WWaasshhiinnggttoonn aanndd LLeeee JJoouurrnnaall ooff CCiivviill RRiigghhttss aanndd SSoocciiaall JJuussttiiccee Volume 21 Issue 1 Article 12 9-2014 ““JJuussttiiccee iiss WWhhaatt LLoovvee LLooookkss LLiikkee iinn PPuubblliicc””:: HHooww tthhee AAffffoorrddaabbllee CCaarree AAcctt FFaallllss SShhoorrtt oonn TTrraannssggeennddeerr HHeeaalltthh CCaarree AAcccceessss Rachel C. Kurzweil Washington and Lee University School of Law Follow this and additional works at: https://scholarlycommons.law.wlu.edu/crsj Part of the Civil Rights and Discrimination Commons, Human Rights Law Commons, and the Labor and Employment Law Commons RReeccoommmmeennddeedd CCiittaattiioonn Rachel C. Kurzweil, “Justice is What Love Looks Like in Public”: How the Affordable Care Act Falls Short on Transgender Health Care Access, 21 Wash. & Lee J. Civ. Rts. & Soc. Just. 196 (2014). Available at: https://scholarlycommons.law.wlu.edu/crsj/vol21/iss1/12 This Note is brought to you for free and open access by the Washington and Lee Journal of Civil Rights and Social Justice at Washington and Lee University School of Law Scholarly Commons. It has been accepted for inclusion in Washington and Lee Journal of Civil Rights and Social Justice by an authorized editor of Washington and Lee University School of Law Scholarly Commons. For more information, please contact [email protected]. 1 “Justice is What Love Looks Like in Public” : How the Affordable Care Act Falls Short on Transgender Health Care Access Rachel C. Kurzweil∗ Table of Contents Introduction .................................................................................. 197 I. Background on Transgender Health Care Issues ......................... 200 A. Definitions ............................................................................. 200 B. Transgender Health Care Needs ........................................... 205 C. Consequences of Inability to Obtain Health Care ................. 208 D. Barriers to Care ..................................................................... 211 1. Employment and Workplace Discrimination Limit Transgender Access to Care ................................. 211 2. Discrimination by Private Insurance Companies ........... 214 3. Discrimination with Public Health Programs ................. 217 II. What the ACA and United States v. Windsor Mean for LGBT Health .......................................................................... 221 A. Improvements in Transgender Health Care Access .............. 222 1. ACA Improvements to Access and Nondiscrimination .......................................................... 222 2. ACA Increases Access to Mental Health and Substance Abuse Disorder Services ........................ 228 * Candidate for J.D., Washington and Lee University School of Law, May 2015; B.A. Mount Holyoke College, May 2010. I would like to thank my faculty advisor, Professor Timothy Jost, my friends and family, and the Editorial Board of the Washington and Lee Journal of Civil Rights and Social Justice for all of their support during the note writing process. 1. Zack Ford, Laverne Cox: ‘Loving Trans People Is a Revolutionary Act,’ THINK PROGRESS, http://thinkprogress.org/lgbt/2014/01/31/3235351/laverne-cox-loving-trans-peop le-revolutionary-act/ (last visited Jan. 31, 2014) (detailing a speech Cox gave at the National Conference on LGBT Equality hosted by the National Gay and Lesbian Task Force quoting philosopher Cornell West). 196 “JUSTICE IS WHAT LOVE LOOKS LIKE IN PUBLIC” 197 3. Windsor Improvements .................................................. 231 4. Ban Lifted on Medicare Discrimination ......................... 241 B. Continuing Problems/Shortcomings in Health Care Access ........................................................................... 243 1. Non-Discrimination Provisions Not as Strong as Many Believe ............................................................. 244 2. Discrimination Through Defining Transition Surgery as Cosmetic ....................................................... 245 3. Discrimination Through “Medically Necessary Standard” ........................................................................ 248 4. Care problems After Transition Has Occurred ............... 251 III. Current Proposals and Solutions .................................................. 252 A. Increase Health Care Access by Limiting Employment Discrimination ................................................. 253 B. Discriminatory Health Care Practices Need to Be Addressed .............................................................................. 256 1. HHS Needs to Promulgate Further Non-Discrimination Provisions with an LGBT Focus ................................................................... 257 2. HHS or Other Government Agencies Should Clarify What “Medical Necessity” is in Relation to Transition-Related Care ............................... 258 C. Require Coverage of Transition-Related Care in Public and Private Insurance Plans ....................................... 261 IV. Conclusion ................................................................................... 268 Introduction “Justice is what love looks like in public” is an oft-quoted statement from Cornell West that has become a catchphrase for the transgender rights movement.2 No truer words could be spoken in regards to the treatment of transgender individuals in the United States, particularly in the realm of health care access. Few groups have faced as many limitations and instances of injustice in access to health treatment and coverage. The transgender community is one of the most vulnerable and underserved 2. See id. (explaining the transgender movement’s use of the Cornell West quote). 198 21 WASH. & LEE J. CIVIL RTS. & SOC. JUST. 196 (2014) populations in the American Health Care system.3 Few groups confront as many barriers to health care as transgender patients. Transgender individuals are frequently denied access to health services because of their gender identity or expression, and many frequently report feeling harassed in medical offices and hospitals. 4 Those who are able to locate transgender-favorable care often find they cannot access services due to lack of financial resources or insurance.5 Some transgender individuals face additional hurdles if they wish to undergo transition-related care, because most insurance policies exclude coverage for gender-confirming interventions and surgeries.6 Transition-related health care includes the use of psychotherapy, hormone therapy, and/or surgical procedures for treating the psychological diagnosis of gender dysphoria.7 An overwhelming majority of medical authority recognizes transition-related care as an effective and medically necessary treatment for gender dysphoria.8 Yet many providers and insurance companies refuse to treat or recognize the necessity of transition-related care. Further, the transgender population’s lack of access to care is even more striking when one considers the group’s 3. AGENCY FOR HEALTHCARE RESEARCH & QUALITY, U.S. DEP’T OF HEALTH & HUMAN SERVS., NATIONAL HEALTHCARE DISPARITIES REPORT, 229–32 (2012), available at http://www.ahrq.gov/research/findings/nhqrdr/nhdr13/2013nhdr.pdf. 4. See JAMIE M. GRANT ET AL., NAT’L CTR. FOR TRANSGENDER EQUALITY & NAT’L GAY & LESBIAN TASK FORCE, INJUSTICE AT EVERY TURN: A REPORT OF THE NATIONAL TRANSGENDER DISCRIMINATION SURVEY, EXECUTIVE SUMMARY 73–74 (2011), available at http://www.endtransdiscrimination.org/PDFs/NTDS_Report.pdf (reporting that 19% of a national sample of transgender individuals had been refused care by a medical provider due to their transgender or gender-nonconforming status; 28% of respondents experienced verbal harassment in a medical setting; 2% were physically attacked in a doctor’s office). 5. Id. 6. See id. at 77 (noting that high costs render care inaccessible to most transgender people). 7. See ELI COLEMAN ET AL., WORLD PROF’L ASSOC. FOR TRANSGENDER HEALTH, STANDARDS OF CARE FOR THE HEALTH OF TRANSSEXUAL, TRANSGENDER AND GENDER NONCONFORMING PEOPLE 9–10 (7th ed. 2012), available at http://www.wpath.org/uploaded_files/140/files/Standards%20of%20Care,%20V7%20Full% 20Book.pdf (detailing different treatment procedures used to treat gender dysphoria and the triadic approach taken by the international medical community). 8. See id. at 5 (describing medical treatment options for gender dysphoria as medically necessary for many transgender individuals); see also Am. Med. House of Delegates, Res. No. 114, Removing Barriers to Care for Transgender Patients (June 16, 2008), available at http://www.tgender.net/taw/ama_resolutions.pdf (recognizing the World Professional Association for Transgender Health (WPATH) as the leading international, interdisciplinary professional organization devoted to the understanding and treatment of gender identity disorders). “JUSTICE IS WHAT LOVE LOOKS LIKE IN PUBLIC” 199 elevated risk for a number of serious health problems, such as high rates of HIV and substance abuse problems.9 In the past two years, LGBT Americans have witnessed improvements in their rights. The Patient Protection and Affordable Care Act (ACA)10 and the Supreme Court’s decision in United States v. Windsor11 have both significantly changed rights of access to health care and federal benefits for the LGBT community. The ACA is the most sweeping change in the United States Health Care system since the passage of the Medicaid and Medicare statutes in 1965.12 In restructuring the health care system, the ACA creates a platform to improve access to medical care for the LGBT community and importantly, transgender individuals. Specifically, the ACA creates a means to secure explicit protections for gender confirming care and gender-confirming procedures. The ACA also puts an end to years of discriminatory insurance practices that have isolated and harmed LGBT individuals. But the ACA falls short in two areas: coverage and access for same-sex partners and transgender discrimination. This is not to say that health care access for the LGBT community has not been improved, but the American health care system has a long way to go, particularly in regards to healthcare access for transgender individuals. This Note examines the current landscape of transgender health care, the changes sparked by the implementation of the ACA and the effect of Windsor, as well as the shortcomings in the ACA’s treatment of transgender healthcare access. Part I provides a background on Transgender and LGB health care issues. It will examine the type of medical care needed by the transgender community as well as barriers to access. Part II will address how the ACA and the Supreme Court’s decision on DOMA in Windsor affected LGBT healthcare access and delivery. This section will examine the improvements as well as the issues that still remain. Finally, Part III will address proposals that have been made to improve health care access for 9. See GRANT ET AL., supra note 4, at 80–83 (finding that 41% of transgender individuals have attempted suicide at one point in their life and that individuals experienced high rates of physical violence, sexual assault and HIV as well as above average rates of drug and alcohol abuse). 10. Patient Protection and Affordable Care Act, 42 U.S.C. § 18001 (2010). 11. United States v. Windsor, 133 S.Ct. 2675 (2013). 12. See David Leonhardt, In Health Bill, Obama Attacks Wealth Inequality, N.Y. TIMES, Mar. 24, 2010, available at http://www.nytimes.com/2010/03/24/business/24leonhardt.html?_r=0 (asserting that the bill is the federal government’s biggest attack on economic inequality since inequality began rising more than three decades ago). 200 21 WASH. & LEE J. CIVIL RTS. & SOC. JUST. 196 (2014) transgender individuals. These proposals include ending employment discrimination, clarifying medical necessity review standards, and reforming state Medicaid programs. This section will focus on the Employment Non-Discrimination Act and different insurance and health care related non-discrimination directives passed by the states. The section will also examine recent state department of health and state department of insurance notices that effectively eliminate transition-related health care coverage discrimination. This Note concludes by arguing that, overall, the ACA gives judges and policymakers a rare opportunity to redirect the way transgender health care is treated. This Note advocates that policy-makers should address transgender health care disparities by issuing further guidance on the ACA’s nondiscrimination provisions, which will turn give advocates and judges the ability to enable and enforce positive changes to the health care system. How effective the ACA can be in expanding transgender-related health care access and addressing transgender specific health needs is dependent on the passage of further non-discrimination provisions. I. Background on Transgender Health Care Issues A. Definitions “Transgender” is generally considered an umbrella term for people whose “gender identity, expression, or behavior is different from those typically associated with their assigned sex at birth.”13 The term includes but is not limited to transsexuals, cross-dressers, androgynous people, and gender non-conforming individuals.14 It is also important to distinguish transgender from the LGB community. Gender identity is one’s own, internal, personal sense of being a man or woman while sexual orientation describes a person’s enduring physical, romantic, and emotional attraction 13. See Transgender 101, GLAAD, http://www.glaad.org/transgender/trans101 (last visited Feb. 6, 2013) (stating that “transgender is an umbrella term”) [hereinafter Transgender 101]; see also JOAN M. BURDA, GAY, LESBIAN, AND TRANSGENDER CLIENTS: A LAWYER’S GUIDE 156 (2008) (detailing a basic overview of transgender issues); see also NATIONAL CENTER FOR TRANSGENDER EQUALITY, TRANSGENDER TERMINOLOGY (2014), available at http://transequality.org/Resources/NCTE_TransTerminology.pdf (defining the term “transgender” and clarifying it as an umbrella term). 14. See NAT’L CTR. FOR TRANSGENDER EQUALITY, supra note 13 (defining terms transgender and transsexual). “JUSTICE IS WHAT LOVE LOOKS LIKE IN PUBLIC” 201 to another person.15 Transgender people may be straight, lesbian, gay or bisexual.16 “Transsexual” is a specific classification that falls under the “transgender” umbrella that is used to describe individuals who have an internal gender identity that does not “match the sex assigned at birth.”17 Some transsexuals seek to rectify this condition through psychological help and many use hormone therapy or sex reassignment surgery (SRS) to correct their biological sex.18 In the United States, transsexuals must be diagnosed with some type of gender identity disorder in order to pursue medical treatment.19 The period during which a person begins living as the gender with which they identify rather than the gender they were assigned at birth is generally known as “transition.”20 The transition period may or may not include medical and legal aspects such as taking hormones, having surgery, or changing identity documents.21 Not all transsexual individuals undergo transition-related surgery or other procedures; some transsexuals have no desire to do so and can successfully transition without it.22 15. See Transgender 101, supra note 13 (stating that transgender is an identity not a sexual orientation). 16. Id. 17. Id. 18. See BURDA, supra note 13, at 156 (detailing a basic overview of transgender issues); see also NAT’L CTR. FOR TRANSGENDER EQUALITY, supra note 13 (defining the term “transgender” and explaining that transition may include medical and legal aspects such as changing one’s name on a driver’s license). 19. See Transgender Rights Toolkit: Transition-Related Health Care, LAMBDA LEGAL, http://www.lambdalegal.org/sites/default/files/publications/downloads/trt_transition-related- health-care_3.pdf (last visited Feb. 23, 2014) (detailing how individuals obtain transition-related care and that any form of hormone treatment or surgery requires a medical diagnosis; see also AM. PSYCHIATRIC ASSOC., DIAGNOSTIC AND STATISTICAL MANUAL OF MENTAL DISORDERS (5th ed. 2013); see also AM. PSYCHIATRIC ASS’N., Gender Dysphoria Fact Sheet (2013), available at http://www.dsm5.org/Documents/Gender%20Dysphoria%20Fact%20Sheet.pdf [hereinafter DSM-V Fact Sheet] (stating that part of the motivation for changing the diagnostic term from gender identity disorder to gender dysphoria was to create a term that is less discriminatory while still providing a diagnostic term that is necessary for treatment and insurance coverage). 20. See NAT’L CTR. FOR TRANSGENDER EQUALITY, supra note 13 (defining “transition” as the time when a person begins living as the gender with which they identify rather than the gender they were assigned at birth, which often includes changing one’s first name and dressing and grooming differently). 21. Id. 22. See Transgender Equality, HUMAN RIGHTS CAMPAIGN, http://www.hrc.org/resources/entry/transgender-faq (last visited Feb. 23, 2014) (stating that 202 21 WASH. & LEE J. CIVIL RTS. & SOC. JUST. 196 (2014) Additionally, there are a variety of terms used to address transgender individuals post transition. According to the National Center for Transgender Equality, “transgender man,” is generally adopted a term for a transgender person who currently identifies as a man; while “transgender woman” describes a transgender person who currently identifies as a women.23 Gender Identity Disorder (GID) is the previous diagnostic term used for transsexuals seeking medical remedies to their discontent with their assigned sex.24 GID was defined in the American Psychiatric Diagnostic Manual of Mental Disorders IV (DSM-IV).25 The DSM-IV focused on two components that must present to make a GID diagnosis: there must be evidence of a strong and persistent cross-gender identification and there must be evidence of persistent discomfort about one’s assigned sex or a sense of inappropriateness in the gender role of that sex.26 The DSM-IV also lists specific diagnostic criteria for GID: (1) a strong and persistent cross-gender identification, (2) persistent discomfort with his or her sex, (3) the disturbance is not concurrent with a physical intersex condition, (4) the disturbance causes clinically significant distress or impairment in social, occupational, or other important areas of functioning.27 The GID diagnosis was generally disliked by the transgender community because it made being transgender seem like a mental disorder, which included a stigma and represented a lack of understanding about the condition.28 Beginning in 2010, there was a move by transgender advocates many people can successfully transition without surgery—some have no desire to pursue surgeries or medical intervention); see also LGBT Resources: Definition of Terms, UC BERKELEY GENDER EQUITY RESOURCE CTR., http://geneq.berkeley.edu/lgbt_resources_definiton_of_terms#transman (last visited Feb. 23, 2014) (stating that not all individuals choose to transition). 23. See NAT’L CTR. FOR TRANSGENDER EQUALITY, supra note 13 (defining transgender man). 24. See AM. PSYCHIATRIC ASSOC., DIAGNOSTIC AND STATISTICAL MANUAL OF MENTAL DISORDERS 576–82 (4th ed. 2000), available at https://www.aclu.org/files/ images/asset_upload_file155_30369.pdf. [hereinafter DSM-IV] (providing standard criteria for the classification of mental disorders). 25. Id. at 576. 26. Id. at 576–77. 27. Id. 28. See Wynne Parry, Gender Dysphoria: DSM-5 Reflects Shift in Perspective On Gender Identity, HUFFINGTON POST (June 4, 2013), http://www.huffingtonpost.com/2013/06/04/gender-dysphoria-dsm-5_n_3385287.html (noting that transgender advocates have pointed out that distress is not an inherent part of “JUSTICE IS WHAT LOVE LOOKS LIKE IN PUBLIC” 203 to change the definition in the DSM.29 Jack Drescher, a member of the American Psychological Association (APA) committee tasked with changing the definition of GID, told advocates that his subcommittee’s recommendation came from a desire to stop “pathogoliz[ing] all expressions of gender variance just because they were not common or made someone uncomfortable.” 30 Drescher also acknowledged that “all psychiatric diagnoses occur within a cultural context . . . [W]e know there is a whole community of people who are not seeking medical attention and live between the two binary categories.”31 In changing the diagnosis for transgender individuals the APA was taking a needed step for providing a means for treatment for transgender individuals who wish to undergo transition-related care, while also removing the stigma that often comes with calling something a disorder. The new edition of the DSM released in 2013, the DSM-V, changed the diagnostic term for GID to “Gender Dysphoria.”32 Gender dysphoria (“GD”) is now used to describe a person whose gender at birth is contrary to the one they identify with.33 For a person to be diagnosed with gender dysphoria there must be a marked difference between the individual’s expressed or experienced gender and the gender others would assign him or her and it must continue for at least six-months.34 The DSM-V states that this condition/state can manifest in a variety of ways; including strong being transgender, setting it apart from many other disorders in the DSM); see also J. Bryan Lowder, Being Transgender is No Longer a Disorder, SLATE (Dec. 3, 2012), http://www.slate.com/articles/health_and_science/medical_examiner/2012/12/dsm_revision_ and_sexual_identity_gender_identity_disorder_replaced_by_gender.html (discussing the transgender community’s response to reports that the APA approved changes to the DSM). 29. See Lowder, supra note 28 (explaining how advocates moved to get a change to the DSM-IV). 30. See id. (discussing the APAs move to change the DSM GID definition to “gender dysphoria” and removing the term “disorder” as a crucial step in ending the belief that transgenderism is a disorder). 31. Id. 32. See DSM-V Fact Sheet, supra note 19 (explaining that the DSM determines how mental disorders and defined and diagnosed and how the new diagnostic terms is meant to avoid stigma and ensure clinical care for individuals who feel themselves to be a different gender than their assigned gender). 33. See DSM-V Fact Sheet, supra note 19 (explaining that gender dysphoria replaces “gender identity disorder” to describe individuals who see themselves to be a different gender than their assigned gender). 34. See DSM-V Fact Sheet, supra note 19 (emphasizing that the individual must suffer distress with their current assigned gender for at least six-months). 204 21 WASH. & LEE J. CIVIL RTS. & SOC. JUST. 196 (2014) desires to be treated as the other gender or to be rid of one’s sex characteristics, or a strong conviction that one has feelings and reactions typical of the other gender.35 The DSM-V also adds a post-transition “specifier”36 for people who are living full-time in their specified gender.37 The new definition is crucial because, as emphasized by many advocates, transgender identity is not a mental illness.38 The change resembles the elimination of homosexuality from the DSM forty years ago, when the psychological community recognized that one can be homosexual and psychologically healthy or vice versa, homosexuality itself was not the diagnosed condition.39 The GID definition focused on the “identity” issue and the incongruity between someone’s birth gender and the gender with which he or she identifies.40 Though the incongruity element is still crucial to the definition of gender dysphoria, the DSM-V now emphasizes the importance of distress about the incongruity for diagnosis.41 Changing the definition was crucial for persons requiring diagnostic treatment of gender 35. See DSM-V Fact Sheet, supra note 19 (stating that gender dysphoria manifests in different ways and the diagnosis is fact based and patient specific). 36. “Specifier” is a medical term of art used in the DSM-V. The post-transition specifier has been added because after gender transition many people no longer meet criteria for gender dysphoria, but still remain in need of treatments to improve life in the desired gender and this specifier recognizes that need. AM. PSYCHIATRIC ASS’N, HIGHLIGHTS OF CHANGES FROM DSM-IV-TR TO DSM-5 (2013), available at http://www.dsm5.org/Documents/changes%20from%20dsm-iv-tr%20to%20dsm-5.pdf. 37. See id. (stating that the specifier is meant to ensure treatment access for individuals to undergo hormone therapy, related surgery, and psychotherapy or counseling to support their gender transition). 38. See Parry, supra note 28 (emphasizing that gender dysphoria and being transgender is not a mental illness, but realizing that the need for some form of diagnosable condition is required for treatment and care); see also Lowder, supra note 28 (discussing how the transgender community felt that gender identity disorder created a stigma against transgender individuals). 39. See id, at 576–77 (quoting Robin Rosenberg, a clinical psychologist and author). 40. See id. (explaining how the shift in diagnosis is crucial to understanding the difference between being transgender and having gender dysphoria). The new definition reflects recognition that the disagreement between birth gender and identity may not be pathological if it does not cause the individual distress. Id. Many transgender people are not distressed by their cross-gender identification and should not be diagnosed with gender dysphoria. Id. This new diagnosis is important because transgender people have often pointed out that distress in gender dysphoria is not an inherent part of being transgender—which is unique from many other disorder in the DSM because much of the distress that accompanies gender dysphoria arises as a result of a culture that stigmatizes people who do not conform to gender norms. Id. 41. Id., at 576–77.