Ebola Infection! It was to this ward (T ward) that our then exclusively gay men were admitted and treated. I was privileged to have a great team of nurses who showed no fear of this new syndrome and exhibited no prejudice against our patients.
During Aled’s two-year illness his friends rallied round and formed a voluntary group to support these patients both in hospital and in the community. This became the Aled Richards Trust (ART) latterly subsumed as the Terence Higgins Trust West. The women’s group led by Katie Holtuis developed in parallel with the ART. Without the support of these organisations and the unnamed friends, lovers and volunteers our job as carers would have been so much more difficult.
There were no really effective treatments until 1996 when the triple drug therapies became available. Consequently, virtually all the patients I looked after between 1982 and 1996 died of a variety of then uncommon and unusual infections, cancers and lymphomas."
The profile of patients slowly changed and in the late 80s and early 90s new treatments started to be developed.
"The real breakthrough came in 1996 with the triple therapies based on the Protease Inhibitors. This was the game changer! Inpatient numbers dropped, outpatient clinics became busier and there was a need to broaden the HIV hospital team from a single consultant to include specialist nurses, psychologists, pharmacists, dietitians and of course a second and third Consultant with expertise in HIV medicine.
By that time Ham Green Hospital had closed in 1990, the Infection ward being moved to K ward in Southmead Hospital.
"The High Points over my 30 years of involvement in HIV/AIDs:
- The transformation of life quality and quantity given by the Highly Active Antiretroviral Treatments:
- The ability to prevent vertical transmission to unborn children:
- The ability to reduce infection transmission by Prep (Pre-exposure prophylaxis)
- The privilege of teaching students and other trainee professionals about HIV in all its manifestations.
- The privilege of working with a dedicated team of professionals.
Dr Gompels joined the team at Southmead Hospital in 1999.
"I have worked in HIV since 1989, when I started working at St Mary’s Hospital in London. At that time there were no treatments for HIV and we were only able to treat the other infections that arose from their HIV infection. This era is very accurately portrayed in the recent drama, “It's a Sin
I became inspired by the team I worked with in London and the patients to do further research in this area and undertook an MD.
I came to Bristol in 1999 to join the HIV service with Dr Glover, on K ward at the old Southmead Hospital.
At that time we were introducing new HIV drugs, which were effective, but involved taking large numbers of tablets and had unpleasant and visual side effects. We had about 150 patients. We would often have four or five inpatients and many still died from HIV.
Over 22 years we have seen the amazing improvement in care. There have been newer, better, safer, stronger HIV treatments. Now the majority of patients have been able to go on one tablet a day.
This month's announcement of a two monthly injection to treat HIV is how far we have come in a relatively short time.
We have about 1,300 patients under our care, and we have less inpatients, often only one or two and sometimes none.
Patients are able to lead very normal lives. Over 50% of our patients who die, die from old age and not from their HIV!
I am very pleased to say that in Bristol we have been delighted to be contributors to a lot of the milestone studies over this period of time:
- When the best time is to take retroviral therapy (Start Study);
- Whether you can sexually transmit HIV if your HIV is fully treated (you cant! – Partner study);
- On the life expectancy of patients in the UK with HIV – how good it has become;
- Numerous new drug trails and other research of treatment which are now in mainstream use.
We are now signed up as a city to Fast track cities project with them aim of achieving no stigma for HIV, equality of access to care and UNAIDS targets of 95:95:95, having achieved 90:90:90.
It has been a privilege to work with patients, who have contributed most of all to this.
World AIDS Day - reflections on 40 years