Is self-medication ethically permissible?

An examination of the ethics of self-medication in the case of transgender hormone therapy.

The ethics of self-medication is a broad topic not coverable in an essay of this size. As such, I will be focusing on a single topic that can serve as a demonstration of my theoretical
approach to the issue. My aim in doing so is to convince you of its effectiveness as an
analytical tool. The specific topic I will be addressing is the self-administration of Hormone
Replacement Therapy (HRT) by transgender and gender non-conforming (GNC) people, and
I will offer a model of mediated self-medication in which patients and clinicians work in
partnership to make well-informed decisions.

Hormone Replacement Therapy comprises a large variety of medicines taken by different
methods and with different mechanisms of effect (e.g. see Angus et al 2019). The intended
results of these medicines are the activation of the patient’s endocrine system to produce
changes in their secondary sex characteristics. These effects range greatly, and are broadly
categorizable as either masculinising or feminising. The purpose of this therapy is to allow
patients to change their bodies in ways that make them more psychologically content.

It is worth noting that many of the HRT medicines prescribed to trans and GNC patients are
readily prescribed by GPs, but only to cisgender (non-transgender) patients. A cis man
concerned with androgenic alopecia (male-patterned baldness) can be prescribed finasteride, a testosterone blocker, at a GP appointment (NHS 2021). Likewise, a cis woman
experiencing symptoms of menopause can readily be prescribed oestrogen, with some HRT
treatments now available to them over the counter (Boots, 2022). This demonstrates that the specific medical expertise of an endocrinologist is not required to estimate dosage or manage the hormone levels of a transgender patient, which is why the current protocol has GPs handle this already (NHS Nottinghamshire Area Prescribing Committee, 2022), rather that there is a disparity between the way this medicine is accessed by trans people compared with cisgender people.

I myself am a trans woman, I was presumed male at birth and during adolescence became
increasingly uncomfortable with my typically male physiology, until at the age of nineteen I
decided to change my sex. I went about this by visiting my GP, who mistakenly referred me
to a psychological evaluation according to an outdated primary care protocol (BMA 2022),
which delayed my referral to a Gender Identity Clinic by six months. This frustrating delay
was born from a generally poor understanding of trans issues and medicine among primary
care doctors and in GP practices (Bailey L, Mcneil J. 2013), and effectively allowed my GP
to block access to a treatment which it was not in their training to assess the appropriateness of (Barrett, 2016). After becoming frustrated and researching the NHS treatment pathway online, I returned to my GP with a printout of the current referral procedure, and talked them through the process. This added to intrinsic systemic delays which themselves caused more than an additional two years before I was prescribed my first dose of HRT.

Three years of waiting, knowing that there was medicine that could alleviate my suffering
which I was not permitted to obtain. The provision of HRT to trans and GNC people in the
UK is through a segregated health system of Gender Identity Clinics (GICs), a system that is
fraught with years-long waiting lists for first appointments, and further waits for receiving
any prescription. As of November 2022, this combined waiting time for the Newcastle GIC is
five years and nine months from referral by a GP (Cumbria, Northumberland, Tyne and Wear
NHS Foundation Trust, 2022).

A related case was recently brought before the High Court (Courts and Tribunals Judiciary,
2023), concerning the legality of the NHS Service Commissioning Board’s failure to treat
trans patients within the legal minimum threshold of 92% of patients being treated within 18 weeks for non-urgent care. The judgement was that in this case the NHS had not broken the law, though some claimants have publicly stated they will appeal (Good Law Project, 2023). I believe that this ongoing litigation further demonstrates the flaws with the current
commissioning model for trans healthcare, particularly given that ongoing efforts to reform
this model were cited by the NHS Service Commissioning Board as part of their defence
(Courts and Tribunals Judiciary, 2023).

My personal stake in the matter in the open, and the contemporary relevance of this matter
now established, I will apply the principle of autonomy, widely regarded as a cornerstone of
medical ethics (British Medical Association, 2020) (Estes, 2022), to examine the status quo.
In his article Bioethics and the Contours of Autonomy, bioethicist Derek Estes gives an
account of contemporary discourses on medical autonomy, highlighting that there is
significant disagreement among bioethicists as to the nature and scope of the principle, which he argues derives from a lack of consensus on its ‘conceptual boundaries’ (Estes, 2022). He concludes that the principle of autonomy is vindicated by its broad application to many facets of medical ethics, and that ‘it [is] clear that autonomy is firmly entrenched both in current bioethical theory and in current medical practice’ (Estes, 2022).

However, he also asserts that there is not yet a broadly accepted definition of a specifically
medical autonomy, instead the reliance on a more general principle of autonomy as ‘the right of persons to make free and uncoerced decisions for themselves’, which is then applied to medical ethics and practice. As Estes states, the broadness of the concept is necessary for the amount of explanatory power attributed to it, and therefore much research remains to be done in encompassing its boundaries.

This is a question that remains for the field of bioethics as a whole, and thus falls outside the scope of this essay. For my purposes here, I shall accept Estes’ above definition for the
principle of autonomy, with some clarification on what I take the meanings of ‘free’,
‘uncoerced’ and ‘for themselves’ to be in this context.

For a decision to take medication to be meaningfully free, I believe it is necessary that the
patient must be in as full a possession of salient information about the drugs as is possible. For instance, the effects and side-effects of the drug, but not necessarily the full
pharmacological mechanism by which it operates. I believe it is also necessary that the drugs in question be available for a non-onerous cost, both financial and in terms of time and energy, as difficulty or inability to afford a medicine is, in my view, a clear restraint on one’s freedom to decide whether to take it.

I base this on the description by Isaiah Berlin of a ‘freedom to’ deriving from the human
impulse to be the instrument of one’s own will, ‘a subject not an object’ (Berlin, 1969), and
contrast this positive freedom from the negative freedom or ‘freedom from’ obstruction,
described by Thomas Hobbes as a lack of ‘externall [sic] Impediments of motion’ (Hobbes,
1997). I reject this framing of freedom, as it does not account for the restriction of will in the face of threat of force, up until the moment of physical obstruction. If we accept this
definition of freedom, then one may be considered free to simply take whatever drugs one
chooses from a pharmacy, until you are arrested or imprisoned.

In this stance, I break from the argument for self-medication made by Jessica Flanigan in
Pharmaceutical Freedom. Flanigan argues that drug companies do not have an obligation to make drugs as cheaply available as possible, because they are not sufficiently different in character to companies in other industries, and therefore their function is to provide the best possible return for their shareholders (Flanigan, 2017, chr. 6).

She claims that the decision of whether or not to purchase drugs should be a freely agreed
transaction between customers and drug companies. I contend that this neo-Hobbesian use of the concept of freedom is a profoundly blinkered approach to the issue, as it takes no account of the overwhelming disparity in power between a person who needs a drug to live, and the multi-billion-dollar company that produces it. The position of the purchaser and vendor are more akin to that of a highwayman and his victim than a purchase at a market stall.

If the patient does not wish to pay to the price asked at the pharmacy counter, then their only meaningful alternatives are to shoplift or have their needs go unmet, which is tantamount to coercion. In the case of many medicines, insulin for example, going without means declining health and death, and in the case of HRT means profound ongoing misery, including cases where lack of access has contributed significantly towards suicide and suicide attempts (Litman, 2022) (Chudy, 2022).

Where the individual needs of the patients who buy these medicines are high, often their
ability to engage in collective bargaining is low. It is also important to recognise that as the
commercial relationship between patients and drug companies is mediated through third
parties including doctors and pharmacies, drug companies are effectively able to respond to the question ‘How much?’ with ‘Stand and deliver’.

This is especially true when dealing with vulnerable and maligned communities, as seen with the price increase of life-saving AIDS drug Daraprim from $13.50 to $750.00 per pill in 2015 (Walters, 2015). Given these real-world conditions, I contend that Flanigan’s argument that enforcing the affordability of drugs is not a necessary component of autonomous drug access is hogwash born of a lack of critical examination of the prevailing capitalist socio-economic framework.

As a further consideration of coercion, I will hold that the imposition of a difficult, time-consuming, annoying, and distressing diagnostic process such as that which I experienced amounts to a coercion which functioned to dissuade me from pursuing a diagnosis, and thus a prescription. During the appointments I was eventually given, I lied to the doctors about my feelings and history, so that I would fall more neatly into their diagnostic criteria for a typical case of a binary trans woman, which I had researched beforehand.

I lied because I learned from the experiences related to me by fellow trans people that it
would be faster and simpler than telling the truth, because the tragic little transsexual who
wants to wear makeup and high heels and needs the nice doctors to help her bloom into her true self is the fairytale the medical establishment has told itself about women like me, and when people positioned within structures have essentially unchecked power over whether or not you get what you need, it pays to placate them.

This is not a unique experience. In an interview on the GIC system conducted in 2021, M
said:

‘you’re always having to legitimise yourself to a healthcare professional but in their frame of what Trans people are, as opposed to like your truth or your understanding of what trans people are or of your experience and it just creates [a] self-perpetuating cycle where you’re holding Trans people in a place that is like immovable and you’re not allowing like for fuller understandings of Trans experiences because we all have to adhere to this one narrative if we’re going to get access to the things that we need access to.’

(Healthtalk, 2021)

Jaz, another interviewee, describes a GIC delaying prescribing hormones because she did not know what she wanted to do after graduating university (Healthtalk, 2021). A striking
throughline between the first-hand accounts of trans people under the UK’s GIC system is
that we are consistently subject to the whims of healthcare professionals, of whom the
overwhelming majority are cisgender, when it comes to the provision of the medicine we
want and need. This is, distressingly, not limited to mere administrative annoyance, but
includes unwelcome prying into deeply personal matters that would in no other context be
considered appropriate for a medical professional to ask about.

For example, in a series of interviews conducted with trans children and their parents, one
parent said:

‘So, when he was like, okay, so what pants are you wearing today? […] all of my safeguarding training and all that kind of stuff like just prickled of like, how dare you sit and ask my child about their underwear? Like, why is that appropriate? Why has it got anything to do with you?’

(Horton, 2022)

According to Horton’s paper, ‘a majority of interviewees described incidents of trauma,
distress and discomfort’ (Horton, 2022), which should clearly not be the case when
attempting to access healthcare. This level of scrutiny is both humiliating and upsetting to be subjected to, but in the face of experiencing further delays to obtaining a prescription, there is a significant incentive to simply tolerate this, and in order to minimise our exposure to it, tell the professionals what they want to hear. As such, I argue that the current provision model for HRT does not adequately respect the autonomy of trans patients, by the presentation of obstacles such as long waiting times, a frustrating and sometimes humiliating diagnostic process, and a pressure to lie about ourselves and our desires in order to not rock the boat and risk further delays by being deemed a non-compliant patient.

In the context of wider medical theory, the concept of patient compliance is described as a
medicocentric model of patient behaviours relating to the taking of medicine (Britten,
Maguire, 2015), defining the relationship of knowledge between patients and clinicians as a straightforward case of the medial professionals having access to knowledge about drugs, and the patients either accepting this wisdom and applying it to their benefit, or ignoring or misunderstanding it. Britten describes this as obliterating the lay knowledge of patients in service to the maintenance of a mutually detrimental hierarchical relationship between clinicians and patients (Britten, Maguire, 2015).

Later in that same paper, Maguire relates the unfolding reality that patients who are
increasingly engaged in the long-term management of conditions requiring medication are in frequent informal contact with one another through peer support groups and social media, and that through these networks, patients are developing and sharing means of better managing their treatment regimes in ways that clinicians do not have ready access to discovering. Maguire attributes this, in part, to the explicitly informal nature of these spaces, and the prevalence of ‘frank and open conversations aimed at mutual understanding’ (Britten, Maguire, 2015 p85), from which clinicians are necessarily excluded due to their position as advocates for compliance with a predetermined ‘one-size-fits-all’ process.

This indicates a wider problem with the current medical conception of compliance which has a throughline to the particular challenges present in the GIC system for the prescription of HRT to trans people. By the institutional positioning of medical knowledge as eclipsive of lay knowledge, a barrier is constructed between clinicians and a wellspring of shared practical knowledge on the use of the medicines they prescribe, which also means that useful advice and information arising from that wellspring is not fed back by clinicians to patients who may not have access to those networks.

An example from my own experience with HRT is that, in taking estradiol via transdermal
patches, the adhesive from them would remain stuck to my body after their removal. The glue necessarily being water-resistant and hardy, I was scrubbing my skin raw getting the residue off myself. I mentioned this to the GIC at a follow-up appointment, and was told to try a milder soap. I subsequently mentioned this to a trans friend, who immediately advised me that baby oil applied with a cotton ball near-instantly breaks down the adhesive, whilst not harming the skin. This tip works very well, and I have been using it ever since.

Which brings me to the matter of defining ‘for themselves’. Unlike in some other scenarios,
such as self-medication involving antibiotics, HRT drugs only medically impact the person
taking them (Delgado-Ruiz, Swanson, Romanos, 2019). There is a strong intuitive grounding
to the idea that our bodies are our own to do with as we see fit, which includes choices that impact our health, such as whether or not to drink alcohol, as well as decisions that have social ramifications on those we associate with, such as getting a penis tattooed on one’s face or wearing a tie to a barbeque. There are few choices about how we socially present ourselves that do not in some way have an impact on how we, and by consequence those who we associate with, are seen in turn.

A contrasting argument is brought up by a community known as ‘trans widows’, a subset of
the spouses and ex-spouses of trans women who have come out (realised and made known
that they are trans) since their relationships began (Trans Widows Voices, 2022). The
organisation ‘Trans Widows Voices’ (TWV) recently gave evidence to a Parliamentary
Select Committee on the subject of potential reforms to the 2004 Gender Recognition Act
(Women and Equalities Select Committee, 2021). In this written evidence, TWV argued that
the spousal veto, which functions to prevent a legal change in gender for a trans person who is married or in a civil partnership if their spouse does not sign a statutory declaration (Kirk-Robinson, 2014), is an ‘essential safeguard for Trans Widows [sic]’ from ‘being trapped, in legally same sex marriages that they did not sign up to.’ (Women and Equalities Select
Committee, 2021).

However, this narrative is challenged both by the legality of divorce and the application for a Gender Recognition Certificate being sufficient legal grounds for non-contestable divorce
(Phillips, 2018). To analogise, if I were to wear a tie to a barbeque, this would be regarded by many as a social faux pas, and my date might not want to be seen with me. It is arguable that I had made the decision ‘for my date’ to be seen as the sort of person who would date
someone who wears a tie to a barbeque, but it is far less compelling than the argument that my date has been presented with the free and uncoerced choice whether or not to associate with me at that social event. So it is with someone who is socially associated with a person taking HRT, once visible effects of the medication begin to occur.

One theoretical foundation used by TWV’s and other ‘trans widows’ stances (Bartosch,
2021) on trans identities is the widely criticised (Serano, 2020) Blanchard typology, which
divides trans women into the categories of ‘homosexual transsexuals’ and ‘autogynephiles’
(Trans Widows Voices, 2022). The ‘homosexual transsexual’ archetype is defined by
exclusive sexual interest in men and stereotypically feminine mannerisms and interests from a young age, whereas the ‘autogynephile’ archetype is defined as a paraphilic sexual
fascination with being seen as a woman, born from a misdirected heterosexuality, ‘The fusion of the longing to have a woman and the longing to be a woman – the confounding of desire and envy’ (Blanchard, 2005).

The rhetoric employed by TWV and similar groups is contingent upon their trans female
spouses and ex-spouses falling into this latter category, and therefore that ‘trans widows’ are, through their association with their transitioning spouses and ex-spouses, unwilling parties in a fetishistic sexual exercise (Bartosch, 2021). Were this the case, it would provide a compelling counter to the position that the decision to transition medically (i.e., take HRT) is one that falls under the ‘for themselves’ provision of our definition of an autonomous decision, instead rendering it a coercive action against other(s) (Dreger, 2015).

However, as I indicated above, the Blanchard typography is overwhelmingly rejected by trans people and academics, including myself. In flattening the lives of trans women into either a ‘homosexual’ or ‘misdirected heterosexual’ archetype, the theory fails to provide a
functioning explanation of the existence of bisexual trans women. This hole was addressed by Blanchard by the conceptualisation of bisexuality in trans women as ‘those cases in which the autogynephilic disorder gives rise to some secondary erotic interest in males’ (Blanchard, 1989), where the desire to have sex with men is derived from ‘the thought of being a female, which is symbolized in the fantasy of being penetrated by a man’ (Blanchard, 1989).

This has been characterised by transfeminist author Julia Serano as ‘a concept invented out of thin air’ (Serano 2020 [1]), and she has heavily criticised proponents of Blanchard’s typology for asserting that apparent exceptions to the typology presented by research data are as a result of ‘autogynephile’ research subjects misreporting their sexual orientation (Serano 2010)

The assertion that counter-narratives presented by the group under scrutiny are lies (Bailey 2003), combined with the flippancy with which the label ‘autogynephile’ is applied, with
making ‘frequent allusions to sports and automobiles’ being sufficient grounds to place a
trans woman in this category (Bailey, 2003, p178), renders Blanchard’s typology
unfalsifiable, with the concept of autogynephilia ballooning to contain all trans women who do not sufficiently conform to a fundamentally patriarchal model that rigidly defines our existence in terms of gendered stereotypes, including our sexual desirability (Bailey 2003, p193).

Given that the theoretical basis for the characterisation of medical transition as the fulfilment of a sexual fetish is unfalsifiable, and thus scientifically invalid (Serano 2010), I believe it makes more sense to regard transgender identity as simply another facet of human existence, and that the identity claims made by trans people are the sincere expression of our desire to be and be seen as who and what we wish. Regardless of the experienced impact of a partner’s decision to transition, as with other developing incompatibilities, it is mitigable simply by terminating the association with the person in question. It is the demand that partners remain forever codified by the identity expressed at the outset of a relationship which is coercive.

The concept of autonomy thus examined, I hold that for transgender and GNC people, the
choice to take HRT is not currently autonomous, under the UK’s GIC model. Prohibitive
difficulty in obtaining the necessary prescription represents an unfree choice, and the
necessity of contorting our experiences to fit an institutional narrative is a coercion, thereby failing two of our three criteria for an autonomous decision.

Now that I have laid out why I believe the current model is unfit for purpose, I will state my
reasons for believing that a mediated model of self-medication is an appropriate remedy.
Continuing to build from the working definition of autonomy given by Estes, I will now
outline an informed consent model of self-medication which I believe better conforms to it
than the status quo.

In this model, a patient would go to their GP and request a prescription, at which point the
doctor would be obliged to inform the patient of the effects of HRT, instruct them in their
administration, offer a schedule of blood tests to monitor hormone levels, signpost a relevant social support service, and offer an appropriate dosage. The patient would have the right to request any dose that falls within reasonable bounds, which the doctor would be obliged to prescribe. The patient would then go to a pharmacy and obtain their drugs.

This proposed process better fits our definition of a free and uncoerced decision, and similar systems of mediated self-medication have met success internationally (Metastasio A, Negri A, Martinotti G, Corazza O. 2018). The GP’s obligation to prescribe a reasonable dose obviates their position as a gatekeeper, transforming the doctor-patient relationship from a granting or refusal of a service into a mutual pursuit of the best health outcome for the patient, whilst putting the patient in the ‘driver’s seat’ regarding their health. This then
becomes a mediated self-medication where expert advice is made amenable to individual
choice.

My purpose in arguing this has been to demonstrate that by rigorously applying a coherent
model of autonomy to the bioethical enquiry into the issue of self-medication, and by
increasing the profile of patient voices in the discourse, it is possible to uncover concrete
critiques of existing prescription regimes and derive alternative policy agendas that function on more liberatory paradigms.

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