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BHEKISISA CENTRE FOR HEALTH JOURNALISM

Out of ‘T’ and out of hope – South Africa’s trans men face year 2 of hormone stockout

Out of ‘T’ and out of hope – South Africa’s trans men face year 2 of hormone stockout
Malik Moyo, a 45-year-old trans man from Johannesburg, is using Fagron testosterone. (Photo: Dylan Bush / Bhekisisa)

A stockout of the version of testosterone (made by Pfizer) used by state facilities and nonprofits is entering its second year. It’s left transgender men in South Africa, who use the hormone as part of gender-affirming treatment, with few options. Find out what lengths they’re forced to go to get the medicine.

Something about the doctor’s room Mandla Ndlovu* was standing in didn’t feel right. It was small and hidden on the fifth floor of a run-down building in Johannesburg’s city centre. R100 got him a consultation with a doctor, whose desk was littered with medicine vials, some labelled and some not, some full and some empty.

“I’m looking for testosterone,” Ndlovu said. 

Ndlovu is a transgender man, which means he was classified as female at birth but identifies as a man. 

Many transgender men take testosterone to help them develop physical, male traits. The male hormone stimulates the development of facial hair and a deeper voice and stops menstrual cycles.

Transgender people may experience gender dysphoria – a feeling of intense body discomfort when the sex they were born with differs from the gender they identify as.  

An analysis of many studies shows that people with gender dysphoria experience mental health problems such as anxiety and depression more often than the cisgender population (people whose gender identity matches their sex at birth). However, these psychological conditions often decrease to similar levels as among cisgender people once trans people start gender-affirming medical treatment such as taking cross-sex hormones.  

Taking cross-sex hormones such as testosterone can go a long way to help people with gender dysphoria. 

Going without hormones can reverse some of the effects of hormone therapy depending on people’s individual anatomy, how long they’ve been on testosterone, and whether they’ve had any surgery. 

A trans man takes a shot of Nebido testosterone. (Photo: Dylan Bush / Bhekisisa)

People could, for instance, feel their skin becoming softer and muscles becoming less defined, and fat would move to settle around their hips and on their chests, says Anastacia Tomson, a doctor and transgender activist in Cape Town. 

It’s also likely, she says, that without testosterone, people’s menstrual cycles will return. 

The hormone treatment is often a crucial step for people considering gender-affirming surgery. Doctors may recommend that someone has hormone treatment for a year before gender-transitioning surgery, such as, in the case of trans men, bottom surgery (a procedure to construct a penis). 

But Depo-Testosterone, the cheapest version of the hormone, which is manufactured by Pfizer, has run out in South Africa three times for between one and 12 months at a time since 2018. The latest stockout started at the end of 2021 and a March statement from Pfizer (which is dated incorrectly) said its product could only be back on the shelves – around the world – somewhere between April and June 2023.

Read in Daily Maverick: “Gender-affirming surgery little more than a distant dream for the many hamstrung by high costs and long waiting lists 

The pharmaceutical company didn’t respond to requests for comment about the reason for the shortage, but the manufacturer’s spokespeople have told numerous other news outlets that it was prioritising Covid vaccines. 

The current stockout means the just more than 28,000 transgender men in South Africa have few affordable options for getting hormone treatment. 

A 10ml vial of Depo-Testosterone costs just under R650. The dose people inject depends on how long they’ve been on the treatment. Local guidelines say people should start with injecting 1ml into the buttocks once every two weeks. This means one container will be enough for 20 weeks’ treatment.  

Empty vials of Pfizer’s Depo-Testosterone, which the company is no longer producing. (Photo: Dylan Bush / Bhekisisa)

This dose is usually increased gradually until the amount of testosterone in the blood is within the range usually found in males. The maximum dose is 2ml every two weeks. In that case, one vial will last for 10 weeks. 

The other choice available in South Africa is the drug company Grünenthal’s longer-lasting Nebido injection, which costs between R2,400 and R2,700 and needs to be administered every 10 to 14 weeks. 

This is between three to four times more expensive than Depo-Testosterone, depending on the required dose. 

In South Africa, testosterone is on the essential medicines list for tertiary and district hospitals, which means the Health Department buys it for these facilities.

But there aren’t many hospitals that have programmes to provide gender-affirming care – only six government facilities nationwide, and they are located in just three of the nine provinces, according to a 2017 study. Only four of those offer endocrinology, the category in which testosterone falls. 

In addition, state facilities have to stick to buying the product of the tender that the department accepted. Pfizer’s Depo-Testosterone is the only hormone treatment for trans men on the list, says Elma de Vries, the programme coordinator for medical students at the Nelson Mandela Metropolitan University in Gqeberha. 

A few public health facilities have applied for special permission to buy Nebido for their existing patients, she explains. 

The Health Department didn’t respond to queries about whether an alternative to Pfizer’s testosterone shot will be put on the essential medicines list permanently to ensure people don’t run out of treatment because of stockouts.    

Third time unlucky

During the first stockout of Pfizer’s Depo-Testosterone in 2018, Ndlovu had a vial that lasted him throughout most of the shortage. When it began to empty, he flew to Cape Town to a pharmacy that had stock he could only get one vial at a time.

The next time the medicine ran out in 2019, it didn’t affect him because he had enough testosterone to use until stock was in again. 

A needle and syringe with a shot of Nebido testosterone drawn. (Photo: Dylan Bush / Bhekisisa)

But at the end of 2021, Pfizer’s product ran out again and so did Ndlovu’s luck. He couldn’t find the hormone anywhere. He emailed every pharmacy he could think of and even got in touch with doctors in the US to find out what it would cost to ship some here. 

“My life almost crumbled,” he says.  

Alongside physical changes, people who use testosterone and then suddenly stop also experience fatigue and brain fog, which affects their ability to think clearly or concentrate, and mood changes

Taking testosterone had been a lifeline for Ndlovu for four years – that’s why he was at the dodgy doctor’s office: he was on his last vial, with only enough for three more injections (so he had six weeks’ supply). 

Back-alley back-track: ‘I just felt unsafe’

The man seated in the cramped back-alley doctor’s room offered Ndlovu one large dose of testosterone, which he said would last much longer than his usual shots would. 

Before someone starts taking testosterone, their doctor does a blood test to find out how much they should take per shot, usually starting on 0.5ml a week and increasing to a maximum of 2ml every two weeks, De Vries says. 

Read in Daily Maverick: “A plea to parents: Listen to trans kids, not moral panics

Taking the wrong dose can lead to heart diseases, she says. 

Ndlovu decided to leave without the testosterone.

“I didn’t like it [the set-up]. It just felt unsafe,” he says as he rolls a cigarette and speaks to Bhekisisa at his home in Sandton. 

He remembers thinking: “I guess I’m going to stop taking T [testosterone].” 

Enter Fagron – an imperfect lifeline

Just before Ndlovu’s final vial ran out, a friend messaged him with a lifeline. 

Fagron, a pharmaceutical company in Cape Town, could make a customised treatment that would be similar to Depo-Testosterone by mixing the required ingredients on a case-by-case basis. This is called making up a compounded medicine.   

It was Tomson’s plan. She asked Fagron’s lead pharmacist to make up something similar to Depo-Testosterone when Pfizer announced the third stockout in 2021. 

The Fagron formulation costs R475 for a 10ml vial. Adding a delivery fee to get it shipped from Cape Town to Johannesburg, for example, would bring the total to about R600. 


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But even with this workaround, treatment might still be unaccessible to many transgender men who get their testosterone for free from the few state facilities that have it. 

Compounded medicines are not allowed to be sold in retail stores and can only be bought from the compounding pharmacy with a doctor’s prescription. Even if a state patient gets a script from their clinic, Tomson says they would still have to pay the cost of the medicine themselves, since they would have to buy the product directly from the pharmacy that compounds it.

Getting by with a little help from friends

For someone such as Malik Moyo (45), who makes a living selling handmade crafts, beanies, baskets and bracelets at flea markets in Johannesburg, the Fagron solution won’t work. 

Money has been tight since the Covid lockdowns that started early in 2020 outlawed public gatherings, including markets, for a large part of two years. 

Fortunately, Moyo could get their testosterone for free from the Wits Reproductive Health and HIV Institute (Wits RHI), a nonprofit in Johannesburg. 

Wits RHI provides gender-affirming hormone therapy as part of its HIV services. When gender-affirming hormones, counselling and hormone testing are available alongside HIV treatment and testing, research shows it significantly increases how likely people are to start antiretrovirals for HIV prevention treatment. 

But late in 2021, at the start of the third stockout, a Wits RHI doctor told Moyo the centre no longer had any of the hormone products to offer – and neither did any of the nearby government facilities. 

Mandla Ndlovu*, a transgender man living in Johannesburg. (Photo: Dylan Bush / Bhekisisa)

Moyo, who uses the non-binary pronoun “they”, stutters when recalling what the health worker told them: “Let me be honest with you, Malik. It’s either you find it [testosterone] somewhere else or you’re gonna lose what you want to achieve.” 

What the doctor meant was that without regular testosterone shots, Moyo could lose some of the male traits the hormone brings about. 

The stockout is expected to end in July 2023, according to a stock update document provided to Bhekisisa by Fezeka Dlikilili, Pfizer’s conference coordinator in Johannesburg. 

Until then, Moyo will continue to get money from their friends to cover the cost of consultation fees and a testosterone shot from a clinic in Braamfontein. 

“It’s just not an option to go back to a life before testosterone.” DM/MC

* Not his real name.

This story was produced by the Bhekisisa Centre for Health Journalism. Sign up for the newsletter.


 

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