Trans men and non-binary people are missing cervical screenings because some health software systems are not set up to notify them.
Instead, the systems notify a 'female'.
Josh McNally says he was no longer recalled for cervical screenings when he changed his gender marker in the health system. Photo: RNZ / Cole Eastham-Farrelly
The National Cervical Screening Programme checks reduce the risk of developing cervical cancer and is available to people with a cervix, aged between 25 and 69.
In most cases, people with a cervix are recommended to test every three years.
However, trans man Josh McNally - who is in his 30s - "never got a recall for any gynecological services" once he changed his gender marker in the health system about eight years ago.
"I didn't realise that when you change your gender marker that you'll actually miss out on the healthcare that you require... I was never told that by changing the gender marker I would not get the information."
McNally ultimately had a hysterectomy - removing his uterus, ovaries, and fallopian tubes - but that was not until he was about four years into transitioning, meaning he should have had at least one recall in that time.
Not being recalled for screening was a "double-edged sword", he said.
On one hand, it was concerning to not receive reminders to get checked for cervical cancer but McNally also found smears to be traumatising, saying, "I'm not connected with that part of my body".
Trans people were learning about missed screenings from conversations with other gender-diverse people instead of from doctors, which was "quite horrible" and "disappointing", McNally said.
He wanted "complete transparency" within the health system to ensure care was available and aligned appropriately for people.
'It's a massive issue of health equity'
Moira Clunie is the project lead at rainbow organisation Te Ngākau Kahukura and said "it's a massive issue of health equity" that meant there was a group of people who could be subject to poorer health outcomes.
They also pointed out there was a myriad of other issues gender diverse people faced when navigating the health system, including trans women being excluded from both breast cancer screening recalls as well as prostate exams.
Clunie said computer systems needed to be updated to account for trans, non-binary and intersex people, and doctors could not rely on systems to predict the needs of a patient based on what sex or gender was recorded for them.
In the meantime, there needed to be guidance for health providers about how to make sure trans people were not being disadvantaged, Clunie said.
More broadly, they wanted to see health providers better trained, with support and clinical guidance, to work with people "who have bodies that don't quite look like what they expect".
This also included having information that was relevant and accessible to patients, they said. Ministry of Health screening pamphlets for patients talk about "what wāhine need to know" and that the national programme is checked "to help all women get the best" treatment.
'Help all women': current cervical screening pamphlets are targeted at "women" but Health New Zealand says it's developing resources for LGBTQI+ communities. Photo: RNZ / Samuel Rillstone
Clunie said this did not necessarily mean overhauling current information, but making other forms available.
In a statement, a Te Whatu Ora Health New Zealand spokesperson said training and education was being developed for health professionals, "as well as resources to meet the needs of the LGBTQI+ communities".
"Work is under way to help further reduce barriers to cervical screening."
Manual override: when software doesn't talk to the patient
Invitations and recalls for cervical screening are managed by individual primary health care providers.
Hobsonville Family Doctors general practitioner Dr Torrance Merkle said a lot of the problem came down to health providers using different software, which dealt with gender and sex identification differently.
Merkle also explained there were other "complexities" for these systems to communicate with the broader national health system.
He said any issues meant trying to manually override the system "as much as we can". That meant every couple of years, in person, going through what a patient needed and what might have been missed.
"You just have to be careful and make sure that things are being done: systems are not as reliable."
Another general practitioner, Dr Zoe Suttor, uses software that allows for patient recalls based on sex assigned at birth.
She said having to manually work through systems meant patients could slip through the cracks and highlighted that software designs made it "harder to provide equitable healthcare to a group who already have poorer health outcomes".
Suttor also said a manual override of the system was not necessarily a permanent fix, with recall systems possibly reverting to being incorrect if the patient moved health provider and gender markers relied on being manually changed again.
"I think it is much more common for it [gender markers] to be entered incorrectly and done poorly".
Changing from smear to swab
From July 2023, the National Cervical Screening Programme will shift to a human papillomavirus (HPV) test as the primary screening method, which will include the option of swab self-testing.
As a result, screening would change from a three-yearly to five-yearly interval.
Dr Torrance Merkle said it would "be a really helpful change" because the current method, which involved opening the vagina with a speculum and then using a brush to collect a sample of cells from the surface of the cervix, was "quite invasive".
Moira Clunie said the changes provided "real opportunities" to work with communities that might not have accessed, or delayed, cervical screening.
However, they pointed out that while it would reduce barriers to cervical screening, a future change in test did not solve the software problems at hand.
The Health New Zealand spokesperson said a campaign around the screening change was still being developed and would include "consideration of ways to support gender-diverse people to access screening services".
The spokesperson also said systems being developed under the new national health entity would support gender diversity and self-identification of gender, as well as allowing people to be notified for cervical screening even if they were not enrolled in a general practice.