Falling through the cracks: How SA’s healthcare system is failing the LGBTQI community

The theme for World Aids Day 2022 is “Equalise”, and yet a Health and Advocacy Day for the lesbian, gay, bisexual, transgender, queer and intersex (LGBTQI) community showed that while good work is being done, everything from prejudice and paperwork to lack of education and expertise is blocking access to specialised healthcare and potentially endangering the health of South Africa’s gender-diverse community.

Held on 26 November, ahead of World Aids Day on 1 December, in a packed conference room above the bustle of Woodstock’s Old Biscuit Mill Saturday market, the day pulled together LGBTQI health service providers, researchers, organisations and community members to shine a light on the healthcare needs of Cape Town’s LGBTQI community.

What it showed is that while there are pools of excellence, such as Groote Schuur Hospital’s Transgender Clinic, a leading light on the continent, access to healthcare, and even sound advice that is specifically geared to the multi-faceted needs across the spectrum of the LGBTQI community, is hugely under resourced and lacking. Indeed, even the Transgender Clinic has a waiting list of over two decades for transgender surgery.

“There is a need for safe spaces for individuals around the world who are at risk of violence and even death because of who they love, and how they identify,” said Professor Linda-Gail Bekker, the director of the Desmond Tutu HIV Centre at the Institute of Infectious Disease and Molecular Medicine at the University of Cape Town (UCT), and the chief executive officer of the Desmond Tutu Health Foundation, in an opening address.

The Aids Day call to ‘Equalise’ is a call to action

Professor Bekker identified the theme “Equalise” as a call to action to the concept of leaving no one behind and paying attention to providing optimised care for those currently marginalised.

“Sexual orientation and gender identity show that the human population is wonderfully diverse. I am channelling the Arch (the late Archbishop Emeritus Desmond Tutu) when he spoke of the Rainbow Nation, to extend it. This is who we are. I am proud that we carry his legacy forward,” she said.

“Everyone has the right to the best interventions and health services.”

“Everyone has the right to the best interventions and health services.”

While Bekker was pleased to acknowledge progress into differentiated healthcare services, this was a call towards tailored, integrated, compassionate care that covers the gamut from reproductive care to mental health and disease support.

“We are on the journey, work has gone on, but we have not arrived. Cape Town is a city that embraces work around stigma, attitudes, discrimination and optimal care. I am proud that HIV has led the way into tailored differential care. We must keep the conversation going.”

Overcoming prejudice

The doors of access to healthcare differ, depending on who you are, particularly if you are part of the LGBTQI community or from the wrong side of the socio-economic divide, was the message of

Greyson Thela, an advocate for equal access rights and safe communities.

“It is important when grappling with inclusivity in healthcare services and intersexuality to factor in layers of combined stigma which block accessibility.”

The initial barrier to specialised services is the disconnect between service providers and diverse gender and sexual identities, particularly for men.

The first question when walking into a clinic or ward is gender identity based on gender at birth – male or female. So, when, for example, a transgender man seeks gynaecological care or family planning advice, their gender is not presented as an option.

Factor in a hierarchy of needs that favour cisgender patients, medical aids that determine access to gender fluid healthcare, potential bigotry in healthcare workers and ignorance when it comes to treatment and advice, and the result can be a reluctance to seek medical advice, which interrupts the treatment of HIV and sexually transmitted disease.

“Difficulty accessing healthcare services and a lack of policing of transphobia and homophobia contribute to gender dysphoria, mental health issues and ultimately impacts the treatment and longevity of people already disadvantaged economically,” Thela said.

Particularly vulnerable and in need of protection are those with high-risk sexual activity, especially when challenged economically. How does one seek sound safe-sex advice and solutions across a wide range of gender identities and their partners? How does an LGBTQI sex worker negotiate safe sex across a power imbalance?

And how do we help our youth?

When many of us were growing up there were essentially two options when it came to gender identity: male and female.

Trans boys or girls were considered incredibly rare (one in 10 000), and inadequate parenting was typically blamed, said Dr Simon Pickstone-Taylor, the founder of the Gender Identity Development Service within UCT’s Division of Child and Adolescent Psychiatry.

“I now get three referrals a week,” says Dr Pickstone-Taylor. Fuelled by greater accessibility to information online and media, children are coming forward on gender identity.

One in 200 youths are on a transgender spectrum, and 80% of these are on the autistic spectrum.

And before parents look to themselves or TikTok to explain the trend, Pickstone-Taylor says the reasons are biological; awareness is simply helping children.

Studies have shown that while major parts of the cis male and female brains are alike, there were certain parts statistically, scientifically different – female patterned or male patterned. So, a trans woman’s brain may follow a cisgendered woman’s pattern, or part thereof.

“That is huge, with the best science in the world, when someone says their body feels wrong, they think they are a woman or a man, it needs to be taken seriously. It is an important human right.”

“It is time to stop gas-lighting youngsters.”

While most people are born with a body that feels right, transgender young people feel their body is not in line with who they are. “Gender identity is in your head,” said Pickstone-Taylor.

Even this is not cut and dried. There is a spectrum from 51% to 100% across which one might be gender queer or non-binary.

“It is time to stop gas-lighting youngsters,” he said. This is not a phase to be grown out of. Transgender youngsters need to be heard and taken seriously. Faced with unhappiness, generally expressed as headaches or tummy aches, through feeling uncomfortable in a binary uniform to bullying by peers, can lead to full-blown anxiety and depression.

“By 18, 50% will have tried to kill themselves,” said Pickstone-Taylor. “And yet the minute they are heard and go on hormone blockers which put puberty on ice, that risk goes away.”

He likens identifying as the opposite sex in your mind while growing up to the distress a man might feel should he start sprouting breasts or a woman if she grew a beard. Being told you will grow out of the horror is not going to help. A solid solution does. And the younger someone starts hormone treatment, the better the outcome for them in terms of looking and sounding appropriate to the gender they feel.

Educating ourselves and healthcare professionals

“Being educated is key, and transgender youth are ready to educate us,” said Pickstone-Taylor.

“In medicine, we must not only look at the risks of doing something, but at the risks of not doing something. Listen to your patients’ needs.”

And how does this play out on the ground? Privileged people may be able to access care, but what about the vast majority of people, particularly impoverished youth, trying to access care in the public health system?

“It is a collective effort,” said Savuka Matyila, a gender non-conforming human rights activist. “Be aware of shortfalls in the health space, whether schools, clinics, hospitals … There needs to be discussions in healthcare: how do we as doctors and nurses open the conversation to gender diversity, and trans-care?”

Thela added: “We need to start at ground. Doctors, nurses and healthcare providers need to study sexual identity so that they come into healthcare services ready. The standard of healthcare is vital to longevity.

“Inclusion cannot be expected in a whisper. Equality is providing different things equally.”