Psychosocial issues in transgender health and barriers to healthcare

Psychosocial issues in transgender health and barriers to healthcare

Olivia Fiorilli1, Angela Ruocco2

1Cermes 3, Paris, France; 2Italian National Institute of Health, Rome, Italy

Received 31 January 2019; accepted 9 May 2019

Summary. This article aims to review critical issues in the global health of transgender and gender diverse people with a particular focus on the Italian context. Trans identities and experiences have long been pathologized. Pathologization is a form of structural stigma. In many countries, including Italy, having a trans-related mental health diagnosis is still a requisite for having one gender and name changed in identity documents and for accessing gender-affirming treatments, even though important changes are taking place, with the WHO’s International Classification of Diseases - ICD-11 - erasing trans-related diagnosis from the “Mental and behavioral disorders” and substituting them with the category of gender incongruence in the new chapter “Conditions related to sexual health”. Trans people face social and familial rejection, as well as discrimination in housing, employment, education, and social services. Those intersecting forms of oppression and discrimination have a negative effect on their health. Trans people often experience overt discrimination and hostility in healthcare settings and face structural and interpersonal barriers in the access to general and gender-affirming healthcare. While trans people are as concerned as their cisgender counterparts by the need for sexual and reproductive health services, they face multiple barriers in accessing them. More research conducted as part of a meaningful collaboration with community stakeholders and organizations is needed on important areas of trans people’s general health, as well as on the optimal content and models of service provision.

Key words. Transgender, stigma, social determinants of health, health inequalities, barriers to health.

Problemi psicosociali nella salute dei transgender e ostacoli nell’accesso ai servizi sanitari

Riassunto. Questa review si focalizza sulle criticità concernenti la salute globale delle persone trans in particolare nel contesto italiano. Le identità e esperienze trans sono state a lungo patologizzate. La patologizzazione rappresenta una forma di stigma strutturale. In molti paesi, Italia compresa, avere una diagnosi di salute mentale trans-correlata è ancora oggi necessario per modificare i dati anagrafici e avere accesso ai trattamenti ormonali e chirurgici di affermazione di genere, nonostante importanti cambiamenti potrebbero avere luogo in seguito alle modifiche apportate nella nuova versione dell’International Classification of Diseases (ICD-11) dell’OMS, nel quale le diagnosi trans sono state eliminate dal capitolo riservato alla salute mentale e sostituite dalla categoria “Incongruenza di genere” nel nuovo capitolo consacrato alla salute sessuale. Le persone trans affrontano rifiuto sociale e familiare e discriminazioni in materia di alloggio, lavoro, istruzione, servizi sociali. Stigma e marginalizzazione sociale hanno un effetto negativo sulla salute. Inoltre le persone trans subiscono spesso discriminazione e ostilità nel contesto sanitario e incontrano barriere strutturali e interpersonali nell’accesso ai servizi di salute. Sono necessarie ulteriori ricerche in importanti aree della salute generale delle persone trans, nonché sul contenuto e sui modelli ottimali della fornitura di servizi. È fondamentale che queste ricerche si sviluppino in collaborazione con le persone trans e le loro organizzazioni.

Parole chiave. Transgender, stigma, determinanti sociali di salute, disparità sanitarie, barriere nell’accesso alla salute.

Introduction

This article aims to review critical issues concerning the global health of transgender and gender diverse people — a gender minority who face formidable health inequalities — with particular attention on the Italian setting. We focus on issues concerning adult trans and gender-diverse people. Important issues concerning childhood and adolescence are outside the scope of this brief review. Transgender and trans are umbrella terms used to refer to people whose gender identity differs from the gender they were assigned at birth. People whose lived gender does not differ from the one assigned at birth are referred to as cisgender. Trans and other gender diverse people (i.e. those people who do not identify as male/female or are gender-nonconforming but do not necessarily identify as transgender) express their gender and define their gender identities in a variety of ways: e.g. man, woman, trans man, trans woman, non-binary, gender-queer, gender-fluid, etc. Terminology evolves rapidly and is culturally and geographically contingent. It is important to use a non-pathologizing and gender affirmative language, especially in healthcare contexts. Gender identity is not the same as sexual orientation. Trans people — just like cisgender people — can have any sexual orientation. Some trans and gender-diverse people might socially transition (e.g., change name, and/or pronoun and/or gender expression), legally transition (change gender marker/name on identity documentation) and/or medically transition (modify their bodies through ‘masculinizing’ and ‘feminizing’ hormonal treatments and/or surgery; all of these procedures are known as gender-affirming treatments *). It is important to note that not all trans people medically transition and some trans people only access hormonal treatments and/or some, but not necessarily all, available gender-affirming surgeries: gender transitions are individual and diverse processes.

Trans identities and experiences have long been pathologized. With the term ‘trans pathologization’ we refer to the appraisal of trans identities along with the need for gendered body modifications as ‘pathological’ (http://stp2012.info/). Since the 1960s trans-related diagnoses have been listed in the International Classification of Diseases and Related Health Problems (ICD) and in the Diagnostic and Statistical Manual of Mental Disorders (DSM). Nevertheless, thanks to trans organizations’ advocacy, important changes are taking place and the medical community has recognized that gender nonconformity is not a ‘disorder’1. As shown by a vast amount of literature, pathologization represents a form of structural stigma2 that has legal, social and health consequences for trans and gender-diverse people3. In many countries, including Italy, having a trans-related mental health diagnosis (as well as having undergone some gender-affirming treatments) is still a requisite for having one gender and name changed in identity documents: something that is criticized by trans activists and medical organizations4 as a breach of trans people’s human rights. Furthermore, in order to access gender-affirming treatments, a diagnosis of gender dysphoria is generally required, although this is not the case in a number of different settings and countries5,6. Gender dysphoria (GD) is the diagnostic category currently used to refer to the “discomfort or distress that is caused by a discrepancy between a person’s gender identity and that person’s sex assigned at birth”1 that might be experienced by some trans people. In an attempt to mitigate trans pathologization, the category of “gender dysphoria” has been included in the DSM-V to replace “gender identity disorder”7. Nevertheless, this category (and its inclusion in the DSM) is strongly criticized because it continues to pathologize the need for gendered body modifications in trans people (http://stp2012.info/; https://tgeu.org/)7. “Gender identity disorders” have also been removed from the chapter “Mental and behavioral disorders” of the 11th edition of the ICD, approved by the World Health Assembly in 2019. The category of gender incongruence (of adolescence/adulthood and of childhood) substitutes the older diagnoses and is located in a new chapter “Conditions related to sexual health”. Although this change is a step forward towards the depathologization of trans identities and expression, important concerns over gender incongruence categories persist (http://stp2012.info/; https://tgeu.org/). More broadly, many practitioners and trans health advocates question the very use of diagnoses in gender transition services. The fact that access to these services depends on diagnostic evaluation is considered part of the broader phenomenon of trans pathologization. Indeed, different models of trans-specific healthcare that do not rely on diagnostic evaluation for initiating treatment, particularly hormonal treatment, such as the ‘informed consent model’ are now applied in different parts of the world5,6,8,9. The ‘informed consent model’ puts emphasis on the capability of service users to choose their options once they have been informed of their implications, providing the possibility to seek treatment without requiring external evaluation10.

The general health of transgender people

As consistently shown by international literature, transgender people around the world face multiple and intersecting forms of oppression and discrimination including stigma, pathologization and violence, as well as social and economic marginalization. Trans people face social and familial rejection as well as discrimination in housing, employment, education, social and healthcare services11,12. The intersection of transphobia and cisnormativity with other forms of oppression like racism make some segments of the trans and gender-diverse population even more vulnerable to marginalization11. As far as Italy is concerned, a study of the European Agency for Fundamental Rights has shown that trans people experience high rates of discrimination in education (23%) and employment (43% when looking for it and 22% in the workplace). Trans people are over-represented in the lowest income quartile (33%). Stigma is also high, 51% of respondents reported discrimination or harassment on the grounds of being trans in the 12 months preceding the survey12. Marginalization is even stronger for those trans people who experience intersecting forms of stigma and structural oppression such as trans people of color, migrants and sex workers13. Italy has the highest number of trans people murdered in the EU. Most of the victims are migrant trans women sex workers14. Finally, trans people, are often victims of microaggressions, i.e. subtle forms of discrimination in which brief, daily, behavioral, verbal, or environmental injustices occur15. One of the most common forms of microaggression experienced by trans people is ‘mis-gendering’ i.e. referring to a person using an incorrect pronoun/name.

All these factors are social determinants of ill health16 that negatively affect the general health of trans people. An Italian study17 showed that social status is the primary determinant of premature mortality. The most relevant social aspects related to premature mortality are availability of a work and a family network, level of education and material resources; as we have seen, access to these resources is restricted for trans people. Not surprisingly, trans people worldwide are burdened by substantial adverse health indicators, as consistently shown in the literature18. As shown in a review by White Hugtho and colleagues, stigma – be it structural, interpersonal or individual (see the glossary at the end of the article) – is a fundamental cause of ill health in the trans population, firstly, because it directly induces stress (a key driver for morbidity and mortality), and secondly, because it restricts access to health protection resources2. Surprisingly, though, there is a dearth of literature that examines the link between social exclusion, anti-transgender stigma and trans people health18. Literature has shown the negative effects of stigma on mental health through the mobilization of the minority stress model19,20. Recent studies in Italy found that discrimination and internalized stigma are associated with negative mental health outcomes like depression, anxiety, and suicidal ideation21,22. Another area where the link between stigma and adverse health has been explored is research on HIV. Literature consistently shows that trans people, particularly those in the feminine spectrum, carry a significantly higher burden of HIV infection and other sexually-transmitted infections23. Stigma, marginalization and lack of gender affirmation that can lead to HIV-related vulnerabilities (e.g. risk behavior as coping mechanisms) are core drivers of HIV risk for trans people24. Trans people continue to be a highly stigmatized and under-resourced population both in clinical care and HIV prevention services24, as well as in research. The dearth of literature on interactions between antiretrovirals and hormone regimens used in gender transitions is one example25. In general, research is lacking on the interaction between gender affirming treatments and other medical treatments. Finally, research is starting to delve into the physical health implications of transitioning-related stress26, but the psychobiological link between minority stress and physical health is still an understudied area.

Indeed, recent reviews suggest that the general health of trans people is still the least researched area in transgender health19,27. Historically, transgender health has only been considered through the prism of pathologization. Not surprisingly, literature has over-focused on gender affirming treatments and mental health27, whereas crucial areas such as cancer, cardiovascular, metabolic and degenerative diseases and others have remained under-researched19.

Barriers to healthcare

Trans people face enormous barriers in accessing appropriate and equitable health care and are a medically-underserved population in both primary and tertiary care settings. Trans people experience more unmet health care needs than their cisgender counterparts28,29. Barriers to healthcare are multifactorial and have social, interpersonal and structural dimensions30. Trans people often experience overt discrimination and hostility in healthcare settings31. Experiences of discrimination or fear of victimization can lead trans people to avoid or postpone care32. As regards Italy, a recent study found out that 17% of respondents had experienced discrimination by healthcare personnel in the previous 12 months13. Facing inappropriate curiosity, having one’s specific needs ignored and being pressured/forced to undergo medical or psychological tests were the most commonly reported experiences13. Previous research on European countries including Italy reported that 25% of respondents had been refused care because a practitioner did not approve of gender transition33. Though treating trans patients does not require specialization, providers often lack basic knowledge about trans people and their needs. In actual fact, the lack of sensitive and knowledgeable health providers and of information on trans service users’ specific needs are often cited as fundamental barriers to healthcare for trans people34,35 even by practitioners themselves36. International studies have shown a lack of LGBT-related curricular content in medical schools37. In Italy, trans health issues aren’t generally addressed in medical curricula except under the heading of ‘gender dysphoria’. This might foster the misleading idea that being trans is a health problem per se or that any health problem experienced by trans people is related to their trans status35. As a consequence, many health professionals are not informed about trans health issues. This creates a barrier in the access to care for trans service users: research has shown that even in contexts of universal health coverage trans people are less likely to have a regular family physician or report discomfort when discussing trans specific issues with practitioners38. The lack of knowledge regarding trans issues combined with the assumption that such knowledge does not exist was described by Bauer and colleagues as a form of informational erasure35. A similar kind of erasure of trans needs and specificities is mirrored at an institutional level, where policies to accommodate trans patients are non-existent35. In Italy, as in other countries, this kind of institutional erasure takes different forms. For instance, healthcare facilities do not usually recognize trans people’s gender identity on intake forms and hospitalization policies (e.g. transmen and transmasculine people are often hospitalized in women wards and vice versa, intake forms do not allow service users to self-identify), in spite of the evidence that gender affirmation is a crucial determinant of health for trans people24. Furthermore, institutional erasure is evident in the fact that medical record and billing/coding systems are designed in a way that does not consider trans people’s genders and embodiments, as they assume a concordance between a given gender and a certain set of body parts. As a consequence, access to consultations and tests that are considered ‘gender-specific’ (e.g. gynecological or urological consultations) is barred for some trans people. In a similar way, trans people who have changed their legal gender are excluded from screening for diseases that are coded as ‘gender-specific’ (e.g. prostate cancer screening for transfeminine people or cervical cancer screening for transmasculine people).

Barriers to gender-affirming healthcare

Trans people also face a number of barriers even with regard to access to gender-affirming treatments. This is particularly alarming given that international literature shows that structural and social barriers which impede or delay access to transition-related care can have a negative impact on physical and mental health for trans people. Conversely, access to transition-related care when needed is a protective factor for health risks40 and is associated with decreases in suicide and self-harm risk39,41,42.

Barriers to gender-affirming healthcare are structural and interpersonal30. A dearth of knowledgeable providers willing to provide affirmative care has been documented in many European countries, including Italy10,12,33. General practitioners are among the least knowledgeable and sensitive providers in this domain12. This is particularly concerning given that hormone treatments are best undertaken in the context of primary care1. In many countries, trans people are less likely to have health insurance and many insurance policies do not cover trans-related healthcare29. Financial barriers can exist even in countries that provide universal coverage and where public healthcare is free of charge at the point of service. For instance, in Italy, hormonal treatments are prescribed off-label and refunded only in a few Regions/facilities. A dearth of knowledgeable providers and geographical inequalities are also a financial barrier to trans healthcare in Italy. Furthermore, while gender-affirming surgery is covered by the NHS, accessing it actually has a cost for trans service users. Based on Law 164/82, access to gender-affirming surgery must be authorized by a court of law on the basis of solid medical and psychological documentation that can have a considerable cost. This represents a strong financial burden, especially for a population that suffers from economic marginalization. Furthermore, the fact that access to gender-affirming surgery requires authorization by a judge increases waiting times for surgery. The long waiting times for surgery in the public sector (e.g. 12 months or more) is also due to institutional constraints and a dearth of experienced surgeons trained for trans-specific genital surgery. Few are willing to practice non trans-specific surgeries like oophorectomy, hysterectomy or bilateral mastectomy on trans patients for the purpose of gender affirmation. Furthermore, there is anecdotal evidence that service users face difficulties in finding post-surgical care in the presence of complications, which are frequent in gender-affirming genital surgery43,44.

Despite the burgeoning literature on trans experience of general health services, there is a dearth of research on trans people’s experiences with transition-related services. Existing literature provides alarming data. A UK study on trans experiences with gender identity services showed that 46% of the respondents experienced difficulties obtaining the treatment/assistance needed45. Barriers to quality care might also arise from the way trans healthcare is organized46. Some trans organizations, service users and health professionals question the fact that access to gender affirming procedures in many countries is conditional to authorization by a mental health professional and in some cases (as in some centers in Italy) on psychotherapy8-10. Mental health professionals’ ‘gatekeeping’ is questioned for a number of reasons, including the fact that it limits service users’ autonomy while not granting a better care outcome, as shown in a 2011 study47. Furthermore, it might represent an obstacle to a trusting therapeutic relationship and have a negative impact on service users’ health and on their ability to receive care. Research on trans people’s experience of gender identity services in the UK has shown that 62% of the respondents reported feeling emotionally distressed or worried about their mental health whilst attending a gender identity clinic and 53% felt that they were not able to discuss these concerns for fear of jeopardizing access to gender-affirming treatments and some had lied or withheld information for the same reason41,45.

Sexual and reproductive health

Trans people’s sexual and reproductive health is an area of particular concern. Despite a relatively vast amount of research on HIV and STIs, sexual and reproductive health has been relatively marginal in medical literature on transgender health27. Although trans people are as concerned as their cisgender counterparts by the need for sexual and reproductive health services including contraception, abortion, screening for STI and reproductive diseases, they face multiple barriers to accessing them48-50. Barriers arise from a lack of consideration of the specificities of trans embodiments and also from the fact that sexual and reproductive health services are often not ready to offer gender affirmative care for their trans users. Nevertheless, many recommendations exist that can help providers to offer more trans-inclusive services48,51-53. Sex education rarely acknowledge trans people’s specificities. Existing information on sexual health for trans people is not easily available54. Although trans people, like anyone else, can have or desire to have children either before or after transitioning, for a long time sterility has been considered as the ‘price to pay’ for transitioning55,56. In many countries, sterilization is considered a requisite for legal gender change. Nevertheless, in 2017, the European Court of Human Rights ruled that requiring sterilization for legal gender recognition violates human rights. In Italy, for a long time jurisprudence considered sterilizing genital surgeries as a requisite for gender recognition. In 2015, the Supreme Court and the Constitutional Court ruled that surgery cannot be a requisite for gender recognition; nevertheless, the translation of this verdict into jurisprudence is still non-homogeneous. Most gender affirming genital surgeries (e.g. vaginoplasty, phalloplasty) have a sterilizing effect57. Nevertheless, some sterilizing surgery routinely practiced within the frame of medical transitions might be undertaken for reasons other than gender affirmation. A US-based study published in 2010 showed that for the majority of participants who underwent hysterectomy and oophorectomy, prevention was the ‘number one reason’58, despite the fact that there is no evidence that gender-affirming hormonal treatments increase reproductive cancer risk59. Fertility can also be affected by hormonal treatments58. Masculinizing hormonal treatments usually provoke reversible amenorrhea, but unplanned pregnancies cannot be ruled out. Increased androgen levels might affect ‘follicle’ growth58. Nevertheless, trans men and transmasculine people could get pregnant regardless of prior testosterone use53-60, 61. Even the effects of estrogens on fertility are reversible, but research has reported a poor ‘semen’ quality due to feminizing hormonal treatments58. Furthermore, interrupting hormonal treatment in order to re-establish fertility can be a painful experience for some trans people. The standards of care of the WPATH recommend that providers discuss fertility options with clients before the commencement of hormonal treatments1. Of the current fertility-preservation options, gamete cryopreservation is well established62. Embryo cryopreservation requires a partner or donor and gonadal tissue preservation is more experimental. In Italy, the possibility to cryopreserve gametes is available to some services users (especially transfeminine people), but geographical inequalities are significant. Data on trans people’s access to assisted reproductive technologies in Italy are lacking. It is worth remembering that under Law 40/2008, ARTs are available only to heterosexual couples in Italy. This prevents some trans people (as well as some cisgender people) from the possibility to access them. Finally, little literature is concerned with the health service experiences of trans men, transmasculine and other gender-nonconforming people who go through pregnancy and birth. While pregnancy might be anathema to some transmasculine people, others might want or need to undergo it in order to have a genetically-related child. Existing literature shows that trans people who undergo pregnancy might feel particularly isolated and have difficult experiences with providers including misgendering, discrimination and rude treatment, through to being denied treatment61. Some publications provide suggestions for the provision of affirming and inclusive care53,61.

Conclusion

Trans and gender diverse people face a multitude of discriminations that adversely affect their health. These include a range of structural and interpersonal barriers that restrict trans people’s access to care, both general and related to gender affirmation. More research is needed on important areas of trans people’s general health, as well as on the optimal models and content of service provision. A better understanding of the mechanisms that put trans people at risk of or protect them from adverse health — including legal and social policies63 — would lead to more meaningful interventions on trans people’s health. As suggested by many trans advocates and health researchers, research on trans health should be grounded, from inception to dissemination, in a meaningful collaboration with community stakeholders64, in order to ensure that health-related research and interventions are responsive to trans people’s real-life issues65. Participatory population perspectives and community-based participatory research approaches that aim at working with and not on trans people and their organizations are already being implemented with important results18,28,32,35,38. As recently reported by Reisner and colleagues in the Lancet, against the backdrop of widespread social and economic exclusion “community empowerment is essential for clinical services, public health programs, and human rights efforts that seek to design and implement effective services and population-level interventions to improve the health and wellbeing of transgender people”65.

Glossary

Cisnormativity: the expectation that every person is cisgender and that who were assigned male or female at birth, will identify themselves as men and women, respectively. This assumption is so pervasive and dominant that it is not easily recognizable as such and it shapes the entire society.

Gender identity: gender identity refers to each person’s deeply felt internal and individual experience of gender, which may or may not correspond with the gender assigned at birth.

Transphobia: term referred to a repulsion, hatred, discrimination and physical and verbal aggression vis-à-vis transgender and gender non-conforming individuals.

Stigma: psychosocial process through which people belonging to a majority group attribute a negative and disqualifying feature to an individual or to an entire group of individuals in order to lead the entire group to a lower social rank.

Individual stigma: term used to indicate both the feelings and the emotions that the stigmatized individuals feel toward themselves and what they believe others think about them (perceived stigma).

Interpersonal stigma: it manifests itself with various forms of discrimination, including verbal, physical or even sexual abuse, due to the visibility of most transgender people, visibility that exposes them to a greater risk of stigmatization.

Structural stigma: it pertains to all those social conditions, cultural norms, and institutional policies that restrict the opportunities, resources and well-being of stigmatized people. It is a type of stigma used by majority groups in order to exclude and marginalize groups that deviate from what is perceived as ‘the norm’.

Note

*In the literature published in English “gender-affirming treatments/surgery” has now almost completely superseded the term “sex/gender-reassignment treatments/surgery”, which is considered to be problematic, disrespectful and inaccurate. Indeed, it has now been established that hormonal and surgical treatments do not “reassign” the sex/gender of an individual, rather they help him/her/them to better express, “affirm”, his/her/their gender: hence the term “gender-affirming”. In Italy, the term “riassegnazione di genere” [gender-reassignment] or “riassegnazione sessuale” [sexual reassignment] are still commonly used; however, these terms present the same problem as the English equivalent “sex/gender reassignment”. In the Italian abstract, we have therefore opted to use the term “trattamenti di affermazione di genere” [gender-affirming treatments] as, despite being less familiar to the Italian-speaking public, it renders the above concepts in a more accurate manner

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Conflict of interest statement: the Authors declare no conflicts of interest.

Correspondence to:

Olivia Fiorilli

Cermes3, Paris, France

email: rogerfiorilli@gmail.com