Unregulated: Bianca Minnaar tried self-medicating with a herbal remedy but now discourages trans women from using it.
Many transgender women are forced to source hormones illegally because of the numerous hurdles they face in accessing gender-affirming treatment – with potentially dire consequences for their health. In a bid to align themselves with their true gender, transgender women are resorting to taking birth control pills as a way to start the physical transition.
Juanita Venter, a doctor who works with transgender people at a public sector hospital in Cape Town, says that, because the amount of oestrogen in many contraceptives is so low, transgender women are taking up to five times the dose prescribed for cisgendered women.
Many birth control pills contain another hormone, progesterone, which is not part of standard hormone therapy for transgender women who undertake gender-affirming treatment, adds Venter, who is using a pseudonym because of her position at the state hospital.
The transgender health and advocacy organisation Gender Dynamix defines gender-affirming treatment as “medical treatment and procedures such as cross-gender hormones, gender affirming surgeries, etc., which a transgender person can choose to undertake in order to make their bodies more congruent with their gender identity”.
Venter says: “If people self-medicate they sometimes take very high doses – up to five times higher – which can be very dangerous. These dangers are heightened given [that the necessary] blood tests for people on hormone treatment are generally not done if someone self-medicates.”
A 2004 study, Association Between the Current Use of Low-Dose Oral Contraceptives and Cardiovascular Arterial Disease: A Meta-Analysis, found that “current use of low-dose oral contraceptives significantly increases the risk of both cardiac and vascular arterial events, including a significant risk of vascular arterial complications”.
A 2001 study, Oral Contraceptives and the Risk of Venous Thrombosis, found that “the risk of venous thrombosis was increased by four in users of oral contraceptives”.
The doses taken by transgender women are generally higher, placing them at greater risk of getting these life-threatening side effects.
Self-medication is often the last resort for trans women who suffer from gender dysphoria, which is a conflict between a person’s physical gender and the gender he or she identifies with.
For people suffering from gender dysphoria, aligning themselves physically with their real gender is often a matter of life or death.
Ronald Addinall is a University of Cape Town (UCT) academic and clinical social worker who is part of the team of medical professionals that runs Groote Schuur Hospital’s transgender clinic.
Addinall, who has been working with transgender people for the past 13 years, says that while not all transgender people battle with gender dysphoria or wish to go through gender-affirming treatment, the rates of depression, anxiety and suicide are disproportionately high among transgender people.
A 2008 study, Attempted Suicide Among Transgender Persons – The Influence of Gender-Based Discrimination and Victimisation, states that “the prevalence of attempted suicide was 32% … [because of] depression, a history of substance abuse treatment, a history of forced sex, gender-based discrimination and gender-based victimisation independently associated with attempted suicide, suicide prevention interventions for transgender persons are urgently needed”.
Adinall adds: “This is not because depression and anxiety are something innate to trans people but because they often find themselves in environments in which they have to battle for acceptance.”
Addinall adds that although this study was not done in South Africa, “if one factors in the levels of poverty and trauma in South Africa, this figure would more than likely be much higher locally”.
Exacerbating this battle for acceptance is the onerous and lengthy processes transgender people have to follow to get gender-affirming treatment. In addition to the written approval of two medical practitioners, those who wish to access hormone replacement therapy have to undergo sessions with psychiatrists for many months before being placed on the much-needed hormones.
Thembi Makgoba is a trans woman living in East London who, after trying to get hormone treatment through a public sector hospital, has decided that self-medication would, for now, be an easier and quicker way to help ease her daily struggle with gender dysphoria.
“There are so many hoops to go through to get on to hormones here. I was initially willing to go through the proper channels but it is such a lengthy process. The waiting list here just to get on to the hormones means I would only get on to them some time next year,” says Makgoba, who did not want to give her real name.
For those with gender dysphoria, every day lived with a body they do not feel comfortable in can be, as Makgoba describes it, “pure torture”. Facing a months-long waiting list for hormones is something that cannot be done.
Five days into her journey of self-medication – and despite being aware of the possible health implications – Makgoba says she is feeling the difference.
“I feel so much better already. The physical changes will take a while still, but just knowing that I am on my path now … makes me feel so much better.”
Remaining tight-lipped as to how she sourced her nonprescribed hormones, Makgoba says: “All I will say is that I got mine from a trans woman who gave me some of her pills. Other trans women I know get their cisgendered friends to get them a supply, but there are different ways. If you’re lucky enough, someone will just give you some pills and say, ‘Here, I understand what you’re going through’.”
Alexandra Muller, a senior researcher at the gender, health and justice research unit at UCT who has authored guidelines for primary care providers on transgender health, says: “The challenges faced by transgender people wishing to access gender-affirming care are manifold. Access to information is one key challenge for both transgender people and healthcare providers. “Very few healthcare providers in South Africa provide gender-affirming care, both in the public and private health system. Those that do are usually located in urban areas – mostly in the Western Cape and Gauteng.
“Gender-affirming hormones, unlike gender-affirming surgery, could theoretically be offered at clinics and by general practitioners in the public sector but it is only available from select providers.
“This means that transgender people who access services in the public sector will need a referral from a clinic to access these services – which in turn is often complicated because healthcare providers at local clinics are not knowledgeable about transgender health and gender-affirming care [and] might have prejudicial attitudes, and might simply not know where to refer people to.”
Zachary Shimange of Gender Dynamix says: “This is definitely a trend of trans people self-medicating. Even when people can afford private healthcare, the fact is that there aren’t many professionals around who are willing to help. They tend to call it risky or object on other grounds, maybe personal or religious beliefs. Before I went on to hormone treatment I was rejected by two doctors in Limpopo, where I come from.”
Snowy Mamba is the co-ordinator of Amaqhawe Trans Project, the Gauteng-based organisation that recently undertook a survey of the psycho-social support in the province for trans women.
Although the final results of the study are yet to be released, many participants expressed their dissatisfaction with healthcare providers for “not being sensitised and having their own opinions and moral values about us”.
One participant remarked: “There are no trans-friendly clinics [where I live] and I always do self-medication.”
Mamba says: “There is a desperate need for accessibility for gender-affirming treatment to be made easier – or we are going to see more trans women dying. We’re going to keep on losing people because of a system which doesn’t want to change and accept people.”
A system unwilling to change and accept people is made worse by having only three public sector hospitals in the country that offer full gender-affirming treatment: Chris Hani Baragwanath in Soweto, Cape Town’s Groote Schuur Hospital and Pretoria’s Steve Biko Academic Hospital.
It was after Bianca Minnaar’s attempts to get on to hormone therapy by following the proper procedures at Steve Biko Hospital that she decided to follow the self-medicating path.
“I spent at least seven months going to Steve Biko Hospital, speaking to psychiatrists. They were helpful but it is such a long process,” says Minnaar, who has battled with gender dysphoria for most of her life.
Unlike other trans women who self-medicate on oral contraceptives, Minnaar says she used a herbal remedy. Although the herbal mixture resulted in some feminising features, Minnaar now actively discourages people from using it.
“I now often have trans women approaching me, asking me about those herbs but I advise them not to take it. First, they were very, very expensive. Second, they are tricky to use because there are no set dosages.”
Venter says some herbal products do contain oestrogen-like substances but these are not regulated in the same way that conventional medicines are. She adds: “One never knows how they will interact with other drugs being used.”
Dr Gerhard Grobler, head of the Steve Biko Academic’s psychiatry department, concedes: “Trans patients often postpone accessing the healthcare service on account of feeling – or fearing – being stigmatised.”
The National Transgender Discrimination Survey, an American publication, found that 28% of those surveyed postponed medical care as a result of discrimination and 48% because they couldn’t afford it.
Leigh-Ann van der Merwe, co-ordinator of the Eastern Cape-based organisation Social, Health and Empowerment, a feminist collective of transgender and intersex women, says: “We are seeing more and more cases of our clients self-medicating, so we try to explain to them the risks and have them make informed decisions. Especially because the hormones don’t work overnight we’re seeing clients taking larger and larger doses.”
Van der Merwe, who herself started self-medicating at the age of 14, says the internationally recognised and applied Standards of Care should be adapted and standardised locally.
Put together by the World Professional Association for Transgender Health (WPATH), the Standards of Care (SOC) document aims to “promote the highest standards of health care for individuals through the articulation of Standards of Care for the health of transsexual, transgender, and gender nonconforming people.”
According to the WPATH website: “The SOC are based on the best available science and expert professional consensus. The overall goal of the SOC is to provide clinical guidance for health professionals to assist transgender, and gender nonconforming people with safe and effective pathways to achieving lasting personal comfort with their gendered selves, in order to maximise their overall health, psychological well-being, and self-fulfillment.”
Clarifying the department of health’s position on the training of healthcare professionals, spokesperson Popo Maja says South Africa may not have the expertise to deal with “very rare conditions”.
“Public health deals with health conditions that are common to the public. Medical schools are required to train health professionals that are able to respond to the common burden of disease as guided by the Word Health Organisation.”
When asked whether it would be initiating programmes aimed at educating healthcare providers about the needs of transgender people, Maja says the department would first have to carry out a situational analysis “looking into the needs of the population group referred to in order to develop expertise to deal with such emerging conditions”.
Anastacia Tomson, a trans woman and medical doctor who self-medicated after a protracted period dealing with doctors whose “egos were more important than my healthcare or wellbeing”, concurs with Van Der Merwe’s call.
After giving up hope that the doctors would “re-examine their prejudices”, Tomson took matters into her own hands.
“I decided that the best way for me to access healthcare that is not just respectful and dignified but also competent and safe, is for me to manage my own hormone therapy. From the outset I had deliberately not wanted to self-medicate because I wanted to be responsible and look after myself.
“But it became clear that putting my healthcare in the hands of incompetent service providers, who simply don’t care enough, was the more irresponsible thing to do. I was unprepared to wait, because my dysphoria was worsening and I knew I needed to be on hormones, and that the sooner that happened, the safer it would be for me.”
Tomson believes that having the Standards of Care adapted and standardised would go towards providing transgender people with better quality healthcare.
“One of the problems is that each of the clinics is doing something different. We don’t have national guidelines for health practitioners in their treatment of transgender people.
“In South Africa, we are still gatekeeping access to healthcare. The team of doctors … will look at a patient, interview them and decide whether that patient gets access to hormones or what hoops they have to jump through.”
Given the now six-month waiting list for an initial assessment by him, Addinall agrees: “As therapists, we have a role to play but seeing us shouldn’t be a requirement.”
Easing up the many obstacles transgender people have to overcome to align themselves with their true gender is, according to Addinall, “a long-term project that needs to be tackled on multiple levels – from a grassroots level right up to a policy and legislation level.”
Until then, he says, “people will do what they have to do. But they shouldn’t have to go through so much to simply be their true, authentic selves.”
Having lived through years of gender dysphoria, exacerbated by a largely ill-equipped healthcare sector, Tomson says: “We’re not asking for the stars. Just basic human rights.”
Carl Collison is the Other Foundation’s Rainbow Fellow at the Mail & Guardian
