Intersecting Experiences of Healthcare Denials Among Transgender and Nonbinary Patients

Intersecting Experiences of Healthcare Denials Among Transgender and Nonbinary Patients

ARTICLE IN PRESS RESEARCH ARTICLE Intersecting Experiences of Healthcare Denials Among Transgender and Nonbinary Patients Shanna K. Kattari, PhD,1 M...

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RESEARCH ARTICLE

Intersecting Experiences of Healthcare Denials Among Transgender and Nonbinary Patients Shanna K. Kattari, PhD,1 Matthew Bakko, MSW, MA,1 Hillary K. Hecht, BA,1 M. Killian Kinney, MSW, LSW2

Introduction: Transgender and nonbinary individuals experience high levels of health disparities and are more likely to experience denials of health care than their cisgender (nontransgender) counterparts. There is a lack of evidence on how healthcare denials vary by gender identity and other intersecting identity characteristics in the transgender and nonbinary populations.

Methods: Using data from the 2015 U.S. Trans Survey (n=27,715), multivariate logistic regressions were used to analyze (in 2019) the increased likelihood of experiencing denials of trans-related care and standard care across socioeconomic and identity characteristics among the transgender and nonbinary population, including race, age, educational attainment, disability, income, and gender identity.

Results: Almost 8% of the participants had been denied trans-specific health care, and >3% had been refused general health care. Transgender (compared with nonbinary), older, biracial, or multiracial, and lower-income participants, as well as those with less than a high school diploma and those with disabilities, were significantly more likely to experience refusal of care in general or trans-specific healthcare settings. Conclusions: There is a need for better training of healthcare providers to be inclusive and reduce denial rates of their transgender and nonbinary patients. However, it is also clear that current rates of denial must be considered through a whole-person lens, considering the experience of concurrent oppressed identities and recognizing the increased risk those with multiple marginalized identities experience in being denied needed health care. Am J Prev Med 2020;000(000):1−8. © 2020 American Journal of Preventive Medicine. Published by Elsevier Inc. All rights reserved.

INTRODUCTION

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ransgender and nonbinary (TNB) individuals have unique health needs, yet frequently face denials and refusals in health care compared with cisgender (nontransgender) individuals. Denials can lead to suicidal thoughts and attempts, as well as increased substance use disorders and transgender-based health disparities.1 These denials occur in both transrelated care and primary care. TNB patients may be denied primary care, mental health care, and other specific healthcare needs based on their gender identity.2 Although research has shown the prevalence of healthcare denials experienced by the TNB population, it has failed to adequately account for denials that may be experienced disparately by TNB individuals with different gender

identities. In addition, there is a lack of understanding about how gender identity intersects with other forms of social identity to affect TNB experiences of transgenderbased healthcare denials. Though difficult to assess the prevalence of a population when data are not collected in the Census or most statewide measures, research indicates that approximately 0.6% of adults in the U.S. identify as transgender From the 1University of Michigan School of Social Work, Ann Arbor, Michigan; and 2Indiana University School of Social Work, Indianapolis, Indiana Address correspondence to: Shanna K. Kattari, PhD, University of Michigan School of Social Work, 1080 S. University Avenue, Ann Arbor MI 48197. E-mail: [email protected]. 0749-3797/$36.00 https://doi.org/10.1016/j.amepre.2019.11.014

© 2020 American Journal of Preventive Medicine. Published by Elsevier Inc. All rights reserved.

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or nonbinary. TNB identities include anyone whose gender differs from the social expectations aligned with their sex assigned at birth. Beyond binary transgender identities that conform to binary gender expectations, nonbinary identities include anyone whose gender identity is not exclusively man or woman.5 For TNB individuals, identities can be expressed with terms such as “trans man,” “transmasculine,” “trans woman,” “transfeminine,” “nonbinary,” “nonconforming,” “genderqueer,” “Two-Spirit (an indigenous identity),” and “agender,” as well as “man” and “woman” (without the “trans” qualifier). Historically, owing to smaller sample sizes and lack of knowledge of the difference between sex and gender,6 these gender identities have been conflated to “transgender” or “other” in data collection, disallowing an in-depth analysis of the nuanced experiences for groups within this population. However, research has begun to explore these differences, as well as the disparities and discrimination faced by the TNB population.7−9 Access to health care is a social determinant of health.10 Research shows that TNB individuals face high rates of barriers to accessing health care,11−16 and denial of care has been identified by TNB individuals as 1 of the primary barriers.10 Moreover, transgender-based and transphobic discrimination results in elevated rates of denial of care, in addition to many experiences of physical and verbal violence when receiving care in a variety of healthcare settings.17,18 In a systematic review, TNB individuals were found to be 2.34 times more likely to be denied care in their lifetime compared with cisgender lesbian, gay, and bisexual individuals.10 Within healthcare research, the existence of a binary transgender privilege has been hypothesized to be due to an assumed linear path of transition from 1 gender to the other that aligns with pre-existing medical and social constructs.19 Differences in experiences are important to identify to address disparities accurately. According to the 2015 U.S. Trans Survey (USTS), approximately 33% of TNB people (42% trans men, 36% trans women, and 24% nonbinary) had negative experiences when attempting to see a healthcare provider in the previous year in a variety of contexts, including primary care, emergency care, and mental health care, with 8% having had a provider who refused to give transrelated care in the previous year.18 Although nonbinary respondents reported less medical refusal because of bias (14.0%) compared with the overall sample (19.0%), they reported higher postponement of needed medical care because of fear of experiencing bias (36.0% vs 28.0%).20 In addition to having less insurance coverage than the general population,13 the USTS study also found that of respondents who pursued transition-related care, 25%

were denied access to hormones and 55% denied surgery by insurance companies.14 Transgender-related denial of care may be stratified by other intersecting identities. Trans feminine people of color report drastically more refusal of care by providers than their white and transmasculine people of color peers,21 and TNB individuals of color are more likely to experience discrimination and refusal of care when compared with their white counterparts.22 Disabled TNB individuals also experience increased discrimination and denial rates, similar to cisgender disabled individuals.18,23 Age is also connected to experiencing a denial of care, differing throughout the life span.24 Conversely, increased income is associated with decreases in refusal of care.21 Patients who have experienced provider refusal of care are more likely to avoid future care because of fear of mistreatment.21,25,26 Research shows that TNB individuals may avoid emergency healthcare settings for fear of being “outed” as transgender.27 Emergency departments do not provide adequate training for providers who care for TNB populations.28 Little is currently known about denial of care in other specialties; for example, dentistry is a field where conversations around transgender-inclusive care are just beginning.29 Pharmacists can increase access for TNB patients seeking gender-affirming prescriptions, and some do, when patients may otherwise face denial with insurance or challenges with legal name/gender markers.30 Patients’ experiences will be influenced by the biases, inclusivity, and actions of their care providers.28−30 Patients who identify as TNB discuss needing a comfortable environment to disclose their sexual orientation and gender identities to providers, particularly when their identities are medically relevant to their chief complaint, and they must educate providers about their identities.31,32 Given that mental health care is often a prerequisite to receiving gender-affirming treatment in many places, TNB patients could benefit even more from access to transgender-affirming mental health care.32 Medical care providers have minimal training regarding gender identity and sexual orientation.26,30 This is critical as TNB individuals are put in a position where they must teach their providers about their own identities and health needs. Patients having to teach providers is associated with an increase in avoiding or postponing treatment.26 Some TNB patients report positive experiences, primarily when providers use inclusive, respectful language and allow patients more control over their procedures.33,34 Lack of policy protections against denials for TNB patients is another barrier. Obama-era interpretations of the Patient Protection and Affordable Care Act

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prohibited transgender-related discrimination and denials,35 but a 2016 federal injunction leaves this interpretation unenforced.36 Currently, 27 states do not protect against transgender-related denials in a variety of settings, including health care and insurance.37 Policy protections are important as both insurance denials and lack of legal documentation discourage transgender patients from seeking appropriate and adequate care.2,38 Understanding differential experiences and the consequential impact on TNB individuals is important for informing best practices and trans-affirming policies. Providers and researchers lack an understanding of how differences in denials of care may vary across different genders within the TNB population. These questions are posed: (1) Does the likelihood of being denied health care vary by gender within the TNB population, and if so, how? (2) How do socioeconomic and identity characteristics, including gender identity, race, income, disability status, age, and education level, affect the likelihood of TNB individuals being denied health care?

METHODS Study Sample The current study used the 2015 USTS, which surveyed 27,715 TNB individuals across the U.S. Individuals could participate if they were adults aged ≥18 years and identified as TNB. Respondents were recruited online and through organizational partners using convenience sampling. Surveys were available online in English and Spanish. Individuals were asked to provide information about themselves in a variety of areas, including demographics and experiences in healthcare settings. More information about this survey is provided in James et al.18 Data were provided to the first author, and analysis was conducted in 2019 after exemption from a University of Michigan IRB.

Measures To evaluate the odds of experiencing denial of health care, the dependent variables of “doctor or healthcare provider refused to give trans-related care” and “doctor or healthcare provider refused to give other health care (such as for physicals, influenza, diabetes),” both within the past year, were regressed on demographic independent variables using multivariate logistic regression. Only those who stated they saw a provider in the past year were asked these questions. All individuals who answered the “refused to give other health care” question were included in multivariate analysis of that dependent variable, and only those who indicated they wanted trans-related health services and answered the “refused to give trans-related care” question were included in the analysis of that variable. Though not operationalized for participants, “transrelated care” can be generally understood as services specifically related to transition, such as gender-affirming surgery and hormone therapy. Independent variables included race/ethnicity, age, educational attainment, disability, income, and gender identity. These were ascertained through demographic questions and treated as categorical in the analysis. Transgender respondents

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either self-identified as trans women or trans men or selected a different gender identity (e.g., woman) than their sex assigned at birth (e.g., male). Assigned female at birth genderqueer/nonbinary (AFAB GQ/NB) and assigned male at birth genderqueer/nonbinary (AMAB GQ/NB) respondents selected their birth sex and self-identified their gender as genderqueer/nonbinary.

Statistical Analysis Regressions were conducted after preliminary bivariate chisquared analyses showed an association between the dependent variables and gender. Models and data were checked for proper specifications, including sufficient data. Because of insufficient sample size, race categories of Native American and Middle Eastern were dropped, and the age category ≥65 years was collapsed with the 45−64 years category. Researchers using USTS data were advised to use the USTS-generated standard survey weights for race and age. Weights correct for oversampling of whites and 18year-olds.18 Weights were applied to all findings. Unweighted regression results are provided in Appendix Table 1 (available online). The 2 multivariate models, 1 for each dependent variable, had different sample sizes because of slight differences in missing data, with the main unweighted analytic sample consisting of 20,921 participants.

RESULTS Individuals were included in the descriptive results (Table 1) if they responded to either of the 2 dependent variable questions. Approximately 67% of respondents in the weighted sample identified as transgender, and 33% identified as genderqueer or nonbinary. Regarding the former category, 35.34% of the sample were trans women, and 31.36% were trans men. Most respondents were white (63.46%), aged 18−44 years (83.52%), and earned an income of ≥$25,000 (63.24%). Disabled individuals accounted for 28.47% of the weighted sample. The sample was highly educated, with 25.98% having a bachelor’s degree and 13.86% having a professional or graduate degree as their highest level of educational attainment. Trans-related care denials were experienced by 7.85% of respondents, and 3.05% experienced other healthcare denials. However, when including only those participants who wanted trans-related care, the rate of trans-related care denials increased to 8.18%. Multivariate results (Table 2) were statistically significant overall for both models (p<0.001). When controlling for other variables, individuals who were AFAB GQ/NB (OR=0.33, p<0.001), and AMAB GQ/NB (OR= 0.48, p<0.001) had lower odds of experiencing transrelated care denials, compared with trans women. AFAB GQ/NB (OR=0.73, p<0.05) and AMAB GQ/NB (OR= 0.55, p<0.05) had lower odds of experiencing denials of other health care, compared with trans women. Trans men did not significantly differ from trans women in their odds of experiencing either form of denial.

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Table 1. Univariate Demographics of Sample

Demographics Denials of trans-related care Yes No Denials of other health care Yes No Gendera Trans women Trans men AFAB GQ/NB AMAB GQ/NB Race White Latino Black Asian/Pacific Islander Biracial/multiracial Education attainment Less than high school High school Some college Associate’s degree Bachelor’s degree Graduate or professional degree Income No income Low income (<$10,000) Low-mid income ($10,001−$25,000) Mid income ($25,001−$50,000) Mid-high income ($50,001 −$100,000) High income (>$100,000) Disability Yes No Age, years 18‒24 25−44 ≥45

Unweighted (n=20,921) n (%)

Weighted (n=20,434) n (%)

1,686 (8.06) 1,603 (7.85) 19,235 (91.78) 18,831 (92.15) 627 (3.00) 623 (3.05) 20,294 (96.88) 19,811 (96.95) 7,459 (35.65) 6,347 (30.34) 5,785 (27.65) 1,330 (6.36)

7,222 (35.34) 6,409 (31.36) 5,528 (27.05) 1,274 (6.24)

17,489 (83.60) 12,968 (63.46) 1,088 (5.20) 3,354 (16.41) 605 (2.89) 2,583 (12.64) 603 (2.88) 1,034 (5.06) 1,136 (5.43) 495 (2.42) 570 (2.72) 2,317 (11.07) 7,774 (37.16) 1,765 (8.44) 5,516 (26.37) 2,979 (14.24)

437 (2.14) 1,927 (9.43) 8,100 (39.64) 1,829 (8.95) 5,308 (25.98) 2,833 (13.86)

788 (3.77) 2,530 (12.09)

833 (4.08) 2,702 (13.22)

4,053 (19.37)

3,975 (19.45)

4,658 (22.26)

4,615 (22.58)

5,304 (25.35)

4,970 (24.32)

3,588 (17.15)

3,339 (16.34)

5,981 (28.59) 5,817 (28.47) 14,940 (71.41) 14,617 (71.53) 8,462 (40.45) 8,688 (41.53) 3,771 (18.02)

8,107 (39.67) 8,960 (43.85) 3,366 (16.48)

The gender category “crossdresser” (n=697), which could be selected by survey participants, was dropped from analysis for being unrelated to other transgender identities. No demographic patterns in participant selection of this identity, such as by age group, were detected. AFAB GQ/NB, assigned female at birth genderqueer/nonbinary; AMAB GQ/NB, assigned male at birth genderqueer/nonbinary.

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Those who were disabled (OR=1.94, p<0.001) and those who were low income (OR=1.80, p<0.001) had higher odds of experiencing trans-related denials, in comparison with those not disabled or of high income, respectively. Being aged 24−44 years was associated with greater odds of experiencing trans-related denials (OR=1.40, p<0.001) and other healthcare denials (OR=2.19, p<0.001). Those with an associate’s degree had higher odds (OR=1.36, p<0.01) of experiencing trans-related care denials in comparison with those whose highest educational attainment was a bachelor’s degree.

DISCUSSION In the entire sample of TNB participants, 7.85% experienced a denial of care around trans-related issues, and 3.05% experienced refusal of care around general medical issues, indicating that there continues to be an issue with TNB experiencing denials of care. Findings also indicate that these experiences are more common among trans women and trans men than they are for nonbinary individuals, either AMAB or AFAB, potentially because of nonbinary individuals not being out as such to their healthcare providers or not needing as much trans-related health care as many nonbinary individuals may not opt for medical intervention.39 Not surprisingly, participants with incomes lower than $50,000 were more likely to experience refusal of care, either trans-related care or general care, than those making more than $100,000. This finding is likely because those with more disposable income can be discerning about selecting providers, may be able to travel farther to see more affirming providers, and may even select trans health-inclusive providers who are not covered by insurance. Those at lower-income levels may not have these options. Individuals with less than a high school diploma were more than twice and those with a high school diploma or GED were 1.5 times as likely to be denied general health care than those with a bachelor’s degree, whereas those with an associate’s degree were more likely to be refused trans health-related care than those with a bachelor’s degree. This finding indicates that both income and education levels may play a role in accessing providers and getting needed health care. Those aged 25−44 years were more likely to experience denials with trans-related care than those aged 18−24 years and all groups aged 25 years and older were more likely to experience denials with general health care, which mirrors some experiences at the intersection of ageism and gender-based discrimination that have

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Table 2. Multivariate Logistic Regression of Denials of Care by Healthcare Professionals

Variable Gender Trans women Trans men AFAB GQ/NB AMAB GQ/NB Income >$100,000 Mid-high income ($50,000−$100,000) Mid income ($25,000−$49,999) Low-mid income ($10,000−$24,999) Low income (<$10,000) No income Race White Latino/a/Hispanic Black Asian/Native Hawaiian/Pacific Islander Biracial/multiracial Age, years 18‒24 24‒44 ≥45 Disability Education Bachelor’s degree Less than high school High school graduate. (including GED) Some college (no degree) Associate’s degree Graduate or professional degree

Doctor or healthcare provider refused to give trans-related care (n=20,103) (Weighted n=19,667)

Doctor or healthcare provider refused to give other health care (e.g., physicals, etc.) (n=20,955) (Weighted n=20,459)

Ref 0.88 (0.07) 0.33*** (0.04) 0.48*** (0.08)

Ref 0.94 (0.12) 0.73* (0.11) 0.55* (0.15)

Ref 1.14 (0.13) 1.34* (0.16) 1.47** (0.18) 1.80*** (0.25) 1.27 (0.25)

Ref 1.24 (0.24) 1.65** (0.32) 1.49* (0.30) 2.65*** (0.55) 1.80* (0.52)

Ref 0.89 (0.11) 0.69* (0.12) 0.97 (0.16) 1.25 (0.15)

Ref 0.82 (0.17) 1.08 (0.23) 0.84 (0.24) 1.48* (0.27)

Ref 1.40*** (0.12) 0.95 (0.11) 1.94*** (0.14)

Ref 2.19*** (0.31) 1.59** (0.31) 2.21*** (0.26)

Ref 1.19 (0.30) 1.00 (0.13) 1.10 (0.10) 1.36** (0.16) 0.80 (0.09)

Ref 2.23* (0.75) 1.56* (0.31) 1.19 (0.17) 1.03 (0.22) 1.03 (0.19)

Note: Values are OR (linearized SE). Boldface indicates statistical significance (*p<0.05; **p<0.01; ***p<0.001). AFAB GQ/NB, assigned female at birth genderqueer/nonbinary; AMAB GQ/NB, assigned male at birth genderqueer/nonbinary.

been noted in research with TNB adults.40 Similarly, those TNB participants with disabilities were significantly more likely to experience being refused both types of care, in line with findings from previous research.21,41 Race was also significant and nuanced across racial identities. In line with much of the current research, biracial/multiracial participants were also significantly more likely to be denied general care.21,22 Black individuals were less likely to be refused trans-related health care than their white counterparts. It should be noted that with all identities, and especially race, it can be difficult to figure out whether an experience of discrimination might be due to gender, race/age/disability status, or both, indicating a need for more research across these identity groups. & 2020

These findings suggest there is a need for more qualitative and mixed methods research to assess better why these denials are happening at different rates for different subgroups,42 as well as to assess the impact of denials on these populations, particularly those who hold multiple marginalized identities. Existing research explores the current demographic factors and health needs as related to care experience,42,43 yet it is currently unclear how care denial rates are connected to physical and mental health disparities faced by these individuals.9 Research in this area needs to be more intersectional, taking multiple identities and lived experiences under consideration. These findings support previous studies’ call for better training of healthcare providers around both the general

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healthcare needs and trans-specific healthcare needs of TNB patients. Class, race, education level, gender, disability status, and age are all connected to the likelihood of a TNB individual being refused access to care, so training for providers, medical students, and even office staff should include an in-depth look at how oppression may play across identities and even be compounded when someone holds multiple marginalized identities. The training should be ongoing, rather than just 1-time introductions to transgender and nonbinary identities, to ensure that all staff, including new hires, are culturally responsive. Introductory trainings may include information on the history of these populations, discussion of identity versus expression, and best practices, such as changing intake forms to be more inclusive and clinically competent, offering gender-inclusive restrooms, encouraging providers to share their own pronouns with all patients, and practicing using correct pronouns and names that may differ from the names on IDs or insurance cards. It is clear that even within the overall TNB population, specific subgroups experience higher rates of denials, indicating how some subgroups are privileged even within their marginalization. Training should also explore different experiences across gender, class, disability status, age, and race/ethnicity, noting that different groups experience denials at different rates and differently across contexts. In addition, higher-level and more nuanced training should be offered to specialists and general practitioners, offering information such as best practices for checking hormone levels for prescribing hormone replacement therapy, care for trans-specific surgery recoveries, and referrals when trans-related health care is outside the scope of general practice. Providers may be uncomfortable with prescribing hormones to and referring out TNB patients and therefore opt to deny care in the first place. However, it would also be helpful to have additional research conducted with providers themselves on why they might consider denying care to this population to understand better what training and interventions would be most useful.

Limitations This study is a secondary analysis of a cross-sectional survey, meaning that it only provides a snapshot of the issues faced by the TNB population. Findings might be different in the future based on political climate; laws and policies of individual states, counties, and cities; and many other variables. There is a clear need for longitudinal and cohort studies of TNB individuals. As always with secondary data analysis, the authors were constrained by the questions asked and the language used in the original survey; more

information about each instance of denial of care, including type of provider (regular or specialist), how participants selected the provider, and how many instances of denial of care occurred, would all be interesting topics to study in the future to better understand these experiences and think of ways to prevent them. This sample was a purposive sample of TNB individuals. As there is no current representative data on this population, there is no way to know how accurately the data reflect the U.S. TNB population. It is crucial to collect representative data better to inform interventions and future research. Native American and Middle Eastern respondents had to be dropped owing to small sample sizes, indicating the need to oversample smaller subgroups to include their experiences.

CONCLUSIONS This paper has provided evidence that TNB experiences with health discrimination vary by gender identity and other intersecting social identities. Although attending to gender-based discrimination and transphobia is broadly important, it is critical to attend to how care denials are experienced differently across the social locations. This information could inform training interventions with healthcare providers who offer both transgender-based and routine care and improve health care and outcomes across individuals in the TNB population.

ACKNOWLEDGMENTS The authors thank the National Center for Transgender Equality and the researchers of the 2015 U.S. Trans Survey for allowing us to use this data, and the transgender and nonbinary individuals who were willing to share their experiences. No financial disclosures were reported by the authors of this paper.

SUPPLEMENTAL MATERIAL Supplemental materials associated with this article can be found in the online version at https://doi.org/10.1016/j. amepre.2019.11.014.

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