The Primoteston shortage’s impact on transmen
In September last year, Bayer Australia sent a letter to Australian pharmacies advising a global shortage of its product Primoteston Depot, an injectable form of the hormone testosterone. Pharmacies could expect to be out of stock up until anywhere between January and April 2019. In November, Bayer gave an update, saying the restock now had an “unknown expected time frame”.
Photos of the Bayer letter circulated quickly on Facebook, shared within transmasculine communities in private groups. The day after it surfaced, I visited the chemists and pharmacies in my suburb and called 24 pharmacies in the outer suburbs of Melbourne – all of them were already out of stock. Similarly, friends in Adelaide, Brisbane and Sydney had no luck. Asked for clarification on the “unknown expected time frame”, a Bayer representative told The Saturday Paper it has been resolved to “end of 2019”. As a non-binary transmasculine person who uses Primoteston, this is shocking news.
Bayer’s official communications around Primoteston note that it is to be prescribed only to men with hypogonadism, a condition in which the body does not produce average adult amounts of testosterone. In reality, the product is widely prescribed by doctors to transgender men and other non-binary transmasculine people who were assigned female at birth, as a form of testosterone therapy.
Within these groups, there is serious concern about the shortage and its impact, both in the short and long term. For many transgender people, hormone replacement therapy is key to agency in socialising, employment, mental health and general wellbeing, and Primoteston Depot is one of the most effective and accessible forms of testosterone hormone replacement therapy in use across Australia.
I asked Adrian, a young trans man living in Melbourne, if the shortage had had an impact on him. “When I first heard about it last year it affected me a lot,” he said. “The thought that this is happening worldwide, that I wouldn’t be able to find my hormones anywhere, was very distressing. I stocked up on [Primoteston] as quickly as I could. I ended up sharing with another friend – we’ve almost run out.”
In response to the shortage, many transmen and non-binary people have had their doctors change their prescription to Reandron, Bayer’s other injectable testosterone product. Reandron is four times the dosage of Primoteston and administered about once every three months instead of once every three weeks.
However, Reandron does not suit everyone’s physiology or gender transition decisions. Andy, an older non-binary person living in Sydney, told me: “Most people take Primoteston to start off with, because it’s a lower dose, so they can get used to their body changing a bit more slowly. I prefer it. I didn’t want to take a higher dose because I’m not aiming to look like a cis man. Because the gel forms of T are so expensive and I have sensitive skin, it wasn’t an option for me. I switched to Reandron but I did not want to.”
There has also been a flow-on effect from the spike in Reandron prescriptions – since October 2018, there have been widespread shortages of this product as well. On February 12 this year, administrators of the FTM (female-to-male) Australia Facebook page announced that Bayer Australia had advised an official out-of-stock status for Reandron, due to a global shortage of the product. It is expected to be out of stock from March 2019 for a minimum of four weeks.
Bayer Australia has not explained the global shortage of these products. Michelle D’Heureux, Bayer’s Australian communications manager, said the company is “working to rectify the out-of-stock situation”. She said patients were advised “to consult their healthcare professional about alternative testosterone replacement therapies for the treatment of male hypogonadism”. She made no reference to its use by transgender people.
While doctors have worked to provide their patients with information and advice, they have not been advised of the causes of the shortage either. Adelaide-based LGBTQI+ health specialist Dr Tonia Mezzini has been proactive in establishing lines of communication between Bayer and the transgender community, providing information in her online blog and approaching Bayer to request a public letter of information.
“I haven’t been able to get a straight answer out of the drug company either as to why this shortage has taken place,” Mezzini told me. “There was a shortage of Reandron last year that we all found out about after the shortage had started, and there wasn’t any clear information about when it was going to stop. I contacted Bayer and said, ‘We need more information on this, this is not okay, it causes anxiety for both clinicians as well as for patients, we need to manage this’.”
Global shortages are an issue with many hormone medications. Mezzini pointed to an 18-month period from 2017 when her clinic experienced a shortage of estrogen and progesterone patches.
“These are medications that are used for hormone replacement therapy for cis women around menopause, but we also use similar formulations for hormone replacement for transgender women,” Mezzini said. “[The shortage] went on for a very long time with not much explanation and no clear information as to when that was going to stop. Mostly these things are international. It’s not like you could get estrogen in some countries and couldn’t get it here – you couldn’t get it anywhere.”
Since 2014, transwomen and transfeminine non-binary people across the United States and Canada have been affected by shortages of injectable estradiol valerate – a generic estrogen drug. Asked to explain the shortage, the US Federal Drug Administration pointed the finger at drug manufacturer, Perrigo, which in turn told online news portal Mic, “We are out of market due to a supply constraint from a key supplier… Our goal is to have the product back on the market later this year.”
Mezzini attributes the lack of media attention on the effect of shortages on the transgender community to sexual health remaining a taboo topic. “When we had the shortage of estrogen patches, it was national, so it was affecting huge numbers of women, both cis and trans,” she says. “That was not in the popular press at all because we don’t talk about sexual health concerns in this country in a way that is productive, open-minded and values sexual health as an important part of people’s wellbeing. We don’t like to talk about anything below the belly button, because that’s embarrassing, and we really let people down in that way.”
In private Facebook groups, Primoteston users share their concerns about accessing the drug. Some comment that they are rationing their supplies, while others offer to share their remaining testosterone as a result of the shortage.
“This is the thing,” says Mezzini. “If people have got the access to specialists and have got the finances to sort this stuff out, there’s always a solution. But what we have to be mindful of is that not everyone is well-resourced enough to be able to access this.”
Even before the recent shortage, Primoteston was prohibitively expensive for some. In February 2018, it was removed from the Pharmaceutical Benefits Scheme at the request of Bayer Australia, without explanation. Without being subsidised, Primoteston has been available only on a private prescription ever since, at approximately five times the cost.
In response to the widespread shortage of injectable testosterone, general practitioners are advising patients to substitute these products with testosterone gels and creams. These forms of hormone replacement are far more expensive and require daily application.
For those unable to continue testosterone replacement therapy, the impact includes changes in physiology – in muscle tone, fat redistribution, menstrual cycles reactivating, facial and body hair growth slowing, energy levels dropping and sometimes changes in vocal tonality. It puts their physical sense of self on hold, with devastating consequences for mental health and wellbeing.
There are also safety issues. For many in the transgender community, access to physical gender transition is vital to feeling safe in public spaces, including workplaces. According to a 2016 study by the international diversity and inclusion festival Dive In, six out of 10 individuals from the LGBTQI+ community experienced abuse in the workplace.
For many transmasculine people their sense of self has been navigated and self-advocated over many years, involving doctors, psychologists, endocrinologists and pharmacists. In the wake of the shortage of injectable testosterone, Australia’s transgender community has responded with shock, despondency and anxiety. The hope is the problems with supply will be resolved quickly – the fear is not knowing when the next shortage will occur.
Individuals affected by the Primoteston shortage can seek psychological support from the QLife hotline 1800 184 527, from 3pm – midnight.
This article was first published in the print edition of The Saturday Paper on Mar 9, 2019 as "Body corporate". Subscribe here.