By Theo Schall

 

 

March 31 is the International Trans Day of Visibility, so let’s talk about the issue most pertinent to bioethical inquiry: transgender* access to healthcare.

 

The debate over whether there’s a right to transgender-specific healthcare has played out not across a national stage, but in a number of smaller venues. While just ten years ago, it was highly unusual for a transgender person to have insurance coverage for medical transition**, it’s increasingly common. Large corporations eager to win high scores on the Human Right Campaign’s Corporate Equality Index have changed their coverage to avoid discriminating on the basis of gender identity. Medicare no longer bans gender realignment surgery. Elite universities, either in competition for a small number of highly desirable candidates or in a race to appear most progressive, have rushed to cover transgender care. And a number of state Medicaid programs now cover transition-related expenses as “medically necessary” costs.

 

There are, of course, critics of these new measures. Arguments against transgender healthcare run the gamut from unmixed loathing of a marginalized group to nuanced concern over public health expenditures. Most of us probably find ourselves somewhere in the middle, unsure of the specifics, but wanting trans people to have the same level of care afforded to other Americans. If we believe that medical transition is purely a choice, we probably see it as elective and cosmetic, and therefore something that individual patients should pay for. If we see medical transition as medically necessary, we probably consider it an expense like any other medically necessary expense. That distinction between “a choice” and “a necessity” usually hinges on how we understand gender identity itself – are people who they say they are or is sex no more complicated than a clear binary?

 

But it’s not actually important to answer the big looming question about the innateness of gender before we make decisions about transgender healthcare. There are plenty of medical diagnoses with full treatment arsenals whose underlying causes we still don’t understand. Scientists don’t know what causes a migraine aura, but neurologists can nonetheless diagnose and treat a patient who experiences one according to currently accepted best practices. They can also attest to the suffering of migraineurs. It isn’t a matter of debate whether transgender people suffer, too – after all, it’s why they end up in doctor’s offices, seeking treatment. Whatever the cause, these are patients whose caregivers want to be able to help them. If we take the increasingly common position that transgender adults have a right to appropriate healthcare similar to that of cisgender adults, the question instead becomes: what is the scientifically based current standard of care?

 

The World Professional Association for Transgender Health (WPATH) is currently on the seventh version of its Standards of Care (SoC) for the Health of Transsexual, Transgender, and Gender Nonconforming People. The SoC is a non-binding protocol outlining clinical guidelines for access to transgender healthcare. While it’s written for health professionals, it’s intended to be easily understood by patients and families. The SoC unambiguously comes down on the side of transgender care being non-cosmetic: “medical treatment options […] are effective in alleviating gender dysphoria and are medically necessary for many people.” Despite (or perhaps evidenced by) its many revisions, the SoC remains controversial. While it has the support of the American Medical Association and the American Psychological Association, trans advocates argue that the SoC’s strict guidelines have long functioned as a gatekeeping device rather than a model for equitable health access. It’s likely that revisions will continue indefinitely as the science improves, the social milieu evolves, and research better captures the efficacy of the protocol.

 

And what is the scientific basis for the SoC? Well, it’s not all that robust***. For an example, here’s a relatively recent meta-analysis, with summary, on two interventions covered by the SoC:

 

Murad, M. H., Elamin, M. B., Garcia, M. Z., Mullan, R. J., Murad, A., Erwin, P. J., & Montori, V. M. (2009). Hormonal therapy and sex reassignment: a systematic review and meta-analysis of quality of life and psychosocial outcomes. Clinical Endocrinology, 72(2), 214-231.

  • “Very low quality evidence suggests that sex reassignment that includes hormonal interventions in individuals with GID likely improves gender dysphoria, psychological functioning and comorbidities, sexual function and overall quality of life.”

 

“Low quality evidence” is a judgment of the study designs used to gather the available data, not the results. The gold standard for medical and social research is the randomized controlled trial, where study participants are randomly assigned to receive an intervention or to act as a control. An ideal study would be randomized, controlled, and have a large number of participants for statistical validity/generalizability. There are a number of reasons for the dearth of randomized controlled trials. Historically, there hasn’t been a lot of funding for trans health. There also aren’t all that many trans people in any given place, so statistically powerful research would require a wide geographic reach (and thus be more expensive). And there are ethical problems with true randomization. We can’t ask non-trans (or “cisgender”) people to get genital surgery just for comparison’s sake. It’s similarly difficult to ask gender dysphoric people, who suffer in contemporary social conditions, to wait on transition just so they can act as a control group. We can use cisgender people as controls instead, but this can have an impact on the specificity of research results.

 

Instead, the literature consists primarily of small observational trials with a fairly small number of participants each. In situations like these, scientists aggregate the data from those small trials into a meta-analysis so they can draw larger conclusions than would otherwise be possible. It’s not a perfect system, though – there’s a real risk of magnifying underlying problems. For example, if the small studies oversample trans women and undersample trans men (which tends to be the case), the meta-analysis may be similarly less generalizable to trans men. The absence of a control means it’s hard to tell if or to what extent the therapies are responsible for the outcomes. This doesn’t mean hormones, surgery, etc., aren’t good therapies – it just means the proof is weak.

 

But the absence of scientific proof is not unique to transgender medical care; rather, it characterizes our entire medical system. “Evidence-based medicine” only gained traction in the 1990’s. Randomized controlled trials are quite expensive to run, so not every trial uses the gold standard. The mechanisms we use to oversee the quality of research (journal-based peer review) are imperfect – studies with incrementally novel results tend to get published, whereas those that repeat results or contradict widely held views are often suppressed. We have a body of scientific literature that imperfectly captures even the research questions that have been systematically studied. The evidence base for the vast majority of American medical interventions is weak.

 

So an argument against trans healthcare protocols that rests on the paltriness of the evidence base is myopic at best. If there was a lot of anecdotal evidence that suggested the extant literature was wrong, I’d be more inclined to grant weight to the opposition argument. But since anecdotal evidence  seems to align with the weak scientific evidence rather than refute it, it appears that the current standard of care simply lacks robust evidence. This situation is likely to change with increased interest in trans healthcare and research.

 

Scientifically valid research on trans people and trans health is still in the early stages. In response to this lack of research, trans advocacy organizations have taken the task on themselves. Findings from the first national survey of trans people, the National Transgender Discrimination Survey, were published only a few years ago, with a follow-up planned for this summer. As even this basic research is still in its infancy, it seems likely that nationally representative health research is still a few years out. Given the small number and geographic distribution of trans people, the era of Big Data represents a great opportunity to study this population and establish the best possible treatment protocols.

 

 

 


 

*Here, I use the words “transgender” and “trans” interchangeably to refer to the umbrella of identities sometimes also called “trans*,” inclusive of transsexual and gender-nonconforming people. I think this is the most accessible, most respectful compromise, though I respect that others will disagree.

 

**The WPATH SoC loosely defines “medical transition” as care that “may include primary care, gynecologic and urologic care, reproductive options, voice and communication therapy, mental health services (e.g., assessment, counseling, psychotherapy), and hormonal and surgical treatments.”

 

***But don’t take my word for it. I’ve included an annotated bibliography, below, including most studies that WPATH uses to support the SoC (excluding those that aren’t specifically about treatment or protocol efficacy), below.

 

 


 

Ainsworth, T. A., & Spiegel, J. H.. (2010). Quality of life of individuals with and without facial feminization surgery or gender reassignment surgery. Quality of Life Research, 19(7), 1019-1024.

  • “Transwomen have diminished mental health-related quality of life compared with the general female population. However, surgical treatments (e.g. FFS, GRS, or both) are associated with improved mental health- related quality of life.”

Alegria, C. A. (2011). Transgender identity and health care: Implications for psychosocial and physical evaluation. Journal of the American Association of Nurse Practitioners, 23(4), 175-82.

  • “Transgender persons remain marginalized and may remain closeted and at risk for negative psychosocial consequences. For those that do come out, other issues present, including the navigation of gender transition and psychosocial and physical changes that may be positive and/or negative. Examples of positive effects may include satisfaction of living authentically and decrease in depression. Negative effects may include social discrimination and loss of relationships. To provide holistic care, NPs need to be aware of transgender lives in social context and of their healthcare needs.”

 

Budge, S. L., Adelson, J. L. & Howard, K. A. S. (2013). Anxiety and depression in transgender individuals: The roles of transition status, social support, and coping. Journal of Consulting and Clinical Psychology, 81(3), 545–557.

  • “Results suggest the need for practitioners to focus on interventions that reduce avoidant coping strategies, while simultaneously increasing social support, in order to improve mental health for transgender individuals. Individuals who are in the beginning stages of their transition will use different coping strategies than those who are in later stages; interventions should be adjusted on the basis of the transition status of transgender clients.”

 

Clements-Nolle, K., Marx, R., & Katz, M. (2006). Attempted suicide among transgender persons: The influence of gender-based discrimination and victimization. Journal of Homosexuality, 51(3), 53–69.

  • “Suicide prevention interventions for transgender persons are urgently needed, particularly for young people. Medical, mental health, and social service providers should address depression, substance abuse, and forced sex in an attempt to reduce suicidal behaviors among transgender persons. In addition, increasing societal acceptance of the transgender community and decreasing gender-based prejudice may help prevent suicide in this highly stigmatized population.”

 

Dahl, M., Feldman, J. L., Goldberg, J. M. & Jaberi, A. (2006). Physical aspects of transgender endocrine therapy. International Journal of Transgenderism, 9(3-4), 111–134.

  • “The goal of transgender endocrine therapy is to change secondary sex characteristics to reduce gender dysphoria and/or facilitate gender presentation that is consistent with the felt sense of self. To maximize desired effects and minimize adverse effects, endocrine therapy must be individualized based on the patient’s goals, the risk/benefit ratio of medications, the presence of other medical conditions, and consideration of social and economic issues. In this article we suggest protocols for the prescribing clinician relating to physical assessment, prescription planning, initiation of endocrine therapy, and ongoing maintenance in transgender adults.”

 

Davies, S., & Goldberg, J. M.. (2006). Clinical aspects of transgender speech feminization and masculinization. International Journal of Transgenderism, 9(3-4), 167–196.

  • “Societal norms of speech, voice, and non-verbal communication are often strongly gendered. For transgender individuals who experience a mismatch between existing communication behaviours and felt sense of self, changes to the gendered aspects of communication can help reduce gender dysphoria, improving mental health and quality of life. While peer resources are often beneficial in changing overall appearance and presentation, speech and voice modification is best facilitated by a trans-competent speech professional. In this article we review clinical research relating to transgender speech and voice change and discuss clinical protocols for trans-specific assessment, treatment, and outcome evaluation.”

 

DeCuypere, G., Elaut, E., Heylens, G., VanMaele, G., & Selvaggi, G. (2006). Long-term follow-up: Psychosocial outcome of Belgian transsexuals after sex reassignment surgery. Sexologies, 15(2), 126–133.

  • “While no difference in psychological functioning (SCL-90) was observed between the study group and a normal population, subjects with a pre-existing psychopathology were found to have retained more psychological symptoms. The subjects proclaimed an overall positive change in their family and social life. None of them showed any regrets about the SRS. A homosexual orientation, a younger age when applying for SRS, and an attractive physical appearance were positive prognostic factors.While sex reassignment treatment is an effective therapy for transsexuals, also in the long term, the postoperative transsexual remains a fragile person in some respects.”

 

Dhejne, C., Lichtenstein, P., Boman, M., Johansson, A. L. V., Långström, N., & Landén, M. (2011). Long-term follow-up of transsexual persons undergoing sex reassignment surgery: Cohort study in Sweden. PLoS ONE, 6(2): e16885.

  • “This study found substantially higher rates of overall mortality, death from cardiovascular disease and suicide, suicide attempts, and psychiatric hospitalisations in sex-reassigned transsexual individuals compared to a healthy control population. This highlights that post surgical transsexuals are a risk group that need long-term psychiatric and somatic follow-up. Even though surgery and hormonal therapy alleviates gender dysphoria, it is apparently not sufficient to remedy the high rates of morbidity and mortality found among transsexual persons. Improved care for the transsexual group after the sex reassignment should therefore be considered.”

 

Gómez-Gil, E., Zubiaurre-Elorza, L., Esteva, I., Guillamon, A., Godás, T., Cruz Almaraz, M.,… Salamero, M. (2012). Hormone-treated transsexuals report less social distress, anxiety and depression. Psychoneuroendocrinology, 37(5), 662–70.

  • “Results suggest that most transsexual patients attending a gender identity unit reported subclinical levels of social distress, anxiety, and depression. Moreover, patients under cross-sex hormonal treatment displayed a lower prevalence of these symptoms than patients who had not initiated hormonal therapy. Although the findings do not conclusively demonstrate a direct positive effect of hormone treatment in transsexuals, initiating this treatment may be associated with better mental health of these patients.”

 

Gooren, L. J. (2011). Care of transsexual persons. New England Journal of Medicine, 364, 1251-1257.

  • A case study on a trans patient: “Guidelines for the treatment of transsexuals have been formulated by the World Professional Association for Transgender Health and are published in its 2001 report, Standards of Care for Gender Identity Disorders. These guidelines have been elaborated, with a special focus on cross-sex hormones, in the most recent guidelines from the Endocrine Society. The recommendations in this review are consistent with these guidelines.”

 

Hong, K. E. (2002). Categorical exclusions: Exploring legal responses to health care discrimination against transsexuals. Journal of Gender & the Law, 11(1), 88- 126.

  • “Health insurance has an enormous impact on determining who receives medical care. If a policy does not cover a particular treatment, an individual in need of care either pays for the medical procedure from her own resources or foregoes treatment altogether. When a person’s income, rather than her established medical need, determines the quantity and quality of care she receives, society is confronted with troubling ethical questions of what type of medical delivery system it provides for its citizens. Although this is an important inquiry, I begin this article by focusing on another disquieting aspect of health care access: How does the legal system respond to private insurers that do not cover treatments because of their dislike of a patient or their hostility toward a patient’s condition?”

 

Newfield, E., Hart, S., Dibble, S. & Kohler, L. (2006). Female-to-male transgender quality of life. Quality of Life Research, 15, 1447–1457.

  • “FTM transgender participants reported significantly reduced mental health-related quality of life and require additional focus to determine the cause of this distress. Providing this community with the hormonal care they request is associated with improved quality of life.”

Rehman, J., Lazer, S., Benet, A. E., Schaefer, L. E., & Melman, A. (1999). The reported sex and surgery satisfactions of 28 postoperative male-to-female transsexual patients. Archives of Sexual Behavior 28 (1), 71–89.

  • “Most patients were able to return to their jobs and live a more satisfactory social and personal life. One significant outcome was the importance of proper preparation of patients for surgery and especially the need for additional postoperative psychotherapy. None of the patients regretted having had surgery. However, some were, to a degree, disappointed because of difficulties experienced postoperatively in adjusting satisfactorily as women both in their relationships with men and in living their lives generally as women. Findings of this study make a strong case for making a change in the Harry Benjamin Standards of Care to include a period of postoperative psychotherapy.” [Note: the “Harry Benjamin International Gender Dysphoria Association” was renamed WPATH, discussed above.]

 

Sanchez, N, F., Sanchez, J. P., & Danoff, A.. (2009). Health care utilization, barriers to care, and hormone usage among male-to-female transgender persons in New York City. American Journal of Public Health, 99(4), 713–719.

  • “We have demonstrated that poor, uninsured, foreign-born male-to-female transgender persons who lack stable housing are less likely to have access to regular medical care. We identified the cost of care, poor access to medical specialists, and poor access to health care providers who are knowledgeable about and friendly toward transgender individuals as barriers to care. Importantly, male-to-female transgender persons with good access to health care providers were more likely to have a medical evaluation before starting hormone therapy and to obtain hormone therapies from traditional sources. They are also more likely to adhere to risk-reduction behaviors, such as smoking cessation and obtaining syringes from traditional sources. Interestingly, male-to-female transgender persons both with and without regular medical care used hormone regimens that were not consistent with the current Standards of Care for Gender Identity Disorders, placing these patients at increased risk of adverse events secondary to suboptimal hormone administration. Health initiatives should address these current gaps in care by continuing to help male-to-female transgender persons obtain health insurance and access caregivers who are knowledgeable about and friendly toward transgender individuals who will help them access and employ hormone therapies safely. To achieve this goal, the training of future health care providers should include cultural competency education that will improve attitudes toward transgender patients as well as increased knowledge of transgender health care needs.”

 

Shipherd, J. C., Green, K.,& Abramovitz, S. (2010). Transgender clients: Identifying and minimizing barriers to mental health treatment. Journal of Gay & Lesbian Mental Health (14): 94–108. doi:10.1080/19359701003622875.

  • “Results point to potential barriers to seeking mental health services. Specifically, cost of treatment, previous bad experiences with healthcare, fear of treatment, and stigma concerns were the most frequently endorsed barriers related to seeking mental health services.”

 

Wierckx, K., Mueller, S., Weyers, S., & Van Caenegem, E. (2012). Long-term evaluation of cross-sex hormone treatment in transsexual persons. Journal of Sexual Medicine, 9(10), 2641–2651.

  • “Cross-sex hormone treatment appears to be safe in transsexual men. On the other hand, a substantial number of transsexual women suffered from osteoporosis at the lumbar spine and distal arm. Twelve percent of transsexual women experienced thromboembolic and/or other cardiovascular events during hormone treatment, possibly related to older age, estrogen treatment, and lifestyle factors. In order to decrease cardiovascular morbidity, more attention should be paid to decrease cardiovascular risk factors during hormone therapy management.” [Note: This study calls trans women “transsexual men” and trans men “transsexual women.”]

 

Wierckx, K., Van Caenegem, E., Elaut, E., Dedecker, D., Van De Peer, F., Toye, K., … T’Sjoen, G. (2011). Quality of life and sexual health after sex reassignment surgery in transsexual men. Journal of Sexual Medicine, 8(12), 3379–3388.

  • “Compared with a Dutch reference population of community-dwelling men, transsexual men scored well on self-perceived physical and mental health. […] Surgical satisfaction was high, despite a relatively high complication rate. Results of the current study indicate transsexual men generally have a good quality of life and experience satisfactory sexual function after SRS.”

 


 

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One Response to “What’s the Scientific Basis for Transgender Healthcare?”

  1. Sarah says:

    Any evidence scientific or otherwise purportedly used to support the concept that Transgender is real, can be flipped, to support the more glaringly obvious reality: gender stereotypes are bullshit and so called Trans* people are perfectly normal human beings that defy stereotypical cultural norms of the pink girl and blue boy. Millions of people who would be accepted as Trans today and forced into sterilization an surgery, in the past, just grew up and learned to love the body they were born in, many even getting married and having children, some identifying as gay or lesbians. This sick trend of justifying genital mutilation exists here in the USA for the same reasons it exists in Gambia. Past victims of genital mutilation feel compelled to have others join them in order to make themselves feel less isolated and ashamed of what they have done to themselves. Real talk.

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