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Measuring and Addressing Inequities in Health Care Access for Transgender and Gender Diverse Youth in the U.S.

      See Related Article on p.472
      Inequities in health care access and outcomes among transgender and gender diverse (TGD) individuals in the U.S. are well documented [
      • Rich A.J.
      • Scheim A.I.
      • Koehoorn M.
      • Poteat T.
      Non-HIV chronic disease burden among transgender populations globally: A systematic review and narrative synthesis.
      ,
      • Lett E.
      • Dowshen N.L.
      • Baker K.E.
      Intersectionality and health inequities for gender minority Blacks in the U.S.
      ,
      • Lett E.
      • Asabor E.N.
      • Beltrán S.
      • Dowshen N.
      Characterizing health inequities for the U.S. transgender Hispanic population using the Behavioral Risk Factor Surveillance System.
      ,
      • Dinger M.K.
      • Brittain D.R.
      • Patten L.
      • et al.
      Gender identity and health-related outcomes in a national sample of college students.
      ,
      • Kachen A.
      • Pharr J.R.
      Health care access and utilization by transgender populations: A United States transgender survey study.
      ,
      • White Hughto J.M.
      • Rose A.J.
      • Pachankis J.E.
      • Reisner S.L.
      Barriers to gender transition-related healthcare: Identifying underserved transgender adults in Massachusetts.
      ,
      • Connolly M.D.
      • Zervos M.J.
      • Barone C.J.
      • et al.
      The mental health of transgender youth: Advances in understanding.
      ]. However, our collective knowledge of how these inequities vary across communities within the TGD population (e.g., among adolescent communities, nonbinary communities, or communities of color) is more limited [
      • Lett E.
      • Dowshen N.L.
      • Baker K.E.
      Intersectionality and health inequities for gender minority Blacks in the U.S.
      ,
      • Lett E.
      • Asabor E.N.
      • Beltrán S.
      • Dowshen N.
      Characterizing health inequities for the U.S. transgender Hispanic population using the Behavioral Risk Factor Surveillance System.
      ,
      • Poquiz J.L.
      • Coyne C.A.
      • Garofalo R.
      • Chen D.
      Comparison of gender minority stress and resilience among transmasculine, transfeminine, and nonbinary adolescents and young adults.
      ,
      • Goldenberg T.
      • Jadwin-Cakmak L.
      • Popoff E.
      • et al.
      Stigma, gender affirmation, and primary healthcare use among Black transgender youth.
      ]. Efforts to increase our understanding of the specific needs and resiliencies of subgroups of the broader TGD population are critical to developing and implementing targeted policy-, institutional-, and community-level interventions to eliminate inequities in health care access and outcomes.
      Despite notable advances in the collection of gender identity information on major national surveys, the limited availability of data that is well suited to the task of drawing generalizable inferences about health care access and outcomes across TGD subgroups remains a substantial barrier to building an actionable knowledge base [
      • Patterson J.G.
      • Jabson J.M.
      • Bowen D.J.
      Measuring sexual and gender minority populations in health surveillance.
      ,
      • Durso L.E.
      Progress and challenges in sexual orientation and gender identity measurement in the first year of the Trump administration.
      ]. In the absence of such data, researchers, policymakers, advocates, and community members rely on a growing collection of data sources and research studies to measure and address health inequities. Importantly, individual studies from this shared knowledge base provide critical context to one another and must be used in conjunction as we interpret, share, and apply new findings. Recent studies using survey data (drawn from both probability and nonprobability samples), health insurance claims data, and qualitative data have, in combination, begun to paint a more nuanced picture of health among TGD adults [
      • Lett E.
      • Dowshen N.L.
      • Baker K.E.
      Intersectionality and health inequities for gender minority Blacks in the U.S.
      ,
      • Lett E.
      • Asabor E.N.
      • Beltrán S.
      • Dowshen N.
      Characterizing health inequities for the U.S. transgender Hispanic population using the Behavioral Risk Factor Surveillance System.
      ,
      • Kachen A.
      • Pharr J.R.
      Health care access and utilization by transgender populations: A United States transgender survey study.
      ,
      • Gamarel K.E.
      • King W.M.
      • Mouzoon R.
      • et al.
      A “tax” on gender affirmation and safety: Costs and benefits of intranational migration for transgender young adults in the San Francisco Bay area.
      ,
      • Jasuja G.K.
      • de Groot A.
      • Quinn E.K.
      • et al.
      Beyond gender identity disorder diagnoses codes: An examination of additional methods to identify transgender individuals in administrative databases.
      ,
      • Ehrenfeld J.M.
      • Gottlieb K.G.
      • Beach L.B.
      • et al.
      Development of a natural language processing algorithm to identify and evaluate transgender patients in electronic health record system.
      ]. However, our knowledge of health care access and outcomes among TGD adolescents is more limited. In this issue of the Journal of Adolescent Health, Nocka et al. [
      • Nocka K.
      • Montgomery M.C.
      • Progovac A.
      • Guss C.E.
      • Chan P.A.
      • Raifman J.
      Primary care for transgender adolescents and young adults in Rhode Island: an analysis of the All Payers Claims Database.
      ] provide important insight into issues of preventive health care access for TGD adolescents.
      Nocka et al. [
      • Nocka K.
      • Montgomery M.C.
      • Progovac A.
      • Guss C.E.
      • Chan P.A.
      • Raifman J.
      Primary care for transgender adolescents and young adults in Rhode Island: an analysis of the All Payers Claims Database.
      ] use the Rhode Island All Payers Claims Database to study preventive health care use among adolescents (aged 10–25 years) in 2011 through 2017. Based on previous studies of TGD individuals in health insurance claims, they define TGD adolescents as those with International Classification of Diseases, Ninth Revision, and/or International Classification of Diseases, Tenth Revision, codes related to TGD identities and compare this sample to adolescents without these codes on a series of preventive health utilization measures [
      • Progovac A.M.
      • Cook B.L.
      • Mullin B.O.
      • et al.
      Identifying gender minority patients’ health and health care needs in administrative claims data.
      ]. Nocka et al. [
      • Nocka K.
      • Montgomery M.C.
      • Progovac A.
      • Guss C.E.
      • Chan P.A.
      • Raifman J.
      Primary care for transgender adolescents and young adults in Rhode Island: an analysis of the All Payers Claims Database.
      ] find that TGD adolescents with relevant diagnosis codes use similar levels of preventive health services (including influenza vaccination, HPV vaccination, and well visits) when compared with cisgender adolescents in their sample. They also report that TGD adolescents in their sample were more likely to have cholesterol and body mass index screenings, compared with cisgender adolescents, a finding that may be attributable to the recommendation to perform cholesterol screening before initiating gender-affirming hormone therapy.
      Nocka et al. [
      • Nocka K.
      • Montgomery M.C.
      • Progovac A.
      • Guss C.E.
      • Chan P.A.
      • Raifman J.
      Primary care for transgender adolescents and young adults in Rhode Island: an analysis of the All Payers Claims Database.
      ] provide novel insight into TGD health care utilization beyond what is captured in survey data. However, as Nocka et al. [
      • Nocka K.
      • Montgomery M.C.
      • Progovac A.
      • Guss C.E.
      • Chan P.A.
      • Raifman J.
      Primary care for transgender adolescents and young adults in Rhode Island: an analysis of the All Payers Claims Database.
      ] highlight in their discussion, TGD samples identified using diagnosis-based approaches in health insurance claims include only a small subset of TGD individuals and are not representative of the broader TGD population or subgroup in question. This is particularly important, given that the diagnosis codes related to identifying TGD individuals in claims data include pathologizing language and may fail to appear on a health care claim for a number of reasons (e.g., a patient may not disclose their TGD identity to their health care provider or a health care provider may avoid using these codes due to perceived stigma). Nocka et al. [
      • Nocka K.
      • Montgomery M.C.
      • Progovac A.
      • Guss C.E.
      • Chan P.A.
      • Raifman J.
      Primary care for transgender adolescents and young adults in Rhode Island: an analysis of the All Payers Claims Database.
      ] emphasize that their findings are generalizable to TGD adolescents who are insured, have access to the health care system, and receive a diagnosis code related to their TGD identity, a group which comprises approximately .25% of all adolescents in their sample. In contrast, a 2017 report from the Williams Institute estimates that, in Rhode Island, .62% of 13- to 17-year-olds and .56% of 18- to 24-year-olds identify as transgender [
      • Herman J.L.
      • Flores A.R.
      • Brown T.N.T.
      • et al.
      Age of individuals who identify as transgender in the United States.
      ]. Approximately half of TGD adolescents are missing from the sample identified by Nocka et al [
      • Nocka K.
      • Montgomery M.C.
      • Progovac A.
      • Guss C.E.
      • Chan P.A.
      • Raifman J.
      Primary care for transgender adolescents and young adults in Rhode Island: an analysis of the All Payers Claims Database.
      ]. and their preventive health care service utilization patterns or needs may be different from those reported. Furthermore, the absence of data on individuals' race and ethnicity in the Rhode Island All Payers Claims Database complicates our interpretation and potential application of these findings. In the first ongoing National Institutes of Health–funded, multisite clinical trial of gender-affirming care for youth, including four of the largest pediatric gender clinics in the U.S., Chen et al. report that only 3%–4% of participants were Black raising concerns about lack of access for racial and ethnic minority TGD youth [
      • Chen D.
      • Abrams M.
      • Clark L.
      • et al.
      Psychosocial characteristics of transgender youth seeking gender-affirming medical treatment: Baseline findings from the Trans Youth Care Study.
      ]. Nocka et al. [
      • Nocka K.
      • Montgomery M.C.
      • Progovac A.
      • Guss C.E.
      • Chan P.A.
      • Raifman J.
      Primary care for transgender adolescents and young adults in Rhode Island: an analysis of the All Payers Claims Database.
      ] note that their findings complement studies using Medicare claims, national survey data, and clinic-level data, which find similar primary care utilization among transgender and cisgender adults [
      • Progovac A.M.
      • Cook B.L.
      • Mullin B.O.
      • et al.
      Identifying gender minority patients’ health and health care needs in administrative claims data.
      ,
      • Gonzales G.
      • Henning-Smith C.
      Barriers to care among transgender and gender nonconforming adults.
      ,
      • Goldstein D.A.
      • Sarkodie E.
      • Hardy W.D.
      Transgender and nontrans patients do not receive statistically different quality primary care at Whitman-Walker Health, 2008-2016.
      ]. Although less is known about TGD youth, Rider et al. provide relevant insight into health care access among 9th and 11th grade students using the 2016 Minnesota Student Survey [
      • Rider G.N.
      • McMorris B.J.
      • Gower A.L.
      • Coleman E.
      • Eisenberg M.E.
      Health and care utilization of transgender and gender nonconforming youth: A population-based study.
      ]. They found that adolescents with TGD identities reported fewer preventive medical checkups, compared with cisgender peers. We also know that access to health care for TGD people is affected by both experiences of discrimination and state-level policy environments [
      • White Hughto J.M.
      • Rose A.J.
      • Pachankis J.E.
      • Reisner S.L.
      Barriers to gender transition-related healthcare: Identifying underserved transgender adults in Massachusetts.
      ,
      • Goldenberg T.
      • Reisner S.L.
      • Harper G.W.
      • et al.
      State-level transgender-specific policies, race/ethnicity, and use of medical gender affirmation services among transgender and other gender-diverse people in the United States.
      ].
      In addition, Nocka et al. found that having an annual well visit was associated with receiving other essential preventive health services (e.g., HIV screening, sexually transmitted infection screening, cholesterol screening) among cisgender adolescents in their sample, but not among TGD adolescents. Based on this result, the authors concluded that preventive care for TGD adolescents in Rhode Island may be more likely to occur alongside gender-affirming specialty care, rather than in primary care settings. With this new insight into the potential link between the use of preventive health services and gender-affirming care, it is important to consider what preventive care use might look like for TGD adolescents with limited access to gender-affirming specialty care. These findings underscore the need to expand access to gender-affirming care by increasing the number of providers trained to provide gender-affirming care, requiring health insurers to cover gender-affirming services, and decreasing discrimination in health care settings through comprehensive nondiscrimination policies at the federal, state, and institutional level. Furthermore, it is critical that federal and state governments move to increase collection of data on race, ethnicity, and gender identity to strengthen our collective knowledge of TGD health inequities and allow for the development of evidence-based interventions to address these inequities [
      • Patterson J.G.
      • Jabson J.M.
      • Bowen D.J.
      Measuring sexual and gender minority populations in health surveillance.
      ,
      • Streed C.G.
      • Grasso C.
      • Reisner S.L.
      • Mayer K.H.
      Sexual orientation and gender identity data collection: Clinical and public health importance.
      ].

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