Culturally affirming medicine.

Imagine, if you will, that I am writing the New York Times version of this story, it begins something like this,

After her third spin class was called off, in the middle of winter 2021, Sarah, a middle aged Mom from Smithsville, contacted her doctor. What, she wondered, could her non-binary, vaccinated, and hashtag masked vegan child do about the proliferation of severe allergies in her small private college?

I loathe this kind of writing. It reinforces the most common stereotypes while obliquely suggesting they don’t exist. So, this might not be that interesting to read but I’m not writer.

I’m interested in censorship. And it’s not because I’m an anti vaxxer or a vegan or GOD FORBID, a member of a ‘spin class’. What I’m interested in is the broad shape of debates – how they frame topics for our consumption, and how they change over time. The US is an obvious place to begin this discussion, because, as always, the rules of the game are clearest in the extreme cases. 

For instance, this month we’ve been treated to a supposed ‘reckoning’ about vaccines – the ‘revelation’ that they don’t prevent transmission, which supposedly undermines the mandates that were in place in varying forms, across the US.

Sydney 2021 – “We’re not fucked yet”

I’m only realising now how canny NSW (Australia) Health was. In late 2021, when our vaccination drive was in full swing, and most of the state was in lockdown, targets were discussed in daily press conferences. Even that fact that there were press conferences at all was interesting.

The Premier said that the state needed to reach an 80% level of vaccination. Those with a punitive, authoritarian glint in their eye, asked – why not 100%? And the answer was always the same – because the purpose of the vaccine is to prevent our health system becoming overwhelmed, and 80% is what’s needed for that. At the time, the Delta variant was on the loose, and it was, correctly in my view, predicted that in the absence of vaccination, many of our hospitals would become overwhelmed, and the cumulative cost of that would be deaths from Covid AND other ailments. It does not mean that everyone had the same level of risk from Covid. I am vaccinated and I don’t have a problem with it but I felt like I could make an informed choice and others did not. I’ve also had Covid.

When the case numbers dropped precipitously following widespread vaccination, many asked if NSW should pursue an elimination strategy like Victoria. The answer was no – that we should assume Covid would spread, and assume that the protection from infection was short lived. The mRNA vaccines were never meant to be sterilising. This has played out.

In fact, as NSW opened up, case numbers increased drastically and hospitals were under severe strain. The vaccine did prevent the collapse of the health system, I am confident of that. Whether the health system is fit for purpose is another matter…..

And yet, in the US, this narrative operated differently. There was a stronger moralising tone, and more polarisation. And, quite naturally, it leads to an inevitable pendulum swing. In the last couple of weeks people have claimed that the mandates were bullshit because they were predicated on stopping the spread of the disease, and the GOTCHA moment is the acknowledgment from government that they prevent transmission. This kind of thing massively undermines public trust.

In the US, most universities are still requiring healthy young people to get 4th boosters in order to attend campus. It is very difficult to see how this aligns with the information about the risk/benefit profile of the booster shots, especially for males. (Universities in Australia – for overseas readers – have never mandated the vaccine for attendance, although almost all students received it. A fourth booster is not recommended for young people at all)

It’s politics that shifts the narratives about what is the right thing to do. NSW Health made no bones about why there needed to be a certain level of vaccination, and resisted the urge to keep restrictions further than December (when NSW reached the vaccination target). People could moralise all day long, but the truth of it was that NSW Health’s aim was to avoid football fields full of people gasping like stranded Murray River cod. And, importantly, there was no suggestion that more was known about the vaccines that was actually known.

There are some people who did not get vaccinated, and believed they would be fine without it, and they probably will. This was known then, as it is now. It’s the moralising bullshit that goes alongside it that is the dangerous thing. I’ve chosen this example because we see censorship – as in the US model, where complete fealty to a particular narrative was dictated and condoned – as ultimately problematic and divisive. Some elements of the discussion were censored. NSW did a reasonable job of not fucking things up in that regard.

So, let’s let’s look at an example where we don’t do so well; treatment for gender dysphoria.  I don’t have skin in this game, but I am interested in how the narrative is shaped, and what the possibly consequences are.

There is a fundamental inconsistency in the way gender care is administered in NSW. Having gender dysphoria is no longer considered to be a medical condition. This is the consequence of lobbying from the trans community. I am not suggesting that is bad – communities should advocate for their needs and they should be listened to. Being transgender is commonly positioned as the ‘same as being gay’ – an incontrovertible fact of life that is not a medical or mental health issue.

Yet, totalising narratives often conflate things that are not the same – for instance, people who are gay are not routinely asking for medical care to change their bodies. Quite the opposite – the history of gay rights has been fighting to get the government and medical establishment to quietly piss off out of their lives, and to get involved when asked (i.e., around health issues that disproportionately affect gay people).

It’s difficult to argue for a medical treatment/body modification for something that is not an illness without getting into some very woolly culturally bound territory about what bodies are supposed to look like. Female circumcision – the complete removal of the clitoris and/or sewing the vagina almost shut –  is gender affirming surgery, but the state won’t pay for it. Indeed, in Australia it is criminalised, for both minors and adults. 

Another example – until the 1990s in Australia, teenaged girls who were predicted to grow to be taller than 175cm were prescribed DES, a hormone to arrest their growth. DES comes with intergenerational cancer risk – this means, the daughters of some of these women developed reproductive cancers. The cancer risks were known many years before the treatment was stopped. This was also gender affirming care – women should not grow taller than 175cm, because this will make them, ‘unattractive’ to men.

It’s clear that humans are very diverse. There are some people who believe themselves to be, ‘in the wrong body’, and throughout history, this has always been the case. There are 8 million of us, so you can guarantee that whatever experience there is out there, someone’s having it. Obviously though, there’s a diversity. It is most probable that one person’s experience of being transgender may be different to another person’s. This should not come as a surprise, and yet, the totalising narrative of ‘treatment’ conflates all experiences into one.

There is an assumption, for instance, that transitioning is exactly that one is attempting to change one’s body from one gender to another. Medical support is premised on this trajectory. First, you must live as the opposite gender, and convince a psychologist that you are sufficiently aligned with their bimodal model of gender. The, you may begin hormones and progress to surgery. This is still the medical model and it is criticised by many who are subject to this treatment pathway as, ‘gatekeeping’.

Many trans advocates criticise this highly directional model. Some would like to keep their penis (apologies for the blunt language), or perhaps have their breasts removed but not take hormones. Others would like to change their legal status but keep their body as it is. For a few people, transgenderism is a philia – part of a sexual desire/kink, and body modification is an amplification of that. Also, there are some people who cannot be made adequately aware of the consequences of various treatments, in order to give consent. 

There is a huge diversity of experiences but the ‘treatment’ pathway is very uniform. Affirm and set the wheels in motion.

Now clearly, there is a difference, I would argue, between a young autistic girl, who is completely socially isolated and spends almost her entire life online in trans-support networks, who cannot see a version of herself as an adult woman who wants to ‘change’ into a boy, and a 30 year old man who has finally realised his desire to change gender. There’s a difference between a 25 year old person who would like to have a mastectomy to alleviate dysphoria but not take hormones.

Our medical system should recognise that everyone is different, and importantly, should be able to ensure that people are adequately aware of the long term consequences of their decisions.

Were the girls who were given growth stunting hormones adequately aware of their long term cancer risk? Were their parents? And, if a teenage girl says she consents to genital circumcision, and her parents consent, why isn’t this legitimate?

What’s interesting to me is the shape of these debates. Two years ago those who raised concerns about the way that gender affirming care was carried out were subject to censure of various kinds. This is now less so, as the consequences are more widely known and felt, and simply, more people undertake this form of medical treatment and the full range of outcomes are realised.

And, as with the ‘tall girls’, social norms around gendered bodies changed. I myself am scraping 6ft, and find the idea that I’d be medicated against tallness deeply offensive. And yet, it was happening to my teenaged peers (unbeknownst to me).

There are other examples where physical or surgical interventions that were once accepted are no longer used to treat dysphoria.

Apotemnophilia is body dysmorphia where a person feels that they must have a limb removed. The treatment for this extremely strong dysphoria, until the 2000s, was surgical removal of limbs. Treatment is now psychological and surgery is effectively banned.

Our current model of care and treatment for dysmorphia is arguably out of step with legal requirements surrounding consent – so called, Gillick competency. It is very difficult for a young woman with painful endometriosis to obtain a hysterectomy, but easier for a young woman to have potentially sterilising gender affirming treatment. Both of these rely on cultural ideas of gender. In the first case, the woman who claims she never wants children is almost always denied bodily autonomy, on the grounds that the medical establishment believes she may want children one day. On the other hand, a teenaged trans person is considered more able to judge the consequences of sterilisation than the young woman. The context is different, absolutely, but the outcome (sterilisation) is the same.

We’re also confronted with the idea that some forms of dysmorphia are more easily considered to be ‘psychiatric’ (such as apotemnophilia or anorexia) whereas others are not; trans identities or female circumcision. If one is modifying one’s body to bring it in line with that they believe a woman should look like, then they are relying on cultural or social ideas of what this is, not ‘psychiatric’ ones. What then, is the difference between female circumcision and other forms of ‘bottom surgery’? At best, this is ethnocentrism.

Again, I’m not arguing one is right and the other is wrong. I tend towards libertarian views on bodily autonomy – you want to get it done, go for it. I support people’s right to enjoy/fuck themselves up in ways that aren’t too exxy on the public purse in the longer term.

But what does signal ‘Royal Commission’ to me, is when the laws are applied differently to one group, especially when those laws are intended to balance autonomy with duty of care. And in this case it is clear to me that the rules around consent for everything from vaccines, to sterilisation, to circumcision, to other forms of gender affirming surgery are applied very much in line with who is seeking treatment, and when.

Ticks, sterilising immunity, malaria, TB and bicycles.

Ah ha! Another blog post that breaks the hiatus, while I have spent several months encouraging a group of bemused adults to be a little more cynical about their world.

Let’s talk about debilitating pathogens!

Ticks are arachnids, which comes as a surprise to many people, although not to the svelte little ticks themselves, who are quite well aware of other spiders giving them the glad-eye. Ticks are absolutely bloody fascinating. They’re also endemic to my local area, and you’d be hard pressed not to know someone with the MMA – Mammalian Meat Allergy, as a result of a tick bite.

Our local species – holocyclus – which is Latin for ‘bastard that returns regularly on a bicycle’ has four main life stages; Eggs, larval, nymph and then fully grown, known locally as the shellback tick. Ticks can’t actually move in the first three stages – they are fully reliant on an animal, warm or cold blooded, to sit or lie down on them in order to get a feed. They are truly the Channel 10 gameshow of pests. Only with a feed of blood can they progress through to the next round. This is important, because many people think that ticks can move around on their own, but most of the time they can’t.

Ticks are heavily reliant on animals, in most cases, mammals like kangaroos and bandicoots, to get around. This is why people with dogs seem to have far less ticks – the dogs inhibit the movement of the native animals – basically, they keep them away from humans. Of course, sometimes the ticks bite the dog, but this isn’t one of those gently whimsical New Yorker cartoons. If you have a dog, it should be on Bravecto.

Reactions are broadly divided into two – a local, allergic reaction to the tick, potentially fatal, and a resulting mammalian meat allergy, also potentially fatal. Adult, or shellback ticks, are the only ticks that can provoke these reactions. The smaller nymph or ‘seed ticks’ can cause a local reaction, but not a dangerous one.

The mammalian meat allergy was only discovered around 20 years ago, in Sydney. It is a reaction to an epitope, Galα1-3Galβ1-4GlcNAc-R, and it is an allergy to red meat and pork, and WIFI passwords. Alpha gal (for short) is excreted by the adult shellback tick.

Humans and Old World monkeys are the only animals who do not produce alpha gal. We lost the ability to produce it, somewhere in our evolution (more of this shortly). As a consequence, humans developed the ability to produce high levels of antibodies against alpha gal. This is what causes the reaction. So, why would it be that humans and Old World monkeys are the only animals to have ‘dropped’ alpha gal?

Alpha gal resembles the coating or surface of the malaria and tuberculosis viruses. This suggests that at some point, there was a genetic bottleneck, whereby the burden of these diseases was so great that it acted as a selection event. Those who generated high antibodies against malaria or TB survived. They were the fittest. It is thought that this is why humans lost the ability to make alpha gal – because those who didn’t make it themselves saw it as foreign when it was encountered, and produced antibodies against it.

MMA is also present in other countries with ticks, although different species to those found in Australia. In Sweden, researchers examined data relating to anaphylactic responses to tick bites and found that almost everyone was susceptible, except those with blood type B (around 16% of the population in Australia, but varies depending on your population). So what is it that makes people with B blood fairly ‘immune’ to fatal tick reactions and/or resulting meat allergies?

Alpha gal looks like malaria and TB, yes, but it also looks like an antigen that people with B type blood make themselves. So, when the B team encounter alpha gal, they don’t have a reaction.

It probably does, however, make them more susceptible to malaria and TB. But at least they can eat bacon while they die.

Indeed, the relationship between alpha gal and malaria is prompting vaccine research. This paper, and there are many like it, looked at ‘natural immunity’ against malaria, amongst exposed people in Mali and Senegal. It found the people with high levels of alpha gal antibodies had high immunity to malaria. This is a Big Deal.

The same effect is observed in TB;

“Likewise, tuberculosis patients in the Iberian Peninsula (Portugal and Spain) had low anti-α-Gal antibody levels when compared to healthy individuals. These groundbreaking findings suggested that anti-α-Gal antibodies might protect not only against Plasmodium parasites but also against other pathogens expressing α-Gal on their surface….The current paradigm is that immunity against M. tuberculosis relies exclusively on cellular defense mechanisms. However, mounting evidence supports that humoral immunity contributes to protection against tuberculosis.” 2017

Interestingly, it’s long been known that people with O type blood were more susceptible to getting sick with malaria, and initially, some thought that these two things were related. But, they are not. O type blood promotes rosetting, which is basically a way that the virus drives blood cells to increase infection. It is a completely different mechanism to the alpha gal antibodies, which prevent infection in the first place.

Those of us with B type blood are more susceptible to malaria and TB, and indeed other viruses that ‘look’ like alpha gal. But, we’re less likely to drop dead from a fatal tick reaction.

As I said before, it’s only the adult tick that can give you a reaction. There are two ways this can happen. The first is scientifically known as ‘scratching at it like a m-fucker and pulling it out with tweezers in the dark without your glasses on’. This squeezes the tick’s body, giving you an injection of The Stuff. Anecdata suggests that a potentially fatal reaction is much more likely when it’s in your head, which is a feeling familiar to any woman who has visited a doctor at any point in her life.

The second option is that the tick itself will inject The Stuff, after 4 days of feeding. This is unlikely to happen to anyone older than a baby, as most people know when they’ve got a tick attached to them and rip it out.

The best option is to freeze them. There are now products on the market that provide a short squirt of ether that freeze-dries Ms Tick (only adult ticks AFAE (Assigned Female at Egg), feed on humans.

And, because this is Australia, you can also use this stuff;

They’ll both kill ticks but only one of them will eventually leave you in need of a re-bore.

And that’s today’s post about genetics, evolution, deadly pathogens and bicycles.