A privileged diagnosis: who gets access?


Today there was a stakeholder meeting regarding the clinical field tests for the ICD-11 proposals. During this meeting transgender activists, other clinicians, policy experts, etc. were given an opportunity to give feedback and ask questions regarding the field trial protocols that were developed in the two previous days. The meetings wasn’t all that special, as it was simply a feedback meeting, but one particular part of it poked my interest.

It issue at hand is diagnostic codes related to transgender healthcare. Currently, in the ICD-10 it reads as follows:

(F64) Gender identity disorders

(F64.0) Transsexualism

(F64.1) Dual-role transvestism

(F64.2) Gender identity disorder of childhood

These definitions have stood for over two decades; the ICD-10 was published in 1990. Considering that these thus were developed in the ’80s it isn’t all that terrible. The “F” codes related to the chapter this is located in: “Mental and Behaviourl Disorders” and it is located there in the block of “Disorders of Adult Personality and Behaviour”. But I think it is obvious why this would be an issue to transgender activists and communities; it obviously considers all transgender persons to be mentally ill (though I’ve tried calling “transgender” into work, I have yet to get sick leave approved…).

In any case, advocacy by transgender rights organisations has notably led to a unanimous resolution by the European Parliament in 2011 calling for a non-pathologising definition and placement of transgender identity by WHO. I’m sure on that point everyone (or at least, everyone whose opinion actually has any validity) is in agreement… The problem lies in what this actually would mean practically, and it is here that the drama starts.

To provide a bit of context: transgender persons have human rights, as they are human beings; they aren’t any more mentally ill or insane than the average person, the only difference being that transgender persons face the huge amount of stigma and violence that obviously has an impact on their wellbeing. On the other hand, there are specific gender-affirming medical treatments that some transgender people feel they need. It thus becomes a need to balance the pragmatic issue of access to specific health services against an opposition to a stigmatising diagnosis that can lead to severe discrimination. Quite different from the discussion regarding the depathologisation of homosexuality from the ICD-9 to the ICD-10, which had nothing to do with access to homosexuality specific services; in fact, the opposite was true, the absence of a diagnosis that homosexuality was a mental illness took away the justification for conversion therapies.

Now there are several ideas on how to strike this balance, which I will not list here; a report by GATE spells out some of this quite clearly. And the working group concerned with this part, after consulting quite a large number of people and accepting proposals from civil society to professional health organisations, decided upon “Gender Incongruence” as a new term, and moving it from the mental disorder chapter to another chapter.

Back to the stakeholders meeting. One comment was raised by a white transgender man, relating that the new definition was problematic still and that its placement should be with the “Z” codes; these codes describe “health conditions” that aren’t disorders but need medical care, e.g. abortions, pregnancy, etc. The problem being that these “Z” codes are often not reimbursed by medical insurance, or covered by public healthcare facilities. Another white transgender man, who also has a medical degree, felt that the position being transgender as not being a medical issue, and the “you need to get the treatment that you want” position isn’t feasible, that transgender identity is something one is born with, not something one decides. I’m not so sure about being born with an identity or not, that’s more of a philosophical issue, but I get both points.

However, in the context of gender-affirming health service this now becomes problematic. One of the two argued for openness and a coding that is as de-stigmatised as possible, and that such would be best regardless of the effects on access; according to him access then should be advocated for in terms of an informed consent model and in a similar way that access to abortion, etc. is advocated for. The other person argued that it is a contradiction to want to provide a free for all access to such treatment (i.e. hormones, surgeries, etc.) as it is unethical without the proper medical protocols…

Both of their arguments were problematic to me, and I specified that they are white transgender men, because privilege comes into play here. Both of them have access to care, they have the socio-economic standing to access the medical treatment they want through private healthcare, either in country (to a certain extent) or outside the country (in Thailand, Serbia, wherever), thus the impact of their arguments would not target them. Instead, a situation already exists where privileged, mostly white and middle/upper class, transgender person in South Africa have access, but all the others are simply relegated to a  public healthcare system that is extremely restrictive to their health requirements. Both their suggestions would result in making that restrictive access even worse: one by potentially endangering coverage under the new National Health Insurance that will be implemented in South Africa, the other by simply stating that transgender persons informed consent is only valid to a certain extent, and still second to the opinion of medical professionals.

Leigh Ann van der Merwe, founder of a transgender feminist organisation in the Eastern Cape, raised the issue of self medication at the end of the meeting; Nthabisen Mokoena, from Transgender and Intersex Africa, raised the issue of how access is problematic at public healthcare facilities, with transgender people being stigmatised, dismissed, and ill-treated by medical professionals. This is the issue: medical professionals rarely consider the societal context in which provision of services happen, and thus argue for things that can have a detrimental effect upon the human rights of the people they are supposed to serve; they consider their expertise to be the more valid, due to their medical background. And then there is the aspect of privilege: those transgender persons who either don’t need access, or are not dependent on those public healthcare systems that would potentially deny or restrict access, are advocating for an idealist positioning, in disregard of the effects on those who are disadvantaged socio-economically – those who are black, poor, unemployed, etc.

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