26 Nov 2020

High costs, long waits: Trans healthcare barriers across NZ remain

Photo by Zackary Drucker as part of Broadly's Gender Spectrum Collection. Credit: The Gender Spectrum Collection. Made available to media outlets via Creative Commons. No derivatives, no commercial use. See guidelines here: broadlygenderphotos.vice.com/guidelines
From HERE WE ARE, 8:00 am on 26 November 2020

Access to gender affirming healthcare is relatively easy in some parts of the country, while in others it's out of reach. Susan Strongman and Murphy report. 

Inconsistent access to gender affirming healthcare for trans people is discrimination, experts say.

Yet some of the services offered across New Zealand's 20 district health boards (DHBs) differ dramatically. So do the steps a person must take to access those services. 

This means that in some cases, whether or not a trans person can get the medically necessary healthcare they need through the public health system depends on what their address is.

An RNZ analysis of information from all of New Zealand's DHBs starkly illustrates what is and isn't available across the country. 

Data provided by the DHBs under the Official Information Act shows a person living within the Auckland DHB catchment, for example, cannot receive publicly funded voice therapy or breast augmentation surgery, while a person living in Counties Manukau (South Auckland) can.

Other DHBs that say they don't provide voice therapy or breast augmentation include Waitematā, Lakes, Tairāwhiti, Southern, Bay of Plenty, Whanganui and South Canterbury. 

On the other hand, DHBs in Northland, Waikato, Capital and Coast, Canterbury, West Coast and Hutt Valley do.  

The analysis also found that of New Zealand's 20 DHBs, seven require people to travel to a different catchment area to access at least one service or procedure. 

In rural areas, like the West Coast, Wairarapa and South Canterbury, most services offered are through tertiary providers, meaning patients may have to travel long distances to access them.

This is also the case for some services offered by DHBs in Northland, the Rotorua lakes area, Taranaki and by the Auckland DHB. 

Some people may be eligible for financial assistance through the health ministry's National Travel Assistance policy. But for those who aren't, the cost of travel can be another massive barrier to access. 

The 2019 Counting Ourselves survey found that the median annual income of trans and gender diverse people was around half that of the general population's - meaning the cost of multiple long trips to bigger centres may be unrealistic for many. 

RNZ's analysis also found that at least two DHBs offered none of the gender affirming healthcare asked about, other than hormone replacement therapy. Many others had a limited number of services on offer out of the seven that RNZ asked about.

For this reason, stories of trans people or their families manipulating the system to get what they need are not uncommon. One trans person told RNZ her parents lied about where they lived in order to access the gender affirming healthcare services she needed. She described the situation as seeming like "a flaw in the system". 

Almost one in ten people who had accessed gender-affirming care had moved to another part of Aotearoa because the service wasn't available where they lived, the Counting Ourselves survey found.

Some survey participants who had moved for other reasons described travelling long distances back to where they'd come from, so they could continue to visit a good GP or specialist.

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Photo: RNZ

RNZ also asked DHBs if a psychological assessment was required before gender affirming treatment could commence.

Responses show 12 of New Zealand's 20 DHBs require a psychological assessment before a person can access gender affirming healthcare, such as hormone therapy. Responses about this from two DHBs were unclear. 

Often compulsory psychological assessments require long waits, or are not publicly funded, leaving patients to foot the bill to see a private practitioner.

This was the case for Alisdair*, who paid to see a psychologist before starting hormones, rather than waiting for a free assessment through the public health system in the region where they live.

Alistair believes they were lucky though - their psychologist recognised the barriers to healthcare that trans people face, and dropped her fees accordingly. 

"She drops them from about $120 a session to anything above $60 in recognition of the fact that it's hard to get affirming healthcare. I know I just couldn't afford $120 a session, I just couldn't do that".

Alisdair also had a GP who specialised in trans healthcare. But medical practitioners aren't always so supportive.

As sexual health specialist Dr Jeannie Oliphant puts it, "there are some silos of health care around New Zealand."

"We have small teams that are just providing excellent services. But often they've just developed by stretching what they've got in response to a need and it hasn't been resourced by DHBs."

She said barriers to gender affirming healthcare create stress, and "certainly doesn't help how people feel about themselves and people's ability to get on and do what [they] want to be doing in life, such as studying or working".

Oliphant, an author of New Zealand's 2018 guidelines for gender affirming healthcare, said that requiring a psychological assessment before healthcare could be accessed wasn't necessary.

"Historically, mental health has been tricky for the transgender community, because there's been this legacy of pathologising what is normal human expression," she told RNZ in 2018. (Despite Oliphant agreeing to speak to RNZ as part of this series, her employer, the Auckland District Health Board, would not allow her to.) 

Instead of requiring a psychological assessment, the guidelines authored by Oliphant recommended an informed consent model that recognised "autonomy, te mana whakahaere, the importance of self-determination for trans people over their own health".

Oliphant, who is also the vice president of the Professional Association for Transgender Health Aotearoa (Patha), said the guidelines were based on principles developed by Māori academic Sir Mason Durie. She said they acknowledged that trans people know who they are, and what healthcare they need. 

Psychology academic and Patha president Dr Jaimie Veale agreed with Oliphant, and said the requirement of a formal diagnosis of gender dysphoria by some DHBs before gender affirming healthcare would be provided pathologised trans identities - treating them as abnormal, or as a mental illness.

Yesterday, RNZ revealed some of the barriers trans and gender diverse people across the country faced to access the care they needed. 

They included long waits, high costs, long distance travel, and a lack of knowledge among primary healthcare providers.

READ MORE: Trans healthcare a harmful 'postcode lottery'

Delays caused by these barriers could have serious consequences for people's mental and physical health.

In the 2018 guidelines, Oliphant wrote that delays to gender affirming treatment could cause or exacerbate any gender dysphoria or mental health problems. "Conversely, access to gender affirming care may reduce the mental health pressures a trans or gender diverse person is experiencing", the guidelines say. 

For her PhD thesis, psychologist Gloria Fraser's research looked into trans people's experiences of accessing healthcare. She described access across the country as a "postcode lottery". 

People she spoke to described GPs not having knowledge of gender affirming healthcare or not understanding DHB pathways, long waits for mental health assessments, lost specialist referrals and high cost private care being necessary to speed up the process.

"It can just be a process where there are barriers at every step of the journey, and months and months and months of waiting," Fraser said.

To make things more confusing, the pathway to gender affirming genital surgeries is through the Ministry of Health, rather than DHBs.

Access is through the Ministry-funded  high cost treatment pool, and surgeries are performed by the one private sector clinician in New Zealand who is qualified.

Up to 14 surgeries a year are funded, though with each person often requiring more than one surgical intervention, this cap doesn't equate to 14 people. At present, there are 244 people on the waiting list.

Referrals for genital surgeries are made by a specialist, like an endocrinologist, though in some cases a DHB will allow a GP with special expertise in transgender care to make referrals. Of course, not all areas have such a specialised primary healthcare provider. So just as with other gender affirming healthcare, ease of access varies from region to region.

Once a person has a referral, the Ministry of Health said it can take up to two years for them to be seen for a first specialist assessment. If surgery is then determined to be the best option, it can take up to two more years for them to be prepared for surgery.

Public calls for change to the way gender affirming healthcare is provided have been made since as far back as 2008, when the Human Rights Commission reported that inconsistencies between DHBs meant it was rare for trans people to know what healthcare services were available to them, or how to access those services.

Two years ago, Patha recommended DHBs should provide clear information about pathways to access gender affirming healthcare services.

Also in 2018, the government's inquiry into mental health and addiction, He Ara Oranga, noted that limited access to gender affirming healthcare services had a "negative effect on the mental health and wellbeing of people seeking to access them."

Yet RNZ's analysis shows that two years on, access to gender affirming healthcare across many DHBs remains inequitable.

Furthermore, many DHBs do not provide clear information for patients or clinicians on what services are available and how to access them.

On behalf of Patha, Oliphant said providing such information "would relieve a huge amount of distress and frustration for those people trying to access support for themselves or their whānau." 

"It is clear... there is a need for a conversation between the Ministry of Health and DHBs regarding the minimum standard of gender affirming healthcare that should be provided", Oliphant said in a similar analysis of services on the Patha website.

Patha president Dr Jaimie Veale called inequity between DHBs discriminatory.

"Patha strongly recommends that all DHBs provide clear information about pathways to access gender affirming healthcare services delivered by DHBs and primary health care", Veale said. 

"New Zealand must provide equitable and accessible gender affirming healthcare services that are evidence-based and align with international standards and community feedback."

In a statement, a Ministry of Health spokesperson said there was work underway that would contribute to improved care and support for transgender people.

The spokesperson said DHBs were responsible for assessing the health needs of their local populations and making decisions about the level and mix of services they provide to meet those needs.

*Name has been changed

**Trans and non-binary are used in this article as umbrella terms for people whose gender/gender expression is different to their sex assigned at birth, while acknowledging that these are Pākehā terms that cannot fully describe the meaning of genders that come from other languages or cultures.

This story is part of Here We Are, an RNZ series about transgender mental health. You can read, hear and view more stories at rnz.co.nz/here-we-are

Here We Are was made with the help of the Mental Health Foundation and Like Minds, Like Mine