The problems Michael Bachelard describes with gender affirming care are actually problems with our entire psychiatric care system.

Part III

Let’s consider a hypothetical: imagine a young person, Grisha, with all the same concerns and unhappiness as Misha, the young person we meet in the opener to Michael Bachelard’s hideously unethical piece on young trans people and gender affirmation.

Grisha is autistic, depressed, and anxious; they have body dysmorphia and disordered eating; there’s a history of sexual assault and a PTSD diagnosis. But there’s one key difference: Grisha feels secure in their nonbinary gender identity and isn’t seeking to access gender-affirming medical care.

Borderline

We can extrapolate a few more things from this history. Grisha is frequently gripped by fits of misery; they have an unstable attachment style; and they struggle to trust therapists and to participate consistently in therapy.

I’m describing a constellation of traits and experiences that often attracts an incredibly stigmatising label: ‘borderline personality disorder’ (BPD). 

Even therapists and other mental health and social care professionals stigmatise people with BPD. I first learned of the existence of BPD from a counsellor at an HIV/AIDS service telling a roomful of people at a conference that clients with BPD are impossible to work with and were excluded from that service.

The entire category of personality disorders suffers from a similar problem — what does it mean to be told your entire personality is defective?

I take it to mean that your internal system of personal forces and tendencies is in some way contradictory, so that it reliably produces maladaptive responses to your social world and the feelings that world generates in you.

In the case of BPD, the contradiction seems to be a desperate urge to connect with people and seek support from them, coupled with an incredible fear of being hurt and huge difficulties placing trust in those supportive relationships.

Contrary to what the idiot social worker told that roomful of people, BPD is highly treatable. It does take skilful, constant, ongoing, committed therapy; treating BPD is not for the faint of heart. I am certain that I met the criteria for BPD earlier in my adult life, but I came through it, partly through therapy and partly through the love of very smart, committed friends, family, and partners.

Complex trauma

There is a strong argument to be made that BPD could be better understood and described as the kind of personality you develop when you grow up with complex PTSD. 

CPTSD is not acknowledged by the DSM-V, the American ‘rulebook’ for psychiatric diagnoses, but it is acknowledged by the ICD-11, which is the international rulebook for diagnosis of all kinds of medical conditions.

Here’s what I wrote in an earlier post about living with CPTSD:

The prevalent definition of cPTSD comes from Judith Herman, who describes it as particularly acute and ongoing trauma, particularly in childhood; the canonical example is ongoing sexual abuse, which was not recognised as a traumatic stressor in earlier versions of the DSM. 

I understand it slightly differently, however. In the original Latin, complex meant interwoven. For me, it’s not just the ongoingness of the trauma that produces cPTSD; it’s that the trauma becomes part of your personhood. The traumatic experience forms you as a person. Thus, treating cPTSD is fundamentally difficult: it involves changing your whole way of being in the world, not just treating symptoms or modifying unhelpful patterns of behaviour. 

And this is doubly difficult because of the fact of interbeing — our personhood is constituted in and through webs of relationship with other people, animals, objects, places, structures, and rituals. Changing yourself is hard when these webs of relationship remain in place and unmodified.

A person whose personality is not constituted ‘in and through webs of relationship’ with trusted others is going to be buffeted constantly by the conflicting and changeable demands of their emotional world and social environment, without having any safe harbour to rest within or any solid foundations to build upon. (Yes, that’s a mixed metaphor. Obviously, the person I’m describing is a lighthouse.)

It is important to acknowledge that all people with CPTSD (and many people without it) can experience aspects, features, dynamics, of borderline personality, without necessarily meeting all the criteria for diagnosis with personality disorder.

Treatment goals and obstacles

In the hypothetical I introduced above, ‘Grisha’ is grappling with a system of forces, including body dysmorphia, depression, anxiety, sexual trauma, and probably social trauma as well, from bullying, rejection and isolation.

Treating Grisha will involve gently and determinedly building their capacity to trust one person — the therapist — and when deep-rooted trust and support are effectively established, encouraging Grisha to use that relationship as a model for connecting with other people and building out a network that confers friendship, love and support.

However, Grisha and her single parent mother, uhh, ‘Greph,’ are going to face a huge challenge finding this kind of support within the Australian landscape of psychological and psychiatric care services.

Ten sessions of ‘brief psychological strategies’ isn’t going to touch the sides; people with BPD often see their therapists weekly or more often and have constant contact via phone-calls or text as they grapple with emotional crises.

Greph is likely to be frantically struggling to ‘patchwork’ an ad hoc and informal system of care around Grisha’s needs. Grisha’s primary therapeutic relationship is going to be with Greph herself, rather than a trained therapist, and this places a huge amount of stress on Greph, who isn’t trained and very likely has her own stressors and conflicts to deal with.

What’s the point

The opening scenario in the Bachelard piece offers Misha’s story as a failing of the system for gender-affirming care, but it is better understood as a failure of our psychological and psychiatric care system as a whole.

Gender plays a role in the misery that Misha reports, but I want to suggest it is not the primary issue, which is the difficulty of patchworking together an effective care system for a traumatised young person.

This comes through loud and clear in all the accounts Bachelard offers of young people who are struggling with gender transition or ‘regret,’ including Misha, de-transitioner Mel Jefferies, and the children of parents in the ‘gender critical’ support group: ‘Their gender-questioning children are mostly born female and are neurodiverse, and live with mental health issues.’

Bachelard presents laws against conversion therapy as a legal bogey-man: 

But this is complete bullshit. What these laws require is a wholistic approach that takes the gender incongruence into account, rather than treating other aspects of a child or young person’s presentation as a competing explanation for their misery.

Let me spell this out.

The law prevents someone taking active steps to prevent a young person from acting on their desire to affirm a different gender. 

It doesn’t prevent a care provider from saying, right now, and with all you’ve got going on, I don’t think it’s the right time to embark on a journey that involves heavy identity work and exposes you to social vulnerability.

It requires the care provider to treat the whole person, including the trauma history, the mental illness, the social isolation, the personality condition, as well as the experience of gender incongruence and the desire to affirm a different gender from the one presumed for them at birth.

They prevent a care provider from treating gender incongruence and mental illness as competing explanations for the deep-rooted unhappiness.

Conclusion

Apart from the hideously unethical reporting on Misha’s experience, I have serious concerns about the argument made in the Bachelard piece.

First, it presents the experience of a subset of the broader trans population — people who are grappling with personality disorder — as typical of the whole trans community. And while these conditions are certainly more common among trans people, they are not ubiquitous.

Second, it seems to implies that people with mental illness and/or personality disorder should be denied gender affirming care — on the presumption their gender dysphoria is ‘really’ caused by their autism, and/or their trauma, and/or their mental illness, or because they might be confused and regret it later.

Last, returning to our hypothetical enby ‘Grisha,’ a person presenting with all the same problems minus the gender dysphoria would still face an uphill battle cobbling together a care team with all the necessary supports. Their mother ‘Greph’ just wouldn’t get to blame their difficulties on gender affirming care.

I want one thing to be exceptionally clear. The problems Bachelard describes are problems endemic to our patchwork system of psychological and psychiatric care; they are not unique to gender affirming care.

Full coverage

• Nine reaches new landmark on unethical trans coverage (Pt I)
• Framing effects in a feature-length article on trans young people (Pt II)
• The mentally ill elephant in the room (Pt III)

If you are taking part in interviews with a journalist for a feature article about a complex topic, is it better for your story to set the scene or have the last word?

Part II

My last post on the Michael Bachelard piece found an unfamiliar audience so hello! Welcome to the blog, let me introduce myself… I’m a queer and nonbinary person living with serious mental illness. I use they/them pronouns. I originally trained in law and cultural studies and my career has combined health promotion practice with social research in public health.

I’m writing this as a culture and communication researcher doing my PhD at a centre focused on regulation and governance, looking at how public health initiatives engage with communities grappling with health and social problems. One of my two PhD case studies is the Unharm Story Lab, which trains people who use drugs to share their stories with journalists, particularly those writing long-form and feature pieces.

Recall and framing

In cognitive science, studies of recall suggest two effects, mediated by different neural systems. The primacy effect — items learnt first are recalled more often — is mediated by long-term memory, whereas the recency effect — ease of recall for last-learnt items — is mediated by short-term memory.

But recall is only the beginning. Semantic processing — how we make meaning from what we learn — depends on recall but goes far beyond it. In its simplest expression, the concept of framing refers to the way some learned items can influence the processing of other learned items. 

This concept has a long history. Framing has been extensively studied (and debated) in sociology (Goffman, 1974), communication science (Scheufele & Tewksbury, 2007), behavioural economics (Tversky & Kahneman, 1981), linguistics (Lakoff, 2004) and cultural studies (Vicari, 2023). 

All of these treatments conceive framing in different ways and offer their own advantages and downsides. I am going to focus on two in particular.

In Joel Dignam’s helpful summary, Lakoff describes frames as ‘mental structures that shape the way we see the world.’ From a cognitive perspective, framing is the practice of communicating in a way that activates unconscious ideas and associations that support the message being communicated. 

By contrast, in Goffman’s account, frames are social and consist of sets of unspoken rules that determine the nature and conduct of a given situation.

With framing in mind, let’s return to my question. Quite straightforwardly, in media communications, it is more powerful to set the scene than to have the last word. The opening paragraphs of an article provide the reader with an interpretive framework for what follows in the remainder of the article. 

They answer Goffman’s question: what are we doing here? What kind of article is this? And in Lakoff’s sense, they activate networks of unspoken associations that structure how the rest of the article is perceived and interpreted.

TL;DR

There’s another more brutally practical reason for wanting to come first: communication research has consistently demonstrated that people don’t read articles line-by-line from beginning to end. 

Instead, they skim — and what they do read skews heavily towards the ‘top’ of the article: its opening paragraphs. 

That’s why news articles cover the key details of a story — the who-what-where-when-how-and-why — in the first 2-3 paragraphs and devote the rest to reactions from key actors, supporting facts and legal/editorial disclaimers.

There’s a feedback loop here. Journalists know that reading practices are top-heavy, so they put the key details in the first few paragraphs; in turn this trains and reinforces audiences in the top-heavy reading practice.

Reflections on the Bachelard piece

My last post shared my strong concern about unethical reporting in the Michael Bachelard piece in The Age/SMH Good Weekend about trans young people. People quite fairly asked me ‘But Daniel, what about the rest of the piece?’ 

It featured a heart-warming narrative about trans man Sage Moorhen and his nonbinary genderfluid partner Priya, and Sage’s family who supported him through the process of affirming first nonbinary identity then male gender. 

It describes, with studied neutrality, a self-help group for ‘gender critical’ parents, providing extensive quotes that leave them sounding like the most revolting people.

Lastly it finishes with two interviews, featuring Dr Son Vivienne (they/them) and Michelle McNamara (she/her), who are respectively the CEO and advocacy committee chair at Transgender Victoria. Their voices come through loud and clear — warm, concerned, engaged, and above all, pragmatic. This is the voice of common sense at last.

But it is last.

Unconscious dimensions

I’ve been talking about the structure of the piece: what comes first, last, and in the middle; what that signals to whom; and how that interacts with reading practices. The structure is unspoken, unconscious, ‘behind the scenes,’ but it’s still incredibly powerful at framing what we read and take from the piece.

I have some hypotheses about this piece. Structurally, it is wonky as fuck. It begins with a really uncomfortable anecdote — a weak, unsatisfying story, and deeply negative, not a strong start for a long piece where you need readers to really commit if they are going to make it to the end.

By contrast, in the narrative about Sage Moorhen, the young trans man the author Michael Bachelard has known since childhood, the writing is calm, confident and expansive — a much more natural note to begin a feature upon. 

I’m just guessing, but my guess is that an editor directed Bachelard to reorder the piece so that Misha’s experience frames the rest of the piece. My guess is Misha’s story originally came after the Moorhen narrative — a discursive move that would have said ‘but not everyone benefits from gender affirming care…’

Which is straightforwardly true — but that discursive move would present Misha’s story as exceptional, rather than a case typical of an entire system for gender affirmative care in crisis…

Conclusion

In my next post, I’ll write about the unspoken issue at the heart of the traumatic narratives presented in this awful piece — complex post-traumatic disorder and its effects on personality development in young people.

Full coverage

• Nine reaches new landmark on unethical trans coverage (Pt I)
• Framing effects in a feature-length article on trans young people (Pt II)
• The mentally ill elephant in the room (Pt III)

Michael Bachelard’s feature in today’s Good Weekend reaches a new landmark in unethical reporting on trans people.

PART I

For the duration of Gay Alcorn’s brief tenure as editor of The Age, my hometown newspaper, I used to wake on Tuesday mornings wondering what transphobic nonsense I was going to read from Alcorn’s pet TERF, columnist Julie Szego. 

When Patrick Elligett took over as editor, I waited to see what kind of editorial direction he would set on the paper’s coverage of trans people and our lives. It hasn’t always been great, but it seemed better… until today.

Michael Bachelard is a senior journalist who specialises in investigative features. Assigning him to write a feature on trans young people is consistent with a trend I’ve observed in the Nine papers’ coverage of trans lives: they have consistently reported on trans lives as a social problem, rather than reporting the experiences of real trans people with names, faces and personal stories to share, as the Australian Broadcasting Commission has consistently done. 

But this article (see annotated PDF) proves the old saying ‘be careful what you wish for,’ because Bachelard interviews and reports real people, and the result is dreadful. I have serious concerns about the wellbeing of the person interviewed for the article’s opener.

A young person at risk of suicide

An opening narrative of a young person trapped in a world of distress and gender dysphoria frames the other personal stories shared in the rest of the article: it creates an interpretive context that calls gender-affirming care into question.

Normally I’d be writing about framing first, but there’s a bigger problem: by his own admission, Bachelard has interviewed and reported in excruciating detail on ‘Misha’, a young person with autism and serious mental illness, who is clearly in a state of intense distress, and who is openly contemplating suicide. 

The piece opens with Misha — no pronouns given — telling Bachelard in halting speech that one of his questions brings up ‘deeply rooted disgust, fear… (and) it brings up pain — unbelievable amounts of pain.’ 

Bachelard is interviewing Misha over dinner with Steph, Misha’s single mother, who is present and listening intently but not intervening in an interview that is — by Misha’s own words — causing intense pain. 

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Bachelard details Misha’s history of mental illness:

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As a human services practitioner with extensive training in suicide prevention (Lifeline, ASIST, MHFA), the following statement caused me grave concern:

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In the ASIST framework we are trained to consider two things: reasons for dying, which are clearly apparent in Misha’s narrative, and reasons for living, and in describing the latter Misha is explicit about the life-and-death stakes.

I’m not saying nobody should ever report on trans people at risk of suicide; in fact, it’s vital we write about sky-high suicide rates among trans people, and indeed The Age has just done so in a sensitively-written piece about the coronial inquest currently taking place into five young trans suicides in Victoria.

However, if you write about a vulnerable person, it is vital you do nothing that might increase the distress they are experiencing. As evidence from the Black Dog now makes clear, distress is an acute risk factor for suicide.

So it’s a problem that Bachelard paints such a negative picture of Misha.

In his telling, Misha ‘slouches,’ has ‘mousy hair’ in an unfashionable cut, dresses poorly, and can’t answer questions. Bachelard states that he doesn’t use any pronouns for Misha because the pronouns Misha gives don’t match his perception of Misha’s gender.

More to the point, Misha is judgmental about other trans young people’s gender identification, doesn’t ‘believe in the ideology’ (of gender affirmation), and has faced criticism from peers in the past for being transphobic. 

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I am concerned that Misha is likely to read some fairly strong reactions to the views and attitudes expressed in Bachelard’s reporting — reactions that could worsen Misha’s feelings of social isolation and potentiate suicidal distress.

Vulnerability 

Misha’s experience is presented as a typical case study of gender transition and this is hugely misleading — in Bachelard’s own account, Misha is clearly grappling with multiple crises and requires urgent and coordinated support from a multi-disciplinary team.

But Bachelard claims ‘a succession of psychologists and doctors wanted to focus only on gender affirmation and medical treatment.’ Steph is quoted saying ‘Trauma and autism never got a look-in.’

We have to take Steph’s word for that. Bachelard is sympathetic to Steph and spends as much time describing her experience as Misha’s. But Steph ‘struggles’ to use the pronouns Misha has requested, ‘struggles’ to say Misha’s chosen name, and refused Misha access to gender-affirming hormones. 

This account left me wondering a few things. How did Misha come to be on Bachelard’s radar? Was that facilitated by any ‘gender critical’ parent groups? What steps did Bachelard take to ensure Misha was freely consenting to take part, given Misha’s vulnerability and reliance on Steph for love and support?

These are all questions that a researcher or — I would argue — a queer journalist would have known needed to be answered in the text of the article.

Affirmation doesn’t solve every crisis

Misha’s story is familiar to me. Like Misha, I am gender diverse and live with multiple conditions including bipolar type 2 and post-traumatic stress disorder (see Reeders, 2023).

Misha appears to reject gender affirmation because it won’t solve everything and result in guaranteed happiness. On that point, Misha is absolutely correct.

In queer communities there are many people grappling with the realisation that affirming their gender — although vitally important for survival — is only one piece of the happiness puzzle. 

The bigger picture often includes treatment for anxiety and mood disorders, assessment for neurodivergent conditions like ADHD and autism, and therapy for complex and social trauma. Unfortunately, in our fragmented system of care, patients (or their parents) are left to patchwork together a care team. 

When Misha’s parent Steph claims that psychologists and doctors refused to consider trauma and autism, I strongly suspect she sees them as competing explanations for Misha’s unhappiness, rather than pieces of the puzzle. 

Cultures of care

As a member of the queer community, and someone who has both benefited from and contributed to queer cultures of care around gender and mental health, there are two things I wish I could tell Misha. 

One is that gender affirmation can be the starting point for an ongoing journey of self-care, and the foundation stone for building a meaningful life and a reliable support network. 

It is very hard to do that work when your gender is giving you ‘fear, pain and disgust.’ You can’t treat someone’s trauma and support their adaptation to autism when they are dealing with those heavy emotions on a daily basis.

Second, there is more to gender affirmation than binary transition. Affirming a non-female gender doesn’t automatically mean taking testosterone and identifying as a man. 

A queer perspective can expand your sense of possibility around gender identification, sex and sexuality, and relationship prospects. 

As a nonbinary person, I have gender, but it’s dynamic, incoherent, partial, plural, and resistant to investigation or categorisation. As Julia Gillard said of being a woman in politics, it’s not everything, and it’s not nothing. 

I don’t assume my nonbinary identification is going to make me happy, but it let me escape masculinity, which was making me seriously un-happy. That’s a perspective that offers some purchase on the awful situation in which Misha is currently trapped.

Conclusion

I may write more about the rest of the article, but I wanted to get on the record my strong reservations about the unethical journalism displayed in that piece. I sincerely hope that Misha finds peace in the world, and I very much doubt participating in interviews for this piece will have helped with that goal.

Full coverage

• Nine reaches new landmark on unethical trans coverage (Pt I)
• Framing effects in a feature-length article on trans young people (Pt II)
• The mentally ill elephant in the room (Pt III)

FEATURE (2,400 words)

Originally drafted in 2018 for the SFAF Beta Blog, I enjoyed writing this long form piece digging into a scientific puzzle with important cultural implications.

Over the past decade PrEP has gone mainstream. In the language of marketers, we’re close to saturation among innovators and early adopters and now we’re seeing uptake by the early majority (at least among those who have access). 

But for many veterans of the ‘PrEP wars’ – the intense moral panic that greeted early PrEP advocacy – this has meant answering questions that we thought we’d dealt with long ago. Chief among them: ‘But what about resistance?’ 

We know for a fact that PrEP failure is extremely uncommon in people who are fully adherent — and so is being exposed to virus that is resistant to the two drugs used in PrEP. On the PrEP groups on Facebook, however, this ‘zombie question’ just keeps coming back. Here are my thoughts on why that question is evergreen — and what to know if you’re worried about resistance. 

There’s a difference between knowing and understanding

I’ve worked as an educator and researcher in HIV prevention for twenty years. When I tell people what I do, there’s always one perennial question: ‘can you get HIV from oral sex?’ Its predictability used to grind my gears, but it’s not a dumb question. People know the answer, as a matter of fact—but  they’re asking as a way to check their understanding. 

And the answer to this question has, in fact, changed over time. Studies of male circumcision, advocated as a prevention strategy before PrEP existed, shifted our understanding of HIV infection. Before, we used to say HIV ‘gets into the bloodstream via micro-abrasions in your skin.’ (I was trained to recommend not performing oral sex too soon after eating potato chips.) Now, we know that HIV gets into immune cells in the mucous membranes, and membranes in the mouth have evolved to be really hostile to pathogens. 

Sometimes people say ‘ahh, but you can’t prove a negative!’ Some colleagues claim ‘we’d be legally liable if we said it was safe and then it happened.’ But forty-plus years and 70+ million infections into the epidemic, there have only been a handful of case reports of oral transmission. In scientific terms the risk is too low to estimate, so in practical terms it’s not worth worrying about. 

With the advent of PrEP and U=U, we are seeing the emergence of new perennial questions. In PrEP groups on Facebook we often see questions like: ‘I started PrEP a month ago and I’ve never missed a dose and a guy just came inside me—am I at risk?’ Questions like this highlight the gap between knowing the facts and understanding them.¹

Another question we see a lot is: ‘Aren’t there resistant strains of HIV that can lead to PrEP failure?’ Sometimes, this claim is part of an argument for people to continue using condoms. However, I recently saw it asked by a guy who was using PrEP and condoms and avoiding having sex with positive guys. In his country of origin, homosexuality is punishable by death, so it’s understandable to fear HIV infection – but on PrEP he doesn’t need to.

Recent presentations at CROI showing transmitted drug resistance (TDR) is very infrequent for the two drugs used for PrEP — and only a handful of cases of PrEP ‘failure’ have ever occurred in fully-adherent users.² These are the facts, and this piece aims to help educators and PrEP advocates understand why this is the case. The answer involves the law of the jungle, turf wars among rival gangs, and an impatient four-year old.

Resistance and replication

The philosopher John Dewey explained why it’s so hard to change our minds. We don’t learn by accumulating discrete new facts like so many grains of sand; rather, we weave what we learn into our own pre-existing web of knowledge. This explains why we readily accept facts that fit with what we already know. 

If we apply what we know about antibiotic-resistant bacteria to HIV and PrEP, the notion of ‘PrEP-resistant strains’ sounds plausible. Bacteria replicate by cloning themselves, and when a single bacterium develops resistance, all its descendants will have the same ability. A personal strain of bacteria can become an interpersonal strain that circulates from person-to-person in the community.³

Resistance in HIV is different. Viruses don’t clone themselves. Instead, they hack our DNA to trick our own cells into doing the heavy lifting — making the proteins needed to assemble a new viral particle. This is a much quicker process: studies estimate untreated HIV replicates one billion new viral particles per day. 

The virus has a famously ‘sloppy’ mechanism for copying genetic code, creating lots of opportunities for changes to creep in — changes we call mutations. Many mutations result in deformed viral particles that go nowhere, but every now and again, a mutation occurs that gives the resulting viral particle greater ‘fitness’ for the challenges in its environment. This is the law of the jungle — survival of the fittest — and it applies in your cells and in your blood.

For HIV, fitness means being able to make new copies faster. Our mutant copy infects a new cell, which begins churning out many similar copies, and they infect new cells and so on… 

If the mutation confers a significant advantage, all the copies with that mutation might become a majority quasispecies within the personal mix of strains circulating in your body. (Quasispecies is the technical name for what I’m describing as a personal strain.⁴)

Different quasispecies, each carrying different mutations conferring different advantages, compete like criminal gangs fighting for turf. Replication is the name of the game: whichever strain replicates fastest in your body, dominates. 

Antibodies can’t cure HIV, because it changes so rapidly — but killing infected cells can certainly slow it down. This exerts selection pressure on the mix of viruses circulating in your system. If a mutation allows a viral particle to hide the cells it has infected from your antibodies, for example, it can replicate faster, out-competing other quasispecies. In this scenario, the immune system is creating selection pressure for the mutant strain, which gets ahead because the immune response slows down all the other viral gangs. The same thing happens when a quasispecies becomes resistant to the anti-HIV drugs you are taking.

Enter the clumsy four-year old

Antiretroviral therapy (ART) also works by slowing viral replication. Different drugs work in different ways, and I’m going to focus on the drugs used in PrEP, which are known as TDF (tenofovir) and FTC (emtricitabine).

When HIV infects a cell, a protein called reverse transcriptase is responsible for taking genetic code from the virus and copying it into our own cell’s DNA. Let’s imagine that protein is a clumsy four year-old named Artie. Artie grabs the building blocks for DNA — A, C, G & T — and clicks them together in a chain, ready for insertion.

Drugs like TDF and FTC work by providing our cells with a huge supply of counterfeit building blocks. Imagine a Lego™ block, but one end has nubs missing. So Artie grabs the nearest block – one of the fakes. When he can’t attach the next block in the chain, he does what any four-year old would do — he throws a tantrum and gives up completely. 

This is why adherence is important with HIV treatment and PrEP — it ensures there’s sufficient and continuous supply of those counterfeit building blocks. The handy thing about TDF and FTC is they don’t disrupt our own cells, unlike earlier drugs. That’s one reason why we use TDF/FTC for PrEP — for most people, they cause few side effects.

Clever drug design

Apart from being pretty easy to tolerate, TDF/FTC has another handy feature. Resistance mutations can involve trade-offs. Some forms of resistance cause slower replication compared to non-resistant or ‘wild type’ virus. As long as the drug is present, the resistant strain can replicate faster than wild-type; when the drug is withdrawn, the non-resistant virus returns to dominance. 

The designers of the TDF/FTC combination did something a bit cunning: they combined two drugs whose resistance mutations cause trade-offs that amplify each other. Virus that is resistant to FTC is more susceptible to TDF, while the mutation responsible for TDF resistance absolutely tanks replication. 

Studies estimate a strain resistant to TDF replicates 57% as fast as wild type, and strains resistant to both drugs replicate only 29% as fast (Moyle, 2004).

In other words, even when the virus is resistant to both drugs, it replicates much slower than wild-type. Studies show HIV is rarely transmitted with TDF resistance, and it’s not hard to work out why. Replication rate drives the likelihood of transmission — that’s the whole point of the science behind U=U. 

Even if resistant virus is passed on, in the absence of selection pressure from TDF/FTC the majority strain quickly mutates back to wild type in the new host. 

But you might be wondering: ‘what if the new host is taking PrEP?’ 

Great question. 

A new infection is basically a race — viral particles need to infect enough cells to establish infection before they break down or the immune system wipes them out. HIV is already quite hard to transmit: research that pre-dates HIV treatment found that even anal sex, with a known-positive partner who ejaculates inside the body, estimates a 1-in-33 chance of infection. In the other 32 encounters, exposure fails to cause infection. The slower replication rate of virus resistant to TDF and FTC makes it more likely that exposure will fail to cause infection.

This may explain why we’ve seen fewer than a handful of cases of HIV infection in people who were fully-adherent to PrEP. It also explains why a person who gets HIV under those conditions is unlikely to pass it on. When they stop taking TDF/FTC, the resistant strain more or less disappears from their personal mix, although it may remain ‘archived’ in the DNA of infected cells. 

So here’s my takehome message on ‘PrEP-resistant strains’:

It is possible to develop a personal strain with resistance to the drugs used in PrEP, but this strain will have a very low rate of replication. That is what stops it from becoming a circulating strain that can pass from person-to-person in the community.

The real resistance to PrEP

If thoughts of PrEP ‘failure’ are troubling you, take a moment to imagine what would happen if you did get HIV. Anxiety about HIV might mean you miss out on hearing first-hand about the modern-day reality of life with HIV — at least as it exists for people who can afford to access PrEP and HIV treatment.⁵

Most people in HIV treatment are taking one pill a day and seeing their doctor once every 3, 6 or even 12 months. Getting HIV means doing some heavy identity work and negotiating disclosure and exposure to stigma, but it is no longer something to feel terrified about.

Research by Cathy Dodds at Sigma Research in the UK shows that fear of infection does not motivate people to protect themselves; in fact, it is a barrier to learning about HIV prevention skills. We should respond to fear as fear— by supporting people to grapple with their HIV-related anxiety — instead of expecting a barrage of PrEP facts to solve the problem.

Meanwhile, the ‘resistant strains’ that concern me most are only viral in the sense of circulating rapidly via social and mainstream media. 

They are initiated and passed-on by people who have learned to translate moralistic concerns about condomless sex into pseudo-scientific ‘concerns’ about the possibility of drug resistance. They are shared by people who either want to seem knowledgeable or just to stir up a bit of controversy. This can provoke a strong response from PrEP advocates who remember the Great PrEP War of 2012. Indeed, PrEP newbies sometimes get caught in the crossfire, getting slapped down for asking questions we’ve become sensitive about. 

PrEP education isn’t solely about delivering facts based on evidence established by studies. Of course, we do that when such evidence exists, but many of the practical and social aspects of PrEP use have never been studied — so we are learning as we go, partly through observational studies, partly through conversations among our peers, and partly through personal experience. 

We also need to figure out how the reality of biomedical prevention affects the myriad assumptions that underpinned prevention discourse in the Latex Era. These assumptions are implicit, unconscious and often embedded in routine practices. For example, thirty-odd years of ‘use a condom every time’ seems to have translated seamlessly into ‘take the pill every day.’ As if we can’t think about gay men having sex without a framework of regulatory norms — unregulated by the threat of misadventure.

The subtitle of the world’s largest Facebook community for PrEP users is ‘Rethinking HIV prevention.’ However, the emphasis on delivering facts could be getting in the way of having a broader conversation that could help us discover all the different aspects of prevention discourse that need updating. 

We need scientific evidence and the wisdom of experience in practice to inform the advocacy of PrEP nerds and guide us in developing new social practices that will protect the people who just want to take the pill and fuck. 

notes and references

1. In addition, research has repeatedly shown facts doesn’t change emotions like fear or stigmatising beliefs. A person asking this question is seeking emotional containment and reassurance. Talking through the facts will provide this, but it’s time-consuming and repetitive. We may need to develop a form of CBT — ahem, that’s cognitive behavioural therapy I’m thinking of — for people whose anxiety about the possibility of infection overwhelms their knowledge and confidence about PrEP. ↩︎
2. These findings add to the evidence on HIV resistance to TDF/FTC, the two drugs currently used for PrEP. See Chan 2012 and Buskin (CROI 2018). A study of people living with HIV found TDR against the two drugs used in PrEP did not predict subsequent treatment failure ↩︎
3. That’s why we test the bacteria found in STI tests for antibiotic resistance — as a resistant strain begins to circulate in the community, we may need to modify our treatment guidelines.  ↩︎
4.  ‘Strain’ is not a technical term; people also use it to refer to clades and sub-groups. In this article I’m using it to refer to a collection of genetically-related viral particles that share key mutations. ↩︎
5. A million people died from HIV-related illnesses in 2016, and the treatment cascade for the United States shows only 49% of people with HIV are diagnosed, in treatment, and undetectable. As this article by Kenyon Farrow demonstrates, communities with the greatest need for PrEP have the lowest access to PrEP. The experience of HIV is not the same for everyone. ↩︎

The Indigenous HIV and HCV Health Equity pre-conference day one was INCREDIBLE. Clear-eyed assessment of the harms caused by colonisation and continued by — that deceptively benign word — ‘settlers.’ The linkage of this history with contemporary HIV incidence and outcomes was also made clear. It was powerful hearing from First Nations advocates from Australia, Canada, Hawai’i and New Zealand, and the parallels and differences in their experiences. We heard about many innovative and exciting projects led by Indigenous HIV advocates and program staff in epidemiology, social research, prevention, HIV care and support. I loved the PrEP Pono campaign from Hawai’i.

A presentation by Prof Kane Race to the U=U Global Forum on Day Two. Snarky as FUCK in Kane’s own inimitable style, it raised a whole range of vital questions for the movement — questions, it should be noted, the movement is already grappling with. And probably the most hilarious slide fail I’ve ever seen, prematurely unveiling an image of Kairon Liu’s spectacular sculpture for HIV Art as Science, a giant penis in clear plastic filled with unused HIV medications.

Next, a self-care fail: transiting from one event to another left no time to have lunch, and low blood sugar led to a migraine without headache — just aura and puking for hours — so I missed out on the interactive bits of the ACT NOW Forum on Global HIV Migration as well as the Unity Vibes community art festival and dance party.

Day three involved a bunch of satellite sessions and doing some IAS training for rapporteurs. I was a rapporteur for Track E, health economics and implementation science, on a team led by Omar Galarraga from Brown. The IAS computer systems are a little terrifying but the rapporteur liaison Justyna Gaczorek was a calm and clarifying presence. I’m running on about three hours sleep and I skip the HIV Science as Art exhibition launch for an early night — devastated to miss the launch but I’m calling this a self-care win.

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Day four was the first day of the conference proper. Memory gets a bit blurry. I wake up at 6AM and start my conference day at 7:30am delivering a training session to volunteers in the Positive Lounge. The ‘Poz Lounge’ was organised by Queensland Positive People and looks absolutely stunning; an oasis of calm and creativity amid the rigours of the conference.

I attend a session on social science in the fifth decade of HIV and maybe I’m just tired and emotional but it makes me rather cross. In part it’s just the setup of the session but it makes it seem like HIV social scientists spend as much time defending their turf as they do presenting actual social science.

I rapporteur the Track E Late Breaker Session and it’s incredible to hear what LoveYourself are doing in the Philippines. They have developed an all-virtual de-medicalised PrEP service called E-PrEPPY and to get around logistics challenges in one of the world’s densest cities they developed their own motorcycle courier service, with riders receiving SOGIESC sensitivity training.

Day five (Tuesday) sees me rapporteuring another session on community-led models of care, which includes a fantastic presentation by Prof James Ward, introducing the Aboriginal Community Controlled Health Service model to the HIV world. I rapp another session on achieving the 95-95-95 cascade goals.

Day six, Wednesday, and the finishing line is in sight! I’m rapporteuring a session facilitated by my lovely colleague Beau, featuring another presentation from LoveYourself Philippines as well as one by Laura Nyblade on stigma reduction. Nyblade’s study claims to be responding to and measuring intersectional stigmas but it operationalises stigma entirely in terms of individual negative attitudes. It reports a statistically significant and sustained reduction in stigma, but it’s about 0.3 points on a 5-point scale.

I’m typing away in the rapporteur’s lounge — yes, it is INCREDIBLE having somewhere quiet to retreat to at an international conference — when suddenly… is that SINGING? It’s a protest led by the U=U movement and its organisers the Prevention Access Coalition — demanding the international HIV/AIDS community #sayzero. In other words, don’t say effective HIV treatment ‘reduces’ risk or comes with ‘negligible’ risk — suppressed viral load means zero risk for HIV transmission during sex.

It is lovely attending the final reportback session and hearing the chief rapporteurs giving the highlights of the conference. Track E chief Omar Galarraga is extremely consultative (slash pragmatic about workload) and invites his three rapporteurs to nominate three findings we’d like him to highlight in his reportback. I choose the E-PrEPPY project, as well as Prof James Ward’s remarks about making peer work sustainable, and projects offering non-HIV care (e.g. gender affirming care) as entry points into HIV care. I get to see my name up in lights and my colleagues capture the moment for me…

Some other highlights in no particular order:

• Seeing the incredible work of my NAPWHA colleagues on the Deliberate Discussions series paying off in a series of well-attended, thought-provoking short conversations on stage in the exhibition space.
• Volunteers helping out everywhere and having fun attending the conference and spending time in each other’s company. 😉
• I finally got to meet Bernard Gardiner in person and he gave me a copy of a new report ‘Living Positive in Queensland: 2013-2020.’ Its key themes include a generational lens, place and locality, ageing and older PLHIV, stigma, social isolation and support, and the new pandemic, Covid-19. It will be an essential resource for the work NAPWHA is leading on quality of life for PLHIV.
• Flying Jetstar on their A320s that are wider than 737s and don’t require me to hunch up into a little ball of back pain to avoid crushing my seatmates.

[Vegans, heads up, there’s a picture of roast meat about halfway down.]

This is my true ideology — I evangelise roasting your damn vegies. It is not without peril: as a clumsy person, running my oven full blast is a recipe for first-degree burns, and the PM 2.5s are not to be sneezed at (except I do). But the risk to deliciousness ratio makes it a winner.

Roasting in general makes food more appetising. It dehydrates food, concentrating flavours, and it adds texture by generating an exterior crust with a tender interior. Maillard reactions also generate lovely caramel flavours.

I personally find caramel a bit boring; it’s the reason dishes cooked in a slow cooker often end up tasting the same. My rule of thumb is cook until cooked and where vegies are concerned, cooked to me often means burnt around the edges — that lovely char adds bitterness, complexity and additional texture.

Roast vegie salad

When I worked at a weird little offshoot of Latrobe University in Melbourne CBD, I used to walk with my friend and colleague Nat to a nearby resto that served salads for lunch made from vegies roasted in their wood-fired oven, and I’ve been a salad person ever since.

You want a mix of hard and soft vegies, like carrots and zucchini, to create a pleasing textural contrast. That means roasting the hard vegies for 20-30 mins before adding the soft ones, and you can also chop the soft vegies in larger chunks, because they will shrink as they dehydrate in the oven/on the barbie.

Here’s a roast veg salad I made for a recent dinner with friends in Tassie. Too simple — just carrot, parsnip, zucchini, and red onion, served over a thick schmear of tahini mixed with Greek yoghurt and microplaned garlic, lemon juice, and finely chopped carrot fronds for a pleasing bitter note.

Transforming a roast

For the same meal, I added baby truss tomatoes, still on the vine, to the roasting pan about an hour before the lamb was cooked. They burst in the fierce heat and let go their liquid, turning a dry roast into more of a daube — my favourite way to roast lamb. In the last ten minutes, I added pearl cous-cous to the pan to soak up all the lamb-y, tomatoey pan juices.

Roast your brassica!

If you’ve ever eaten pan-seared or oven-roasted brussel sprouts, you already know that brassica — the mustard plant whose variants include broccoli, kale, cabbage, cauliflower and brussel sprouts — loves to be roasted.

I am a huge fan of Deb Perel from Smitten Kitchen and also Justine Doiron and their genius came together in this recipe for a roast cauliflower and cabbage salad. Now hold up a second, I hear you thinking, those are not charismatic vegetables. They go soggy and unpleasant at the drop of a hat!

This is where roasting comes in — it dries them out and gives them those delicious charred edges. Deb reassures her readers it will taste good rather than burnt. This is the ‘trust me’ aspect of roasting your damn vegies.

I’m extending the salad by adding oven-roasted chickpeas that I have roasted with a coating of harissa paste rather than serving the harissa on the side.

This is how the key ingredients look before I roast them. Pallid all round.

The after pics show how far you can push them without any unpleasant burnt flavours:

As you can see they shrink down a lot. I’m cat-sitting at a friend’s place right now, but at home, I own a bunch of cheap baking sheets, so I can roast three trays of vegies at a time. Just lay down baking paper on each tray to make clean-up easier and keep in mind the top-most tray will cook faster.

Give it a go

Fold up some teatowels or bust out your oven mitts, dial up your oven as hot as it will go, and your tastebuds will thank me.

For years I’ve been an irascible presence on social media telling my friends to roast your damn vegies. This post is specifically about roasting your tomatoes. I don’t mean slow-roasting them, confit-ing them in olive oil. I mean blasting them with the hottest temperature your oven can muster.

Nothing tastes better than the charred sweetness of a properly roasted vegetable and tomatoes, so full of sugar, are perfect for this treatment.

There are two options: plain, and fancy.

Pre-heat your oven, with your baking tray inside it, to the maximum temperature it will go, for at least 30 mins.

Plain roasted tomatoes

Fresh truss tomatoes should be cut in half through their equator — don’t let me see you cutting them top to bottom!

Baby truss tomatoes after they have been carefully turned in the pan.

Carefully remove the roasting tray from the pre-heated inferno (first-degree burns are probably inevitable but use a double-folded teatowel, or oven mitts) and place a sheet of baking paper on the bottom.

Then put the tomatoes cut side up in the roasting tray, sprinkle them liberally with flaky salt (the only kind, in my book) and drench them with olive oil (not extra virgin; the ordinary stuff).

Roast them for 45 minutes to an hour thirty. This is another cook until cooked scenario — the time depends on how hot your oven gets. You can turn them over midway through or just leave them the fuck alone.

When cooked they should be completely collapsed, releasing their juices into the pan, and charred around the edges.

Take those roasted tomatoes and mash them into a pan with some well-crisped batons of streaky bacon, some softened diced shallot, some sliced garlic, add some white wine, add two tbsp of sour cream, add some parmesan, add some finely chopped chives, spoon that over pasta and promptly die of happiness.

Fancy roast tomatoes

My gorgeous ex once took me to see Yotam Ottolenghi interviewed by my fave Aussie cooking writer Karen Martini. He is a generous talker and careful thinker but I almost never cook his food — because the fucker just has no idea how many ingredients is enough. But this recipe is an exception.

https://ottolenghi.co.uk/recipes/hot-charred-cherry-tomatoes-with-cold-yoghurt

Don’t worry about the Urfa chilli flakes. Whatever flaked chilli you’ve got is fine. Pul biber is great if you can find it. Sweet or smoked paprika is also fine.

Crushed garlic, thyme, sage, fresh oregano, lemon peel, baby truss tomatoes cut through their equator, a metric fucktonne of good olive oil, then roast those little bastards like they insulted your mother.

Pull them out when the oil is spitting and the herbs are crispy and the pan is scorching your oven mitts. Pour the whole mess over yoghurt that has been sitting in your freezer for a couple of hours.

Look at that. Charred, collapsing, sweet, caramelised, herby deliciousness. It’s the perfect dish to accompany roast chicken or roast lamb.

For dinner tonight I roasted maryland portions of ethically raised chicken in a marinade suggested by Sabrina Ghayour: rose harissa, lemon zest and juice, sheep’s milk yoghurt, and I add a whack of flaky sea salt for my own reasons. I served it on buttered rice.

I’m here to tell you to roast your damn chicken. Don’t listen to those awful American and Aussie food writers who tell you the most important thing is keeping the chicken breast moist. They’ll tell you to cook it to an internal temperature where the nasty bugs are killed and no further, in case the meat dries out.

I’m here to tell you to cook the chook until cooked. There are worse things than chicken breast that requires cutting and chewing to eat it. Those worse things are perfectly moist but chalky, flavourless chicken. I would much prefer you cook the bird like they do in a supermarket rotisserie — until the drumsticks are kinda tough and a little chewy but the whole thing tastes like heaven.

And I’m here to tell you to marinade it beforehand in something intensely strong tasting — because chicken itself tastes like nothing — and let it sit in the marinade on your benchtop til it comes up to room temperature and start cooking it from there. It’ll take about 2 hours. Stop hyperventilating, you’ll be fine.

Recipe

• 2 chicken maryland pieces
• 2 tbsp of Herbies dried rose harissa spice mix
• Juice of one lemon
• Zest of half a lemon
• 1 tsp flaky sea salt
• 2 tbsp yoghurt of your choice

Combine the marinade ingredients, mix well, spoon over the maryland pieces.

Let marinade for 2 hours on your benchtop or on top of your fridge.

Roast in a pre-heated 180C oven for 45-50 mins until the chicken is deeply caramelised outside and the flesh is starting to come away from the bone. Don’t be afraid to pick it up with gloves and give the joint a gentle yank to see if the muscle is still tight or starting to relax (this is when it’s becoming edible).

Above all, cook until cooked. Don’t be temping that thing. It’s only going to taste better — chewier, more Maillard goodness — if it overcooks a little.

I’ll do a separate post about roasting your damn vegies.

In the past couple of weeks I’ve had a couple of publications that centre on the same theme: the possibilities of public narrative for healing individual and collective traumas.

Public narrative is an extremely broad term and captures a wide range of practices from autobiographical writing and public speaking through to the creation of cultural products including books, TV and film.

The concept of trauma is similarly broad (and increasingly contested). It includes experiences that meet the criteria for PTSD (DSM-V and ICD-11) and complex PTSD (ICD-11 only).

I recognise and have some time for the criticism of recent popular cultural tendencies to describe every negative experience as ‘trauma’ and every strong emotion as ‘being triggered.’

But I would also note we’re still only just beginning to grasp the full extent and diversity of experiences that can cause and constitute traumatic disorders. It wasn’t that long ago (two editions of the DSM) that we excluded events like sexual assault and domestic violence as potential causes of PTSD. The DSM-V authors still don’t agree that prolonged exposure to those two things in childhood can constitute a separate and more severe form of the disorder.

Acknowledging these debates, I use the notion of traumatic experience to describe and talk about sub-clinical trauma — experiences that meet some but not all of the criteria for PTSD or complex PTSD. These experiences can still be powerfully distressing and debilitating and fundamentally call into question our ability to survive and the linear temporal structure of our adult lives.

The Last of Their Number

This piece poses the problem of feeling isolated because your life story cannot be told and cannot be heard; it explores public narrative, particularly autobiographical writing and public speaking, as a possible solution, while cautioning that we need to build public listening skills and practices as well.

The Last of Their Number

Pandemic déjà vu

This piece acknowledges that collective traumatic experiences of pandemics can produce paroxysmal public rage — and explores the possibilities of cultural production (books, film, TV) for telling stories of mass traumatising events.

Pandemic déjà vu

This is the Friday Firehose for 31 March 2023.

Access The Firehose linkblog free on Flipboard:

https://flipboard.com/@danielreede2023/the-firehose-2ki38sgly