When Donwell Mpofu started using testosterone for hormone replacement therapy last year, he began feeling comfortable in himself and his body for the first time in his life.
For years, Mpofu, 33, who lives with his wife and two children in a township to the far east of Johannesburg, would only take pictures of himself from the shoulders up. “[Transitioning], it’s been amazing,” he said, sitting on the couch next to his wife Doreen, 31.
“It’s the best feeling ever. Because for the first time I could take a picture of myself, the full picture of myself. Because usually, if I’m taking a picture, sometimes I’ll just take half or from here,” he said, gesturing to his shoulders. “You know, I was never comfortable enough. I was never comfortable with what I was seeing.”
Accessing testosterone and hormone replacement therapy has been a life and gender reaffirming experience for Mpofu. But despite having had successful top surgery at the start of November, he is anxious about his health and wellbeing.
The source of Mpofu’s anxiety is the current shortage of Pfizer’s depo-testosterone, the hormone replacement therapy many transgender people use to transition and then maintain their testosterone levels. Many use this drug for the rest of their lives.
Pfizer confirmed that increasing its supply of Covid-19 vaccines has caused a temporary shortage of several of its other medications, including depo-testosterone. Pfizer spokesperson for East and southern Africa Willis Angira said the pharmaceutical company was unable to provide alternative treatment recommendations for patients and advised them to consult their healthcare professionals.
“To respond to the dire need to vaccinate more people with our Covid-19 vaccine, we have committed to increasing its supply. This has been enabled through the efforts of our manufacturing division to increase procurement of raw materials and by prioritising our vaccine on additional fill and finish lines.
“As a result, production for a small portion of Pfizer’s portfolio will be temporarily impacted. We recognise the importance of each of our medicines to patients and physicians around the world. We are actively working to mitigate any supply interruptions, and we have ensured that there are available therapeutic alternatives to the medicines that will be impacted,” Angira said in a response to a number of questions.
In a separate communique sent to healthcare professionals in South Africa, a Pfizer representative confirmed that there was a depo-testosterone shortage in the country. The statement said the shortage would be from 31 October until the second quarter of 2022.
Shortages of testosterone and other medicines are not unusual. There was a short-term interruption to the supply of Pfizer’s depo-testosterone in 2019, when the company said it was owing to circumstances outside its control.
It’s a bigger issue
B Camminga, co-founder of the African LGBTQI+ Migration Research Network and a postdoctoral fellow at the African Centre for Migration and Society at the University of the Witwatersrand, said shortages of depo-testosterone like the current one are treated as a shocking issue when in fact they point to larger structural issues in healthcare in South Africa.
“It’s part of a broader issue of stocking out of medications in South Africa. We know that we ran out of HIV meds not so long ago,” they said.
“There are many people who are on more than one kind of medication and on more than one kind of healthcare, and the fear from one kind of stock-out leads to fear around stocking out of another medication. Often that is critical-care medication.
“Even just the rumour of a stock-out immediately leads to symptoms like a heightened sense of anxiety, followed by a kind of internal communication [within the community] about who has a little bit more or who can give a shot out of their own stock to help someone.”
Camminga said this is not only an issue affecting the trans community in South Africa, but points to a wider problem with healthcare. “Obviously this is life-threatening to trans people in a particular way, but it is also part of a larger, systemic issue.
“We often seem to want to frame it as though we haven’t been thought about, or the state doesn’t care, or we’re not included by the Department of Health. But I think this is a concerning and wider issue than something that just affects a small community.”
A communal approach
Camminga said the current shortage points to a greater need for coalitional politics. “We should be looking more broadly and saying okay, HIV organisations are experiencing stock-out issues, TB organisations are experiencing stock-out issues. We all need healthcare in a particular way, so how can we work together?
“As far as we know, this time round, the shortage is a direct outcome of Covid. And we know that Covid has seen the restructuring of funding and the prioritising of the vaccine has impacted the community more broadly. We’ve seen organisations close down across the continent and LGBT organisations are the No. 1 employer of LGBT people, so we’ve seen an increase in unemployment.”
They said the shortage also points to racial and class disparities in the transgender community, as wealthier and better-off individuals would still be able to access testosterone. “But there is a way in which a kind of pay-it-forward, or mutual aid system, should be completely possible. And I think that’s more than just saying, ‘I would like to share my shots with you this month,’” they said.
“This section of the community that can more easily afford affirming healthcare, and are paying for private healthcare, should also consider, ‘What can we do for the rest of the community?’ Because this is an extension of our community.”
A healthcare professional who works in the public-health sector said the most immediate impact of the shortage on transgender people would be psychological.
“Dysphoria and incongruence produce a lot of psychological distress, and obviously for people whose experienced gender identity is incongruent with how they’re perceived … it produces a lot of psychological distress.
“The knowledge that this crucial medication that you use to maintain the secondary sex characteristics is going to be gone for months, that also produces distress,” he said, adding that the return of certain symptoms or experiences because of a lack of testosterone in the body would be extremely traumatic.
“For a lot of transgender men, for example, menstruation is very distressing. I have one or two patients who, because they can’t access testosterone, were restricting their eating, starving themselves, because that was the only way to lessen the heaviness of menstruation or stop it completely, which is obviously very unhealthy and very damaging to your body.”
Nino Maphosa, 27, a transgender man who refers to himself as a reference book for other people transitioning and who recently appeared in an advert for Lil-lets tampons, said he had been inundated with messages from other transgender men asking if he knew where they could find testosterone.
Maphosa said he used up his last shot of testosterone at the end of September and hasn’t been able to find anything since then. “So I’ve been trying to research how to navigate this. It’s frustrating. Now my sex levels are low and you keep asking, ‘What the hell is wrong with me?’
“You fall easily into depression because you’re thinking, ‘Is all of this reversible now?’ I was able to gain more muscles, for example. You lose your hips, your fat arms you lose. So now when I don’t take testosterone, there’s the fear that all of these things will reverse,” he said.
“I can’t believe that my whole life is in that little bottle … When I don’t take it, I’m grumpy, I’m depressed, I’m snappy, I’m irritable. I can’t even look at myself. I keep fearing that I will go back. I was so excited that my moustache was growing, now I fear that it will go back.”
Maphosa said he was aware of people offering vials of testosterone on the black market and if he wasn’t able to access testosterone soon, he would consider buying it there. “I will do my research … I won’t just do a stupid thing without … speaking to my doctor. But going to the black market? I will consider it, yes.”
‘I am not me’
Thomars, a transgender man from Zimbabwe and founder of the Fruit Basket, an organisation that creates a safe space for the LGBTQIA+ community, described the shortage of testosterone as “really scary”.
“The fact that this is indefinite makes it even worse. This is the brand I know and trust and have been using for the past two years. My life and livelihood depends on me getting my shots every two weeks. Without my hormones, I can’t function fully. I am not me,” he said.
Thomars said hormone replacement therapy has helped him overcome most of the body dysmorphia he experienced throughout his life before his transition. “Just the thought of going back to that place scares and discourages me. I don’t want to go back there, I can’t go back there.”