Bigmouth Strikes Again: Carrie Marshall's blog

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Category: Health

Scare stories and newspaper nonsense

  • Unhealthy ignorance

    A genderqueer person undergoing a pelvic exam. Image: genderphotos.vice.com.

    There’s a superb piece in BBC Future about a growing problem in trans healthcare: because systems largely class people on gender rather than assigned sex at birth, trans and non-binary people can encounter significant barriers in getting adequate testing and treatment.

    Most healthcare has evolved with a straightforward dichotomy of gender in mind. Though there are thought to be nearly a million transgender people living in the US (this is a rough estimate as this data isn’t collected) there’s concern that this group is being largely ignored by health services and the medical industry.

    Rather than devising new ways to cope with changing social norms, transgender people are often shoehorned into inappropriate boxes instead.

    There are key differences between transgender and cisgender people, and those differences include the effects of drugs and anaesthetics, what kinds of screening are appropriate, the risks of certain kinds of illnesses and so on. A trans man may respond differently to medication or may produce different test results than a cisgender man or a cisgender woman, but the system is not geared up to reflect that.

    Doctors already factor in the importance of tweaking the standard female dosages for pregnant women, who have a higher body weight and are simmering in a cocktail of hormones that change certain aspects of their biology. However, no such considerations are routinely made for transgender people, who, as a result of surgery or hormonal therapies, are known not to respond to certain drugs in the same way.

    This is part of a wider problem, which is that medicine takes cisgender men much more seriously than anybody else. As the Independent reported earlier this year:

    A 2012 US study found that paramedics were less likely to take severely injured women to an emergency or other trauma centre (49 per cent of women versus 62 per cent of men).

    Men reporting irritable bowel syndrome (IBS) symptoms are more often referred for X-rays, women offered lifestyle advice or anxiety medication.

    …Women metabolise drugs differently 40 per cent of the time, McGregor writes. Yet 80 per cent of animals used in trials of potential new drugs are young males, and women’s participation in the first crucial phase of clinical trials is even now only 30 per cent. This leads to a situation where, for instance, it took nearly 20 years and thousands of complaints before the medical authorities realised that women only needed half the original recommended dose of the sleep aid Ambien.

    More frighteningly, McGregor writes that when drug trials are designed without sex-based criteria, “the different effects of the drugs on men and women often simply cancel one another out”.

    Perhaps even more worryingly, women are less likely to be referred for testing if they complain of cardiac symptoms, and more likely to die after a serious heart attack due to a lack of care.

    Every single one of my female friends has horror stories of male GPs not taking them seriously and dismissing severe problems as “women’s troubles” best fixed with chocolate and a hot bath. Very many of them have also experienced medical staff taking a “we know your body better than you” stance. The lack of knowledge about women’s health is often shocking.

    In a system that often treats women badly it’s hardly surprising that trans and non-binary people also encounter problems.

    When you factor in the large data gaps in everything from the average life expectancy of transgender people to the right dosages of medications for their bodies, along with the widespread lack of knowledge among doctors about how to address them – let alone treat them – and the high chance of them being refused treatment outright, it soon becomes clear that transgender medicine is in crisis. Few groups experience such significant barriers to healthcare, and yet their struggles are going largely unnoticed.

    The piece makes a really crucial point: for trans people, healthcare focuses on their hormonal and/or medical transition, not what happens afterwards.

    That’s not because being trans is new: as the article notes, you could argue that the first documented request for gender reassignment was in around 220AD. In terms of modern medicine, surgical and hormonal transition has been possible since the 1920s and accessible since the 1960s, so we should have lots of data on the medical issues raised by transition and on the health of trans people in their post-transition lives. But we don’t.

    if you were to look through every single medical record in the UK – all 55 million – you won’t find a single record labelled as belonging to a transgender person. This is also true for those assembled by many providers in the US.

    This data gap is significant, because it means many healthcare providers are operating from a position of relative ignorance. How do we know what medical issues are unique to trans and non-binary people if we don’t even record whether people are trans or non-binary?

    In fact, there’s mounting evidence that – as with many other traits, such as race – gender often defies the binary categories and clear thresholds that much of modern medicine has been built on. Transgender people often have distinctive anatomy and physiology, not just compared to the wider population, but to each other – depending on what kind of treatment they have had.

  • Happiness is not a cold scalpel

    Last night I read a post by a trans woman that made me sad. It was intended to be supportive – it was written as a kind of open letter to trans women who compare their appearance to other women and find themselves lacking – which is why I didn’t give it a kicking in the place where it was posted. But I think it’s worth talking about here.

    The poster wanted to tell trans women that happiness and self-acceptance are possible. All you need to do is “pass as cis” – that is, look like a particular kind of cisgender woman. And to do that, all you need to do is lose a ton of weight, take a ton of hormones, have facial feminisation surgery and undergo three rounds of vocal feminisation surgery.

    That might have been the route to happiness for the poster, but it might not be for anybody else.

    Take facial feminisation surgery, aka FFS. The poster had a well paid job and was able to pull together around £15K for their FFS (which suggests they didn’t have many treatments; you can easily spend many times more than that). Some people will never be able to afford that.

    And of the people that can afford it, some of them will not get spectacular results because the surgeons can only work with what they’ve got. If you look like me, a chin reshape or a brow reduction is not going to make you look like Audrey Hepburn.

    It’s the same with hormones. For some people HRT’s effects are minimal; their effectiveness depends on a whole host of factors, particularly genetics and age. Age is a big one, so telling late-transitioning trans people that HRT will definitely have magical effects is untrue. And even minimal effects may be many years in the future: not only do hormones work slowly but the wait to even start treatment can be very long. In some parts of the UK you can expect a wait of around five years between being referred to a gender clinic and getting a hormone prescription.

    Last but not least, there’s weight. The poster asserted that losing weight has a massive feminising effect, but again that depends on the face and body you have. Some people find that losing weight makes them look more masculine, not less.

    Of course if that’s the case they could always have facial feminisation surgery… and we’re back to the start again. There’s always one more thing you need to do before happiness is yours.

    Let’s pretend I have the desire and the resources for facial feminisation surgery (spoiler: I don’t). What if after a brow reduction, or chin recontouring, or a hair transplant, or a nose job, or a tracheal shave, or a lip lift, or cheek augmentation, I still don’t look or feel pretty?

    What if I’m still clocked because of the things surgery and hormones can’t change: the width of my shoulders, the breadth of my ribcage, the length of my torso, my centre of gravity?

    What if something goes wrong with the surgery – many FFS providers specifically advertise their ability to fix other surgeons’ mistakes – and I can’t afford to get it corrected?

    What then?

    I’m not suggesting that FFS, HRT and other things can’t have positive effects on how you feel about how you look. Of course they can. Some people have these things, look amazing and feel fantastic. I don’t endure two hours of painful facial electrolysis every week for a laugh: I do it because having a stubble-free face is important to me.

    But the idea that there is a particular standard of beauty (thin, pretty, usually white) and that if you just starve and carve yourself enough to meet it then happiness will surely be yours is a pernicious myth that has caused a great deal of harm to very many women.

    Cosmetic surgeries will not necessarily make you any happier or deliver the results you want, and nobody should be telling anyone that they will.

  • The fast track

    NHS England:

    The maximum waiting time for non-urgent, consultant-led treatments is 18 weeks

    PinkNews:

    Trans and non-binary patients in the UK’s south west are waiting more than 193 weeks to see an NHS specialist – more than 10 times the NHS legal guideline of 18 weeks.

    Waiting times vary across the UK but they’re years-long everywhere. For example the Sandyford clinic in Glasgow is currently making initial appointments for people who registered in January 2018. That’s 31 months; around 135 weeks. And that wait is for an initial assessment, not a consultation on any treatment.

    Update

    I think it’s worth pointing out that these times are for people who were in the system two to four years ago, not people who are joining the waiting list today. Their waiting times are going to be even longer.

    I joined the Sandyford waiting list in late 2016 and was seen 11 months later. People who joined in early 2018 are now being seen 31 months later. How long will the class of 2020 have to wait?

  • “Ruthless, reckless, dishonest”

    This, in Slate, is devastating. The Trump Pandemic: a blow-by-blow account of how the president killed thousands of Americans.

    The story the president now tells—that he “built the greatest economy in history,” that China blindsided him by unleashing the virus, and that Trump saved millions of lives by mobilizing America to defeat it—is a lie. Trump collaborated with Xi, concealed the threat, impeded the U.S. government’s response, silenced those who sought to warn the public, and pushed states to take risks that escalated the tragedy. He’s personally responsible for tens of thousands of deaths.

    This isn’t speculation. All the evidence is in the public record. But the truth, unlike Trump’s false narrative, is scattered in different places. It’s in emails, leaks, interviews, hearings, scientific reports, and the president’s stray remarks. This article puts those fragments together. It documents Trump’s interference or negligence in every stage of the government’s failure: preparation, mobilization, public communication, testing, mitigation, and reopening.

    Trump has always been malignant and incompetent. As president, he has coasted on economic growth, narrowly averted crises of his own making, and corrupted the government in ways that many Americans could ignore. But in the pandemic, his vices—venality, dishonesty, self-absorption, dereliction, heedlessness—turned deadly. They produced lies, misjudgments, and destructive interventions that multiplied the carnage. The coronavirus debacle isn’t, as Trump protests, an “artificial problem” that spoiled his presidency. It’s the fulfillment of everything he is.

  • Raging and mourning

    I’ve just finished reading How To Survive A Plague by David French. It’s a book about the AIDS crisis and the activist groups, notably ACT UP!, who fought an incredible battle against prejudice, ignorance and inertia.

    Many of the cover quotes describe the book as uplifting, but that’s not a word I’d use: it’s a deeply harrowing read, and while it has a happy ending of sorts – it finishes at the point where retroviral therapies mean that infection was no longer a death sentence – it’s a book about deaths on a truly horrific scale.

    The US CDC reckons that 675,000 people in the US died during the epidemic, and that 13,000 more die from it every year. The World Health Organisation says that globally, AIDS has killed around 33 million people.

    The book is an ensemble piece, and it’s not a spoiler to say that many of the key characters in it don’t make it to the end.

    It’s instructive to read this book during another global health crisis, and inevitably there are strong parallels between AIDS and COVID-19 – not least the lack of action by particular governments, especially right-wing ones, and misinformation and ill-informed speculation in the press. But it wasn’t just incompetence in the case of AIDS. It was effectively manslaughter. One of the reasons the AIDS crisis was so devastating is that too many people in power simply didn’t care, even when the scale of the crisis was apparent.

    A key statistic in the book notes that at the beginning of the crisis, 80% of Americans claimed they’d never met a gay person. That unfamiliarity bred contempt.

    As far as many politicians, religious leaders and newspaper editors were concerned, gay men’s lives didn’t matter and weren’t worth saving. The book is about the US, but this was true of the UK too: our press, politicians and religious leaders were often just as hateful (and it’s jarring to see some of the most outspokenly anti-gay publications of the time, such as The Sunday Times, providing glowing quotes on the cover). That intolerance contributed to inaction, and even when sums were pledged to fight the disease they were far too little for far too long.

    I have a lot of thoughts about the book and the story it told, but at the moment they’re too emotional for a blog post: How To Survive A Plague was a deeply upsetting read that’s left me angry as well as sad.

    I was a teenager during the AIDS crisis, and I remember the public safety campaign: “AIDS. Don’t die of ignorance.” And people did die of ignorance; the ignorance and intolerance of the powerful. So many people have so much blood on their hands.

  • The anti-Goldilocks virus

    Ed Yong is one of the finest science journalists we have, and this in The Atlantic is an exceptional piece of journalism: How The Pandemic Defeated America.

    A virus a thousand times smaller than a dust mote has humbled and humiliated the planet’s most powerful nation. America has failed to protect its people, leaving them with illness and financial ruin. It has lost its status as a global leader. It has careened between inaction and ineptitude. The breadth and magnitude of its errors are difficult, in the moment, to truly fathom.

    …It is hard to stare directly at the biggest problems of our age. Pandemics, climate change, the sixth extinction of wildlife, food and water shortages—their scope is planetary, and their stakes are overwhelming. We have no choice, though, but to grapple with them. It is now abundantly clear what happens when global disasters collide with historical negligence.

    Much of it is relevant to the UK too.

  • Death by numbers

    On Twitter, Dan Barker has posted an interesting thread showing how terrible reporting becomes conspiracy theory nonsense.

    It begins with The Telegraph. Its science editor reported that lockdown could cause as many as 200,000 preventable deaths, and the headline was clear:

    The same claim was then posted by other news outlets citing the Telegraph. For example, Metro’s headline was “Coronavirus lockdown could cause ‘200,000 extra deaths’”.

    Remember, most people who share news stories on social media don’t read beyond the headline.

    This is important, because as Baker demonstrates, people are taking the headline and using it in anti-lockdown posts such as this one.

    First of all, that’s not what the article says. It is not a report about actual deaths. It’s a report about predictions of possible deaths in a very specific scenario.

    And secondly, the Telegraph has framed the story in what appears to be a deliberately misleading way.

    As Barker points out, the report this story is based on isn’t just about lockdown. The figures it quotes are from predictions based on “protecting the NHS” – that is, cancelling other healthcare to prioritise COVID-19 cases.

    The report asked the question: what would happen if prioritising COVID cases meant cancelling 75% of elective treatments, such as cancer treatments and other life-saving surgeries?

    That’s where the 200,000 figure comes from. It’s a worst-case scenario that says up to 25,000 people might die because their treatments were delayed; in the medium to long term, such delays could kill up to 185,000 more.

    So in this scenario, if we protect the NHS from being overwhelmed and have to do so for a long time it might – might – cost over 200,000 lives.

    And if we don’t?

    We’ll kill a million and a half.

    It’s there in the report, and in the Telegraph article, which notes that:

    …nearly 500,000 people would have died from coronavirus if the virus had been allowed to run through the population unchecked. And there would have been more than a million non-COVID deaths resulting from missed treatment if the health service had been overwhelmed in dealing with the pandemic.

    So protecting the NHS would kill 1.3 million fewer people than doing nothing.

    And yet this report is being used to fuel anti-lockdown sentiment when a second coronavirus spike in England, and the need for at least local lockdowns, is highly likely.

    Barker:

    In other words: The report implies lockdown could save hundreds of thousands of lives – the opposite of the headline.

    Newspapers are very keen to blame social media for spreading conspiracy theories, but many of those theories originate from newspapers and their online offshoots. Some of the most enthusiastic conspiracists are well known media figures: for example, one of the people currently pushing the “lockdown will kill 200,000 people” narrative is Toby Young.

    Many of the worst conspiracy theories circulating online originated in print.

    Here’s Marianna Spring from the BBC, who got chatting to two young men outside Topshop this week.

    Also an anecdote – while I was recording this on Oxford Street, two guys in their twenties started talking to me.

    Without me even explaining what the report was about they told me they wouldn’t be getting a coronavirus vaccine because it was a plot to microchip everyone.

    The roots of that conspiracy theory are in the anti-MMR vaccine scare, which predated Facebook and Twitter: it spread not on social media, but in the pages of the Daily Mail, The Sun, The Daily Express, the Daily Telegraph and The Spectator. The anti-vaxx movement it spawned is already responsible for thousands of preventable deaths; as it evolves into COVID vaccine denial it could kill thousands more.

  • Forever delayed

    Trans Health UK has posted an update on the few services gender clinics are currently providing. It’s summarised in this image:

    Look at that bottom row: that’s the current waiting time for a first appointment. Not a prescription or a referral to anything; just a first assessment. The trend was obvious long before COVID-19 came along: trans healthcare is in crisis.

    In Exeter the wait is currently four years; in Belfast the waiting list has grown so long it isn’t accepting any new patients.

    This is the reality of supposed “fast-tracking”, of people being “rushed” through the system. It’s years of waiting for a first appointment, then waiting list after waiting list for any kind of treatment.

    Here’s an example from my own experience. This was when the waiting times for my local gender clinic were 1/3 what they are now.

    Waiting time for initial assessment: 11 months
    Waiting time for second assessment: 4 months
    Waiting time for assessment for counselling: 2 months
    Waiting time for first counselling session: 10 months

    That’s three years for a first counselling appointment – and that first waiting period of 11 months is now 31 months, so God knows how long trans people have to wait for counselling now. I’ve been told that the waiting times for surgery are currently measured not in months but in millennia.

    In a better world this would be a scandal. But in this one, people actively campaign to make trans people’s healthcare even harder to access.

  • How about we try to stop people from dying?

    Yesterday, there were thousands of posts on Twitter by anti-trans activists claiming that only women get cervical cancer.

    It was a deliberate attack on trans men and non-binary people; the hashtag began after a trans man posted on Twitter about his cervical cancer diagnosis and a bunch of awful people started abusing him.

    Think about that for a moment. Somebody has received possibly the worst news of their life, and thousands of people pile on to say in effect, “fuck you! You’re not a man! Only women get cervical cancer!”

    Trans men and non-binary people are not women. However, if they have not had surgical intervention, their bodies will do the same thing women’s bodies do. And that means they are at risk of, and can die from, the same cancers as women.

    Part of the pile-on was also aimed at trans women. It’s pretty twisted to wear susceptibility to cancer as a badge of honour – “haha! You can’t die in the same way we can!” – and it’s only partially true. Trans women don’t get cervical cancer if they haven’t had gender reassignment surgery. But if they have, they can develop similar carcinomas. Trans women who have undergone hormonal transition should also be screened for breast cancer.

    The inclusive language that transphobes hate so much – people who menstruate, people with cervixes, people who can get pregnant and so on – does not exclude cisgender women. But it does include trans men and non-binary people, and that’s important. One of the reasons it’s important is because many trans people are not included in essential screening. Here’s Public Health England.

    If you are a trans man aged 25 to 64 who has registered with a GP as male, you won’t be invited for cervical screening.

    This is why organisations specifically try to include trans men in screening awareness programmes. If they don’t ask to be screened, they won’t be invited for screening.

    There’s no reason why the system can’t record lived/legal gender and whether someone’s trans as separate categories; there are significant biological differences between trans men and cisgender men, and between trans women and cisgender women. Long-term hormone treatment also means there are significant differences between trans women and cisgender men, and between transgender men and cisgender women.

    That complexity is currently reduced to a single item: M/F?

    I’ve had some experience of this too. Long before I officially transitioned, my GP’s surgery said they wanted to change my gender marker on the NHS computer to female. The practice manager explained that if the marker wasn’t changed, the labs would continue to reject my blood samples because they had female-typical estrogen levels. As far as the labs were concerned, high estrogen proved that my samples had been mixed up with somebody else’s.

    For me, changing my gender marker meant I started getting reminders to come for cervical cancer screening (you can contact your GP to opt out of those communications) and I won’t get reminders about prostate cancer screening when I’m older, so I need to be aware of that (although the hormones I take massively reduce my risk). For trans men, it means the reverse – and that’s a potential problem, because some trans men have an elevated risk of the very cancers they won’t be invited to screen for.

    The general bullshit that LGBT+ people experience often means higher levels of potentially risky behaviour – smoking, drinking to excess and so on. But the biggest risk is that the terrible experiences trans people often endure when they try to access healthcare can prevent them from taking part in preventive screening, or from seeking help until the very last moment. With cancer, early detection is everything.

    Here’s the US National LGBT Cancer Network.

    For trans men, ovarian cancer poses an extra challenge, due not only increased risk factors and decreased access to healthcare but also to the increased levels of discrimination faced by the trans community.

    One of the most famous examples of that is discrimination is Robert Eads, a trans man who was advised not to have gender reassignment surgeries because he was too old. He later died of ovarian cancer after twelve different doctors refused to treat him – not because he was a medical challenge, but because they didn’t want word getting out that they’d treated a trans man.

    What those doctors did is what the Twitter mob did yesterday: they decided that their personal feelings about trans people were more important than saving someone’s life.

  • “Only the wealthy get to survive the pandemic unscathed”

    Deb Perelman has written an interesting piece in the New York Times about working parents in the time of COVID-19.

    Why am I, a food blogger best known for such hits as the All-Butter Really Flaky Pie Dough and The ‘I Want Chocolate Cake’ Cake, sounding the alarm on this? I think it’s because when you’re home schooling all day, and not performing the work you were hired to do until the wee hours of the morning, and do it on repeat for 106 days (not that anyone is counting), you might be a bit too fried to funnel your rage effectively.

    …The consensus is that everyone agrees this is a catastrophe, but we are too bone-tired to raise our voices above a groan, let alone scream through a megaphone. Every single person confesses burnout, despair, feeling like they are losing their minds, knowing in their guts that this is untenable.

    Of course there is an element of privilege here: there are many people who, long before COVID, were forced to work very long hours and sometimes multiple jobs just to scratch a living (and in America, get healthcare). They didn’t get to write about it in the NYT.

    But that doesn’t mean Perelman doesn’t have a point. The response to COVID-19 means that in many parts of the world, many workers are now expected to do their jobs in the same hours from home. In addition to their full-time job they’re also expected to look after and teach their children, which is also a full-time job. And when politicians talk about re-opening the economy, those parents clearly aren’t being taken into consideration.

    I’ve heard from parents who have the luck of a grandparent who can swoop in, or the deep pockets for a full-time nanny or a private tutor for their child when schools are closed. That all sounds enviable, but it would be absurd to let policy be guided by people with cushioning. If you have the privilege to opt out of the work force and wish to, enjoy it. But don’t wield it as a stick to poke others with because far more people are being forced to “opt out” this year and will never professionally or financially recover.

    I resent articles that view the struggle of working parents this year as an emotional concern. We are not burned out because life is hard this year. We are burned out because we are being rolled over by the wheels of an economy that has bafflingly declared working parents inessential.

    I’m one of the privileged ones (although I’m ineligible for the financial support the government ensures furloughed workers and some self-employed people get to keep the wolf from the door, so I’m not that privileged). I was already a home worker, I don’t have to work specific hours and because I co-parent I still have a few days when I can work in silence without also having to amuse or educate my children. But the effect on my productivity and availability has still been catastrophic: while I cannot be available for half of the usual working week, the people who employ me expect me to be. Trust me, it’s hard to write an accurate piece about something complicated, let alone broadcast live to the nation, when your six-year-old is bored senseless and loudly demanding entertainment.

    Muddling through is doable for a short time. I’ve done it for four months, albeit four months that have wiped out all my savings. But what if the new normal is nothing like the old normal? What happens if your employer expects you to be back full-time but your kids’ school is only taking them part time? Given the horrendous cost of commercial childcare, the only solution for some couples will be for one of them to go part-time, assuming the employer allows it, or to quit. Most of the people expected to go part-time or quit will be women.

    And of course, things are even more difficult for single parents.

    Even those who found a short-term solution because they had the luxury to hit the pause button on their projects and careers this spring to manage the effects of the pandemic — predicated on the assumption that the fall would bring a return to school and child care — may now have no choice but to leave the work force. A friend just applied for a job and tells me she cannot even imagine how she would be able to take it if her children aren’t truly back in school. There’s an idea that people can walk away from careers and just pick them up where they left off, even though we know that women who drop out of the work force to take care of children often have trouble getting back in.

    This isn’t really about COVID. It’s about a sudden economic shock making existing fault lines deeper, amplifying the existing inequalities so that they affect a wider group of people. It’s about the hypocrisy of a largely male political class who have the resources to pay for high quality childcare, education and healthcare for their own families but deny it to everybody else. Childcare, education and health are not costs to be avoided; they’re investments in – and insurance for – the future.