A South African study has found that trans and gender-diverse people face structural barriers to gender-affirming care so severe that even free surgery is effectively out of reach. Research by the Desmond Tutu Health Foundation shows the problem is not individual clinicians failing individually but a healthcare architecture never designed with trans lives at its centre. Collecting the right data is not a bureaucratic nicety; it is a precondition for keeping people alive.

The woman who fought for her pronouns

I want to start with her, because she is the reason all of this matters.

A transwoman, participating in a focus group for a study run out of UCT's Desmond Tutu Health Foundation, described a fight she had with a counsellor about her pronouns. The counsellor was Xhosa, as was she, and the counsellor asked: "Why would you do that? Like, why are you choosing such things? Why don't you just love the way that God created you?"

She then said, quietly, in the record of a research study: "I had two attempts of trying to kill myself based on this."

She was not failed by healthcare in the abstract. She was failed in a specific room, by a specific person who held a specific amount of power over her access to care. And yet what the study makes clear, with patient and careful precision, is that the counsellor is not really the story. The story is a system that put that woman in that room, with no alternative, no recourse, and no design feature that protected her from what happened next.

What the numbers actually show

The study surveyed 150 respondents aged 18 to 65 in the Western and Eastern Cape. The population it found was economically precarious: 66% unemployment, nearly 20% in marginalised housing or homeless. These are not people who can afford to absorb a broken system.

Of those who identified as transwomen, 22% had accessed oestrogen. 67% wanted to. Of those who identified as transmen, 44% had accessed testosterone. 50% wanted to. Only 3% had accessed gender-affirming surgery, against 63% who wanted it. 99% had socially transitioned. 4% had legally transitioned.

Read those numbers slowly. Almost every participant had done what they could do alone, without the health system: changed their name, their presentation, the way they moved through the world. Almost none of them had been able to access the medical care they needed, despite needing it, despite wanting it, despite knowing it existed.

Lead researcher Lynn Bust said it plainly: "Almost every participant had socially transitioned versus transition facilitated by the health system, for which so little access was shown despite the large need for it."

What it costs to be invisible in a system built around you

There is something I keep returning to, thinking about this research. One of the focus group participants, a transman aged 25, said this about the prospect of accessing surgery through the public health system: "I'm going to heaven to wait another 25 years, you know, to get that. I don't think I have that time."

He did not mean he was planning to die. He meant that puberty does not pause, that the body does not hold still, that another 25 years of waiting is 25 years of a life not fully lived. He said it practically, not dramatically. That is what makes it so hard to read.

The time barrier described in this study is one I recognise from years of listening to people navigate systems like this. It is not just the waiting list. It is that even a free appointment for counselling can mean a full day off work, travel costs, queuing from before dawn, and arriving in a space where the person behind the desk may question whether you should be there at all. One participant said: "What you're not paying in actual monies at a public place, you're paying in time, because you queue for so long. And it's like literally a day that you could have spent working."

The system charges for itself. It just sends the bill in forms of currency that do not appear in its own accounts.

The architecture is the problem

Professor Linda-Gail Bekker, chief executive of the Desmond Tutu Health Foundation, drew a comparison that I think is exactly right. She likened the current situation for trans and gender-diverse people to HIV in the 1990s: a population dying while advocates fought to get recognition, prevention, and integration into mainstream care. "I am alarmed and dismayed we have such a long way to go," she said.

I feel that too. But I also want to be precise about where the alarm should be directed. It is not at the counsellor who used the wrong pronouns, though what she did caused real harm. It is at the system that trained her without cultural competence in gender identity, placed her as a gatekeeper to care without oversight, and offered the transwoman she harmed no alternative pathway and no means of complaint that would not simply delay her care further.

Good healthcare design does not rely on every individual clinician being perfectly trained and personally affirming. It builds in redundancy. It creates multiple routes to the same care. It collects data on who is not being reached, and it treats that absence as a system failure rather than a patient characteristic. It does not make surgery theoretically free and then construct a day-long ordeal around every appointment that makes that freedom meaningless.

Why the data is not optional

The update angle on this story is data, and I think it deserves more than a moment in the recommendations section. Thirty percent or fewer of participants knew where to access psychosocial care, hormonal treatment, or surgical intervention. The knowledge gap is not incidental. It is what happens when a population is not counted, not mapped, not resourced.

When trans and gender-diverse people are absent from health data, every subsequent decision, every funding argument, every training programme, every service plan is built on a picture that does not include them. The gaps in care do not appear as gaps in the data. They appear as nothing at all. And nothing generates no policy response.

Zimbini Zintwana, a graduate research fellow at UCT and one of the panel's discussants, called the study's participants "translocutors": the people behind the numbers, making the data speak. That framing matters. The 150 people who participated in this study did not just provide data. They made themselves countable in a system that had previously chosen not to count them. That takes courage, and it is also a structural intervention, because you cannot fix a system for people who do not appear in it.

What good design would look like

The study's recommendations are sensible and I want to name them, because naming them is part of making the argument. Policymakers are asked to reduce the direct and indirect costs of care, strengthen capacity in rural areas, and resource community organisations to disseminate information and support families. Healthcare providers are asked to undergo sensitisation and skills training, build inclusive environments, and integrate mental health support.

What sits underneath all of those recommendations is a single design principle: build the system around the people who need it, not around the assumption that they will work around the system. That means collecting disaggregated data on gender identity. It means measuring who is not reaching care and treating that absence as a performance metric. It means training that is not optional and not one-off. And it means recognising that every month of delay, every unnecessary barrier, every hostile appointment is not a neutral administrative outcome. It is harm, measurable and preventable.

Professor Bekker ended with this: "My hope is that armed with this data and reenergised with fire, we insist on incorporating gender-affirming care into mainstream healthcare."

I share that hope. The fire already exists in the people this study listened to. The question is whether the system will be redesigned fast enough to meet them.

If there is a news story you would like me to cover then just let Sammy know.

Dr Helen Webberley is a Gender Specialist, Medical Educator, writer, and advocate, and the founder of GenderGP. She works in advocacy, education, and public engagement, and writes about gender diversity, trans healthcare, and the lives at the centre of both.