Something about the doctor’s rooms Mandla Ndlovu* was in didn’t feel right. It was hidden on the fifth floor of a run-down building in Johannesburg’s city centre.
He paid R100 for 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 he 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 something called gender dysphoria, which is 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 anxiety and depression more often than the cisgender population (people whose gender identity matches their sex at birth). But 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.
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 surgery.
People could, for instance, feel their skin becoming softer, 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 that without testosterone, people’s menstrual cycles will return.
Doctors may recommend that someone gets hormone treatment for a year before going for a gender-transitioning operation 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 manufactured by Pfizer, has run out in South Africa three times for periods of between one and 12 months at a time since 2018. The latest shortage started at the end of 2021 and a March statement from Pfizer (which is dated incorrectly) said their product could only be back on the shelves — around the world — somewhere between April and June next year.
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-19 vaccines.
The stockout means the 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.
This dosage is usually increased gradually until the amount of testosterone in someone’s blood is within the range usually found in males. The maximum dosage is 2ml every two weeks. In that case, one vial will last for 10 weeks.
The other choice available in South Africa is Nebido, made by Grünenthal, which costs from R2 400 to 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 dosage someone needs to take.
In South Africa, testosterone is listed 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 three of the nine provinces, according to a 2017 study. Only four of those offer endocrinology, the category that testosterone treatment falls under.
Plus, state facilities have to stick to buying the product of the tender that the health 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 Port Elizabeth.
She said a few public health facilities have applied for special permission to buy Nebido for their existing patients.
The health department didn’t respond to queries about whether an alternative option to Pfizer’s testosterone shot will be put on the essential medicines list permanently to ensure that clients don’t have to run out of treatment because of stockouts.
During the first shortage 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 the stock was back again.
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 he even got in touch with doctors in the United States 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, brain fog 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, a six-week supply.
Back-alley back track
The man seated in the cramped, back-alley doctor’s room offered Ndlovu one big dose of testosterone, which he said would last him for much longer than his usual shots would.
Before someone starts taking testosterone, their doctor would do a blood test to find out how much testosterone they should take per shot, usually starting them on a dosage of 0.5ml a week, which is increased to a maximum dose of 2ml every two weeks, De Vries says. Taking the wrong dose can lead to heart diseases.
Ndlovu decided to leave without the testosterone. “I didn’t like it [the setup]. It just felt unsafe.
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 sent him a message, offering him 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 order. This is called making up a compounded medicine.
The plan was that of Tomson. She asked Fagron’s lead pharmacist to make up something similar to Depo-Testosterone when Pfizer announced the third shortage in 2021.
The Fagron formulation costs R475 for a 10ml vial. Adding a delivery fee to get the medicine shipped from Cape Town to, for example, Johannesburg, would bring the total cost to about R600.
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 has it.
Compounded medicines cannot 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, as they would have to buy the product directly from the pharmacy that compounds the product.
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-19 lockdowns that started early in 2020 outlawed public gatherings, including markets, for a large part of two years.
Fortunately, though, 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.
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 going to 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 shortage 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,” they said.
*Not his real name.
This story was produced by the Bhekisisa Centre for Health Journalism. Sign up for the newsletter.
English
Arabic
Chinese (Simplified)
Dutch
French
German
Italian
Portuguese
Russian
Spanish