Transgender Health Volume 1.1, 2016 Transgender DOI: 10.1089/trgh.2016.0031 Health ORIGINAL ARTICLE Open Access Identifying the Transgender Population in the Medicare Program Kimberly Proctor,1,2,{ Samuel C. Haffer,1,{,* Erin Ewald,3 Carla Hodge,1 and Cara V. James1 Abstract Purpose: To identify and describe the transgender population in the Medicare program using administrative data. Methods: Using a combination of International Classification of Diseases ninth edition (ICD-9) codes relating to transsexualism and gender identity disorder, we analyzed 100% of the 2013 Centers for Medicare & Medicaid Services (CMS) Medicare Fee-For-Service (FFS) ‘‘final action’’ claims from both institutional and noninstitutional providers (*1 billion claims) to identify individuals who may be transgender Medicare beneficiaries. To confirm, we developed and applied a multistage validation process. Results: Four thousand ninety-eight transgender beneficiaries were identified, of which *90% had confirma- tory diagnoses, billing codes, or evidence of a hormone prescription. In general, the racial, ethnic, and geographic distribution of the Medicare transgender population tends to reflect the broader Medicare population. However, age, original entitlement status, and disease burden of the transgender population appear substantially different. Conclusions: Using a variety of claims information, ranging from claims history to additional diagnoses, billing modifiers, and hormone prescriptions, we demonstrate that administrative data provide a valuable resource for identifying a lower bound of the Medicare transgender population. In addition, we provide a baseline description of the diversity and disease burden of the population and a framework for future research. Keywords: administrative data; disease burden; intersectionality; Medicare; transgender Introduction disability, or end-stage renal disease are nonexistent, Despite increased awareness and greater societal accep- demonstrating the need for more and better research tance of people who are transgender, the inability to focused on sexual and gender minorities, including systematically identify and study the transgender pop- the transgender population. Toward this end, recent ulation greatly hampers our capacity to conduct mean- research conducted at the Department of Veterans ingful analysis of this group. Minimal representative Affairs suggests the potential utility of using health- national data exist,1 studies attempting to estimate care administrative data to identify persons who are the size and health needs of the transgender population transgender.4 Expanding on this work, we explore have generally relied on nonprobability survey sam- the use of Medicare billing data from the Centers for ples,2 and analyses utilizing more robust research Medicare & Medicaid Services (CMS), the federal designs have largely focused on single states.3 Further- agency that administers the Medicare and Medicaid more, population-based studies of transgender individ- programs, to identify and describe Medicare’s trans- uals entitled to Medicare due to age (65 and older), gender population. 1Office of Minority Health, U.S. Centers for Medicare & Medicaid Services, Baltimore, Maryland. 2Center for Medicaid and CHIP Services, U.S. Centers for Medicare & Medicaid Services, Baltimore, Maryland. 3NORC at the University of Chicago, Chicago, Illinois and Bethesda, Maryland. {Cofirst authors. *Address correspondence to: Samuel C. Haffer, PhD, Office of Minority Health, U.S. Centers for Medicare & Medicaid Services, 7500 Security Boulevard [MS: S2-12-17], Baltimore, MD 21244-1850, E-mail: [email protected] U.S. Centers for Medicare & Medicaid Services. 2016; Published by Mary Ann Liebert, Inc. This Open Access article is in the public domain and may be used and reprinted without permission. 250 Proctor, et al.; Transgender Health 2016, 1.1 251 http://online.liebertpub.com/doi/10.1089/trgh.2016.0031 The transgender population includes individuals Coding System (HCPCS) codes that provide additional whose gender identity, gender expression, or gender information about the billed procedures.15,16 Providers behavior does not typically conform to the sex they use billing modifiers to avoid rejection of claims with were assigned at birth.5 This community experiences a a gender/procedure conflict. For example, the CMS sys- particularly high disease burden, including significantly tem will reject a claim where a physician provided a higher rates of substance abuse,6–8 HIV/AIDS,9–11 and female pelvic examination for a male beneficiary, as mental illness.10,12,13 Discrimination in the healthcare female pelvic examinations are considered sex specific setting only exacerbates these adverse health outcomes. (i.e., only for females). Because transgender beneficiaries Twenty-eight percent of transgender persons report may have changed their sex on record, they are at a high postponing medical care when sick due to discrimina- risk for experiencing gender/procedure conflicts. In this tion, 19% report that doctors have refused to provide instance, a transman (female to male transition) may them care because of their transgender status, 28% re- have his claim for a medically necessary pelvic examina- port facing harassment in the medical setting, 2% report tion rejected inappropriately. Therefore, condition code facing violence in a doctor’s office, and >50% report 45 and the KX modifier are used to process claims with that they had to teach their doctor about transgen- gender-specific editing that CMS would normally reject der healthcare.2 Taken together, transgender persons due to gender/procedure mismatches. A list of the experience suboptimal health outcomes across a vari- gender-specific procedure codes related to condition ety of areas while systematically lacking access to the code 45 and the KX modifier is included in Appendix institutions that have the ability to address these medi- Table 1. cal needs. Similar to diagnosis codes and billing modifiers, Even when transgender persons are able to receive CMS also maintains a record of each Medicare benefi- care, insurers routinely deny treatment related to med- ciary’s prescriptions. The Medicare Part D prescription ical transitions. Transitioning is the process of living as drug plan covers medically necessary hormones for the gender with which a transgender person identifies, transgender persons, such as cross-sex hormones. rather than the gender assigned to them at birth.2 Med- Records of these prescriptions are available in CMS’s ical transitions include any type of transgender-related administrative files and include the generic and brand surgery, such as sex-reassignment surgery or cosmetic names of prescription drugs, as well as details about procedures, and hormone therapy, such as taking pre- the prescription. A list of hormone therapy-related pre- scriptions for cross-sex hormones. Medical transitions scription drugs is included in Appendix Table 2. are particularly relevant for the Medicare program, As a result, it may be possible to identify transgender which covers certain aspects of these medical treat- Medicare beneficiaries using one or a combination of ments and includes this information in Medicare these diagnosis codes, billing modifiers, and prescrip- claims data. tion drug events. Until 2015, providers treating patients enrolled in Medicare used the International Classification of Dis- Methods eases ninth edition (ICD-9) to indicate a patient’s spe- Utilizing the CMS Chronic Conditions Data Ware- cific medical diagnoses when submitting medical house (CCW), which contains CMS data on Medicare claims to CMS. ICD-9 contains multiple diagnosis and Medicaid beneficiaries and their claims, we ana- codes that are transgender specific, including the follow- lyzed 100% of the CMS Fee-For-Service (FFS) final ing codes14: 302.50 (Transsexualism with unspecified action claims from both institutional and noninstitu- sexual history), 302.51 (Transsexualism with asexual tional providers for calendar year 2013. These claims history), 302.52 (Transsexualism with homosexual included inpatient and outpatient hospital claims, car- history), 302.53 (Transsexualism with heterosexual his- rier claims (e.g., physicians, physician assistants, nurse tory), 302.6 (Gender Identity Disorder [GID] in chil- practitioners), and claims from skilled nursing facili- dren), and 302.85 (GID in adolescents or adults). ties, home health agencies, hospice care, and those re- CMS also advises providers to utilize two billing mod- lating to durable medical equipment. In total, this ifiers that apply to the transgender population, including covered *1 billion claims. the condition code 45 modifier and the KX modifier. In the first component of the analysis, we searched Medicare billing modifiers are two-digit codes appended each claim for any occurrence in any position of diag- to procedure codes or Healthcare Common Procedure nosis codes 302.50, 302.51, 302.52, 302.53, 302.6, or Proctor, et al.; Transgender Health 2016, 1.1 252 http://online.liebertpub.com/doi/10.1089/trgh.2016.0031 302.85. Once we identified the universe of claims meet- sons are not misclassified as transgender. To demon- ing our criteria, we used the unique Medicare benefi- strate, there were over 5000 Medicare beneficiaries ciary identifier present on each claim to identify in 2013 with a claim containing the KX modifier or unique observations. Following this identification pro- condition code 45 and a gender/procedure conflict, cess, we used the unique beneficiary identifier