In-depth | The incredibly long wait for gender-affirming surgery for those who can’t pay

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In South Africa, the waiting list for gender-affirming surgery is over 300 patients long. Photo: iStock
In South Africa, the waiting list for gender-affirming surgery is over 300 patients long. Photo: iStock

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Already long waiting times for gender-affirming surgery in South Africa’s public hospitals are now even longer due to the Covid-19 pandemic.

Compounding the barriers to access is the fact that gender-affirming care is mostly limited to the big metros of Gauteng, the Western Cape, KwaZulu-Natal and the Eastern Cape. Transgender people from rural areas or provinces where gender-affirming care is not available must travel long distances to access these services.

“There are huge waiting lists and a scarcity of surgical expertise in South Africa. In the private sector, it costs hundreds of thousands of rands while in the public sector waiting periods are often quoted as being north of two-and-a-half decades,” says Dr Anastacia Tomson, an author and activist focusing on queer and transgender rights.

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Dr Kevin Adams, a consultant plastic surgeon who works at Groote Schuur Hospital, confirms this saying: “The Covid-19 pandemic has meant that we have been unable to do these operations for 18 months. The waiting list for surgery is over 300 patients long. We do not decide which surgery is permitted, but the vast majority of patients want at least one operation.”

Since the service was started in 2009, the number of patients has increased exponentially from four to five new patients every three months to double that at the beginning of 2020.

Transgender day of visibility
There is no surgery for trans children in the public health system other than a few cases through Red Cross Hospital, which requires parental consent. Photo: iStock

There has been no increase in the amount of operating time as the number of individuals requiring this service has increased. There is only one surgeon performing these operations at Groote Schuur, Adams reveals.

Psychiatrist Dr Simon Pickstone-Taylor, who set up the Gender Identity Development Service (GIDS) within the division of child and adolescent psychiatry at Red Cross War Memorial Children’s Hospital, says the waiting list is generally 25 years for youth and adults.

Pickstone-Taylor says:

The state only allows limited funding for these surgeries, thus the long waiting list.

“They [transgender teenagers] are on the same list [as adults]. Their starting date is when they first consult the GIDS. None of the youth has had top surgery on the state list to date. All those who have had top [or bottom surgery] have had it with parental finance and very few with medical insurance paying."

Top surgery refers to surgery that changes the appearance of the chest, while bottom surgery refers to surgery that alters the genital area.

Trans kids at a disadvantage

The mother of one 17-year-old transgender adolescent says that unless you live in Cape Town and are lucky enough to be accepted through the Red Cross or Groote Schuur hospital programme then the only way to receive healthcare support is in the private sector.

“It is very expensive. Discovery Health has a pilot programme to support and affirm trans members, but it remains limited and the barriers to entry are financially excessive, with a lifetime limit of R200 000 in partial payment benefits,” she says.

There is no surgery for trans children in the public health system other than a few cases through Red Cross Hospital, which requires parental consent.

The mother says:

What is often the case is that trans boys may need top surgery as soon as possible and this is the sort of initial surgery that a trans young person may need to remain alive.

“Our son had top surgery at 14. All other surgeries remain an option for trans people and this is a very personal choice. We are researching surgeons in Serbia, Thailand and the US,” she revealed.

Pickstone-Taylor says parents have to pay privately for top surgery and “we work as a multidisciplinary team to support those who want surgery before 18 and have parents who [can] pay for it”.

“We have to ensure that the young person is psychologically prepared and supported enough to cope with surgery. Very few transgender male youth are lucky enough to have parents who can afford to pay for top surgery before 18 years old,” says Pickstone-Taylor, adding that parents are always needed at this assessment.

Mental health problems

The mother quoted earlier suggests that many transgender kids and teens suffer from mental health problems in part because of the limited access to gender-affirming treatment.

“This is why more than 50% of transgender children try to kill themselves. The argument we made to Discovery Health to include adolescents in their pilot programme [which was previously only for adults] included all the clinical reasons, but on a straight financial basis it is cheaper to affirm our kids than to have them in psych clinics trying to kill themselves every year,” she says.

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Discovery Health had not responded by the time of publication.

However, according to Mmatsie Mpshane, the acting general manager of stakeholder relations at the Council for Medical Schemes (CMS), the council has engaged the department of surgery at the University of Cape Town to discuss funding of gender reassignment surgery by medical schemes.

“It was established that the surgery was not [a] predominant and prevailing level of care across the South African public health sector. This implies that it is not prescribed minimum benefit level of care and funding therefore is subject to scheme rules, varying across schemes and dependent on [a] member’s benefit option or plan type. The CMS does encourage schemes to consider funding of these procedures as part of its yearly rule registration and approval process,” Mpshane told Spotlight.

Why access to gender-affirming care matters

Pickstone-Taylor says that children need social transitions, “for example when they request to change [their] ... name and pronouns, toilet change, and sports and school uniform”.

“If supported and allowed to socially transition, co-existing psychopathology invariably disappears the same day for pre-adolescent children. Equally, for adolescent children, suicidality and coexisting psychopathology disappear rapidly when allowed to take hormones to either stop puberty or cross-sex hormones. They are lifesaving in many cases,” says Pickstone-Taylor.

closeup of a young caucasian woman outdoors showin
Studies reveal that trans and gender diverse people who are not able to access gender-affirming care have a 42% to 45% suicidality rate. Photo: iStock

Chris McLachlan – the chairperson of the Professional Association for Transgender Health SA, an interdisciplinary health professional organisation working to promote the health, wellbeing and self-actualisation of trans and gender diverse people – says studies indicate that trans and gender diverse (TGD) people who are not able to access gender-affirming care have a 42% to 45% suicidality rate.

“This [number] comes significantly down once the TGD person is able to access gender-affirming healthcare.”

Often, TGD people experience minority stress, which, he explains, is the stress they experience as they navigate a hetero-cisnormative world where they are marginalised, discriminated against, not accepted and affirmed, and even become victims of violence.

“We find that more TGD people suffer from anxiety and depression, and this is often due to, or compounded by, minority stress,” says McLachlan.

Gender dysphoria

Clinical psychologist Jordan du Toit says to be trans is associated with gender dysphoria, and while this is not a mental illness, it relates to the distress a trans person feels when their body does not match their internal sense of gender.

“Gender dysphoria is associated with increased anxiety around your body and how it is seen by others; distress that your body does not match outwardly how you feel internally; and decreased pleasure in your body for things such as sex, exercise and daily living,” says Du Toit.

McLachlan says mental health risk is higher predominantly due to living in a world that is often unaccepting and also having to navigate a world that is not structured for diversity in gender and diverse gender expression.

He adds:

The TGD person needs to navigate an unwelcoming world, needs to navigate so many barriers and gatekeeping in various healthcare structures in order to live freely as the person they are, and has to deal with rejection, hate and marginalisation.


Department of health responds

Foster Mohale, spokesperson for the national department of health, notes that several structural factors influence the vulnerability of transgender people, underscored by social marginalisation, stigma and discrimination on all levels.

He says the department recognises that gender reassignment surgery is a vital component of the transition process.

“This is, however, a complex and multifaceted process that not only includes genital reconstruction surgery, but also may include facial feminisation, breast augmentation and the use of hormones to enhance the body. This is a long-term process and requires medical staff with specialised knowledge and skills to support the path and ensure optimal results,” he says.

Mohale says transgender people are one of the key populations that the department recognises as at increased risk of HIV acquisition and onward transmission. He says there are clear references to services for transgender people in the National Strategic Plan for HIV, STIs and TB 2017-2022 as well as in the National Intervention Strategy for Lesbian, Gay, Bisexual, Transgender and Intersex people.

He says the department of health is currently revising its High Transmission Area Programme, which has been renamed the Key Populations Programme and is accompanied by the Key Populations Health Implementation Plan and plans to establish something called the Key Populations Centres of Excellence.

“The centres will be established in public health facilities to ensure sensitive and relevant services for all key populations, including transgender people. We have developed a comprehensive key populations competency and sensitisation toolkit and it is being rolled out to as many public health facilities, regional training centres an health workers as possible,” he said.

This article was produced by Spotlight – health journalism in the public interest. It has been shortened. Read the original article here.


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