This is Part II of a three-part series about effective communication during crises like our current pandemic of Covid-19. In Part I argued To avoid panic, promote efficacy. This post looks at how we can craft reliable communications during times of crisis. A third post will take a longer view, looking at anticipating inequity in how we respond to crises.
I was initially concerned this post might be a bit technical, relevant only to experts and insiders. But reliability has become a major political issue over the past week of the online conversation about Covid-19 and Australia’s response to the outbreak. People have been making and circulating ‘home-brew’ graphs, many from engineers and IT guys. Without any modelling skills at all, and without any information on Australia’s outbreak other than infection numbers, they visualise doubling time and little else.
Governments have been muddled in
their messaging, and with a few exceptions, slow and indecisive in their
responses to the outbreak.
In the absence of effective
messaging, some commentators have taken to social media, writing blog posts,
tweet threads, and even making memes to communicate information about the
pandemic. Some are better than others, and some efforts are downright
misleading or actively counter-productive. In some cases, we have people
communicating outside their usual scope of practice, and beyond the limits of their
experience and expertise.
A particular concern is
that some of these DIY educators are communicating in a tone and style that
I am everything that Katherine Wolfgramme loves to poke at on her social media: lefty, non-binary, and a lover of queer theory. Because I am those things, I am concerned about the recent letter campaign against her. The campaign calls on Katherine to stand down — or be stood down — from her positions as an Associate of the Mardi Gras Board and an Ambassador for the Gender Centre. (In these comments I am only writing about the open letter to Mardi Gras published in early December 2019.)
Although this piece is forthright about the problems of that campaign, I am writing it as a call to dialogue. There are material issues raised on both sides, and our communities can benefit from talking through them. But that conversation cannot happen in the situation as it presently stands. It both highlights the need and presents an opportunity to develop accountability processes that go beyond callouts and cancellation in response to conflict and misconduct.
I’m going to delve briefly into the substance of the campaign, mainly to highlight the important issues that are in play, the problems with unchecked interpretation, as well as the high stakes involved. But I’m focusing mainly on the accountability of the process, and I’m calling for the Sydney queer community to develop effective and non-violent accountability processes. This is a matter of fair process, transparency, understanding our history and being aware of different kinds of power. This is not about defending Katherine — it’s about the consequences for our community if we don’t find a way to raise and resolve the issues, which affect us all. Demands for accountability must themselves be accountable.
In 2014 I was asked to contribute a piece from an HIV-negative perspective to a monograph on the positive voice, published in the lead-up to the International AIDS Conference in Melbourne. It was written for an audience of HIV sector insiders — practitioners, researchers and policy people — from a ‘pracademic’ perspective, drawing on my experience in practice and my training in cultural studies.
After much back and forth, the editor said it was ~problematic~ and he would only publish if I took significant chunks out, so I withdrew it. Recently the language of HIV neutrality has come back around, and there have been resurgent concerns about serodivision, so the issues raised in this piece remain unfortunately relevant. So here it is. As always, I welcome your thoughts and feedback in the comments.
A personal journey
So far I’m still HIV-negative, ten years since I began working in HIV. It has been on my radar for longer, ever since one of my first partners disclosed he was living with HIV, after we broke up. I didn’t panic then, but the first time someone disclosed their status to me before a casual encounter, I did: the oncoming rush of emotion meant I couldn’t go ahead with sex, and I projected my sense of failure onto him.
My shame afterwards was a wake-up call. I still feel strong emotions when someone discloses to me — not fear of infection, but feeling their vulnerability in that moment. But like a lot of negative men, in my twenties and thirties I undertook a slow and deliberate process of learning how to manage those emotions and respond to disclosure in a skilled way that did not derail the sexual or romantic potential of the encounter.
Guest post by Steve Spencer, from his presentation on a consumer perspective on PrEP to the 2019 Australasian HIV Conference in Perth (edited for publication by Daniel Reeders)
Conversations changed my life as a PrEP user, and that’s why I’m really excited to bring the consumer perspective to the conversation about ending HIV. Before coming, I asked my social media community for insights. What do they want to tell you? What do they want to hear from you? And what do they demand as PrEP users? I asked them what is good and what is bad, what their hopes are and what their fears are. The lived experience of PrEP is deeply personal and more complex than these binaries, so this is just a snapshot.
We all know the frequently
asked questions, we know the topics du jour surrounding PrEP. So I will
start by drawing attention to the less discussed topics that, as we approach majority
coverage of PrEP in ‘at-risk’ groups, are becoming issues the HIV sector must
I am now a person living with
HIV, and I can’t help but speak from a dual perspective. As a sector — as a
community, in fact — we understood that some people would get HIV when
condoms were the only prevention tool we could offer guys who wanted, as they
say, to fuck raw. But we are so far away from accepting that PrEP users
can get HIV too.
The ‘age of PrEP’ as the ‘end
of HIV’, as some see it, presents myriad challenges for those who seroconvert —
in rare cases where medication has failed, or more commonly, cases where education
hasn’t got through or the regimen hasn’t been doable. Whatever the reason, PrEP
users who seroconvert are facing old stigma with a whole new intensity — and
this is unacceptable.
PrEP has uncovered the hidden
demographics of new diagnoses, and they tell us we won’t be ending HIV any time
soon. So any discussion about PrEP and its enormous, mind-blowing success, has
to be tempered with the reality that many people aren’t benefiting from it yet,
many people will get HIV in the future, and people with HIV are still living
with stigma and still need support and respect.
So, what’s the
good news about PrEP?
Other than the excellent news
it works exceptionally well at preventing HIV, PrEP users are excited that PrEP
use is growing and becoming more dynamic. It’s more common to find partners who
share the lived experience of being a PrEP user. I remember how difficult it
was being an early adopter — all the fears that I had to constantly assuage in
Also, static and conservative
clinical guidelines are finally relaxing. Use of on-demand, or event-based PrEP
is growing and is slowly being endorsed by clinicians as an option. Importantly,
our diverse communities with diverse behaviours and diverse prevention needs
are beginning to find and share the diversity in PrEP use. They have options
for using PrEP that adapt to the uniqueness of their lives. This is truly
groundbreaking. We talk about the HIV preventative ‘toolbox’, well, we’re
discovering that PrEP is the cordless screwdriver with many different heads.
In terms of access, it’s
getting easier and easier to access PrEP. Whether it is through the PBS or
online, there are many price options and access options. I would particularly
like to draw attention to the innovative 3-for-1 schemes available at a few
Melbourne pharmacies, where you get 3 months (a standard script) worth of drug
for the price of one month, thanks to a charitable organisation. And we demand greater
roll-out of these sorts of schemes – with the listing of PrEP on the PBS, access
through many pharmacies became less affordable than buying it online, and
making PrEP cheaper should be a goal for pharmacies.
We’re not getting women. We’re
missing heterosexual men and bisexual men who aren’t community attached. We’re swinging
for but missing trans people. We’re not reaching out to Indigenous communities.
We’re missing culturally and linguistically diverse people and overseas-born men
who have sex with men. We’re swinging for but still we are missing
international students. Clinicians and researchers and health workers see it in
the statistics, and we all see it in the changing demographics of new diagnoses.
PrEP-users acknowledge this gap and they are also the perpetrators of the
stigma against non-users. A gap is being created between PrEP users and
non-users, and over time division will be felt in our community.
While it can be argued that PrEP
is shrinking the serodivide between negative and positive people, there is
undoubtedly miseducation, misinformation, and plain old stigma and
discrimination against people living with HIV by PrEP users. Persistent stigma
against people living with HIV during this period of significant growth in PrEP
use is a scourge – when you see ‘PrEP 4 PrEP’ written on a Grindr profile, this
isn’t a sexual preference, it’s a failure of education. It harms the entire
community, and those scared men are being let down, because they are not getting
support to embrace the science and the life-giving U=U message that should be
welded to the PrEP message.
At a practical level, the
discussion about cost needs to continue. The medication itself can be relatively
cheap (depending on your access options), but doctors and pathology are not
cheap. If we are to achieve a greater number of users to help bring down HIV
diagnoses, we need to make it as easy as possible to access the entire PrEP combination
to ensure positive health outcomes.
As a final point about what we
can improve about PrEP, we continue to see doctors misunderstanding PrEP and
the unique needs of their patients. When a doctor doesn’t support you to use
PrEP, you’re disempowered to protect yourself. They tell you: ‘I’m sorry, we do
not promote that behaviour, you are on your own.’ And that’s a problem. Would-be
PrEP users experience friction and discrimination from clinicians, and this is a
particular problem for people outside of community-attached gay and other MSM
— the groups I mentioned earlier. We battled that resistance to daily PrEP
and won, now we have that same fight all over again with event-based PrEP. We’re
even seeing people report feeling judged when they cease PrEP use.
Prevention decisions are
personal choices. They should be informed, but not judged. We should not underestimate
the ability of individuals to access cutting-edge information and apply it to
their own needs in real time — and to share it, thoughtfully, with their mates.
These people need to be supported to achieve the best outcomes. I have
experienced this personally, when you’ve done the research, you know your
options, and your doctor says you’ve done the wrong thing. I can tell you it
leaves you feeling confused, it leaves you feeling awful.
What are the
fears of PrEP users?
PrEP users are still afraid of
HIV. It is really sad to say. They are still afraid of people living with HIV.
It only takes a glance at any online PrEP forum to see the level of fear that
persists amongst PrEP users, even among some long-term users. Intergenerational
trauma and intra-community division will take a long time to dismantle – a blue
pill doesn’t make it go away.
As PrEP use becomes more
mainstream, people starting PrEP often don’t fully understand or engage with
the science. Where is our education going wrong, especially around other STIs, when
PrEP users are still oppressed by anxiety and fear (and projecting these fears
onto others)? Many users still understand HIV as an abstract concept. Speaking
personally, what I learnt about HIV after my diagnosis shook up my preconceived
notions about what it’s like to live with HIV. More importantly, it taught me
how I can be a better PrEP advocate; it has given me a keen eye for the
fault-lines in our approach to PrEP and its place within HIV prevention. When
we are operating in competition or in silos, we are not working together and it
is prohibitive to our goals.
What are the
hopes of PrEP users?
Hope is my favourite topic right now, because there are so many areas of current cutting edge PrEP research that offer reasons for hope. PrEP users want to see injectables, they want to see implants, they want to see a vaccination. These are currently visible on the horizon and they are the future that PrEP users demand soon. We knew, years ago, that taking a pill every single day to keep you safe from HIV would become a thing of the past. Medical innovation will improve on PrEP as we know it, make HIV prevention more simple, more available, and more suited to each individual. Just like the first participants in the early PrEP studies, HIV negative want to do what it takes to make these advances a reality.
PrEP users, like the rest of
us, hope for the end of HIV. This can only be achieved with the full
endorsement of U=U — the combination of PrEP + U=U is a formidable force to end
HIV. We need to listen to HIV positive voices on how this can be achieved. As a
young PrEP activist in Melbourne five years ago, I learnt everything I know
from people living with HIV. They were formative in how we adapted the PLHIV
playbook to the needs of PrEP users and prospective users. This legacy must
We have done an amazing job in
Australia and we are world leaders in responding to HIV, from everyone working within
the sector, to the grassroots movements and organisations that changed the
culture around PrEP and made space for the science to work, to the individual
PrEP users that took that first leap of faith. I know faith has very little to
do with science, but now the science is in, PrEP users have faith in PrEP, and they
have faith in our abilities as a sector, so it’s time to build on our success. We
let everyone down when we don’t educate properly on PrEP.
The most common form of oral PrEP is daily dosing — but it’s not the only game in town. In guidelines launched at the recent International AIDS Society conference in Mexico, the World Health Organisation endorsed what it calls ‘event-driven’ PrEP, and the CDC has endorsed ‘consistently’ taking at least four pills per week. While the evidence supporting non-daily PrEP is rock solid, the language we use to talk about it remains unsettled.
Through my work on the Rinse and Repeat campaign, I have first-hand experience of the language challenges posed by non-daily dosing, and with this post I want to raise them for discussion in the global HIV prevention community.
My perspective in this post reflects the communities I work with and belong to — queer people, trans folks, gay and bisexual men and other men who have sex with men (GBM), and people from migrant and refugee backgrounds (and all of these categories overlap all the others).
(Sidebar: I personally identify as a queer nonbinary person who does ‘gay male’ drag when it helps me connect with the communities and colleagues I’m working with. I’ve felt that disconnect since 2004, and this is my coming-out post. My gender is Daniel, my pronouns: just call me Dan.)
Two kinds of non-daily dosing
There are two approaches recognised by the WHO.
Taking two pills at least two hours before sex, and then another pill every 24 hours after that, until two days after your last sexual encounter. The WHO calls this ‘event-driven PrEP’ and ‘2+1+1.’
Taking a pill on the same four days each week, e.g. Tues & Thurs & Sat & Sun. (Someone needs to make that a t-shirt.) Also known as ‘T&S’ dosing. This is implicitly endorsed by the CDC but not endorsed by name.
This approach is called different things in different places. It has been called on-demand, event-based or event-driven, intermittent or episodic, ‘disco dosing’ and 2+1+1. The approach was first proven to work by the IPERGAY study in Paris and Montréal, and in French, it’s ‘on demand’ PrEP. That’s what it’s commonly called in the UK as well.
Recently, with funding from Dynamix and help from some creative mates, I developed a resource that illustrates the first approach. The dosing schedule is surprisingly complicated — we often describe it in a single sentence, but when you diagram that sentence out (nerd alert), it involves more than seven discrete pieces of information, some of them relative to each other.
One of the few pieces of communication psychology everyone knows is the 7±2 rule — i.e. most people struggle to hold more than 5-9 pieces of information in their head at one time. And that’s just to remember them; the dosing schedule requires you to process them.
So in the Rinse and Repeat resource, we broke down the dosing schedule into six easy steps that anyone can follow. The short film introduces the broad concept and people can visit the website to find the six easy steps.
In that project, after a fair bit of discussion, I went with ‘event-based’ PrEP. It’s not catchy at all and that’s physically painful to me. The main alternative was ‘on-demand’ and that wording is both catchy and agentic.
And my concern is that people hear the name ‘on-demand’ and think they understand how it works. When I talk about the project, people who weren’t familiar with EBP often said ‘so you only take a pill when you have sex?’
In this case, on-demand means as-needed, but in everyday usage ‘on-demand’ usually means at-will, i.e. whenever you feel like it.
Educators are already telling me they are hearing from people who have messed up the dosing schedule because they didn’t understand it clearly when they started.
The WHO has gone with event-driven instead. They didn’t consult me. Again. (It’s okay, I’m fine, I’ll get over it. Eventually.)
But they also went with 2+1+1. I understand this label comes from PrEP roll-out workshops and focus groups with heterosexual folks and people in low-income countries. Again, it’s catchy and it gets the idea across… kind of. It leaves out the timing, which is pretty important information.
I have the same concern that someone might hear it and think they understand it without further research. In the Rinse and Repeat campaign, I went with the slightly jargon-y ‘event-based’ naming because I want people to google it up before they try it out.
The other problem with 2+1+1 is that it embeds a very heterosexual model of sexual life. Sex once a week on Friday after the kids have gone to bed, one and done. It leaves out people who have more than one encounter (or more than one day of encounters).
With EBP, you take a startup dose of two pills, then a follow-up dose every day, around the same time, until two days after your last encounter. Calling it 2+1+1 obscures the fact that if you keep taking a daily follow-up dose, event-based PrEP can protect you for a week, a month, or a whole season of sex. (Shout out to my peeps enjoying summer in Montréal!)
Anticipation, not planning
In my home country of Australia, campaigns about PrEP have universally focused on daily dosing. I’ve argued that ‘take the pill every day’ has become the new ‘use a condom every time.’ The evidence shows it isn’t required — in the iPrEx trial, nobody seroconverted if they were taking at least four tablets per week. But some people are just uncomfortable thinking about sex outside of a prescriptive normative framework.
So while we knew from the IPERGAY study that event-based PrEP is a thing, people talked about it in a very specific way that implied it’s dubious or only marginally relevant. They say it’s only suitable if you can plan your sex life in advance.
And everyone wants to think of themselves as spontaneous.
The Rinse and Repeat campaign emphasises the flexibility of EBP — the tagline is Whatever comes your way, ‘from an occasional fuck to the occasional fuckfest, event-based PrEP has got you covered.’
And instead of talking about planning, we talk about anticipation — if you’re feeling frisky and you think you might be getting some later today, take a startup dose now. If sex doesn’t happen, no harm no foul.
Exactly the same meaning, without the disparaging connotation. EBP was first tested among sex pigs in France. Les cochons were having a lot of sex. They certainly weren’t scheduling their fucks in dainty little date books. During the IPERGAY study and since, there have been no seroconversions among GBM doing event-based PrEP in France.
Cis women and trans folks
This is really tricky and I want to take a moment to put my remarks in context. In the late 80s and 90s, HIV social researchers described how the epidemiology of AIDS was challenging what Michael Warner has called the ethnic model of LGBT civil rights movement — the notion that ‘gay’ or ‘lesbian’ is comparable to an ethnicity, a relatively self-contained community defined by a common identity and shared culture.
Except there were people being diagnosed with HIV, who identified as straight men and were having sex with men. Or lesbian women who were having sex with gay men. And trans folk, whose lives were not and still are not (IN! TWENTY! NINETEEN!) reflected in epidemiological questionnaires.
The lesson from that was: talk about sexual practices, not identities. (If heterosexual people learned one thing from sex ed, it was “AIDS affects everybody.” Well-meaning but a gigantic distraction from the fact HIV impacts hardest on oppressed and underserved communities.)
In my PhD, I document the way in which the Australian health promotion response to HIV began targeting collective social forms, such as networks, sexual cultures, and communities from the late 1990s onwards. This followed (s l o w l y) after social research that identified particular practices, such as use of crystal methamphetamine, and the practice of fisting, are not independent causes of HIV infection; instead, they are markers of sexual cultures and interpersonal networks with higher HIV prevalence and increased (though quite nuanced) practice of unprotected anal intercourse. So I might refer to sex between men and gay culture in the same piece, talking about different things (a sexual practice, a cultural form) in each case.
When we wrote the first draft of the Rinse and Repeat, I didn’t want to single out trans people or cisgender women — because the diversity of people, bodies, lives and experiences isn’t reflected in those broad labels. Instead, we used positive language, saying that EBP offers protection from HIV transmission during anal intercourse only.
However, there’s now evidence that feminising hormones might affect the way the drugs in PrEP are metabolised, which could, in turn, mean that four pills per week are not enough to achieve protective concentrations. We also know that it takes a lot longer to reach protective concentrations in the urinary tract of people with vaginas/front holes, so EBP does not provide protection for vaginal or front-hole intercourse.
(In both cases, we recommend taking a daily dose for 28 days before having condomless intercourse, rather than doing EBP or T&S dosing.)
So I want to hear your thoughts on: how do we talk about these variations in the protection offered by EBP?
As a communications person, I think it’s simpler and therefore easier to understand if we say ‘we recommend daily dosing for trans folks and cisgender women.’ That’s a positive alternative recommendation and avoids a negative and exclusionary framing (e.g. EBP is not for …).
In this usage, the labels ‘trans folks’ and ‘cisgender women’ do not comprehensively identify all the bodies and practices that EBP won’t work for. In a short message (in a voice-over or across the top of a website) they may function as a sensitising device. If you were not assigned male at birth (AMAB), even if you don’t identify with either label, once you know that protection may vary by trans experience and cis-female embodiment, you know that some further research may be warranted before starting EBP.
(IDK, maybe all this dancing around is just me trying to avoid admitting that this is yet another medical innovation that only benefits cisgender men.)
Lately I’ve been thinking about forgetting. I’ve been writing hard on my dissertation, and a lot of stuff goes by that I’d love to blog about, but I try to stay focused. All the things that tug on my consciousness lately involve forgetting, so I am loath to let them go unmarked. This post is necessarily schematic — touching on things I wanted to note in passing, even though I can’t give them the full consideration I’d like to. (I welcome different perspectives in the comments.)
#PrEP4All means patents for all
Earlier this year, PrEP4All, an off-shoot of ACTUP NYC, launched a campaign to demand the United States enforce the patent held by its National Institutes of Health (NIH) over the use of the drug combination TDF/FTC for pre-exposure prophylaxis (PrEP).
The pharmaceutical company Gilead Sciences holds the patent on the drug combination — for another year or three, at least — and has been targeted by activists over its practice of ransom pricing. Indeed, the campaign explicitly links outrage over greedy pricing and enforcement of the patent over PrEP. It demands the US government tax the profits Gilead makes when its drug is purchased for use as PrEP.
The campaign is quite explicit about calling back to the early days of ACTUP when activists fought the FDA over its sluggish approval process for AZT, and pharmaceutical companies over their patent and pricing strategies.
Peter Staley, the wealthy and photogenic activist who took part in those protests and features prominently in films like How to Survive a Plague, said the campaign reminds him of those early days and has described the epidemiologist James Krellenstein, one of his fellow instigators of the anti-Gilead jeremiad, as the future of the movement.
The history-making around AIDS demands heroic ‘leaders’, and leaders are assembled from archival footage without much reflection on who got filmed, who could afford to come out as HIV-positive and get arrested at protests, and who didn’t/couldn’t and for what reasons. This myth-making centres educated white men and erases both queer people of colour and ACTUP’s autonomous collective organising practices.
Forgetting isn’t negligent. Forgetting is enacted. Even in the brain, forgetting is an active process. In culture, forgetting occurs through selectively retelling some narratives instead of others, and letting some narratives and not others shape social action.
The foundational nostalgia of the PrEP4All campaign forgets the entire world outside of white, middle-class, educated New York. What frustrates me is the faith this activism places in the American legal system and intellectual property laws. It consciously forgets the utterly malign role patents played in making HIV treatments inaccessible in low-income countries.
The global patent regime was quite explicitly formulated and advocated by the pharmaceutical industry, prosecuted by the United States Trade Representative, and enacted through the creation of the World Trade Organisation and the Trade Related Aspects of Intellectual Property (TRIPS) regime (Harrison, 2004).
That victory was only overcome, and overcome only temporarily, by the concerted effort of activism encapsulated in the Doha Declaration (2005). The TRIPS regime means that a patent granted in the United States can be enforced around the world. Combined with investor state dispute settlement (ISDS), it means Gilead could sue for expropriation if the United States only enforced the patent in the US itself. Patent enforcement is all or nothing.
It also forgets the trade war and the American exceptionalism that are the official policy of the White House. The ultimate target of the campaign is Trump himself — who has already shown a willingness to appropriate HIV prevention in his political messaging. In the context of a trade war, he is more than capable of announcing plans to enforce the patent worldwide within his favoured rhetoric of ‘making others pay their way,’ as he constantly does with Mexico and has done with NATO.
At a time when we are furiously trying to expand access to PrEP in high-prevalence countries — not all of which are low-income countries eligible for the exemption laid out in the Doha Declaration — encouraging the US government to enforce a patent over PrEP is deeply misguided.
Better than a condom, but undetectable is unmentionable?
My next two case studies are drawn from Australia. This week we saw a poster stuck up in urban Melbourne, announcing that PrEP works better than condoms. It cites a CDC estimate of condom efficacy as a range from 72-91%. This, too, involves a conscious forgetting of the experience of condom use over the nearly 40 years of the HIV epidemic in gay culture and queer communities.
A friend who was involved in Australia’s first gay community HIV prevention campaign ‘Rubba Me’ mentions that gay and bisexual men took up condoms before any studies had shown they worked. We knew they worked, he said, because we were having plenty of anal sex with condoms and we kept testing negative. Prof Kane Race calls this a commitment to ‘intimate experiments,’ a willingness to take risks and embrace uncertainties. (Just like the first people to try PrEP.)
Condoms work when they are used correctly. There are countless men who have sex with men who have been HIV-negative for decades, because they used condoms correctly and personally felt no problem with condoms.
I personally hate condoms. I advocate PrEP and use it when I need it, but I strongly prefer U=U. However, condoms are cheap and they are everywhere, and the same cannot be said for PrEP and even HIV treatment, particularly in low-income counties and countries. Telling people that condoms don’t work is bad prevention strategy.
The CDC estimate was calculated by averaging out studies that included populations in which incorrect use of condoms is common. Just as we report on the 99% efficacy of PrEP when used correctly, we should report condom efficacy on the same basis.
In the 1980s, Prof Juliet Richters studied condom use in three cohorts: heterosexuals, gay and bisexual men, and sex workers. This was a rigorous study — participants were asked to save condoms after use and they were inspected by the researchers. (Talk about intimate experiments.) In a six month period, Richters and her colleagues did not find a single breakage among gay and bisexual men and sex workers.
The study was the original source of a claim that circulated widely in the 1990s — asserting that condoms are only 90% effective. It was cited by homophobes and even by some public health experts as an argument against gay men having anal sex at all. It was based on the failure rate of condoms among Richters’ heterosexual study participants. In other words, the circulation of that claim enacted an erasure of queer people and sex workers, and our skills and creativity in protecting ourselves. So I am extremely troubled to see a similar logic being used to promote PrEP.
Crucially, those posters also forget to mention that U=U is even more effective than PrEP. U=U means ‘undetectable equals untransmittable.’ If a positive person has undetectable viral load, they cannot pass on the virus through sex.
That’s an important message at a point in time where people are saying “PrEP 4 PrEP” in their profiles on hookup apps. As Alexander McClelland points out in a recent feature, the widespread uptake of PrEP has, to some extent, severed our shared membership, whether positive or negative, in a community living with HIV. He writes:
I’ve heard this from guys many times: that my viral undetectability is of no interest. They are on PrEP, so it doesn’t matter what’s going on with anyone else. (…) The moment to have a bonded connection over our shared relationship to HIV, negative or positive, is no longer on the table. For some of us who have lived with HIV for a long time, this can be refreshing, and for others, disconcerting.
As both Bruce Richmon and Damon L Jacobs have argued, in order to avoid these new prevention technologies deepening the ‘serodivide’ in our communities, it is essential that we always talk PrEP and U=U together.
On a more technical note, the poster says ‘PrEP Works, one pill per day’. This completely ignores non-daily dosing strategies like event-based PrEP and T&S dosing, even though the World Health Organisation just came out saying both are just as effective as daily PrEP.
Lastly, we are now seeing a movement for what it calls ‘blood equality’, advocating the right for men who have sex with men (MSM) to donate blood without exclusion periods. This argument is formulated in a few different ways.
One version argues that we’ve achieved marriage equality and this injustice is ‘what’s next’. This forgets many other more pressing needs, like the acceptance of queer people living in areas that overwhelmingly voted ‘no’ on Australia’s marriage plebiscite, or the fact that a significant minority of people living with HIV in Australia don’t have access to Medicare-funded HIV treatment.
Some versions have argued that it’s matter of human dignity to allow blood donation. When I last looked at this issue, in the mid-2000s, I used this argument myself. I drew on Richard Titmuss’ argument that people donate blood out of altruism, which in turn drew on Mauss’ theory of society as gift relationship. Now, I realise that human dignity has to be universal or it is just special pleading. In the case of ‘blood equality’, the claim based on human dignity forgets (or accepts) that people living with HIV are excluded.
A more recent formulation argues that even a 3-month exclusion period is intolerable and that behavioural screening should be enough. The idea is that we can just ask people about their recent sexual behaviour and decide whether to let them donate blood. This forgets nearly forty years of experience, which tells us that choosing partners (or donors) based on self-reported risk is not effective protection.
This claim also forgets the community and clinical experience of seroconversion, which doesn’t always happen overnight; in some people it does take up to 3 months after infection for viraemia to emerge and antibody production to occur. And PrEP actually complicates matters even further — even with resistance mutations, TDF/FTC can be enough viral suppression to prolong the seroconversion process, so any exclusion period less than 3 months is very unlikely.
Finally, this advocacy also forgets the sex-positivity that has always been central to the Australian community-based response to HIV/AIDS. As the law student, student politician, and Labor think-tank staffer Connor Wherrett recently wrote in the queer (sic) edition of Honi Soit,
“The fact is, blanket policies like this discourage healthy MSM giving blood. A same sex male couple, despite being together for a year and only having sex with each other, and being regularly tested, is treated the same way as a gay man who has multiple unprotected sexual encounters with different individuals a week.” (source)
To reiterate: forgetting is not just a matter of not knowing, or letting something that was known slip away. It is produced through social action. Although in social movements we constantly bang on about Foucault’s notion of discourses, my analysis here draws on his conception of the archive — the collective repository of prior discourses and the practices that select which discourses operate in the present. These campaigns and interventions are among those practices.
My work draws heavily on Foucault, who is not typically interested in the role of specific actors and human agency in discursive practices. I ran these reflections in dot-point form past Theodore Kerr, a Brooklyn based writer, organizer, curator and artist, past convenor of Visual AIDS and collaborator in the ‘What Would an HIV Doula Do?’ collective. He reminded me that these acts of forgetting reflect the strategies and social placement of particular individuals — seeking to adopt positions of leadership in social movements, and taking perspectives that reflect their own privilege and their lack of meaningful engagement with the people, politics and lived experience of the Global South (or, indeed, the American South).
I recently re-watched Robin Campillo’s 120 Battements Par Minute (distributed in the Anglosphere under the title BPM). Just like the first time, I sat there in darkness, trying not to howl as all the moisture in my body evacuated via my tear ducts. It is a powerful evocation of the experience of HIV and AIDS in France in the early 1990s, shown through the lens of ACTUP Paris and its actions (and debates) over HIV treatments access. The closing image is of a die-in, on a cobbled street, at night, beside a church, calling on the French government to acknowledge the crisis, and the brutal fact of death and dying. It shows forgetting as a practice of abandonment: people in power knew and did not care.
Alexander McClelland’s ‘Unprepared’ in Maisonneuve (Spring 2019)
‘I’m forty now. Some have said that the PrEP era means we are all “HIV equal,” dispensing with the negative and positive. This so-called new era can be confounding, at least to me.’
Meanwhile, Dion Kagan, Positive Images (IB Tauris, 2018) offers a reminder that remembering is complicated, too:
‘Making AIDS into history, as I suggested earlier, can act as a form of temporal estrangement, a kind of prophylactic distancing that disavows the present day conditions and urgencies of HIV. As [Theodore] Kerr writes, the poster campaign (‘Your Nostalgia is Killing Me’, Chevalier & Bradley-Perrin, 2013) was a protest against the negligence of nostalgia, expressing the feeling that the artist’s “current life chances as people living with HIV were being reduced by a focus on AIDS of the past. The stigma, health, and social realities that they experience were being ignored in lieu of a look back.”’ (p227)
In the wake of the Pell conviction for child sexual assault, we are now hearing grave concerns from cultural conservatives and Catholic commentators that the jury verdict was ‘unsafe’.
There’s a distinction between law and fact at the heart of criminal legal proceedings. The judge makes decisions on the legal and procedural issues, while the jury is the tribunal of fact. The facts enliven the law. Judges’ decisions on legal matters are frequently overturned in appeals to higher courts, but it is extremely uncommon for an appellate court to overturn a jury decision.
The legal test for overturning a decision was set out in a case with a similar fact scenario to Pell, M v The Queen  HCA 63. M was a father accused of sexually assaulting his 13 year old daughter, with proceedings brought many years after the event was alleged to have occurred. The majority in that case, Mason CJ, Deane, Dawson and Toohey JJ, found:
If the evidence, upon the record itself, contains discrepancies, displays inadequacies, is tainted or otherwise lacks probative force in such a way as to lead the court of criminal appeal to conclude that, even making full allowance for the advantages enjoyed by the jury, there is a significant possibility that an innocent person has been convicted, then the court is bound to act and to set aside a verdict based upon that evidence [citations omitted].
The advantages enjoyed by the jury are seeing and hearing the witness. The High Court is saying that even an appeal court judge reading the evidence is at a disadvantage compared to the jury. In other words, the complainant’s demeanour is relevant to the judgment of their testimony. In M’s case the majority concluded:
the ultimate question must always be whether the court thinks that upon the whole of the evidence it was open to the jury to be satisfied beyond reasonable doubt that the accused was guilty (18 Chidiac v. The Queen (1991) 171 CLR at 443, 451, 458, 461-462) .
The ultimate question is whether it was open to the jury — we’ll come back to that. For now, I want to reflect on a piece in Eureka Street, no doubt a long time in the drafting, in which the Jesuit priest and lawyer Fr Frank Brennan responds to news of the conviction. I’m told the piece has been circulated to every family with a child enrolled at a Catholic school, indicating that it represents the views of the archdiocese.
Fr Brennan clearly anticipates the considerations in M v The Queen. In so doing, he places himself in the shoes of the jury, despite acknowledging he was only in court for some of the proceedings. In M’s case, Brennan J — that would be Fr Brennan’s own father — noted ‘the appellate court must acknowledge that the primary responsibility for finding the facts rests with the jury, not with the appellate court.’ Fr Brennan acknowledges that he did not even see or hear the principal evidence, and yet, lacking the caution of an appellate court, he considers himself better placed to judge the facts of the case than the jury.
Fr Brennan argues the verdict is unsatisfactory because the jury must not have placed the same weight as he does on the criticisms of the complainant made by the defence. In so doing, he makes a number of assumptions about how the jury must have reached its decision. They are necessarily assumptions, because juries do not give reasons for their decisions and none of the jury has spoken out. I am, to put it mildly, bemused that Fr Brennan imagines himself an unbiased observer and commentator on proceedings involving Cardinal Pell.
Fr Brennan insists the complainant made mistakes in his evidence. Compared to the High Court bench in 1994, we now know from studies of eyewitness evidence and the recollection of traumatic events that discrepancies of recall are common. The whole point of trauma is that it resists being encoded as narrative memory and must be relived, rather than recalled, under conditions of intense distress. It is open to a jury to conclude that the complainant was wrong about some of the particulars but correct about the substance of the allegations.
Defence barristers in proceedings involving sexual assault invariably insist that any small discrepancy is evidence that the whole complaint has been made up. Let me take a moment to note how old that insistence is. I draw here on the work of the historian Barbara Hanawalt (2003) on medieval law-making. She notes that the crime of rape was first codified in legislation in the first Statute of Westminster in 1275 AD, in response to the concern that rape complaints were too easy to make under common law. At first the sentence for rape was punishment in life and member, but this was adjusted downwards in 1285.
Hanawalt describes the common law procedure for prosecuting rape in medieval times. The victim had to tell the first person she encountered after the rape occurred, and then proclaim the rape, in detail and without delay, to the ‘reeve’ — an assembly of all the men in good standing in her town or village. Then, at the next assizes (a travelling court), she had to give an account once again that varied in not one single detail from the earlier accounts she had given. Even the tiniest deviation could be seized upon as evidence the complaint was false, exposing the woman herself to criminal punishment and her family to civil proceedings.
Put simply, rape proceedings have a similar structure to the method of trial by ordeal used in witch hunts, and this underlying frame persists in the modern-day practice of rape prosecutions, even though legislators have sought to defuse it. Indeed, much the same concerns — lack of corroboration, delay in reporting, discrepancies, the victim’s demeanour — were ventilated in M’s case.
Fr Brennan writes:
My only conclusion is that the jury must have disregarded many of the criticisms so tellingly made by Richter of the complainant’s evidence and that, despite the complainant being confused about all manner of things, the jury must nevertheless have thought — as the recent royal commission discussed — that children who are sexually violated do not always remember details of time, place, dress and posture. Although the complainant got all sorts of facts wrong, the jury must have believed that Pell did something dreadful to him. The jurors must have judged the complainant to be honest and reliable even though many of the details he gave were improbable if not impossible.
Tellingly made, indeed. ‘Improbable’ perhaps refers to the High Court’s decision in M’s case. Fr Brennan asserts what lawyers and legal scholars describe as tendency evidence in order to argue that this particular event was ‘improbable or even impossible.’ Tendency evidence is inherently weak. It has the following inferential structure: ‘the assertion that X happened is more likely to be true because of all these other occasions on which X also happened.’ The planned second prosecution of Cardinal Pell, the ‘swimmers’ case’, was abandoned this week after the judge ruled tendency evidence inadmissible in those proceedings, in turn leading to the lifting of the suppression order on news of his conviction.
Fr Brennan argues that Pell could not have been in the sacristy because ‘the Archbishop was a stickler for liturgical form and that he developed strict protocols in his time as archbishop’ — a pattern or tendency that did not include visiting the sacristy alone, or so soon after the Mass ended.
However, ‘generally did not’ is not the same as ‘never did’. It was, again, open to the jury to conclude that on this occasion, however exceptional it might have been, Pell did enter the sacristy alone and soon after the mass. Brennan does not say over what timeframe Pell developed this pattern of behaviour; the complaint concerns a mass very early in his tenure as Archbishop of Melbourne, and David Marr observes that his protocol may not have been set in stone at that point in time.
Likewise, Fr Brennan asserts that the vestments conventionally worn for a mass of that kind include an alb — a garment that would not easily permit a priest access to his genitals. But, again, this involves asserting a general custom as evidence against a particular event. The prosecution led evidence that it is possible to move the customary vestments to one side. (Perhaps for practical reasons: so many old men, so many dodgy prostates.) Pell has a reputation for being a stickler, but reputation is, yet again, another kind of tendency evidence. It does not exclude the possibility of exceptional circumstances, leaving it open to the jury, considering all the evidence as a whole, to conclude that this particular event occurred.
Finally, Fr Brennan explicitly poses the questions he is raising in the piece: ‘Was the verdict unreasonable? Can it be supported having regard to the evidence? Those are questions for the appeal court.’ If so, why the piece?
It pays lip-service to the role of the courts, but Fr Brennan goes on to conclude by saying he ‘hopes and prays’ that justice will be done. That is not something you say if you believe justice has been done. There is a name for this kind of semantic nicety: it’s called being Jesuitical, and only the Jesuits think that’s a compliment.
The thing I find most troubling is the move Fr Brennan makes next. He writes ‘ I can only hope and pray that the complainant can find some peace, able to get on with his life, whichever way the appeal goes.’ This is the ultimate Catholicism. It extends to the person who has been wronged a false pity that simultaneously implies their complaint springs from being troubled. It is a hypocritical gesture that evades moral accountability while further injuring the person bringing the moral claim.
In the context of partner abuse, this move is known as gaslighting. In the case of the Catholic response to the Pell conviction and the findings of the Royal Commission on Institutional Responses to Child Sexual Abuse, we could perhaps call it ‘candle-lighting.’
Cardinal Pell’s legal team have already filed a motion to appeal the decision. An army of Catholics who imagine themselves defenders of a victimised church have turned out in force, on social media and in the press, to insist that Pell cannot be called an abuser until the appeal has been heard. This misunderstands the law: the maxim is ‘innocent until proven guilty,’ not ‘innocent until the guilty verdict survives on appeal.’
But even the Vatican, which refuses to take action against the Cardinal, insists on the latter. There’s a refusal to acknowledge that secular institutions have any authority over church officials, or that a conviction impairs tenure in religious office. This does not bode well for Vatican acceptance of mandatory reporting duties for church officials, or for meaningful cultural change to protect young people in the care of Catholic schools, churches, and welfare organisations from sexual assault.
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Spoiler alerts don’t come any clearer than the headline of this post. Yorgos Lanthimos’ tragicomedy The Favourite is finishing up its North American run before it heads down under to open in Australia on Boxing Day, and I caught it during the week.
Or it caught me. The trailer makes it look both hilarious and crazed. And it’s both of those things, but I was not ready for it to be so tender and achingly sad. I don’t really have the words to describe it beyond the usual clichés of cinematic review: as Sarah Churchill, Lady Marlborough, Rachel Weisz effortlessly exceeds her turn in My Cousin Rachel, while Olivia Colman gives an arresting, career-defining performance as Queen Anne, at sea with her grief, her vessel breaking down around her, tossed about by tempests of loneliness and rage. Emma Stone is part Mean Girl, part hooker with a heart of glass.
It ends with more dissolution than resolution. (Yes, that’s an editing pun. Not sorry.) Lanthimos perhaps intends to leave the audience with questions, but I’m a very literal person and I want answers. My thoughts after the jump.