Transgender clinic’s 25-year waiting list

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Transgender people living in Cape Town, something of an invisible community, face a range of healthcare and social struggles. Weekend Argus reporter Bethany Ao, a visiting US journalism student, lifts the veil on the issue in part one of a series. Part two will appear in Weekend Argus on Sunday. The Transgender Clinic at Groote Schuur Hospital, often referred to as the best unit of its kind in the country, is one of the only healthcare centres tailored to the needs of transgender patients. Plastic surgeons, psychiatrists, endocrinologists, social workers and gender activists work together to provide transgender people in Cape Town with excellent health care. However, the clinic’s resources are overwhelmed by demand - leading to a 25-year wait for gender surgery in the Western Cape. Sandile Ndelu, a transgender woman and activist with Gender DynamiX, said the backlog came from the “institutionalised erasure of transgender patients” in the healthcare system. “The reason why there’s such a backlog is not because there are no surgery theatres in the hospital. There are. However, the funds to book those facilities and the funds to pay people to perform those procedures are simply not there.”

The Western Cape Health Department allocates four days of the year for gender surgeries at Groote Schuur Hospital.

Surgeons can operate for eight hours on each of those days. The hospital covers gender surgeries, including breast and pelvic procedures, according to a sliding scale of income.

As private procedures cost from R450 000 to R600 000, many transgender patients have no choice but to wait.

One transgender man, who goes by the pen name Dylan Marx, is in the process of publishing a book about his experience. He said although he had to undergo more than 20 painful procedures, he would do it all again if he had to.

“I was prepared to die getting surgery. I never regretted any of it,” he said. “Every time I had an operation, I had such a positive buzz because it meant that I was getting closer to my goal.”

Marx’s first surgery at Groote Schuur in 1997 was a hysterectomy which removed the uterus, fallopian tubes and ovaries.

Over the next 18 years, he had his breasts removed and underwent a penile construction which took skin from his arm and thigh area.

His last procedure was in 2015, bringing the number of operations to just shy of 20.

“My breasts gave me a lot of anxiety and I used to bind them with tape, which hurt my posture and made it difficult to breathe,” he said. “When I woke up after my mastectomy, I reached up and touched my chest. I can’t describe the sense of psychological relief I felt in that moment.”

A plastic surgeon who works closely with transgender patients said budget cuts at the hospital were part of the reason for the long waiting list.

Over the years, he has worked to develop the most efficient system by performing multiple surgical procedures in one day. But he still battles with the time limits.

“We don’t have the services to meet the demand,” said the surgeon, who cannot be named for professional reasons.

“I always ask my patients, What makes you as a transgender person more entitled to having your operation than someone who’s had breast cancer? Or to someone who’s had half their face taken out by cancer?”

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He said the Transgender Clinic applied to the government for recognition as a quaternary level service four years ago because it is the only combined transgender clinic. Being recognised as a quaternary service, or experimental or uncommon surgical procedure, means the clinic would be funded by the national government rather than the provincial government.

Because the clinic is funded by the provincial government, patients from other parts of the country are not able to use its services. However, if its funds came from the national government, the clinic would be able to serve all South Africans.

“Once we get that recognition, we can protect our service. We can employ nurses who just do gender reassignment,” the surgeon said. “We can then open extra theatres and we can work until midnight instead of having to finish work at 4pm. And once that happens, we can then reduce our waiting list dramatically.”

Medical aids see surgery as cosmetic

One of the biggest healthcare obstacles for many transgender people is the lack of cover by medical aids. Only one medical aid, Bankmed, has paid for any surgeries.

The reason is gender procedures are categorised as “cosmetic".

Mandivavarira Mudarikwa, a Legal Resources Centre attorney, said even though most transgender patients and advocates described the surgery as reconstructive, not cosmetic, medical aids disagreed.

“There is no case-to-case determination. It’s a blanket exclusion,” she said. “We’re trying to argue that this kind of treatment is discriminatory.”

Sandile Ndelu, a transgender woman and activist with Gender DynamiX, said the costs posed a hurdle to most patients seeking hormones or gender surgery.

“It’s an institutional barrier that’s not receiving any attention,” she said. “If they are able to cover surgeries, that’s the exception. The definite rule is that medical aid schemes try to avoid paying for gender-diverse people to get gender-affirming surgery.”

Gender DynamiX is working on addressing gaps regarding transgender people in the proposed national health insurance.

“We found, when we were reading the national insurance policy, it doesnt really go deep enough in considering people whose health care has largely been made invisibilise, such as transgender people,” Ndelu said.

“For example, vulnerable groups are mentioned but transgender people don’t come up as a vulnerable group. They would mention children and HIV-positive people, but they wouldn’t mention transgender people or queer people.”

At Groote Schuur Hospital, payments for hormones and gender surgery are based on the patient’s income. Transgender patients who do not want to wait for 25 years to have the procedure done at the hospital’s transgender clinic can opt to have it done privately, but it will cost them from R450 000 to R600 000.

A plastic surgeon who works with transgender patients said the Transgender Clinic had held meetings with medical aid schemes to educate them on why the procedures should not be classified as cosmetic.

“The last thing I want to do is an operation which causes someone to lose their house because they’ve got to pay for their operation,” he said. “Bankmed paid, but that was because I knew the person who approved the operations. She phoned me and asked if this was a cosmetic operation. I said, 'No, this is probably the most reconstructive operation you can have.” And she went, 'Okay, fine, in that case I’ll approve it.”

He also said it was a good idea for transgender patients to have an emergency stash of cash for their recovery period, because they would be unable to work for a few months.

A transgender man who calls himself Dylan Marx said he struggled to pay for other expenses during the months he was recovering from his surgeries.

“Even though I paid the minimum amount for the procedures themselves, I was in a lot of pain for weeks afterwards. That was the big issue, barely being able to support myself during the months of healing.”

Ronald Addinall, a clinical social worker, sexologist and academic in UCT’s social development department, said: “Hopefully the tide is going to turn soon."

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Weekend Argus