By Anonymous

Editor note: This submission is from a Swedish-French comrade who wishes to remain anonymous. In an effort to combat the prolific disinformation circulating about Sweden’s trans health care system and the decisions from Socialstyrelsen, Health Liberation Now! is hosting an English version below. It should be accurate as of 10.15.2022. We will make edits as needed should new information or corrections come up.

Author note: This was translated from a French version and may feature clunky phrasing.

Why does this document exist?

Anti-trans organisations in any given country love to argue that other countries, such as Sweden and Finland, have fully stopped (notably hormonal) transitions for youths (thereafter used to mean “under 18yo”). It’s at best an oversimplification and at worst a plain lie. Even among those who support trans people and transition access for youths, inaccurate information is often repeated and goes viral, with most of the readers unable to fact-check due to not reading Swedish or even English.

As an annoyed French-Swedish trans person tired of repeating myself, I instead wrote this to sum up what was actually decided, with cultural / administrative context and links to all the original documents (generally in Swedish).

Context

Socialstyrelsen and SBU

Socialstyrelsen (“The national board of health and welfare”) is a Swedish public agency (“myndighet“) notably responsible for healthcare guidelines. It will often be called a “government agency” in other languages, but watch out: entities such as Socialstyrelsen are independent from the government, which can assign missions to them but does not directly lead them. Three agencies of the same type are Skatteverket (the tax office), Försäkringskassan (health insurance, most welfare notably for families and disability), Migrationsverket (immigration). Calling Socialstyrelsen a purely administrative entity isn’t quite correct, it’s more of a mix of administrative power and expertise. Its role is primarily advisory but it’s very unusual for medical professionals to go against directives.

SBU (Statens Beredning för medicinsk och social Utvärdering, “Swedish Agency for Health Technology Assessment and Assessment of Social Services”) is another agency tasked with the evaluation of social and medical services, and with meta-analysis (notably literature reviews of science publications) that can guide decision-making by other agencies (notably Socialstyrelsen). Once more, this is not a strictly administrative entity and it includes many experts.

Before 2013

Sweden has a long history of mandatory sterilisation (see Wikipedia). When it comes to trans people, the 1972 law that allowed an administrative gender marker change forced sterilisation before the change could take place. This requirement was lifted in 2013 after years of fighting and repeated denunciations by various international organisations (see Forum för Levande Historia).

The fight did not stop there: it took until 2018 for the government to agree to compensation for the trans people who were forced to get sterilised. Kammarkollegiet – which was tasked with communicating that this compensation was available and with handling applications – received 573 requests, of which 530 were approved for a 225000SEK payout each (cf Kammarkollegiet‘s final report).

This 2013 date is worth keeping in mind when an anti-trans activist presents you with a graph of the number of trans people in Sweden over the years.

Changing your gender marker in Sweden consists of changing the marker itself and changing your personal number, where parity indicates legal gender. This number is used everywhere in Swedish society, from taxes to voting, from the medical system to online banking.

The new gender marker change law

Since 2014 (see this historical summary from RFSL), a new law has been in the works to make it easier to change your gender marker. The current law groups the medical and administrative processes into one: “bottom surgeries” are not mandatory for a marker change, but a marker change is mandatory to access bottom surgery. Bottom surgery requires an administrative clearance rather than a purely medical one (via Socialstyrelsen‘s legal council, in addition to a transsexualism diagnosis), and a marker change requires medical clearance (via a diagnosis of transsexualism). This is obviously absurd and the new law aims at fully separating those two parts. The first proposals were deposited in 2018 (administrative and medical) and have been in limbo since.

As part of the lawmaking process, Socialstyrelsen was tasked with evaluating and updating the care guidelines for trans people. This update was to be published in May 2022: a first part about youths was published in February 2022 (see below), the part about adults is still not out.

The government took another look at the proposal in July 2022, right before the elections in September. Considering the result of said elections, a right-wing government backed by the far-right is being negotiated and the law is probably getting buried again.

The Swedish gender identity clinic system

In the Swedish healthcare system, the only option for a medical transition is to go through one of a few specialised clinics. A formal diagnosis of gender dysphoria is established, after which access to hormones, surgeries and a gender marker change become available if desired. RFSL, the most established LGBTQ+ non-profit in Sweden, has information about the entire process on a dedicated website about transness.

Healthcare in Sweden is the regions’ responsibility. The State does not handle healthcare: regions do, either via public entities (such as hospitals), or most often via contract-bound but private general or specialized clinics that group several doctors. Patients pay for their care up to a yearly cap, and the region pays the leftover or total to the healthcare company. Private healthcare networks exist but are marginal and often linked to heavily-criticized employer health insurance. In practice, for medical gender transition, the specialized clinics inside hospitals are the only option, there is no private alternative.

Said clinics are few and concentrated in a few towns: Karlskrona, Linköping, Lund, Stockholm, Umeå, Uppsala, Alingsås. This makes for long travel times for the many trans people who live in the countryside, and endless waiting lists. Last I heard, the wait time for a first appointment at the adult clinic in Stockholm (Anova) was 18 to 24 months. This is in blatant violation of fundamental patient rights which state that access to care, even when it’s specialized, should be possible within 90 days.

The diagnosis was historically one of “transsexualism”, which is considered outdated by most modern organisations. A transition to the ICD 11 is in progress, where the diagnosis is instead of “gender incongruence”. This transition was to be part of two other major changes: new guidelines were to be published at the end of May 2022 (as requested by the government) and the gender identity clinic system was to become highly specialized national care instead of the responsiblity of regions (announced in December 2020). It is now late 2022, neither of these changes is done and there have not been many (or any) updates on their progress. Meanwhile, waiting lists get longer, without extra funding since everything is supposed to change “soon”.

SVT’s “documentaries”

The Socialstyrelsen guidelines cannot be divorced from an increasingly hostile context towards medical transition for youths. In Sweden, that has primarily been fed by SVT, which is a public State-owned media group including several TV channels and an information website. The show “Uppdrag Granskning” (Mission Investigation) is an investigative journalism program that routinely exposes scandals about mistreatment, food quality, financial wrongdoings and so on. Starting in 2019, a team led by Carolina Jemsby started tackling the topic of trans youth.

The “documentary” series features three main episodes:

• “Tranståget och tonårsflickorna” – “The trans train and the teenage girls”, aired 2019-04-03 (Currently not available: see here);
• “Tranståget 2” – “The trans train 2”, aired 2019-10-09 (Currently not available: see here);
• “Transbarnen” – “The trans children”, aired 2021-11-24 (Currently available: see here).

In addition to those main features, other mini-episodes and follow-ups are available, but they did not get as much international attention. The structure of those episodes is familiar to anyone who studies anti-trans arguments, notably arguments against transitions for youths: incorrect statements about a lack of scientific evidence and high odds of regret, tearful testimonies of detransitioning women who are actually anti-trans activists, complicity with members of Parliament who are anti-abortion and with far-right activists, refusal of bodily autonomy for young autistic people.

“Transbarnen” is of special note. The episode focuses on the case of “Leo”, a young teenage boy who received puberty blockers… but no testosterone, resulting in over 4 years on blockers and bone density problems which were not checked. Uppdrag Granskning therefore – correctly! – reports that a major medical error was made, with dire consequences. But instead of concluding that the issue was the lack of access to hormones after a reasonable time on blockers, and the lack of bone density checkups, the show manipulates its audience with ominous music, backlight shots in empty corridors, quotes from the mother to suggest that letting youths transition is the actual problem.

Since then, “Transbarnen” has received the “Gold shovel” prize (Guldspaden) for investigative journalism. The follow-up episode “Transbarnen – Vad hände sen?” from July 2022 (“Trans children: what happened next?”) also strongly suggests that the program was a major contributor to Socialstyrelsen‘s about-face in its guidelines about puberty blockers.

Facts

Karolinska’s decision

Sweden got major international attention when Karolinska Sjukhuset – the Stockholm public hospital where the gender identity clinics for youths, KID, and adults, ANOVA, are located – announced that it was stopping hormonal treatments for trans youths. The internal letter is dated March 2021 and circulated via the activist Facebook page “Vardagsrasismen” in early May, from where it made its way across Twitter. An English translation of the document was shared on Twitter by jurist and bioethicist Florence Ashley and Karolinska finally published an official announcement a few days later.

“Transbarnen”, despite its obvious bias and many, many problems, did interview people in charge in the other five gender identity clinics in Sweden. All of them, shortly before November 2021, mention having been taken entirely by surprise and having reacted very differently to Karolinska’s decision. Some changed nothing (Umeå, Alingsås), others strongly restricted access to new treatments (Uppsala, Lund), or stopped briefly then resumed after a meeting with Socialstyrelsen (Linköping).

Karolinska’s decision is notably motivated by the Bell v. Tavistock case in the United Kingdom and the stop for hormonal treatments with the NHS that followed (see Wikipedia). That decision was from December 1st 2020 and was overturned on the 17th of September 2021: Karolinska did not account for the appeal that was ongoing at the time of the internal letter, not of the reversal some months later.

In theory, the stop in treatments is not total. The letter and the public announcement alike explain that puberty blockers can keep being used in “exceptionnal” cases, then only within the framework of a study. But no date is announced and the design of said study did not seem to have even started when the announcement was made: de facto, a stop to new treatments is suspected. One and a half year later, there are no news, notably because the study in question was apparently supposed to be linked to the national centralisation project.

The literature review by SBU mentioned in the letter, SBU 2019/427, can be found here. It is an informational document only, does not make recommendations, and quotes highly controversial studies such as the infamous “ROGD” Littman paper (read Julia Serano about that).

Socialstyrelsen’s decision

“Transbarnen – Vad hände sen?”, published in July 2022, states that the new guidelines for trans youth were supposed to be published at the end of 2021, and concluded that “expected benefits [for puberty blockers] have been evaluated to outweigh the risks” (“Förvantad nytta har bedömts överväga riskerna”, at 52:45). But this release was canceled shortly after “Transbarnen” aired: instead, the new guidelines for youths were delayed until February 2022 and had a much different conclusion.

The first relevant document is a literature review by SBU. SBU, as mentioned, is a group of experts, not just an administrative entity. This lit review, which includes several studies considered very poor by trans experts, concludes that the positive impact of hormonal treatments for trans youth is not sufficiently proven by science, that bone growth is made more difficult, that proofs for recovery after addition of hormones for the desired sex are present but lacking, and that it is not possible to evaluate the frequency at which youths refuse or stop the treatment (impossible to evaluate the number of youths who detransition?). SBU also concludes that more research is needed.

For a lit review on the same topic done by the trans community, with a very different conclusion, see the excellent TransFemScience.

With the SBU lit review as a base – and probably immense pressure from the attention Transbarnen and Leo’s tragic case were getting – Socialstyrelsen published its guidelines for hormonal treatments for trans youths, available here. Their conclusions are that due to a lack of explanation for the increase in the number of trans youths, notably assigned female at birth, the absence of proof of benefits from hormonal treatments for trans youths, the absence of proof of a lack of risks, the absence of numbers about detransitions, it is not possible to make clear recommendations and more research is needed. The recommendation is then identical to Karolinska’s decision: new treatments are only to be initiated in “exceptional” cases, and the norm will be to perform them as part of a study. Said study, as discussed above, was not even announced, and it is therefore a de facto stop apart from “exceptional” cases.

The proposed criteria for those “exceptional” cases for puberty blockers are the “Dutch protocol” ones. For Tanner III, multidisciplinary evaluation, consent by legal guardians, diagnosis of gender dysphoria according to the DSM-5, stable psychosocial situation (notably absence of neurodivergence), gender incongruence since early childhood, stable gender identity, distress after puberty starts. For Tanner IV and V, multidisciplinary evaluation, consent by legal guardians, diagnosis of gender dysphoria according to the DSM-5, stable psychosocial situation.

For “contrary” hormones, the criteria are similar, including gender incongruence since early childhood and stable gender identity including under blockers, plus a lower bound of 16 years of age and a prerequisite of social transition. It luckily seems that this exceptional status is accepted often enough to allow new treatments to start: it is false that Sweden has fully stopped hormonal transitions for youths.

These criteria are nonetheless very strict and could easily limit access to blockers for trans youths whose distress only starts at puberty. Asking for both a stable psychosocial situation and marked distress is an obvious contradiction, which can easily lead to being tossed from psych to psych to find “another explanation”, while natal puberty follows its course with often-irreversible consequences. Not doing anything is not neutral when it comes to trans youths. These guidelines treat transness as a failure state, as the last options after checking and treating everything else: it is an eliminationist line.

Summing Up: Timeline

• 2013: Mandatory sterilisations for gender marker changes finally end.
• 2014: Start of the work on the new law for gender marker changes.
• 2015: Socialstyrelsen publishes its first guidelines for the treatment of gender dysphoria: adults and youths.
• 2018: The law proposals for gender marker changes are filed.
• April 2019: SVT airs the first episode of “Tranståget”.
• September 2019: Socialstyrelsen is tasked with updating its guidelines.
• October 2019: SVT airs the second episode of “Tranståget”.
• December 2019: SBU publishes a non-prescriptive literature review about hormonal treatments for youths with gender dysphoria.
• December 2020: Bell v. Tavistock, NHS treatments stop.
• December 2020: Socialstyrelsen announces centralisation for treatment of gender dysphoria.
• March 2021: Karolinska stops new treatments for trans youths.
• September 2021: Bell v. Tavistock is overturned.
• November 2021: SVT airs “Transbarnen”.
• February 2022: SBU publishes a prescriptive lit review about hormonal treatments for youths with gender dysphoria, which informs Socialstyrelsen‘s decision.
• February 2022: Socialstyrelsen publishes its new guidelines for the treatment of gender dysphoria in youths.
• July 2022: SVT airs “Transbarnen – Vad hände sen?”.
• July 2022: The law proposal is brought back out, right before the elections.
• September 2022: SBU publishes a lit review about hormonal treatment for adults with gender dysphoria.

What now?

The new guidelines from Socialstyrelsen are still awaited, be it those for adults or a final version of those for youths. SBU published another lit review in September 2022, this time about hormonal treatments for adults, with a similar (and questionable) conclusion that there is not enough data to take a decision. It is worth noting that this lit review explicitely states that ethical and (health) economical aspects were not studied and left to Socialstyrelsen‘s own appreciation.

There have been no updates about the centralisation, and rumors are swirling that it may be canceled entirely. Without private options and with customs that are quite strict about importing medication – even legally – and some of the toughest anti-doping laws in Europe, trans people in Sweden do not have many options.

Sweden has a mere 10 million inhabitants. The trans community isn’t big, which makes international solidarity all the more vital. We can see it in how Swedish decisions are used by other countries: we are stronger together, and learning more about our neighbors is the first step.