We need to make smear tests trans and non-binary inclusive

“Okay, so, one of us has a cervix,” activist Fox Fisher says to the camera, gesturing to themselves and their co-host, fellow activist Owl Fisher. “Guess who?” asks Owl. Both are non-binary trans people, and are speaking in a video made in 2019 for the NHS about cervical screening.

The video’s message is the same as that on the NHS website: if you are a trans or non-binary person with a cervix, you should have a cervical screening — also commonly called a smear test. It involves taking a swab of cervical cells to check for certain strains of human papillomavirus (HPV) that can develop into cancer if left untreated. Since 1988, smear tests have caused a 60-70% reduction in mortality due to cervical cancer.¹

It makes perfect sense, then, that if you have a cervix, you should have access to this important preventative service. Unfortunately, the current testing system has been built on a one-size-fits-all set of assumptions pertaining to cisgender women — notably, that they are the only people who have a cervix and therefore would need access to screening.

When the system fails

Uptake of smear tests is lower among trans and non-binary people with a cervix than cisgender women,² and there are many reasons why, says speciality sexual health and gender identity doctor, and trans woman, Dr Kate Nambiar: “It comes down to structural issues that are barriers to people accessing smear tests, and also a list of educational issues. When you put those things together, it does feel like the odds are stacked against you as a trans person.

This not only excludes people with a cervix who are not female but creates assumptions that can lead to misgendering

“For example, if you’re transmasculine and you change your gender marker then you drop off the NHS screening programme — you don’t get access to what we call the ‘call and recall’ system.” Everyone who is registered as “female” with their GP is automatically included within the system, which means that they will receive a reminder letter for screening every three years.

The system also manages automatic follow-ups if you get an abnormal result and any appropriate referrals. If you’re off the system, managing this process essentially falls on you — how, and whether, individual practices offer support varies widely. There are currently no clinical recommendations for screening trans and non-binary people with a cervix.³

This not only excludes people with a cervix who are not female but creates assumptions that can lead to misgendering. If no title for a patient is given, for example, the letter will automatically default to using female titles, such as Ms.
 

Read: Discrimination in the doctor’s office – how it hurts LBT women

 
Once a cervical test has been completed, specialist registrar in gender identity Dr Alison Berner says that there are instances where test samples have been rejected by the lab because they were labelled with a male name. “It’s the fact that [the patient] has even got to the point of sending the test off, which is already a certain amount of trauma, only for that to be rejected,” she says. That patient would then need to go through the whole process again.

Fear of discrimination

Presenting smear tests as an essentially female experience also creates an exclusionary environment that can be distressing for trans and non-binary people, and even prevent them from seeking care at all. A Stonewall report found that 37% of trans people and 33% of non-binary people have avoided accessing healthcare services due to fear of being discriminated against.⁴

Quinn Rhodes, a transmasculine person with a cervix, has not yet had a smear test as he is not yet 25, which is the age when people receive their first screening invitation. But, he’s unsure whether he would go through with it, due to fear of misgendering and dysphoria.

Having access to sensitive and respectful services were found to be key motivators in getting a smear test

“I would find the whole thing dysphoric because I don’t trust the NHS to gender me correctly,” he says. “I’m not sure if smear tests are classified as ‘women’s health’ by the NHS but they are by the rest of the world, which means that between my transness and my vaginismus, going for a smear test would be voluntarily subjecting myself to pain and misgendering.”

Having access to sensitive and respectful services were found to be key motivators in getting a smear test in a 2016 survey by The Lancet of seven trans men with a cervix.⁵ While these principles are core to services offered at trans-friendly and specialist clinics across the UK, the inclusion of trans and non-binary people’s needs is not yet standardised practice.

A patient-led approach

Both Dr Nambiar and Dr Berner agree that a patient-led approach, where care is tailored around an individual person’s needs, is best. For example, Dr Berner’s research has found that trans and non-binary people would prefer to have a choice on how they get smear test reminders rather than having to receive a letter in the post.

It’s also important for practitioners to be sensitive without making assumptions. “For those who don’t work regularly with trans and non-binary people, they might assume that dysphoria is one-size-fits-all,” says Dr Berner. “Some people don’t experience dysphoria at all, and in other cases, there might be an assumption on what people might choose to call parts of their body or what they will and won’t engage with.

“And then there’s also something around people trying to be overfamiliar. People have inappropriately commented on people’s genitals and the effects of testosterone, trying to be supportive, but in fact, not being so and worsening the situation.”

“I think that there’s often been a tendency to think of the trans population being such a small group of people that it’s not worth putting enough effort into making trans health care really fair and equitable”

Dr Nambiar’s clinic in Brighton, Clinic-T, allocates more time to talking through any worries or concerns a patient might have about getting the test done. As the clinic is within a hospital setting, patients can also be given sedation or local anaesthetic gel to make the experience more comfortable. “It’s just listening to the community and building up that trust,” she says.

While there is much work to be done in achieving equitable access to smear tests, both Dr Nambiar and Dr Berner say that progress is being made. Both doctors engage in research and policy work around gender inclusion in sexual health alongside their clinical duties and say that interest from GPs and specialist services is increasing. There are also a number of trans-friendly clinics, including Clinic-T in Brighton and CliniQ in London, where trans and non-binary people can access screenings in a safe and affirming way.

However, there is still a way to go in recognising trans people’s needs within medicine, says Dr Nambiar: “I think that there’s often been a tendency to think of the trans population being such a small group of people that it’s not worth putting enough effort into making trans health care really fair and equitable. And I think that’s totally wrong.”
 
 
The following clinics offer services for trans and non-binary people:

• 56 Dean Street – London
• Clinic T (Trans clinic) – Brighton
• CliniQ – London
• My Body Back – London and Glasgow

 
 
Featured image is an illustration of the transgender flag, but flipped for artistic effect so that the stripes run vertically rather than horizontally

Page last updated February 2021