“I had a fight with one of the counsellors regarding the pronouns that I would like to be referred by. She’s also Xhosa, so she was like: ‘Why would you do that? Like, why are you choosing such things? Why don’t you just love the way that God created you?’ I had two attempts of trying to kill myself based on this.”
So said a trans woman in one of the study’s focus group discussions, which found that discrimination and marginalisation was just one of the barriers to care experienced by transgender and gender-diverse (TGD) participants. They also struggled with issues such as affordability, accessibility and lengthy time barriers to care critical to physical and mental health.
“Today is about disseminating our findings and hearing the voices and stories that came out of our study … “Gender-Affirming Care in South Africa: Navigating Gender Identity and Healthcare”, said lead researcher, Lynn Bust, of the Desmond Tutu Health Foundation (DTHF), which sits within UCT’s Faculty of Health Sciences.
“I love this phase of research, when we look at the data and share and disseminate findings, notably with the public,” said Linda-Gail Bekker, the chief executive officer of the DTHF and professor of medicine at UCT. She is also a director of the Desmond Tutu HIV Centre at UCT and past president of the International AIDS Society.
“This full circle is so important. We start by asking the general public what needs to be done to resolve an issue, and circle back to report on what we have found.”
Why the study?
Despite the critical need for gender-affirming care and HIV services for gender-diverse people, access to care remains prohibitive and understudied.
Addressing a full lecture theatre at UCT’s Neuroscience Institute, which included members of the LGBTQ community canvassed in the study, and gender-affirming healthcare service providers and organisations, including those from UCT, Bekker likened the barriers, needs and gaps to those experienced around HIV in the 1990s. At a time when people were dying, advocates were grappling to get HIV recognised, prevented, and integrated into the healthcare system.
“As I read the paper, I am alarmed and dismayed we have such a long way to go to move the needle forward. Today we celebrate gender identity. It should be an integrated part of the healthcare delivery system in this city, region, and country towards optimised care.”
A vulnerable population
The survey looked at 150 respondents aged 18 to 65 within the Western and Eastern Cape, sourced via organisations and word of mouth, and surveyed via a structured questionnaire. The results reflected a vulnerable population, with a 66% unemployment rate and nearly 20% living in marginalised housing or homeless.
In looking at challenges faced by those who self-identify gender, there are many fences to leap towards transition: social, legal, psychological, hormonal and ultimately surgical.
Within this group, 69% of those assigned male at birth (AMAB) identified as female or transwomen, 56% of those assigned female at birth (AFAB) identified as transmen, 34% identified as gender-diverse or non-binary, and 7% were intersex.
The survey showed that within the group, 99% had socially transitioned, while only 4% had legally transitioned and 63% wished to do so.
Questions around access to gender-affirming care showed that while 85% used non-medical methods to appear as the gender with which they identify, only 3% had accessed gender-affirming surgery and 67% wished to do so.
When it comes to hormone therapy, 44% of AFAB respondents had accessed testosterone, versus 50% who wish to, and 22% of AMAB respondents had accessed oestrogen, versus 67% who want it.
“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,” said Bust.
Barriers to care
Barriers range from lack of knowledge about where to access care – 30% or less knew where to access psychosocial care, hormonal treatment or surgical intervention, to affordability issues, which presented as a significant barrier, notably around surgery, which 60% identified as a barrier.
Accessibility, particularly in rural areas, but even in an urban setting, presented as a barrier, not helped by funding cuts and the withdrawal of USAID, service disruptions, and inconsistencies in venue and providers – all of which take a toll, as does acceptability, insensitivity, and discrimination shown by service providers.
Perhaps one of the biggest barriers is time. Aside from the cost of travel, there is a time cost within the public health system which means that even an appointment for counselling can mean a full day and necessitate leave from work.
“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,” a transman told one of two focus groups that met in the Western Cape.
“Focus groups give an understanding around pathways to accessing care,” Bust said. There were 13 participants in total, and barriers to care were looked at from two sides: the health system and the individual.
Consider that on the patient/client side, there is the need to understand one’s own gender identity, perceive the need for care, access information and knowledge, navigate family, religion and cultural complexities, before hitting challenges in the public health space, which is stretched between demand and resources.
“It’s just very, very difficult. Even if like, you’re getting surgery for free, you’re going until … how old am I? I’m 25, and maybe I am going to heaven to wait another 25 years, you know, to get that. I don’t think I have that time.”
What are the solutions?
Recommendations made following the study encouraged policymakers to make gender-affirming care more affordable in terms of direct and indirect costs. This also means strengthening capacity in rural systems and prioritising and resourcing community-based organisations to disseminate information, offer counselling and engage with families and community leaders and members.
In turn, healthcare service providers were recommended to undergo sensitisation and skills training, ensure inclusive healthcare environments and integrate mental health support towards improving awareness and service navigation.
“It is important for this information to reach the community,” said Zimbini Zintwana, a graduate research fellow at UCT and discussion panellist. “The people here are the ‘translocutors’ of the experience, the people behind the numbers, underscoring the importance of this work.” Zintwana called for engaging with hard-to-reach communities and overcoming language barriers to disseminate information.
“My hope is that armed with this data and reenergised with fire, we insist on incorporating gender-affirming care into mainstream healthcare. I am proud of the LGBTQI team,” Professor Bekker said.
This article by Lisa Templeton with photos by Lerato Maduna was first published by UCT News.
