Trans Healthcare Access in Mass

Introduction

For many individuals, the life event or circumstance which warrants a need for accessing healthcare is inherently stressful. The process of seeking or receiving medical treatment is not always simple or intuitive. For transgender (trans) and gender-non-conforming (GNC) individuals, there is an added layer of fear for their comfort, dignity, and safety. Historically, approximately 30% of trans-identified adults report incidents of discrimination, up-to and including assault, while accessing healthcare services (Lambda Legal, 2010; Grant, et al., 2011; James, et al., 2016). Despite this prevalence of negative experiences, as of August 2019 there are few qualitative studies available to give depth and humanity to these statistics.

Identifying the population

Over the last decade, quantitative studies have been conducted to determine the scope of discrimination experienced by transgender individuals, however few studies exist outside of this focus. From these projects, for the first time in history, data is available regarding the intersectionality of transgender identities and the rates of varying discriminatory life experiences had by transgender people in certain environments and circumstances.

Overwhelmingly, studies show that trans individuals delay necessary medical care due to risk factors and fears related to their gender identity, and over half of all trans individuals report needing to educate their medical provider/team on the realities of their health care needs (Lambda Legal, 2010; Grant, et al., 2011; James, et al., 2016). About 30% of respondents in multiple surveys report having experienced some form of discrimination from a medical provider due to their gender identity, including reports of physical and sexual assault occurring in medical settings (Lambda Legal, 2010; Grant, et al., 2011; James, et al., 2016). Based on a National Center for Transgender Equality survey (2015), 8,400 respondents experienced some form of discrimination, with approximately 280 individuals likely experiencing some form of physical or sexual assault based on survey data (James, et al., 2016).

Picture of healthcare access in Massachusetts/USA

According to a study published in 2017 by the Center for Disease Control and Prevention, across the nation approximately 82.7% of adults age 18-64 have access to ongoing medical care outside of emergency medical providers or establishments (Centers for Disease Control and Prevention, 2018). As of the 2019 census, Massachusetts was home to just under 6.9 million residents (United States Census Bureau, 2019). There are no existing standardized methods of data collection for identifying the transgender population in Massachusetts, or at the Federal level, leaving too many unanswered questions regarding the health and safety of trans individuals in Massachusetts.

The 2016 Williams Institute study on Transgender Population in the United States asked if participants self-identified as transgender, and to further break down their binary gender identity, which resulted in an estimate that approximately 0.6% of individuals in the United States over 18 identify as transgender (Flores, Herman, Gates, and Brown, 2016). The 0.6% population estimate has been the approximate standard used for policy and advocacy measures nation-wide and would indicate a population of approximately 41,000 trans individuals in Massachusetts.

A 2017 Accelerating Acceptance survey published by GLAAD (2017) found a much higher self-identified rate of trans identity, at about 3.5% for those between the ages of 18-71. This study obtained participants through online polling, and offered a variety of gender identity labels for participants to select from, including cisgender, agender, transgender, gender fluid, bigender, genderqueer, and unsure/questioning, with the population modeling done solely for individuals who self-identified as transgender (GLAAD, 2017). The inclusion of both studies creates a wide population estimate range for trans adults in Massachusetts, between 41-238,000 individuals. Both surveys utilized an online survey method, however GLAAD is an active and well-established LGBTQ+ advocacy organization, and their role as a public advocate may have led to a higher saturation of trans-identified survey participants than typical similar surveys.

In the Boston area, where the largest provider of Transgender Health Services has become established through a partnership with Beth Israel Deaconness Medical Center, the Boston Public Health Commission (BPHC) found that between 2010-2017 approximately 0.7% of the Boston adult population self-identified as transgender, roughly 5,000 individuals (Mather, Mehta, Wada, Ayanian, Manukyan, and Dooley, 2019). Looking more closely at the intersectional identities of trans individuals in Massachusetts, the BPHC reported that “40.0% were White non-Latinx, 28.1% were Latinx, and 31.9% were another race/ethnicity (Mather, et al., 2019).”

In Massachusetts, the average number of licensed active primary care physicians per 100,000 residents is 247.4, significantly higher than the national average of 159.6 PCPs per 100k residents (United Health Foundation, 2019).

Legal Landscape for transgender health care

Currently in the United States, there are few states with anti-discrimination legislation written intentionally to protect trans and GNC people from experiencing discrimination while receiving or seeking medical care (Movement Advancement Project, n.d.). Additionally, there are few, if any, legal or criminal repercussions in any U.S. state for discrimination against trans individuals in medical settings. The rights of trans individuals in the United States appear to be in flux with current legislative efforts and existing policies and legislation redefined frequently. As of this project, the following federal legislative protections exist regarding discrimination of trans individuals seeking healthcare:

Table 1

Federal Legislative Policies in place for Trans Individuals in Healthcare Settings

Note: The above legislative policies reviewed represent a snapshot of the existing enacted federal legislation as of the completion of the research study. State and local policies may differ, and there are many forms of legislation at the State and Federal level which are not yet enacted.

Federal and state laws also exist to prevent medical insurance providers from denying access to medically necessary transition related services, however there are some exceptions, and these laws may not apply to all public and private insurers equally (National Center for Transgender Equality, n.d.). In June 2019, the Centers for Medicare and Medicaid Services published a federal rule which would effectively overturn federal anti-discrimination policies intended to protect LGBTQ+ individuals accessing healthcare (Patient Protection and Affordable Care Act, 2019). This action is one of several pending or recently implemented rules and policies which remove language regarding discrimination of LGBTQ+ persons in healthcare, housing, and other federally supported or funded services (GLAAD, 2019; Nation; HHS Office of the Secretary, Office for Civil Rights, 2018).

As of the time of this study, a new piece of legislation, HR 5, commonly referred to as the Equality Act, is pending approval by the U.S. Senate as of May 27, 2019 (HR5, 116th Congress) and has been referred to the Committee on the Judiciary, with no further scheduled actions pending (HR5, 116th Congress ). In the meantime, by removing references to LGBTQ+ policies and protections on public facing websites and content controlled by the United States Government, an already vulnerable population becomes even less able to self-advocate and stay up to date on legal protections and restrictions.

In 2018, Massachusetts voters were asked to determine the outcome of a rare referendum, by voting to uphold existing anti-discrimination legislation that had already been successfully signed into law two years prior (Galvin, 2018). The measure passed with only 67.8% of the votes (Galvin, 2018), a sobering message to the Massachusetts trans communities which was only partially remedied by the Conversion Therapy Ban HR140 Law being signed by Governor Baker in April 2019 just as this study was being developed (HR 140, 2019).

History of Trans Healthcare Access and Rights

Historically, trans medical access rights and advancements have been furthered by single individuals with power and influence, and not by government entities. This dates to the creation of the Erickson Educational Foundation (EEF) in 1964, funded by millionaire philanthropist Reed Erickson, who also happened to be transgender (Devor, and Matte, 2007). The EEF had three primary foci, one of which being the pursuit of medical advancement and research of topics deemed to be too controversial for the medical community at large, such as topics related to transsexualism (Devor, and Matte, 2007). Erickson received his own transition-related medical care from renowned trans-knowledgeable medical specialist Harry Benjamin. Dr. Benjamin had come to international attention following his work in support of the first documented vaginoplasty, performed on World War II veteran-turned celebrity, Christine Jorgensen, in 1952 (Rosario, and Meyerowitz, 2004). With this notoriety and the resulting publications and research, the term “Transsexual” was first used in a medical capacity to refer to an individual born and assigned one gender, but who suffered from dysphoria resulting from an internal identification of the opposite sex that they were assigned at birth (Benjamin, 1954).

The EEF went on to create the Harry Benjamin Foundation, with Benjamin crediting Jorgensen’s public transition as key to his work and further research (Devor, and Matte, 2007). Benjamin, along with noted sexologist Alfred Kinsey created the first gender clinics in the United States and supported the creation of the Harry Benjamin International Gender Dysphoria Association (HBIGDA) in 1979 (Denny, 2002). The HBIGDA established itself throughout the eighties as the first of its kind in research, policy advocacy, and provision of medical care to trans individuals (Denny, 2002) by publishing the Standards of Care for the Health of Transsexual, Transgender, and Gender Nonconforming people for the first time in 1979 (Carroll, 1999; Denny, 2002).

The Harry Benjamin International Gender Dysphoria Association is now known as the World Professional Association for Transgender Health (WPATH) (Denny, 2002), and published the most recent Standards of Care in 2012 (Coleman, et al., 2012). These standards of care are used internationally today to support the ethical and appropriate medical care of trans individuals (Denny, 2002). The Standards of Care, and Benjamin’s work, is arguable the largest first positive step in trans healthcare access in United States history and remains relevant and a best practice in multidisciplinary care and treatment of trans patients (Denny, 2002). The field of trans-knowledgeable healthcare has evolved rapidly since the first publication of the Standards of Care in 1979, however policy and legislation remain largely unchanged from that time according to the Movement Advancement Project. In fact, in the 1980 edition of the Diagnostic and Statistics Manual, edition three, a new psychiatric diagnosis for those experiencing cross-gender behaviors, urges and tendencies was published, creating a pathology of “gender identity disorder” (Drescher, 2010).

Since the initial publication of the DSM-III with the inclusion of gender identity disorder, the newer DSM-IV has also been released as of 1994 (Drescher, 2010). Critics of the medicalization and pathologizing of trans identity claim that the DSM classification enabled continued stigmatization and created barriers to life-saving transition care (Drescher, 2010). As of 2013, the DSM-V has re-classified gender identity disorder as the newly classified “gender dysphoria,” following recommendations from the Standards of Care from the World Professional Association for Transgender Health (Fraser, et al., 2010; Drescher, 2010). Despite this change, the International Classification of Diseases (ICD-10) still includes several pathologies related to trans identity and will continue to do so until the publication of the ICD-11 in 2022, despite recommendations against this practice. (World Health Organization, 2019;Drescher, 2010)

Defining the research question

Massachusetts has been on the forefront of mainstream medical and legislative advocacy throughout history. Given that Massachusetts is home to a population of trans adults with estimates between 41,000-238,000 (depending on population modeling), there has been a lack of legislative evolution around anti-discrimination policies.

While there is some quantitative data to show the clear ongoing quality and access challenges faced by trans patients, there is little qualitative data of trans patients’ experience. There was an apparent lack of research around the intersectional identity of trans individuals, combined with direct calls for new qualitative/narrative study materials to better understand the lived experience of trans individuals as they access healthcare (Lambda Legal, 2010; Grant, et al., 2011; James, et al., 2016).

The resulting research question formulated for this study was:

How are adult transgender patients navigating the existing healthcare system to access medical care in Massachusetts?