Activism and forgetting

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.

Who’s missing from this picture? L-R: James Krellenstein, Peter Staley, Jim Eigo, Larry Kramer, Matt Ebert (photo posted by Peter Staley, 9 Dec 2015)

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.

Poster shown on a wall in Melbourne saying "See It Clearly 2020: PrEP BETTER THAN A CONDOM with a bar chart showing PrEP at 99% and Condom, in grey, 72-91%, a CDC citation, and below that, PrEP Works, One Pill A Day, 'concerned about STIs? check out 100mg doxycycline daily.'
The typography alone is homophobic.

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. 

McClelland (2018)

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.

Blood equality

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.

Further reading

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)