On 2 May 2019, NAPWHA hosted a 1-day forum on ‘Research and representation: the meaningful involvement of people living with HIV in research activities’ where NAPWHA members and networks consisting of representatives from community-based organisations across all Australian States and Territories met with several researchers intimately involved in working with HIV positive people and communities.
The workshop aimed to provide a space for reflection on recent research developments and assist PLHIV organisations and their representatives to build their capacity to engage in future research development.
The below is a transcript of the presentation from Associate Professor Garrett Prestage of the Kirby Institute UNSW, who reflected on 30 years of Australian HIV research and spoke of his own perceptions on how research done about and with people with HIV has changed over the years. He focused primarily on the communities of HIV-positive gay men.
For me, to do good research necessarily means ensuring that the people being researched are part of the research process, and that the research should ultimately be of benefit to the community. However, research can’t be conducted without the expertise of researchers – and I’d argue it can’t be done properly without social researchers, because social context matters.
Research findings aren’t always welcome, and they can be used for good or ill; there’s a necessary balance that comes from the collaboration between community and research that hopefully improves the quality of research outcomes for everyone.
And that brings me to my second point, that research is always political.
Research is very powerful, and research findings are inevitably used as the basis for political and social change. Well-used research is hard to ignore.
The people who comprised the early responders to HIV, at least within the gay community, were others like me who had cut their teeth within the gay movement. So, they had a natural inclination to demand community engagement and political leadership.
When the first HIV research initiatives were started – and that was very early in the response – these early HIV activists made sure that the research that was being conducted was done in ways that ensured community involvement in the process, and was used politically to the benefit of the community.
So, those twin principles were built into the HIV response from the outset. Of course, for the most part, the people in government, clinical research, and social research that we had to work with were good people who were open to these ideas anyway.
But I think it’s important when we reflect on how the Australian partnership response came to be as it is, that we remember just how much our own community activists played a role in making sure that was the case.
Nothing about us, without us – was something that was there from the start, though not articulated quite so succinctly. But I don’t want to characterise this approach to research as consistently collaborative or beneficial.
There’s been a lot of shifts along the way, and not least has been how people with HIV have been positioned.
For the most part, HIV-positive men participating in the early clinical research were positioned as patients. At that time, HIV infection was mostly a death sentence. And, the gay community was a close community. The clinics involved were often led by doctors who were gay themselves, and even when they weren’t, it was still very clear that the doctors involved felt very close to the men who were getting infected and then rapidly deteriorating, and dying, before their eyes. It was a crisis, and they just wanted to find something, anything, that might help.
The efforts of clinical research were on finding, and testing treatment options. And a real tension emerged between researchers and community.
Clinical researchers felt bound by the requirements of gold standard clinical research. Yes, they wanted people with HIV to get treated as quickly as possible, but they needed to ensure that the treatments were properly proven to work.
Community activists didn’t disagree with this in principle, but in practice they often felt it was either too slow or it failed to account for the dire circumstances of some individuals who were so sick or so close to death, that they felt it was worth trying even unproven treatments.
This difference in approach was a recurring theme over several years. For the most part, compromises were worked out, even if there were confrontations along the way. And, just quietly, there was quite a bit of sidestepping the rules – on both sides.
Doctors finding some way to get treatments to patients with little hope otherwise, and patients figuring out who had the treatments and sharing them with those who needed them most. It wasn’t good science, but it was human – and really, it didn’t unduly impact the research.
In the late 90s, the fact that treatments now meant that people were no longer facing inevitable death from AIDS was fantastic, of course. Many of us have our Lazarus stories of friends who came back from their deathbeds. But the treatments back then were harsh, and complicated.
Clinical researchers wanted to reduce the burden, of course, but they also wanted the treatments to be effective. They offered multiple approaches over the years.
- Hit hard and hit early.
- Treatment interruption.
- Delayed treatment until clinical markers indicated it was necessary… and back again.
Mostly, people followed the guidelines provided by their doctors.
So far, I haven’t really mentioned the role of social researchers.
During the earlier periods, social research had a far larger role in understanding prevention than treatment.
Regarding people with HIV, social research mainly provided information about their experiences, as patients. Which was and is very useful, especially in helping support people with HIV get heard. And, when clinical research was focussed on how best to implement treatments, social research has indeed been especially useful in highlighting just how important is personal experience, and the capacity of individual ‘patients’ to act on different treatment strategies.
There is another way, though, that social research has been critical to understanding the experiences of people with HIV – how HIV positive people balance risk and pleasure to protect their partners.
I remember about 25 years ago, I mentioned how many Poz men in our cohort study weren’t using condoms with each other, and that it was completely unsurprising. Why would they? Ross Duffin commented that, of course, Poz men had been doing that forever.
But, at the time, that was simply not spoken about. On the one hand, because it didn’t matter – the concern was all about transmission and so behaviours that didn’t lead to transmission were mostly ignored. It was also unspoken because positive people’s intimate lives, and the emotional well-being that follows from that, weren’t always thought of as an essential precondition for effective treatment.
Since treatments, however, something fundamental happened in how people with HIV came to understand that balance between risk and pleasure, in the decisions about protecting partners.
I was looking back over old questionnaires the other day, and I noticed in 1999 we were asking gay men a question about whether having an undetectable viral load reduced the likelihood of an HIV-positive man transmitting HIV to his partners. That’s 20 years ago! And how long was it between then and when undetectable viral load was recognised as an effective basis for risk reduction? That’s right – a long, long time. And that’s despite the fact that even in the late 90s it was known that if pregnant HIV-positive women were on treatment they could probably avoid mother-to-child transmission.
So, similar to when I noted in the early 90s that many Poz men were having condomless sex with each other, many people with HIV could easily see the evidence about viral load.
Over a decade ago, Asha Persson from the Centre of Social Research in Health at UNSW noted that many serodiscordant couples were discarding condoms when the positive partner had undetectable viral load. Because, as they could see it, despite the lack of advice from anyone to support them in their decisions, they were confident that undetectable meant untransmissible. And they were right – as I know some of you in this room can testify to and who haven’t always been treated fairly for acting rationally based on the evidence. But, why did it take so long?
Now, yes, of course, the research had to be done, to absolutely provide the proof. Of course, it did. Just as it had to be done in the search for effective treatments. But, just as with the treatments research, people can’t always wait for proof – at least not for the absolute certainties that are usually mandated before policy can change. When logic dictates a well-informed interpretation of the available evidence, many people will act on it, ahead of the absolute proof. They aren’t always proven correct, but in the case of HIV they often were. People make these decisions because life is more than just risk-avoidance. It’s also about pleasure and intimacy.
Although, for people with HIV those things are always in balance against the possibility of endangering one’s partner, and that’s no small consideration for most Poz people who would find such an outcome to be deeply traumatic.
At this point in the epidemic, however, I think people with HIV are in a very different position to what used to be the case.
Treatments research remains important, but it’s about making improvements to what for most people with HIV is a pretty good situation, and about identifying new options for the small proportion of people whose current options are limited. And, because the current situation is pretty good, that also means that most diagnosed people with HIV are undetectable, and therefore represent no risk for transmission.
On the other hand, the advent of PrEP means that considerations about HIV transmission risk are becoming less and less of a factor, at least for an increasing proportion of gay men. While HIV stigma is still clearly present, it’s also obvious that there’s less and less need for gay men to even discuss HIV.
These are, of course, good things – profoundly good things. But, it leaves a question about where people with HIV actually fit in the research agenda.
In some ways, they have perhaps become somewhat peripheral to the HIV research endeavour. Indeed, there’s also been a shift in the way people with HIV think of themselves over the past two decades.
We started to notice in the early 2000s that Poz men were less likely to consider their HIV status as central to how they viewed themselves, or to consider themselves as part of a Poz community. And HIV has become less and less of a marker of difference over time.
It still matters, of course, and that’s very clear when you read the transcripts of interviews we conduct with recent seroconverters. No matter how much they had put HIV out of their mind beforehand, or how much they had thought of it as not being such a big deal anymore, once they receive that diagnosis then they realize just how much it does still matter.
But, even so, the fact that they had previously often thought of it that way (or not at all), highlights just how peripheral HIV is becoming.
I’ve been left wondering if the issue is more: What’s the role of the effectively treated, healthy person with HIV in HIV research now?
There are three categories of people with HIV that research is mainly concerned with these days:
- undiagnosed individuals;
- those who have been diagnosed but aren’t yet treated and virally suppressed;
- and those for whom treatments have failed, or at least aren’t working so well.
I could be cynical and say this is all driven by a prevention paradigm where individuals with HIV are just seen as vectors for potential transmission. I think there’s some of that in the macro decision making process, but at the more personal level, individual researchers, and policymakers, are equally driven by the need to ensure all people with HIV have access to effective, and easy treatment.
I should specifically talk about the HIV Seroconversion Study and its current incarnation, the RISE study (Recently Diagnosed and the Impact of Support of the Experience of HIV). As many of you know, there’s been some version of a seroconversion study in Australia since 1992. That, in itself, is remarkable – and unique in the world. The stories and experiences of people recently diagnosed with HIV are profoundly insightful, and moving. But, the focus in the current RISE study is on people’s experiences after their diagnosis – how easily they transition to treatments, what’s the impact of their diagnosis on their relationships, and how does it affect their emotional wellbeing long-term.
A particularly relevant point about RISE concerns how much more difficult it’s been to enrol people into the study. We’ve always had difficulty getting clinics to refer people into the Seroconversion Studies, and in the previous incarnation we relied on people either finding their own way to the study when they searched online about HIV after their diagnosis, or being referred from a peer-support program in one of the community organisations.
For RISE, the clinics have continued to not refer people, despite good intentions. But also, not many people are finding the study themselves. I suspect they’re less likely to be going home and doing online searches to the same extent as they used to. Nor are many referred from the community org programs. Of course, the organisations have fewer programs because fewer people want to join them. It’s probably important to note that the most common source of enrolments is actually through TIM (The Institute of Many). Those that do enroll into RISE seem to be as willing as ever to participate, so I suspect this is not so much about willingness as it is about not needing the same kinds of information and support as used to be the case and which also led to them finding the study.
None of that, however, speaks to the role of healthy, effectively treated people with HIV in ongoing research agendas.
There are, undoubtedly, good reasons why people with HIV who are effectively treated need not always be considered separately anymore. Why should they be? Their overall health seems to not be especially different to many other people, probably better than most with ongoing health conditions. And, they can’t transmit HIV anyway, so who cares?
Ah, but there’s the rub. Who cares!
The trouble is of course, that a lot of people do still care, and care enough to be either fearful or rejecting. Sure, it’s happening less often than was the case in the past, but it’s far from an insignificant issue. In the recent Telling survey, we found that even among men on PrEP many still avoid sex with Poz guys, if they knew. Stigma, regardless of its origin, or even motivation, is bad enough in itself. But, its demoralising effects on emotional well-being can do real harm, and can ultimately impact on things like treatment adherence.
Stigma isn’t the only thing at play here, although it’s probably the single most outstanding issue that potentially impacts on all aspects of both treatment and prevention research.
There’s a good case for why many effectively treated people with HIV quietly slip into the background to just be like other people without making HIV a visible presence in their lives. Despite that inclination by some, many others feel that HIV is still an important consideration in their lives. And as long as it makes some sort of difference, then it’s important that people with HIV have a visible presence in decisions about research that affects them, even if it’s not directly ‘about them’.
However, I suspect this means that the expectations of engagement that were often assumed in the past can’t be expected to proceed in the same way, or at all. Increasingly, as I see it, at least in relation to gay community based social research, our focus is less and less on Poz men and more and more on gay men in general. Or, in relation to PrEP, on neg men only. Or, on undiagnosed men and how to get them diagnosed.
But, in all of that, Poz men have key insights, and specific interests – or at least, they’ll continue to have those interests as long as anti-HIV stigma persists.
So, what do I reckon is in the future for research among people with HIV?
Clearly, stigma remains the key issue, and it impacts on every aspect of HIV research. And people with HIV must be deeply involved in any research about HIV stigma. Beyond that, there are those three categories of people who have become the priority categories of people with HIV:
- not yet treated;
- and ineffectively treated.
All three are small groups, and often not empowered to advocate on their own behalf. So, it is of course incumbent on HIV community-based organisations to represent, and protect their interests.
About Associate Professor Garrett Prestage
Garrett is a sociologist who works in both quantitative and qualitative social and behavioural research and is committed to community-based research. He mainly works in the fields of risk behaviour and sexuality. Garrett’s research interests include: HIV transmission and prevention among gay men; the roles of identity and community in understanding how individuals negotiate risk and pleasure in their lives; survey design and questionnaire development. Garrett has been actively involved in the gay community for over thirty years and has worked in gay community-based research since 1983. His first HIV-related research was in 1985. He currently leads the HIV Seroconversion Study and the Pleasure and Sexual Health (PASH) Study, and is an Investigator on the Gay Community Periodic Surveys as well as several other studies. Read more