How people from the LGBT+ community contributed to HIV research
29 Nov 2024
For the past 30 years, the MRC Clinical Trials Unit at UCL has been at the heart of research into the treatment and prevention of HIV, including trials focused on finding a cure. Read Sheena McCormack’s story of how she became involved in this work and about key breakthroughs in the field.
Have you always worked in the HIV field?
After medical school and house jobs I entered a general medical training programme. A portion of this, to start with, was in renal medicine where I saw the transformation that follows a transplant – having built relationships with those attending three times a week for renal dialysis.
In the mid 1980s, I moved serendipitously into sexually transmitted infections, starting as a short-term locum at the Martha and Luke clinic at West London Hospital – mainly because it was close to home. This was where I first came across people living with HIV, many of them suffering with advanced HIV related illnesses such as pneumonia, blindness and other AIDS-defining conditions.
HIV tests became available and it soon became clear just how many people were living with HIV even though they had no symptoms. Although the staff at the Martha and Luke clinic knew what this meant for their future, and so did the individuals, the implications were not well known amongst the wider medical profession, who would not have had any HIV medicine in their training, or the UK population.
What are your earliest memories of people from the LGBTQ+ community getting involved in HIV field?
In London at the time, those primarily affected with HIV were members of the gay and African communities. From the very beginning, the gay community was particularly good at sharing information with each other and supporting those living with HIV, and advocacy. They were extremely knowledgeable and very engaged in treatment decisions, but we had very little to offer against HIV itself.
The doctor-patient relationship was paternal in those days, but people living with HIV did not accept this, and it reminded me of my earlier experiences with adolescents in the renal unit. The same condition is still unique to an individual and you have to listen and try to accommodate their experience of it. It was quickly evident that stigma was associated with HIV, mostly due to fear and ignorance about transmission, but definitely worse in sectors of society with endemic homophobia.
The MRC CTU also played an important role. In the mid to late 1980s, Janet Darbyshire and Abdel Babiker at the MRC Programme on AIDS worked on the Concorde study (Anglo-French randomised double-blinded trail comparing immediate and deferred zidovudine (AZT) treatment in asymptomatic people living with HIV). This showed that despite early promise, AZT did not have a long-lasting effect in treating the virus, raising the concern that HIV would become resistant to all treatments.
Subsequently in 1996, a combination of three drugs was found to completely suppress the virus. This was so exciting, but we were still not sure it would last. After a significant period of time – years – confidence grew, although it was not until 2016 that the undetectable equals uninfectious (U=U) campaigns took off.
How has involvement of the LGBTQ+ community evolved over time?
The gay community was instrumental from the early days of HIV in communicating and updating on research and developments, in ways that were easy to understand. The community was particularly strong in mobilising care, with the growth of organisations such as the Terence Higgins Trust fighting stigma through information campaigns and promoting prevention methods.
Many members of the community who were not living with HIV participated in the early phase vaccine trials and those living with HIV were keen to make a contribution to the research for treatment. There were also several African community organisations set up to support people living with HIV, and individuals who were more comfortable to declare this promoted HIV testing in their community.
These efforts ramped up considerably when we had effective treatment, but even more so with U=U and the arrival of drugs that were better tolerated and taken once daily. A less discriminatory society makes it easier for people to be open about their sexual orientation and living with HIV, which in turn makes it easier for them to access testing and care. This is why I am saddened to see legislation in some countries shifting in the opposite direction or remaining as discriminating as it was 100 years ago.
When we were deciding how to respond to the results of the first placebo-controlled PrEP trial (PrEP, or pre-exposure prophylaxis, is medicine people take to prevent getting HIV) there were concerns amongst community groups, as well as clinicians and policymakers, that this would undermine the message that condoms were an essential preventative measure.
This was why we had to design the PROUD trial, comparing PrEP to no-PrEP with everyone receiving the same standard of prevention in the background. Those who did not receive PrEP in the first year would have access in year 2. But before everyone reached that point we had overwhelming evidence that PrEP was highly effective, as the rate of HIV in those just using condoms was shockingly high.
We worked through community contacts on a short film, which we took on a roadshow round England to share the evidence that PrEP was clearly needed in addition to condoms. The NHS halted the commissioning process because no one could be confident about the demand for PrEP, so they could not determine the budget as the drug was still on patent and expensive. This required further research in a large, single arm study (the PrEP IMPACT study) to fully understand the costs. Even before the PrEP Impact study started in October 2017, we had seen a decline in new infections at the 56 Dean Street clinic where I also work. This was undoubtedly down to the gay community sharing the evidence from the PROUD study widely and promoting self-purchase of generic PrEP.
The team and oversight structure for the PROUD trial, which included community members and local and national commissioners, was key to the effective dissemination of the results. We had a wonderful social scientist on the team. She coordinated the qualitative research which was part of the protocol, and the Participant Feedback meetings which were facilitated by the Community team members.
The results from the PROUD study informed national guidelines and international guidelines on HIV prevention, but most importantly they changed attitudes to PrEP, as clinicians and communities started to really believe it could change the direction of the epidemic. The film about the study incorporated individual testimonials from the public health agency, researchers and, most importantly, participant voices, which were pivotal in convincing people of the broader value of PrEP. We found that others who had participated in the trial were proud to acknowledge that they had been part of PROUD.
Looking back over my career in prevention trials, key components have always been the inclusion of qualitative data and community engagement - directly with the community as well as through partnership with community organisations. These two elements allowed us to understand the context for our results and the factors that could facilitate the uptake of PrEP or act as barriers.
When a trial delivers a result that is groundbreaking, like the effectiveness of triple therapy or PrEP, the community partners have the activism experience that is essential to persuading policy makers to move at speed. I feel very privileged to have been part of the advocacy efforts for PrEP and have learnt an enormous amount from my friends in these organisations.
Further information: