Erica E. Anderson, Ph.D.
Reprinted for submission to Financial Times
The number of transgender and gender nonconforming individuals presenting for healthcare services is on the rise. Sources of data are limited but data available and the reports of those involved with trans persons suggest that individuals of all ages who identify as transgender or gender nonconforming (i.e. asserted gender different than that assigned at birth male/female) are more numerous than previously believed, perhaps as common as 1 in 200 individuals in the p!opulation.!
A variety of issues hamper accurate reporting of the number of transgender people.
1) The language: Terms used to describe those not cis gender (cis which means accepting of the sex/gender assigned at birth…male/female) vary in their usage and meaning. Little uniformity exists. Few surveys of data bases have captured such information, no reliable historical data exists..Experts, however, concede that transgender and gender nonconforming persons have existed throughout human history. Only in the second 1/2 of the 20th century did physicians begin treating such individuals with hormones and surgeries. This perhaps in parallel with improved surgical technique and outcomes and more precise understanding of the mechanisms and potential manipulations of hormones.
2) Professional perspective: One important figure Harry Benjamin, M.D. ,an endocrinologist in New York City began offering cross sex hormones (i.e. estrogen and testosterone blockers for transgender women) mostly to males seeking to transform into females. Several high profile cases of surgical transformations (e.g. Christine Jorgensen and Rene Richards) brought to the public’s attention cases where such persons sought not only hormones but surgeries to correct what was ultimately in these cases considered a birth defect (i.e. gender identity of the “opposite’ sex and desire to live with a body aligned with gender identity). For many years such individuals were called “transsexuals.” However, those who were transsexuals were believed to suffer from a rare and deep seated psychiatric disorder. As such insurance companies wrote such services to these individuals into the limitations and exclusions language of health insurance contracts. There was also a decidedly moral disapproval and puritanical presumption on the part of health insurance which perspective was at that time largely shared across society and most of the healthcare professional world as well as the insurance industry. Thus for many years until very recently those transsexuals desiring medical interventions were forced of necessity to pay privately for services sought without obtaining insurance coverage or reimbursement.
3) Hidden from society/stealth: Another important historical factor is the the dominant model for transsexuals seeking to “transition,” and live in their identified gender was to pass as well as possible in their identified gender. Centers offering treatment (both hormones and surgeries) would screen for the probability that such persons could transition successfully and result in appearing indistinguishable from those (cisgender) individuals born in that gender. Dr. Harry Benjamin and like minded colleagues began developing standards of care (SOC). They formed the Harry Benjamin Society to promulgate the standards of care (SOC) as well as emerging knowledge about transgender patients and also best practices. The Harry Benjamin Society changed its name along the way to the World Professional Association for Transgender Heath (WPATH). The current edition of the Standards of Care (SOC) VII was published in 2012. Work is beginning on the next edition which will be SOC VIII. These very same Standards of Care have now been relied upon for preauthorization and determination of medical necessity. Use of the SOC have been litigated and stood as the basis (worldwide) for decisions about which healthcare services are indicated for transgender patients and what services are medically necessary.
4) Evolving Standards of Practice: Indicative of the perspective of the day the first version of the SOC required extensive medical and psychological evaluation with expert doctors prior to commencing even hormones. Something called a “real life test,” was expected to demonstrate that the trans person was capable of “passing,” in society in their identified gender and so constituted a good surgical candidate. This meant essentially that the trans person was predicated to live successfully following surgery in society in the “opposite” gender AND no regret the transition/surgery which they had undergone to correct the birth defect as indicated !earlier. They went through a prescribed series of steps with time lines for each. Several prominent University Gender Clinics offered this care. Among them were Johns Hopkins, the Cleveland Clinic, Stanford University and the University of Minnesota. All of these programs ran for several years, treated hundreds of transsexuals and reported on the results. However, all of them also closed after some years the reasons for which are still less than clear. In other countries having national single payer health systems access to gender confirmation surgeries (GCS) which term replaced “sex change” surgeries, was predicated upon a willingness to forgo saving sperm for transwomen and even having children through any means. Sweden which had such mandatory and involuntary sterilisation laws only changed such requirements in 2013. Sweden recently announced an intention to pay reparations to those transgender persons so affected. I will be consulting with The Health Ministry in Sweden when there in July. It is estimated that as many as 15 other countries in Europe operated in this same way. Many of these still have such mandatory sterilisation statutes in place. Of course these are hold overs from the Draconian eugenics movement of the 20th Century. That only now in the second decade of the 21st Century they are being removed says a lot about t!he enduring preconceptions and bias toward transgender and gender nonconforming persons.
Because the quality of outcome for genital surgery has not been very good, many transmen have skipped attempts at phalloplasty. Top surgery (total mastectomy/removal of breasts) has been the first and sometime only surgery done for transmen, with some going on to a hysterectomy and removal of ovaries, but since testosterone typically prevents menses, and many transmasculine men have spend a period of time as a more masculine(butch) lesbian many do not have surgeries other than top surgery. With improvement in technique one could expect that more transmen will opt for a phalloplasty. In the case of transwomen, many assert a female identity yet do not feel a need to change their genitals. As indicated earlier, in the past this would have been unthinkable….that is to accept a female identity with a penis. Such trends in preferences are difficult to account for or predict because in the previous era screening secured a subgroup who d!esperately sought all the surgeries possible.
Some surgeries which heretofore seemed cosmetic (e.g. breast augmentation or facial feminization surgery for transwomen) are increasingly considered important if not medically necessary. Improvement in surgical technique and trending in social appeal are also very difficult to monitor or predict. So much care was private pay till now that it is hard to say whether all the changes in s!ocietal acceptance an publicity about such things may drive up demand and utilization.
As the numbers of health professionals treating such individuals has increased more information has become available to medical practitioners and the general public. However, the centers providing such care were very limited and transgender identities were still largely taboo. Few published date about such cases existed in the conventional healthcare data bases. It is important to emphasise that many transsexual patients sought care from private practitioners here in the USA and outside the USA (e.g. Thailand and Canada) were the documentation of such care never r!eached large US based data bases. !
Until the Williams study, few reports of a traditional nature shed light upon the numbers of transgender or gender nonconforming persons in the population. In epidemiology rigorous efforts are made to objectively determine the incidence (# new cases) and prevalence (# number of cases in the population). Because of likely underreporting for reasons indicated and fear of discovery the care for many transgender patients has not been included. So fundamental questions about the numbers continue. Additional questions about trend exist as society shifts its attitudes, healthcare professionals become more competent and available and of course if reimbursement were more r!eadily and consistently available.
Once western industrialised countries became more receptive to the public presence of gay and lesbian persons a trend of more acceptance of what we know call LGBTQ persons gained traction. Most Americans know gay or lesbian persons and are accepting of same sex marriage and non-discrimination toward gays and lesbians. However, the focused study of the study of sexual and overall health of gay and lesbian persons was largely ignored until the HIV?Aids crisis of the 1980’s and its incursion into the rest of the population. This propelled action on the part of the National Institutes of Health and Centers for Disease Control to more rigorously study sexuality, sexual orientation, sexual identity, and sexual behavior as these related to overall health. As an example the term of art for studies of gay/bisexual men and such issues has come to be men having sex with men rather than homosexual sex. This subtle but important change reveals recognition that more specificity in necessary in order to more accurately and comprehensively collect data and health consequences if one is to understand how sexually transmitted diseases can be tracked and the incidence and prevalence of HIV/AIDS for example can be objectively determined and monitored over time.
This same evolution has yet to occur with transgender health. Furthermore, a number of additional challenges exist in improving data collection with trans and gender nonconforming persons.
Transgender is a term which has largely but not entirely replaced transsexual to identify those whose gender identity does not match the gender/sex assigned at birth. Gender is now widely accepted to be found in a spectrum of gender, difficult to define and fluid in expression. The appropriation of a transgender identity can occur at virtually any age. More and more young children are asserting in an insistent, consistent, and persistent manner a gender different than the one assigned at birth. Even though society has not yet grasped it, such children are almost purely transgender from a very early age. The present with parents at the few clinics like ours at UCSF to be evaluated. In the medical environment they are most often given the diagnosis of unspecified endocrine disorder and are monitored up to and through the early stages of puberty. As indicated such children may be placed on hormone blockers previously used to treat precocious puberty. Now such medicines administered through slow release implants of long acting injections. They have the effect of placing chromosomally programmed puberty indefinitely. Physicians then on behalf of such children effectively then push a pause button on puberty. Eventually these transgender or gender nonconforming children must experience a puberty either the of the one paused or a cross sex puberty through the administration of cross sex hormones in addition to blockers. Puberty completes the physical aspects of growth including bones and brain. Every human body must complete a puberty to complete development. Adverse consequences accrue it is assumed if someone does not go through puberty. In the case of an individual adolescent or adult who has completed their preprogrammed puberty one must take cross sex hormones. Because testosterone trumps estrogen male assigned sex trans patients (male to female in the old paradigm) they must have androgen blockers in order for the estrogen to have its effect. Genital surgery removing respectively the source of testosterone (testicles) or estrogen (ovaries) allow the body to experience the full benefit of cross sex hormones. !
Because all of these medical interventions are done on bodies of a gender transitioning to the other, the documentation of such interventions has not been done uniformly creating problems when it comes of analyzing the frequency and efficacy of such medical interventions. In fact to the present essentially all large medical data bases (e.g Medicare and private insurance are coded according to sex and in the binary way according to sex assigned at birth male/female.) to extract data about transgender persons is complicated enough and relies upon picking procedure and diagnostic codes that are relevant. To contemplate doing so with gender nonconforming patients raises the complexity to an even greater level. Since more and more young people claim to be non binary (gender non conforming) and the pathways to a transgender identity are becoming more numerous and arguably less predictable, such issues will only become more nuanced and challenging going forward.
Idiosyncratic gender identities (e.g. masculine of center, androgynous) and medical heroics (e.g. transmen going off testosterone so that they can have become pregnant, carry a fetus and birth and breast feed a child) are blowing the minds of many medical practitioners and others. Those older than the so called millenials may have been fearful and closeted until more recently when public recognition of transgender issues and characters in entertainment (TV and films) and the fashion industry have captured the attention in the broader society and pushed against(down) b!arriers in public acceptance of trans identities.!
Current young people have grown up since homosexuality was taken out of DSM the Diagnostic and Statistical Manual of psychiatric disorder several editions ago ( a revision of DSM II). The marriage equality decision in the United States SCOTUS in 2015 broke one of the remaining b!arriers to full acceptance of gay and lesbian identities in civil society in the USA.!
This has not yet been the case with transgender issues. Despite growing recognition, society has not yet fully embraced the concept of a spectrum of gender. In fact transgender persons in the USA (unlike some other countries like Sweden) still receive psychiatric diagnosis in order for insurance to pay for needed healthcare. In the current edition of DSM (V) the term used is gender dysphoria w!hich replaced gender identity disorder in DSM IV.
Here too society and medical science are evolving. The International Classification of Diseases (ICD) published by the WHO (World Health Organization) has in its next edition XI gender dysphoria out of the psychiatric disorder section into the category of developmental differences (variations) conceding that transgender persons represent a variation but not a disorder insofar as gender identity/difference. While such movements and advances in the recognition of transgender persons is welcomed by those who are transgender and their healthcare providers, at the same t!ime they compound the issues of data collection and analysis.
The opening of society to transgender identities and expressions has also paved the way for those who reject binary (male/female) categories altogether and choose to be gender “queer” or gender nonconforming/nonbinary. In some circles this has given rise to accommodations to permit or declare an idiosyncratic “other” gender and preference for alternative pronouns (they/them/z) to refer to individuals not he/him or she/her. This construction reeks havoc upon usual language and makes communication even more awkward for all involved. Complaints about others misgendering one are heard regularly in circles of queer and gender nonconforming young people. Such presentation and identities create large questions about whether such identities are temporary intersections or enduring, whether they may be displaced by other identities and what if any medical interventions might such persons demand or require. Could such identities seek designer hormones or new combinations of surgeries especially cosmetic surgeries? My cosmetic surgeon colleagues report to me that many new cosmetic surgeons recognize the business potential of a g!roup of individuals frantic in some cases to transform their bodies in very personal ways.
Given the pace at which such social changes are occurring and the dynamic and fluid picture of societies’ adaptation to new identities and expressions, it is all the more imperative to examine basic assumptions and practices of data collection and analysis insofar as what is known about the numbers of transgender and gender non conforming persons in the population and what the trends may be in the demands for medical interventions at various stages with various identities. ! Because we have never been here before the very best and most rigorous thinking will be necessary. The reliability and value of such data in understanding this large and increasingly diverse group much be considered in view of all the other factors mentioned here. Predictions about future usage will be very difficulty because in some ways trans has become trendy. And as all can agree trends come and go. One fact remains. A significant portion of the population asserts a transgender or gender nonconforming identity and increasingly they can no longer be denied healthcare for that reason alone.