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Access to Quality, Informed Healthcare for Transgender Youth and Adults

Introduction

Transgender youth, adolescents, and adults have unique health care needs as well as important concerns about access, discrimination, and quality of care. Although transgender individuals in metropolitan areas where there are large lesbian, gay, bisexual, and transgender (LGBT) populations sometimes have access to clinics where the providers specialize in working with sexual and gender minorities, those who live in smaller urban and rural areas are likely to lack access to informed care23. They may also experience discrimination1,13 and receive health care that is of poor quality9. Poor quality health care includes both being coerced into receiving services that are inappropriate and failing to receive necessary and appropriate services due to provider ignorance or inaction.

The problems that transgender patients experience with healthcare can largely be attributed to either bias or ignorance. Although bias is the more difficult issue to deal with, as to be handled effectively perceptions of transgender individuals and their rights have to be addressed across the social and political spectrum, professional ignorance about the healthcare needs of transgender individuals may be both more problematic and more pervasive.  Several studies have assessed medical and nursing students ability to care for LGBT patients and found them lacking14,18. A study that examined the curricula of all allopathic and osteopathic medical colleges in the United States found that 70 percent of programs rated their coverage of LGBT health issues as “fair, poor, or very poor.”21. The median number of hours dedicated to teaching about LGBT clinical issues was five; however, a significant fraction of schools provided no training at all in LGBT health during either the pre-clinical or clinical phases of training12. Furthermore, even those schools that did provide some training in LGBT health issues often did a particularly poor job of addressing transgender health.

Professional bias, however, is also a concern. Although doctors, nurses, and behavioral health providers are supposed to provide the best possible care for all of their patients, that is difficult when they are unable to address one or more facets of the individual’s experience, for example when they lack comfort in dealing with sexual orientation or gender identity issues3,6. Despite the fact that there has been a growing movement towards including cultural competence training in professional curricula, medical schools still need to do a better job of directly addressing sexual and gender diversity issues with their students and staff instead of bundling them under the umbrella topic of diversity3.

The Transgender Patient Perspective

The theory of stigma suggests that one reason that transgender individuals receive poor quality health care is that the stigma and discrimination they face in their everyday lives may make them reluctant to access health care services, which are by nature highly personal and potentially stigmatizing13. However, early healthcare experiences with stigma may also contribute to transgender patients’ reluctance to engage with traditional healthcare settings across the lifespan.  Many transgender individuals report negative experiences with providers who are ignorant, discriminatory, or both7,9,13.

A number of different kinds of stigmatizing behavior are common in healthcare settings. One large study examining transgender patients’ perceptions of stigma identified six general types of such behavior. These included verbal harassment, insensitivity to patients’ gender identity, displays of discomfort by the provider, denial of services, forced services, and overall substandard care. For example, insensitivity to gender might include refusing to use a patient’s preferred pronoun or giving a male identified patient a pink, floral hospital gown. Forced care might take the form of a doctor insisting that a person with a cross-gender identity is mentally ill and committing them to inpatient psychiatric care. Denial of services might involve a provider’s refusal to provide appropriate cross-gender hormones, but it could also involve a total unwillingness to treat transgender patients9. It is understandable that such experiences could make patients feel unsafe and decrease their engagement with the healthcare system, supporting a role of stigma in reducing access and utilization.

Another study, examining barriers to care in New York City, found that a number of factors affected transgender patients’ healthcare utilization, of which stigma was only one. Other factors included the high price of medical care, lack of access to specialists, and the fact that there were relatively few providers who were both friendly to transgender patients and knowledgeable about their health needs. This was true despite the fact that New York City has several clinics specializing in the care of LGBT individuals, and as such should theoretically be a relatively easy place to find informed, non-stigmatizing care19.

It is also important to note that stigma at the hands of providers is not the only way that stigma theory can contribute to the understanding of gender-based inequities in access to healthcare. Discrimination can also directly affect individual financial resources related to healthcare access. For example, transgender individuals often face employment and other forms of social discrimination that lead to insurance rates that are disproportionately low when compared their cis-gender counterparts7. Additionally, many healthcare costs related to gender transitioning are not covered by insurance, although that is changing in some states. This not only increases out-of-pocket healthcare expenses for transitioning patients but may also bias such patients against traditional sources of care. As things stand, national data suggest that only a minority of transgender individuals regularly access healthcare, although the percentage varies significantly across different geographic regions13.

Addressing Barriers to Quality Healthcare

Access to quality health care has numerous benefits. Transgender patients who are seen regularly by healthcare providers report increased overall mental and physical health. They also show improved risk reduction behaviors, including a decreased likelihood of smoking and an increased likelihood of getting hormones from a physician instead of buying them on the street19. In contrast, individuals who do not have regular access to supportive healthcare providers may engage in potentially dangerous practices such as using unregulated hormones or attempting to cut off their own penis, testicles, or breasts in order to make their body conform to their self image15. In addition to the obvious dangers of such self-surgery, purchasing hormones from an unlicensed source has numerous potentially negative health effects. These risks stem both from unmonitored hormone use and from the potential exposure to shared and contaminated needles, which can increase the risk of a number of infections, including HIV11.

Unfortunately, many transgender patients lack access to quality healthcare. Furthermore, they are even more likely than gay, lesbian, and bisexual individuals to be subject to discrimination, and even outright mistreatment, in the healthcare setting10. In order to reduce transgender healthcare inequities, and decrease the likelihood of mistreatment, it is necessary to address several persistent barriers to access.

First, it is necessary to raise professional awareness of the dearth of training available to medical professionals on the subject of  transgender health12. If widespread curriculum improvements could be instituted across medical, nursing, and other healthcare training programs, the next generation of providers could begin to develop the skills they need to provide high-quality, informed, and evidence driven healthcare to transgender patients. Second, there is a need to work with media, schools, and other organizations to change the often negative perceptions of transgender individuals that are found in many mainstream venues21. Ideally, this would also involve education about the diversity of gender expression seen in transgender, and other gender non-conforming, individuals in order to further reduce the socio-cultural drive for people to conform to the gender binary – either within the confines of their natal gender or in the way they present during and after transition2.

Finally, it is critical to address the many structural barriers to quality healthcare for transgender patients. These include things such as expanding gender options on required patient forms and electronic medical records and finding ways to clearly indicate when a patient’s internal anatomy does not conform to their external gender presentation5. Without such information being part of the medical record, it is possible for individuals to fall through the cracks and miss out on important health screenings. For example, a transgender man who still has a uterus and cervix should still receive Pap smears according to guidelines, but this may not necessarily be apparent to a provider who is unaware of his medical history. It is, as such, also important to remove unnecessary gender labels from health screening whenever possible. A man should not be sent for a breast exam. However, depending on his anatomy he may need mammography.   Finally, gender-segregated healthcare facilities should work to develop informed, compassionate policies for handling transgender patients in various stages of transition20.

The lack of quality physical and behavioral healthcare for transgender patients is not only a concern for those patients and their advocates. Many providers have also expressed frustration with the barriers that prevent them from providing appropriate, high-quality care. These barriers include the aforementioned lack of access to reliable, evidence-based information about care for transgender patients, providers’ ethical concerns about prescribing treatments for which they lack expertise, and a widespread lack of understanding of the role gender identity plays in mental health20. In short, providers realize that they do not have the skills and information to provide the care transgender patients need8. Unfortunately, even when providers are highly motivated to seek out specialized training in working with LGBT individuals, they often find that it’s difficult to obtain16.

These problems are not necessarily difficult to fix, but they require an interest in making changes and a willingness to commit to seeing those changes enacted. Schools and practices that have made a concerted effort to improve the provision of gender- and sexuality- affirmative care have shown that it can be done4,17,22.  They’ve also shown that there’s not a single formula that needs to be followed to improve the quality of care. The main thing that successful programs have in common is a commitment to social justice for the transgender community, a recognition that all individuals deserve access to quality mental and physical healthcare, and a willingness to figure out the best way to make any necessary changes in their practice, school, or community.

References

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