Categories
Bullshit Health Media

Bad journalism

I’ve been listening to the You’re Wrong About podcast, this time about the infamous Ford Pinto. It seems that almost everything I thought I knew about it was incorrect and largely based on a single Mother Jones article.

The podcast makes an interesting point about that, and about journalism more widely: a lot of bad journalism comes from writers who are operating in good faith, or at least partial good faith. They believe that they have uncovered something so huge that they must tell the world. That belief can cause a kind of myopia.

Journalism is as much about what you choose to leave out as what you choose to put in. Let’s say you’ve got a whistleblower from inside an organisation with a suitably salacious tale. If it’s a really good story, if it’s the kind of story that’ll have people gasping over their morning paper, how much consideration will you give to the things that contradict or cast doubt over what the whistleblower is telling you?

People like to be heroes, and journalists are no exception – so if you think you’re the hero who’s going to break the story, you’re not going to consider that perhaps you’re being misled, or seeing connections that aren’t there, or ignoring evidence that shows that you’re not the hero here but the villain.

The MMR scare is a good example of that. How many journalists telling their readers of the entirely invented dangers thought they were doing Pulitzer-worthy public service journalism? And how many lives have been destroyed by the anti-vaccination movement they helped spawn?

Categories
Health LGBTQ+

Doctors say trans rights

The BMA’s annual conference has called on the government to protect the rights of trans and non-binary people both in healthcare and in wider society.

Dr Helena McKeown, Chair of the BMA representative body, said:

The BMA supports transgender and nonbinary individuals’ equal rights to live their lives with dignity which includes the right to equal access to healthcare. We oppose discrimination of all kinds and are committed to ensuring universal access to healthcare for all on the basis of clinical need.

While the BMA has numerous policies affirming our support of LGBT individuals, [The agreement to this new policy means] that, for the first time in our history, we now have a BMA-wide policy giving specific attention to the needs of transgender and nonbinary individuals. Receiving any medical treatment can be stressful for patients and so it is important for individuals to receive healthcare in settings they feel comfortable with. This applies to transgender as well as cis individuals.

The BMA hasn’t, however, clarified whether trans women have pelvises.

Categories
Health LGBTQ+

What gender doctors don’t tell you

I posted yesterday about my experience of being on decapeptyl, which stops my body making testosterone. I get an injection every 12 weeks, and without fail the final week is horrible: I feel stupid, sluggish and sad.

By coincidence, a trans person I know was talking online about decapeptyl and the massive mental dip they get in the week or so before a top-up. When I replied along the lines of “oh my god! Me too!”, another trans woman I know said she gets it too. It turns out that between us, everybody we know about who’s taking decapeptyl feels like absolute crap for the week or so before their levels are topped up, and considerably worse if they don’t get their top-up at the 12-week mark.

I’ve written before that there’s an incredible lack of research into trans-related healthcare, and this is a good example: it seems that there’s something going on here, but there’s no indication of what it might be. Online there’s some evidence of decapeptyl having negative effects for cisgender men (who take it for prostate cancer) and cisgender women (who take it for endometriosis) including severe mood swings and depression, but I can’t find anything relating to what I and other trans people are experiencing. Could decapeptyl have interactions with the other medications we take? I can’t find an answer to that.

I got my 12-week injection today, a week late. I’ll feel better very soon. But I don’t know why.

Categories
Health LGBTQ+

The system is cruel

Every twelve weeks, I feel like shit. It coincides with the injection cycle for one of my medications, which stops my body from making testosterone; in the week or so before each injection I feel sluggish and stupid and short-tempered and sad.

I don’t know if it’s connected or a coincidence, if it’s a genuine physical thing or psychosomatic, because from what I’ve read of the medication, once I’ve been on it for a year or so – and I’ve been on it for longer than that – my testosterone levels shouldn’t rise significantly towards the end of each 12-week cycle. But I keep a diary and the dates match; more so this month because I couldn’t get a 12-week appointment so I’ll be getting my top-up today, at the 13-week mark. I definitely feel even more sluggish, even more stupid, even more short-tempered and even more sad than normal.

Despite all that, I woke up in a brilliant mood yesterday – and then I got some more good news. I was offered a last-minute appointment with my gender clinic (GIC) doctor.

I was due to see her three months ago, but all trans healthcare basically stopped in Spring this year because of coronavirus. In the meantime I’ve had to do my own endocrinology to ensure a prescription change hasn’t messed up my hormone levels: my practice nurse did the blood test, send the bloods to the labs and I then compared the results with the desired levels. My prescription seems to be okay, but the gender clinic doesn’t know that yet.

It’s not just monitoring. There are some very important healthcare things I need to speak to my GIC doctor about, so when I got a call asking if I could do a telephone appointment at 10.15am I said yes.

It wasn’t ideal, because I was due to go on air at the BBC at 10.45. But it was a really important call, so I told the team that I might not be off the call in time to go on air; my friend and colleague Louise was happy to cover for me.

So I quickly collated all the things I wanted to discuss with the doc – blood test results, weight loss details, a few other bits and bobs – and I waited for her call.

And waited.

And waited.

And waited.

At 10.30, I called the clinic to see if there was a problem. We’ll call you right back.

They didn’t call me right back.

I finally got a call one minute before I was due to go on air, but it wasn’t my doctor. It turns out that there had been a mistake, the doctor hadn’t been available after all, I can talk to her in October. By this time it was too late to go on the radio, so of course I’m not going to get paid for my non-appearance.

The bungled appointment cost me money and wasted time, but it also really upset me. Most of my interactions with the gender clinic (GIC) have left me crying with frustration, and this was no exception: getting the appointment made me feel that after months of waiting, I could finally put some important wheels in motion. It’s much worse to be promised an appointment and not get it than not to have an appointment at all. As we all know, it’s the hope that kills you.

If the October appointment goes ahead it will be nearly a year since I’ve been able to discuss my healthcare; longer still since I’ve been able to do it with somebody competent*. That’s a long time to be in limbo.

This is normal. The COVID stuff is making it worse, but the system is cruel. Here’s Heather Paterson, CEO of SAYiTSheffield:

A person I know has just received [a] surgery referral letter, still with indeterminate waiting time, 6 years after their initial GRC referral. Which was some time after mental health referral. Which was after a wait from GP referral. Which was after years of building up to come out, tell anyone or approach services.

They have been actively fighting a system for over a decade that has thrown hurdles in their way at every step, and over the past few years been navigated while having to see anti-trans stories in the press EVERY DAY and groups actively organising to try and take their rights to live their life taken away.

I am so happy for them that they have managed to survive this process so far and can finally see a glimmer of light at the end of the tunnel, and so filled with rage for those who couldn’t make it that far.

So if you think people are transitioning on a whim, that they are coming out and in surgery weeks/months later, think again.

I’m amazed so many people actually survive this lengthy, quite frankly barbaric system.

* My prescription change was to undo a serious mistake made by my previous gender clinic doctor, about whom I ended up filing a formal complaint and a request to be reassigned.

Categories
Health LGBTQ+

“A devil’s bargain”

Writing for Jezebel, Katelyn Burns tells an extraordinary story of medical malpractice, litigious surgeons and people whose lives are changed irrevocably by medical mistakes: When Surgeons Fail Their Trans Patients. Warning, it’s pretty graphic in places.

It’s important to note that the vast majority of trans people’s surgeries have positive outcomes: gender reassignment surgery has an exceptionally low regret rate. But there is still regret, usually because of unsatisfactory surgical outcomes, and some surgeons do appear to have significantly higher rates of negative outcomes than others.

This is something that needs to be talked about, but trans people rightly fear discussing such personal things in public.

Burns:

…speaking out after a traumatic experience, in a moment when so few are able to access care, can either be weaponized by anti-trans activists or interpreted by advocates as a step back.

…When she posted about her experience with Dr. Rumer on message boards in an attempt to warn other potential patients, Carlie’s words were reprinted on anti-trans forums.

I haven’t experienced anything like the women in the article have, but nevertheless I’ve chosen not to post some personal things about my own healthcare for that very reason. Discussion forums and Facebook groups for trans people have an ongoing problem with fake accounts mining them for anything they can use against trans people.

…the environment can make it difficult for many trans people to find recourse, or warn others about bad surgical experiences. It’s a system that makes frank public discussion about surgical outcomes nearly impossible to have.

Some anti-trans activists create opposition to access to trans-affirming care by claiming treatments are experimental or too risky to be ethical, another obstacle when patients consider speaking openly about their experiences with individual surgeons. Though regret rates remain low and, and as Dr. Schechter says, “the risks and the complications are commensurate with the risks and complications of other similar procedures,” anti-trans disinformation has become a serious problem in many corners of the media.

Although the article is about the US system, much of it applies to the UK too.

Categories
Health LGBTQ+

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.

Categories
Bullshit Health LGBTQ+

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.

Categories
Health LGBTQ+

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?

Categories
Health Hell in a handcart

“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.

Categories
Books Health LGBTQ+

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.