Singal-Minded
Singal-Minded
A Swedish Investigative Journalist Talks About The Youth Gender Medicine Scandal She Helped Uncover At One Of The World's Top Hospitals
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A Swedish Investigative Journalist Talks About The Youth Gender Medicine Scandal She Helped Uncover At One Of The World's Top Hospitals

"It's so important for the healthcare workers in this field to not become activists."

Originally published 1/26/2022, now unlocked to pair with this BARPod episode. The transcript has been copyedited in the meantime. Jemsby subsequently won a major award for her journalism on this subject.

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Back in November [of 2021], the weekly Swedish documentary program Mission: Investigate broadcast an alarming episode about a scandal involving youth gender medicine at Karolinska University Hospital, which is considered one of the top hospitals in the world. Not long after, I interviewed the episode’s lead presenter, Carolina Jemsby, a Swedish investigative journalist whose team has been covering that debate for years.

I’m going to eventually harvest some quotes from my discussion with her and write up a full article about the situation in Sweden for the free newsletter — particularly the question of what we in the States should take from it. In the meantime, here’s my full interview with Jemsby [Clearly I never got to this. -JS]. You can watch the documentary with English subtitles here, and you’ll probably get more out of this interview if you do. No obligation, though, as this Q & A is pretty self-contained and I asked Jemsby to sum up all the major issues in her own words.

I took a similar approach to editing the transcript as I did the last time I posted a long interview: I erred on the side of readability over complete fidelity to the spoken conversation. Here and there I snipped and polished a bit, so if you’re going to quote directly from this for any reason you might want to check the transcript against the audio file. The audio quality isn’t fantastic this time around — sorry about that, but Jemsby didn’t have access to a good external microphone where she was at the time. Oh, and I threw in some hopefully helpful links here and there, as well as a few additional points and clarifications in brackets.


Jesse Singal: Carolina, thank you so much for talking to me.

Carolina Jemsby: I'm glad you wanted to talk with me.

Can you give me your full name and what you do, for my audience?

Sure. My name is Carolina Jemsby, and I'm an investigative reporter — independent; I'm a freelancer. But I mainly work for Swedish television, producing documentaries — longer stories focusing on different topics.

And this is sort of the Swedish equivalent of, like, the BBC, or NPR in the States, something like that?

Yeah, Swedish television is a public service company, and the program I mainly work for, Mission: Investigate, is broadcast weekly and is, I would say, the most well-known investigative TV program in Sweden.

Okay. So how did you first get into the subject of youth transgender medical care?

Well, that was actually a couple of years ago. It was back in 2018. And we got in contact with different people who were all telling a story that somehow amazed us and astonished us. Because it was a story that we hadn't heard before, about a lot of teenage girls — or born girls — that were seeking transgender healthcare. Which we could obviously see in all the statistics, that there was a huge increase the last couple of years. But [it turned out that] many of these girls were actually detransitioning later on. That they were seeking help, to feel better, to feel like themselves, but after a couple of years, realized that this was not the right path for them. Not everyone, of course, but some of them.

And prior to this, I had never heard of detransitioners. I had heard of some old men who had previously been trans women, but then regretted their decision, and so on. But this topic of regretting gender-affirmative treatment, and detransitioners still being young — that was, for me, unheard of. And another aspect that we were also focusing on, in our first program, was that transgender healthcare was somehow only affirming the people who were seeking healthcare at the clinics. They didn't ask the more problematic questions, like, Could this feeling you have of not being the gender you were born to be come from something else but gender dysphoria? Could this be a body dysphoria, or something else? You know, just... being a little bit more difficult, and not only confirming and affirming the feelings of the young people seeking help. And the more we got into the topic, me and my colleague, and the more research we did, the more medical doctors we spoke with, the more young trans men we spoke with, who were starting to question their decisions, we felt that this is a really important story that also revealed something about the time we're living in.

Because it's so much, today, about identity, who you are, who do you want to be, who would you rather be, if you were not yourself. Like one young detransitioned woman told us, or wrote us, she was comparing it to being in a computer game. Like if you don't like your character, you can just, you know, change it, and then be someone else. And then that was the way she had felt about herself. Which is of course, I mean — in the computer game, it's possible. But in real life, everything is... it's something completely different. And so that was how we kind of got into the topic. And then, of course, it's evolved and we get new stories, new information, making us continue.

And how many episodes have you produced and been the lead presenter in?

In 2019, we published two one-hour documentaries. The first one is called The Trans-Train and the Teenage Girls. The second was The Trans-Train: Part 2. And then in 2020, we just did a shorter story, in like 15–20 minutes. And then now, a week ago [as of early December], we published our third one-hour documentary.

Before we get into the specifics of that — because that's the one I've seen and I want to talk about — could you just help situate my readers and listeners a little bit? Because part of the challenge here is the question of what an American audience should take from your work. And in the United States, youth transgender care is such a hotly contested issue that, in some states, they're literally trying to ban it. Those attempts have, I think, mostly been unsuccessful. In other places, they have something very close to informed consent, where if you want hormones, you can get them, or if you want blockers, although you often do need parental approval. In Sweden, is this widely accepted? Is anyone trying to outright ban it? Or is the conversation not quite so extreme there?

No, it's not as extreme in Sweden as it is in the US. But I think one of the problems for everyone involved in this, both the group that desperately needs this healthcare — because that group also exists, and that is important to keep in mind — but also for the group that may not need this kind of help, but would rather need some other kind of help. … I think for everyone involved, the politics, and the political aspect of this particular type of healthcare, it's really damaging the ability for everyone to get the right help. But in Sweden, it's part of the public healthcare [system], meaning you don't pay for it. It's not private in any sense. You would first go to a psychiatrist. And then you would get referred to the gender identity clinic, and there are six clinics in Sweden for minors. And after you get diagnosed with F64.9, I think it is, you can start puberty blockers, if that could help you, if that would ease your gender dysphoria. And then —

That's F64.9 in the ICD, or whatever it is?

Yeah, exactly. Yeah. Yeah. And —

’Cause that's sort of the international equivalent of our DSM. Sorry to interrupt you.

Yeah, yeah, yeah, it is. Sorry, I forget the code of the DSM. But it's, I'm sure you know what it is.

I definitely don't know the code. I was impressed you knew the ICD code. So it's basically just the equivalent of being diagnosed in the States with gender dysphoria under the DSM.

Yeah. And the first diagnosis you get is that you have some kind of gender dysphoria. And the second diagnosis code, that will enable you to get gender affirmative hormones — testosterone or estrogen — that is the second code, diagnostic code in our system, F64.0, which is gender... not gender dysphoria, but trans... well, it's a trans diagnosis, so to say, meaning you are a trans person, and you need affirmative treatment.

Gotcha. So this is like any other medical procedure or diagnosis in Sweden, in that it's covered by the state healthcare. And there's, you know, it's just sort of given out the way you give out any other treatment. If a doctor thinks you need it and you go through these steps you can get it.

Yeah. Yeah.

So the immediate timeline that sparked this most recent episode that you hosted, I guess this goes back to May. So, the Karolinska Institute — I'm pronouncing that right?

Yeah. Karolinska Hospital, actually. It's the research part of it called the Institute, and then you have the hospital, so it's Karolinska Hospital.

Gotcha.

Which is actually, I think, labeled as one of the top hospitals in the world, globally. So it's considered high level. [I’m not sure which rankings she was referring to, but in short, yup: Newsweek had it at #7 in its 2021 rankings.]

Yeah. The name comes up, especially the research arm. So this is — just, again, to situate people — this is one of the best hospitals in one of the best healthcare systems in the world, right? Safe to say?

Yeah.

Okay, I won't ask you to be modest about that. You guys do have a very good healthcare system.

No but I think that they — I was laughing a bit about that, but they have all these banners everywhere when you visit the hospital now, that it's the, I don't know, the eighth best hospital in the world.

Safe to say, it is a very good hospital, however they rank these things. So your story, in a sense, starts in May, when they put out an announcement that gets a lot of — it did not get a lot of attention in sort of mainstream news outlets, but among people who follow this issue, it got a lot of attention. What did that initial change-of-policy announcement say?

Yeah, in May they announced that they were no longer initiating new hormone treatments for minors, unless it was part of a research project. And they didn't have any ongoing research projects. Meaning that, in reality, it was a stop. It was an end to all new hormone treatments of minors. And they refer to the lack of scientific bases for the treatments. Usually, in Sweden, as I guess in all other countries, healthcare should be given on the basis of evidence, and of scientific research, knowing that you're doing more good than harm. And they were saying, like, we see potential side effects that can be quite severe, like lowered bone density, different sorts of cancer, different sorts of heart disease, cardiologic[al] effects, and so on. So they refer to potential side effects, adverse effects, from the treatment, and they said that they believed it was unsafe to continue with these treatments.

I think this should be seen in a perspective of, in Sweden, we started to treat minors maybe around the year 2000. And for the first 10–15 years, it was a few people every year. There were so few patients, minor patients, who were seeking transgender healthcare. And then, as you know, around 2013–2014 it skyrocketed. It was so many minors, who all of a sudden came to the clinics, seeking this healthcare. And the way they had been treating these very few patients was the way they were treating everyone now coming in. And that is an experimental treatment, because there's not enough scientific basis for it. And I think that was why — that was what Karolinska was referring to when it said, Okay, let's put a halt to this now.

One thing I found frustrating about covering this issue is that I think among some Americans, there's not much understanding that, in many countries, this is now a legitimately controversial procedure. So what Karolinska said is the same thing that was said by bodies in Sweden and — not Sweden, Finland — Australia. ... [In] the UK, a court ruling, their sort of national institute that looks into evidence — [This was a slight overstatement — not all of these governments and bodies came to conclusions as conservative about blockers and hormones as Karolinska’s.]

Also in the UK, you have the NICE —

That's what I'm referring to, the NICE evidence review, which is — yeah, sorry. So there were two things in the UK. One was the Keira Bell case, which is a judicial decision. But the official review of the evidence for puberty blockers and hormones for youth finds that it's very weak. So, after Karolinska makes this announcement, you have a situation where the other youth gender clinics are still providing these treatments, right?

Yeah, some of them. Yeah.

But Karolinska is sort of moving in the same direction as some other national bodies, and some other research institutes. But, where your documentary comes in, the most explosive part of it is that in making this announcement, they were not really forthcoming about what information they had, correct?

Exactly, yeah. Because as they were doing this announcement, as they were speaking about potential side effects, the medical doctors, endocrinologists treating children, treating minors, knew that some of their patients were suffering from quite severe side effects, and they didn't tell this to the public. Which also made that decision to hold all treatments so incomprehensible for the trans community, for other hospitals and for the public. Because if you just talk about potential side effects, you can get potential side effects from a headache pill, right? And here is a situation where they actually had their own patients — minor patients — who had effects on their skeletons, they had other side effects, which were also quite severe. They weren't open about this.

So, in other words, instead of saying, "We are halting these treatments because our patients have had severe side effects," they made it out to be more hypothetical, as though they just reviewed the evidence and now they're less sure about things. I definitely would invite people to watch the documentary, and in it there's a lot of what we call “buck passing” in English: one person saying it was the other person's fault, who says it was the other person's fault. Whatever the case, this does come across as basically a cover-up, right?

Well, yeah. But, I mean, I don't know if it's the medical doctors at the hospital that haven't, you know, come forward to their heads of their departments and told them about this. Because the head of the children's hospital at Karolinska, he basically sits and says, "I had no idea that patients have been suffering from severe side effects at my hospital." Which, to me, is very, very strange. I have a problem understanding how that could be possible. But also I'm not, I don't know exactly how the ways of information are, in the hospital.

Right. Well, it seems that either — I'm not going to ask you to decide which of these is more likely — either he's not telling the truth, or there's a very dysfunctional system where crucial information didn't get to him.

Yeah.

Your documentary focuses mostly on a child named Leo, who I want to get to in a minute. But what are the overall numbers here? Because, basically, the way you reported this out is, you got hold of more than a dozen records proving there were severe side effects at Karolinska, correct?

Yeah.

What was the total number?

We were able to prove that at least 12 children, apart from Leo — so, total of 13 children — were severely harmed by these hormone treatments and puberty blocker treatments, yeah.

What were some of the symptoms?

It was osteoporosis. How do you say in English, like a lowered bone density? It's —

Osteoporosis, right.

Yeah, osteoporosis. But it's not really osteoporosis, what he has. He has, like, the level below? But he also had two vertebrae in his spine that have changed the way they look? They're more, like, this is like, how to explain it in English? They're more —

Basically, spinal damage in someone who is 14 years old?  

Spinal damage, definitely. Yeah, yeah. And he's suffering from pain every single day. He has a problem standing up for longer than 15–20 minutes, and he's 15 years old. He's also been a lot shorter than expected, his length. And this is a side effect of puberty blockers. I mean, the bone, the skeleton, won't be mineralized. You will stop growing. And the whole idea is that once you stop the puberty blockers, everything will take off again. But, as shown with Leo, it doesn't always do that.

We’ve also seen children that had side effects affecting their livers. We had seen children who became very, very depressed — so depressed that they were even put into hospitals after suicidal attempts, from after starting with puberty blockers. And I mean, the whole idea with puberty blockers is to make the person feel better, mentally. We have also seen effects with testosterone, obviously, that young patients have been treated with testosterone. And after a year, two years, on the hormones that they decided that, No, I'm actually a girl, I don't want to become a man. Meaning they already had a deeper voice, they already have —

Permanent effects, in other words.

Permanent effects, that will never — yeah.

And that's important. I mean, we're gonna get to the question of what the percentages are in a minute. But that right there is important, because the argument you hear, if you report on this issue, is that kids are very carefully assessed and they don't put anyone on puberty blockers or hormones whose identity isn't more or less set. So this would suggest that in some cases, at Karolinska, that wasn't true, right?

Absolutely. And I mean, that's what they write themselves. They've actually done a couple of adverse [incident] reports where you can see that the clinic[ian] themself actually states that, Okay, we didn't do proper assessments, we didn't take all aspects of information into the process of generating a diagnosis. There are also cases of children who have been sent off to the endocrinologist without even having a diagnosis. It's been kind of the picture you get when you read these adverse reports, and read what the medical doctors and nurses within the clinic and within themselves, you get a picture of a chaotic situation, where children have been treated without proper assessments, and sometimes even without psychiatrists being involved in the process.

I didn't understand that when I saw it in the documentary: the idea of a kid going on puberty blockers or hormones without a formal diagnosis. So, what are they taking the medicine for?

Yeah, it's not supposed to be that way. I mean, that's what's gone wrong here. And that's why they did an adverse report. They didn't do an adverse report because they regretted the detransition. They did an adverse report because they were doing wrong, and sending them off without a diagnosis. I think that the explanation is — and this is my own theory — I believe that it's been such an increase of young patients coming in there and being desperate for treatments. And you have medical doctors just being overwhelmed, with too much work, too many patients to keep up with, that sometimes a nurse, or a psychologist, or someone who doesn't have the right competence, actually just refer them away to start hormone treatments, without having had the proper assessment, without having the conference with the different medical doctors, psychologists, and other people involved, that are supposed to discuss the patient and come to a decision together. That somehow I think the understanding has been if you seek transgender healthcare, you need transgender healthcare. There are other aspects, that this may be a young person that is suffering from some kind of body dysphoria, or some kind of disorder, who needs help, but may not need this help. Or may need it! Either way. But there could be another explanation for someone seeking this healthcare. I think that has been something that hasn't been on the agenda at all. Meaning, they've been running too fast sometimes.

Yeah, I wanna — well, there's so much I want to talk about, but I think we should probably just highlight that we could separate out two different things. One is political pressure, which we'll get to and we'll talk about that, because there's a moment in your documentary I want to talk about. But the other is just plain not having enough experts to treat these kids, right? And that is the same problem you would see if there was a sudden wave of diabetes or cancer — just literally not having enough experts in the building to give them good care. Is that right?

Yeah, I guess. Yeah. And this is my own theory. I really want to emphasize that. Because, I mean, it's not what they said themselves, but that's how I interpret it from information I've got.

So, I think I have this number remembered right. The total number of kids ever given puberty blockers in Sweden is about 440. Is that correct?

Yeah. Yeah, that's correct.

Okay. And about half of them at Karolinska?

I don't know. I would believe, without knowing, that it's more than half of them that are from Karolinska.

More than half.

Karolinska is the one hospital that's been treating almost every kid. Not everyone, but almost, yeah.

Okay. So, I guess what's worrisome here is, we don't know the total number of kids who have had side effects. This was just a handful of documents that you were able to get. It did not come from a comprehensive review of patient files or anything, right?

Yeah, no. And actually, this is something that medical doctors, and even professors and endocrinologists, now are talking about: that all the patient records should be gone through. And we should look into it, to see — to try to understand, like, how many children have actually suffered from side effects. Because it could be so many more than anyone has suspected up until now.

Yeah. I mean, it's worrisome, because even if these 13 were the only kids with side effects — and we know were not, we know that's not the case — that would still suggest, you know, if you run the numbers, you know, maybe five percent of the kids at Karolinska have serious side effects. Even that would be a big enough number that parents should at least know about it. But the real number has to be higher, just because we haven't looked, right? [In retrospect, it was silly for me to make even a vague estimate here given how little data we have. The point is simply that it wouldn’t take a lot more cases to get us into worrisome territory.]

Yeah, like one professor said to me, "You know, we stopped the AstraZeneca vaccine against COVID. Because, like, one in a million get severe side effects. And now, why are we accepting this?" So, it's absolutely a lot more children. At several hospitals that I spoke with, I had medical doctors and endocrinologists telling me that they, too, saw side effects, but they didn't report it. They saw lower bone density, they saw all these side effects. And they were like, "Yeah, we just — we're really worried about it. But we continue to treat as we're supposed to do, and we just hope that it will go well in the end. But we don't know. And we're worried." That was [what] other hospitals wrote to me, so it's definitely more cases.

So it's accurate to say — I might just be rephrasing a question I've already asked you — no one in Sweden, none of the authorities, or none of these hospitals, or clinics, has really checked? We just don't know how many kids there are like this.

No. No one has checked. No one knows how many children there are suffering from side effects, from these treatments. No one knows.

Yeah, I guess, what jumped out at me is that your medical system is so much better than ours, and I think any problem — I'm just editorializing here — I think any problem you guys have is probably worse here. And that's what worries me about this.

Yeah, definitely so.

You also had on camera — I mean, it was great, you guys got people on camera from, I think, every gender clinic in the country. And there were other clinicians, at other hospitals, who told you, on the record, that they just weren't worried at all about this. What do you make of that? Should we be skeptical of that?

Well, I'm skeptical of that, obviously, since I've seen and met with patients who are suffering from side effects. But I think this is so interesting, because this is something that goes, when you talk about transgender healthcare, people sometimes tend to be activists, even if they're — no matter if they're pro or con this treatment, sometimes people can be really... I don't know, really wanting to emphasize how important this healthcare is, and maybe meaning that they don't focus as much on potential risks as they should. Or that I believe that they should.

But it's hard to understand. It's really, really hard to understand how you can stand as a medical doctor, with such a powerful treatment as this is — I mean, it's pausing the whole puberty; it's a chemical castration of the body — and how you can say that this is absolutely no worries whatsoever. "I don't worry about potential side effects. I'm just feeling so safe doing this." For me, it's hard to understand.

When I wrote an article about this stuff for The Atlantic in 2018 — I wish I could redo this, but we got a quote from a famous endocrinologist saying puberty blockers are safe and effective. And that's just — that's the line you get if you ask the experts. And I feel like I just don't really stand by that anymore. Like, I think the situation at the very least is concerning enough that I would not describe them as safe and effective — sorry, safe and reversible — full stop. It sounds like you're in a similar boat as me? [I slightly misremembered this — the quote in question was about hormones rather than blockers, and upon re-reading, the entire excerpt wasn’t as bad as I thought: “Among the issues yet to be addressed by long-term studies are the effects of medications on young people. As Thomas Steensma, a psychologist and researcher at the Dutch clinic and a co-author of that study, explained to me, data about the potential risks of putting young people on puberty blockers are scarce. He would like to see further research into the possible effects of blockers on bone and brain development. (The potential long-term risks of cross-sex hormones aren’t well known, but are likely modest, according to Joshua Safer, one of the authors of the Endocrine Society’s ‘Clinical Practice Guideline’ for treatment of gender dysphoria.)”]

Yeah, and even, it's quite interesting because the National Board of Health in Sweden, they're the ones giving out the recommendations of treatments. And in their old recommendations, which are still valid, it says that puberty blockers are totally reversible, totally safe, exactly as the quote you received when you wrote your piece for The Atlantic. And in the new ones, which are about to publish in a few weeks’ time, it's a totally different story, where they really go into all the different side effects, they quote the NICE report from the UK, they talk about the potential dangers — at least in the version I've seen, which is not yet published. And I think that is quite interesting. And this is something that we've seen throughout the history of medical treatments, that you may embark on a journey with a new treatment, and you believe it's a super one, that will just do good. And then, eventually, you see that, well, that is not the case. That may be the story here. [In a follow-up email, Jemsby wrote, “After we published our story, they postponed publishing the new one and it’s now expected in March.”]

That shift you just described, or that impending shift, is exactly what happened in the National Health Service. Their online language changed from basically saying blockers are safe and reversible to something that was much more measured, and pointed to the unknowns. So, I guess — just to editorialize again — my frustration is how behind the American conversation is on this, and how many people are still running around pretending that we have great data on this treatment.

But before we get a little bit into the politics, can I just backtrack and ask one more question about Leo, actually?

Sure.

When I see critics of puberty blockers point to the issue of not being as tall as you would have been... In Leo's case, he's not as tall as he would have been. But did he end up going on cross-sex hormones? Because aren't you supposed to sprout a little bit after you go off the blockers?

Yeah, no, he hasn't started cross-sex hormones yet. I don't know if he will. But he hasn't yet, at least.

Okay. So it could be that —

His family is obviously very disappointed, and lost their trust in that gender identity clinic, and in the healthcare. So they would not let him embark on yet another journey with pharma treatments.

So this is horrible for Leo, because he's stuck, caught in limbo, because it sounds like he still identifies as a boy. But he's had so many health problems, hormones might not be a possibility for him?

He's actually, as his mother says in the story — I can't go in too much into details about Leo, due to, I don't wanna, to his integrity — but he stopped puberty blockers a year ago, and he's so much better now. He's back in school. He does well. He's doing so much better in every aspect. Maybe not so much in the physical, but in the psychological aspect, a lot better, according to his family, which they interpret as being, you know, he has his hormones in his body again, and for many people having hormones in your body makes you feel better. And that seems to be the case with Leo as well.

So this really is just one anecdote, and we need to be careful, but that is the opposite of what people say about puberty blockers — that, if you take them, you'll feel better. He — you think that he stopped them, and that improved some of his mental health problems?

Well, that's what his family says — that he improved after stopping taking puberty blockers. And they also describe how his psychological well-being was deteriorating after he started on puberty blockers. That, instead of getting better psychologically, he was just getting worse and worse and worse. And they were kind of like, "He was supposed to, you know, to feel better with this medicine, and he doesn't." And then the clinic said, "Well, it will come. It will get better. It will." And so that's why they continued.

We should also add that he was on puberty blockers for four years. Which is just, on its face, truly negligent care that suggests the adults were asleep at the switch. Because you should only be on them for about two years, right?

Yeah. But that's quite interesting, because I mean, with Leo, they made so many mistakes. He was on puberty blockers even for more than four years, four and a half years. And they didn't do any bone-density measurements or X-rays on him over the whole of that period. Which, I mean, that should be checked, like, every second year, at least. But we also see, with other young trans people that've been on puberty blockers, and even, in one case, after only two years on puberty blockers, a trans boy had severely lowered bone density — not diagnosed with osteoporosis, but very, very low — after only two years. So it seems like, for some bodies, for some people, the effect may be worse than it is for others, and comes quicker.

I don't want to keep you too long, but I do want to get into sort of the politics of this, because there's an important scene in your documentary where there's a meeting of the European Professional Association for Transgender Health. They have a conference, and there is an address from two activists who — and I should be clear that I think activists should be at these conferences, and they should have a role in pressuring doctors to give them what they view as better care — but it's a noteworthy address, because they pretty explicitly say, "We should focus less on medical side effects and more on transphobia," right?

Yeah.

What did you make of that? I thought it was a powerful moment and I'm sort of curious what you thought that indicated and why you put it in the documentary.

Yeah, I think for trans activists it's quite easy to see that they understand the debate about potential dangers, or real dangers, with the different treatments, to be a threat against their ability to get healthcare and to get the help they need. So I think from their perspective, it's understandable, even if for me it is still quite shocking that you say that, "Let's not focus on any potential dangers with this treatment that you're giving to us." Especially since it's about minors, it's even [more] remarkable for me. But what really astonished me was that when they said this, to a whole group — I mean, couple of hundreds — of medical doctors working with this group of patients sitting there, they applauded this.

Which, for me, as a doctor, you have a totally different role than you do as an activist. And it's so important for the healthcare workers in this field to not become activists, but to stay focused on the health aspect. Because otherwise, I believe it's a betrayal of the group, if they don't look for what's the very best for this particular person, instead of just focusing on treating as many as possible and not caring about side effects or other potential dangers.

So your argument is more or less that, you know, trans activists are likely to have strong feelings on this in part because of their own experiences, and they should be allowed to advocate. But that for doctors, that shouldn't be the start or the end of the story. They also need to look at the evidence and think about the Hippocratic Oath, basically.

Yeah, but I think — I mean, there are two different roles. As a healthcare worker, you have one role. As an activist, you have another. They are lobbyists, they will advocate for what they believe. But the doctors, they must have — I mean, they should have the medical focus. That's their duty. At least, the way I see it.

I've noticed the same trajectory, sometimes with journalists in the United States. Especially as the line between reporting and opinion writing falls a little bit, or fades, there are some stories I'll read, where — not just on the trans issue, but on, you know, race, or abortion — where it's just, the reporter seems to be inhabiting the role of an activist rather than a reporter. And I think that's a little bit seductive, whether you're a doctor or a reporter, or anything else, because it's good to feel like you're on the right side of history, or that you're part of sort of a righteous effort.

Yeah.

Okay, so you've talked about this, for millions of people in Sweden, on TV, a bunch of times. Tell me a little bit about the response. Because my sense is things aren't as heated there as in the States, but in the United States, if you write about this issue in the wrong way, you know, people will tell you you're hurting people.

Yeah. No, we've had a lot of criticism against us for doing this documentary, for giving another aspect of the story — of being trans, of seeking transgender healthcare. Up until we had produced our first documentary, there was only one narrative, which was a narrative of being born in the wrong body, desperately needing help, getting help, being happy. And we said, well, actually, it's a little bit more complicated than this. And there is also a group that obviously is not benefiting from this treatment. Instead, they are really being harmed by it. And the trans activists, and the lobby groups, [have] been extremely hateful on social media. They've been really upset. They've been trying in different ways to try to steer or, you know, try to lobby more for that side of the story. They've also been spreading a lot of lies around our stories, and of what we've actually reported upon and not.

What kind of lies?

Well, they've been spreading — well, wrong facts, basically, about what our story was. What we, who we were interviewing. ... Like, I don't know how many times I heard them say, "You haven't interviewed one single trans person." I was like, "Well, actually, we did!" We have several trans people in our story. But they didn't — they were also critical of so many young people being treated today. I said, like, "Hey, wait, take it easy." And these were trans people from the Benjamin Foundation, which is a foundation working for the rights to healthcare for trans people. So it's, I mean, it was quite relevant people. We were also accused of not interviewing any medical doctors working with trans people, which we did. Yeah, so basically just spreading "alternative facts" about our story. [You guys don’t need to hear me complain about this for the umpteenth time, but I experienced this exact same thing, repeatedly, in response to my own work — criticisms that were so factually wrong it was surprising to me anyone would level them publicly.]

Which has been quite frustrating, because a lot of people criticizing us have also been people not watching the story, which makes the whole discussion a bit difficult. Because it's like, if you haven't seen it, because you don't want to see it, because you already know it's transphobic, then how can we continue to talk to each other? It makes it difficult. What also made it really difficult was that, for me, it's important to tell — I mean, these are stories and documentaries that we produce, because we believe that trans people should have the same right to good healthcare, to safe healthcare, to the right treatment, just as everyone else in the society. And then we're being accused of being transphobic. And for this program, I was in contact with quite some — quite many young trans people who were experiencing different side effects from their hormone treatments, and they wanted to talk about this because they were frustrated, and angry, and scared of what their hormones had done to their body, and what harm it had done in their bodies. And I thought it would be so important to talk about this from their perspective, from how they themselves are experiencing this, to improve healthcare and improve information for people to decide whether or not to go through this whole treatment.

And they were all scared off by the trans lobby, who were — I think you saw it in the documentary — they were posting different memes on social media: Just say no to this program, Don't talk to Swedish television, They only want to do us harm, and so on. So they were stirring up bad feelings, bad rumors about this. Which meant that people who wanted to [appear] in our story decided that they didn't want to participate, due to fear of what that might cause for the whole trans community.

Yeah. I think if you're a journalist lucky enough to have your work consumed by anyone, part of the price of admission is that people will be mad at you. But I found the moral weight... like, compare it to someone who thinks you did a story and you got tax policy wrong, or trade wrong, versus being told that your work is literally killing kids. That's sort of a uniquely potent accusation, I think.

Yeah, I mean, it's also, I think, another aspect of it that I've been thinking about a lot, because I've also done investigations into extreme right-wingers, the alt-right movement, and so on. And then, of course, you also receive a lot of hate, a lot of aggression from that group, which is something that most journalists don't have a big problem with, because it somehow comes with the job, that anti-democratic movements will not like you, because you will maybe expose to people who they really are or what they really want to do with our societies.

When you’re doing stories about this, about a group talking about everyone's right to be who they want to be — it's a lot of values that most people find easy to stand behind, and to embrace. And then all of a sudden these groups, that you may have seen as groups that you sympathize with, with those values, they are against you, and they get angry at you. I think that is something that scares off a lot of journalists from touching this topic, from talking about it. And that, in the end, will harm the trans group, because they will not get as good healthcare as they should get.

Yeah, I'm worried — especially in the States, there's a little bit of like a cycle of silence where I get so many notes from people who are a little bit worried about this, but would never say so out loud. And you see — we have sort of celebrity activist clinicians, who will make scientifically unsupported claims in major outlets, including The New York Times, and they'll be rewarded for it, because they're seen as the good guys. But if this stuff does really go south, and if our problem is as bad as yours is, or turns out to be worse, which is my theory, where will they be when kids need long-term medical care because they were never assessed appropriately? There's very little attention being paid to the possibility that this sloppiness could have real consequences for vulnerable people, I think.

Yeah. And I think it's also, when discussing this topic, it's so important to be able to have two thoughts in your head at the same time. That these treatments may not be for everyone. Some may be more effective, while others will not. But this is also, for a big group, this is really important treatment, that should be there, that should be in the healthcare system. It's just that... somehow, first it was so much discrimination against this group, it was such a struggle for them to get healthcare. And now it's somehow gone just the other way, where it may be, in some cases, obviously too easy to get this healthcare, because people are treated who later regret that decision. And that is really, really serious.

I think if I was, you know, a 45- or 50-year-old trans person, and I had had to fight for years and years to get hormones or to get doctors to listen to me, I can understand how I would be upset if I read a magazine article or saw a TV show suggesting this treatment was being given out too easily, because that would run so contrary to my own life experiences.

Yeah, and I think this is a group that has had to struggle really hard for their rights. I mean, what we're seeing in — not only in the US, in some states in the US, but also in some countries in Europe and otherwise, is also that there is political pressure against this group, demonizing them, in a way that makes me also understand that they are afraid that the access and the acceptance that they have now in the society will be taken from them. And I believe that's understandable. But the society must be — I mean, the debate we should have as a society must be a little bit bigger. We need to be able to discuss difficult topics, difficult aspects like this, and also to be a bit humble. And to understand that there may not only be one correct answer to these questions, there may be different solutions to different people. And that must also be accepted by everyone.

Do you think part of this problem stems from the idea that every single human being, like, down in their inner core, we have some sort of stable gender identity? Because sometimes I think gender, for most people, is a little bit more complicated than that.

Yeah. Can you repeat the question?

Yeah. So basically, the way this is commonly treated is that all of us have a gender identity inside us. And once you figure out what your real gender identity is, that's like a permanent feature of yourself and you might then need hormones to get it to match your body. Sometimes I wonder if that's sort of an oversimplified conception of gender that is causing part of the problem here.

Maybe. But I would say, in Sweden, we also have, like — the lobby groups have been fighting quite harshly for that not to be the conception of the problem. We have a growing non-binary group, and also the last years that the activist groups have talked about their need of accepting that people can be more fluid in their gender identity, and that should also be accepted by the healthcare system. So, maybe. But I guess for many of us, many people may still be very stuck in that kind of like, well, either you're a man or either you're a woman, and you're a man, but born in a woman's body. Let's fix it. And that is, I mean, obviously, from everything we know, now, it's oversimplified.

I sometimes hear from people who say, how could you possibly be in favor of puberty blockers given the lack of evidence, given how high the stakes are? Or hormones, given the permanent effects? Do you get people asking you that from the other side? And I'm curious how you would respond to that?

No. I mean, I'm not in a position where I can be pro or against puberty blockers because I mean, I'm not a medical doctor. But from my work as a journalist, through our research, we can see that there are obviously a lot of quite serious side effects connected to them. But I haven't really had that question asked to me like that.

Gotcha. Let me see if I have anything else I want to ask. Oh, just so no one accuses us of misrepresenting things: Anecdotally, you think there's more detransitioners, an increasing number in Sweden. No one has any data on that there, right?

No, there's no data.

Yeah, same here, which is part of the problem, I think.

Now, there's definitely an increasing number of detransitioners. We are in contact with, we've been having with, a lot of detransitioners. And we also had, after broadcasting this program, we had more people reaching out to us, who had detransitioned. And, I mean, the stigma these people are going through! I've tried to schedule a coffee with one detransitioned woman for, I think, like, five months now? And she's just unable to do it, because the moment she opens her mouth and hears her own voice, she just panics. She can't identify with the way she sounds, or the way she looks anymore. So I think there is so much shame. There is such a stigma around detransition. And I think most detransitioners put the blame on themselves, instead of maybe focusing more on the healthcare, on the doctors who pushed them through this. And I believe that is a story that will continue to grow over the next couple of years. That hopefully, more detransitioners get the courage to come out and talk about their experience, which will also, I think, hopefully improve transgender healthcare.

Yeah, it seems like they have an important role to play in that. Can you give a rough estimate of how many people you or your colleagues have been contacted by who said that they went through medical procedures and have now detransitioned or are hoping to?

Oh, that's maybe like, 30, around? Just an estimation. Yeah.

Okay, so 30 people. Yeah, it would be incredibly useful if someone had collected data on this. But I do think detransitioners are sometimes, in the States, at least, they sometimes just sort of fall out of the medical system. Does that happen in Sweden? I know you guys have better and more centralized data.

Yeah, no, but they fall out of the system, because also they exchange their equivalent to your social security number. So they're not traceable in the system after they change the legal gender, the legal sex. So it's — we've tried really hard for this program to try to get some kind of picture of how many have continued with testosterone after, you know, who started, and so on. And, I mean, which would only be an indicator of something. But it was impossible to trace the people through the system. So I would just hope that some researcher would go into this and get access to the deeper archives, where they could actually trace the actual individuals, and see how they are.

I mean, take one of the most famous transgender people in Sweden, an actress called Aleksa Lundberg, who has been in two of our previous programs. She was born as a boy, and in her early twenties she went through the whole treatment. And she says, “Well, today” — she just turned 40 yesterday, I think — “today, I wish I had never done this. I wish I could just have lived as a happy, feminine gay guy.” But then, of course, if she was to redo it all again, to become a man again, that would be to just... yeah. Do the whole thing once again. So she stays as a woman, but how do you count a person like that? I mean, she's not a detransitioner. But she regrets her decision to transition in the first place.

So there’s the theory that, in some cases, natal girls are transitioning partly because it's just hard to be butch, you know, or to be a lesbian. You've seen some evidence of that in Sweden, at least anecdotally?

Yeah, absolutely. If you don't feel like a typical girl, if you don't like girlish, or are supposed to be girlish-y stuff, or don't like dresses, or skirts, or boys, or whatever. It's for some people maybe just a more comfortable thing, to just stop being girls, or stop being women, and be something else instead. Absolutely.

Yeah. And it's funny. I mean, in as early as, I think 2015 or 2016, I talked to gender clinicians, and a good gender therapist, that's one of the very first things they'll do is separate out, you know, gender roles from deep-seated feelings of dysphoria. And if clinicians all these years later still aren't doing that, especially in Sweden, I think that's a pretty bad sign.

Yeah, maybe they do now. Let's hope so.

Anything else you want to tell people about your work or the situation in Sweden or anything I forgot to ask you?

No, just — what's really important for me is to be, I mean, this is not black and white. This is, for some people, this is a really important treatment, really important healthcare. People [who] are trans need to get medical help. But we should also be aware that there are severe side effects, and that everyone who gets this treatment may not benefit from it. And that should be taken into account when doing the whole assessment, when going to the doctors — the medical doctors, the psychiatrists, and so on. I think that is really important for me too — it's not that this healthcare should be, you know, stuck, or to close all access to treatments. I think that's the wrong way to go. And that's the way some people mostly interpret this. And I think that's very unfortunate, it comes out that way.

Do you think you're likely to do another episode on this subject at some point?

Maybe? [laughs] I don't know. We'll see.

Fair enough. Well, thank you very much for your time. I really appreciate you talking to me, and I would really recommend anyone interested in this subject watch the documentary.

Thank you.


Questions? Comments? Leaked adverse incident reports from major American hospitals? I’m at singalminded@gmail.com or on Twitter at @jessesingal.

Image: A man walks to the entrance of Karolinska hospital in Stockholm on March 30, 2012 as former French Prime Minister Michel Rocard was taken into intensive care at the hospital earlier today. Rocard, an 81-year-old Socialist veteran, has fallen ill in the Swedish capital and was treated in intensive care, the French foreign ministry said Friday. AFP PHOTO (Photo by JONAS EKSTROMER / SCANPIX SWEDEN / AFP) (Photo by JONAS EKSTROMER/SCANPIX SWEDEN/AFP via Getty Images)