LGBTQIA+ Health Disparities 

by Laura Crouch

June 2, 2021

Editor’s Note:  LGBTQIA+ is an umbrella acronym that generally stands for lesbian, gay, bisexual, transgender, queer (and/or questioning), intersex and asexual. The acronym is designed to be as inclusive as possible with the “+” indicating any person who does not identify specifically with any of the listed terms but who exists outside of the cisgender and heterosexual norm. Throughout this piece, the author uses LGBTQ, LGBTQIA+, and queer interchangeably, though acknowledging that this usage is contested even within the LGBTQIA+ community. 

Language is constantly changing and adapting to human understanding and experience. This process is certainly evident in the history of public health and social welfare. Many of the definitions of terms and phrases used in this article can be found in this glossary of terms from the Human Rights Campaign.

Introduction

A very diverse group within itself, the LGBTQIA+ community contains people from every race, ethnicity, and socio-economic group. While each of these populations have their own unique needs, studies show that members of the LGBTQ community face similar challenges when it comes to seeking medical care (National Public Radio, 2017).

Barriers range from outright discrimination and microaggressions in doctor’s offices to finding medical professionals who are knowledgeable about the medical needs of members of the queer community. These medical needs include access to healthcare insurance, testing and treatment for STIs including HIV, and access to gender affirming treatments and procedures. Factors that further exacerbate a person’s situation include if they are a member of another population that experiences healthcare challenges such as a minority racial group or if they have a disability. 

A combination of discrimination and a lack of education regarding LGBTQ health issues contribute to deepening health disparities experienced by the queer community. In order to combat this, there are a number of organizations, clinics, and activists dedicated to helping achieve health equity for the queer community. By advocating for anti-discrimination legislation as well as the education of health care professionals, they intend to create equitable, affirming healthcare for queer patients. 

Healthcare and HIV/AIDS

The HIV/AIDS pandemic represents the first time that LGBTQ healthcare was given national attention. In the early 1980s, when the virus first began spreading, it largely effected marginalized groups especially Black and Latinx gay men and transgender women (HIV.org, 2020). When the virus first appeared, there was widespread misinformation about the disease and prejudice against those living with it. Initially, these prejudices were all reinforced by the reluctance of political leaders to acknowledge and address AIDS publicly throughout the 1980s.

As the HIV/AIDS pandemic continued to decimate the gay community in the 1980s and 1990s, activists organized tirelessly. One of the most widespread and notable advocacy groups during this time was ACT UP (AIDS Coalition to Unleash Power). They advocated for those living with and dying from AIDS to be treated with human dignity in hospitals. They also pushed for  increased transparency from healthcare and government institutions such as the CDC and FDA. ACT UP used radical direct action tactics to bring much needed media attention to the HIV/AIDS pandemic. The group also became a center for scarce information about the disease and potential treatments. (Aizenman, 2019)

While ACT UP focused on making the AIDS epidemic visible by lobbying politicians and institutions, other AIDS activists founded free clinics that were designed to be safe places for the LGBTQ community to receive testing and treatment for HIV/AIDS without fear of judgement or harassment. Fenway Health, a free clinic in the Boston area that emphasized LGBTQ health before the HIV/AIDS pandemic, quickly shifted to focusing on testing and research as the virus continued to spread. Fenway Health evolved into the Fenway Institute which today is home to the National LGBTQIA+ Health Education Center. These clinics continue to pave the way for providing the queer community with compassionate and affirming healthcare services.

While extensive medical research since the 1980s has made living with HIV more manageable, there is still no vaccine or cure. Today, about 1.2 million people in the U.S. live with HIV. The rates of infection continue to disproportionately affect Black and Latinx gay men and transgender women (HIV.gov, 2020).

The early AIDS crisis devastated the queer community. However, it also taught the LGBTQ community how to organize, advocate, and bring attention to healthcare issues that disproportionately affect them. The legacy of the organizations and clinics that were established during the HIV/AIDS crisis continue to lead the way in LGBTQ healthcare advocacy and education.

Healthcare for Transgender and Non-Binary People

Some of the greatest barriers to healthcare for transgender and non-binary people include financial and socio- economic issues as well as a lack of healthcare providers who are knowledgeable about LGBTQ+ health issues.  For the transgender community, access to affordable, compassionate, and affirming healthcare is essential for receiving not only gender affirming surgery and/or hormone therapy but also routine and basic medical care.

Transgender and non-binary people self report that the greatest obstacle keeping them from healthcare is a lack of knowledgeable providers. According to the 2015 Transgender Health survey, one third of the survey participants reported having at least one negative experience in the past year with a healthcare provider. These experiences include being refused care and/or verbally harassed. Some transgender patients even report that they needed to educate their doctors about transgender health (Baldwin et al., 2018). The 2015 Transgender Health Survey further found that a quarter of the participants reported that they did not seek medical care when they needed it for fear of discrimination (James et al, 2016). This includes standard preventive screenings especially for cancer in parts of their bodies that do not correspond to the gender with which they identify (National Public Radio, 2017).  All of these experiences contribute to widespread distrust of the medical community within the transgender and non-binary community. 

Since the unemployment rate for transgender people is twice that of the general population, access to health insurance becomes a barrier for many trans people who need gender affirming surgeries and procedures (Movement Advancement Project, 2013). Not all transgender people feel like they need to medically transition in order to feel at home in their bodies. However, for those that do, it can be life saving. Even if a person does have access to medical insurance often transgender affirming treatments are not covered (Landman, 2019). Many transgender people report having to shop around for insurance that covers medical transitions. According to the 2015 U.S. Transgender Survey, a quarter of participants responded that they had a problem with their insurance in the past year related to being transgender.  In this same survey, more than half of participants reported that they were denied coverage for transition-related surgeries and a quarter were denied coverage for hormone therapy. For some, paying out of pocket remains the only option. While prices range, many report paying  huge sums out of pocket for surgeries. 

Healthcare for Intersex People

Intersex individuals are those whose reproductive or sexual anatomy does not fall within what is traditionally thought of as being male or female. Intersex is an umbrella term for a wide variety of circumstances that result in different experiences for different people. However, many experience being pressured into surgeries or procedures by doctors without their informed consent in order to make their anatomy more conventionally male or female (Human Rights Watch, 2017). While transgender people often find themselves fighting to receive the gender affirming surgeries and procedures that they need, intersex people often find themselves fighting against getting surgeries and procedures that are not medically necessary. These infant surgeries can have a lasting impact on intersex people and can damage the trust that they have in healthcare institutions. 

The Future of LGBTQIA+ Healthcare

Properly educating the medical community on LGBTQIA+ health issues will help LGBTQIA+ people receive widespread, equitable healthcare in the future. Fortunately, there are many organizations and activists devoted to providing educational resources for the medical community that address a variety of LGBTQIA+ health concerns and provide guidelines and manuals for equitably treating patients. Many of the free clinics throughout the U.S. that dedicated themselves to treating patients with HIV/AIDS in the 1980s and 1990s created a precedent for providing treatment to the queer community and are still seen as places that provide affirming healthcare. Additionally, with more doctors using telemedicine platforms due to the COVID-19 pandemic, many queer people who live in rural areas are now able to see specialists and affirming healthcare providers without having to drive hours away to a city or another state (Landman, 2018)

Another factor in continued health disparities are rulings and precedents set by government that enable discrimination.  In the 1980s there was reluctance on the part of politicians to even speak publicly about the HIV/AIDS pandemic, let alone provide any governmental assistance. It was not until 1985, four years after the first AIDS cases were diagnosed, that Reagan mentioned the pandemic publicly (HIV.gov, n.d.) More recently, a Trump administration ruling the summer of 2020 enabled the discrimination of transgender people in healthcare settings (Simmons-Duffin, 2020). 

While there has been a long history of politicians overlooking LGBTQIA+ healthcare discrimination, the Biden administration’s nomination of Dr. Rachel Levine, as Assistant Secretary for Health marks a historical shift. Dr. Levine is currently the highest ranking trans official in the federal government. On May 10, 2021, the Biden administration announced that the Department of Health and Human Services will once again prohibit discrimination on the basis of sexual orientation and gender identity by health care organizations that receive federal funding. This reversed a policy adopted by Health and Human Services under then-president Donald Trump.

Health inequity and healthcare disparities such as those experienced by the LGBTQIA+ community have implications for the overall health of the United States. As the COVID-19 pandemic has demonstrated, citizens’ health is essential to their happiness and quality of life, but also supports the nation’s economy. Public health efforts to identify and remediate inequities of illness, care, and outcomes benefit individuals and their communities while promoting the general welfare. Through education and public policy, health disparities may one day become a an issue that is studied, but no longer experienced.    

Video Source: Christian Hendricks (2015) on YouTube

Sources:

Aizenman, N. (2019, February 9). How to Demand a Medical Breakthrough: Lessons From the AIDS Fight. National Public Radio. https://www.npr.org/sections/health-shots/2019/02/09/689924838/how-to-demand-a-medical-breakthrough-lessons-from-the-aids-fight

Baldwin, A., Dodge, B., Schick, V.R., Light, B., Schnarrs, P.W., Herbenick, D., … Fortenberry, J.D. (2018, November). Transgender and Genderqueer Individuals’ Experiences with Health Care Providers: What’s Working, What’s Not, and Where Do We Go from Here? Journal of Health Care for the Poor and Underserved 29(4), 1300-1318. doi:10.1353/hpu.2018.0097.

HIV.gov. (n.d.). A Timeline of HIV and AIDS. https://www.hiv.gov/hiv-basics/overview/history/hiv-and-aids-timeline

HIV.gov. (2020, June 30). U.S. Statistics. https://www.hiv.gov/hiv-basics/overview/data-and-trends/statistics

Human Rights Watch, InterACT Advocates for Intersex Youth. (2017,July). “I want to be Like Nature Made Me” Medically Unnecessary Surgeries on Intersex Children in the US. https://www.hrw.org/sites/default/files/report_pdf/lgbtintersex0717_web_0.pdf

James, S. E., Herman, J. L., Rankin, S., Keisling, M., Mottet, L., & Anafi, M. (2016, December). Executive Summary of the Report of the 2015 U.S. Transgender Survey. Washington, DC. National Center for Transgender Equality. https://transequality.org/sites/default/files/docs/usts/USTS-Executive-Summary-Dec17.pdf

Landman, K. (2018, May 5). Telemedicine Takes Transgender Care Beyond the City. National Public Radio. https://www.npr.org/sections/health-shots/2018/05/05/608472248/telemedicine-takes-transgender-care-beyond-the-city

Landman, K. (2019, March 12). Fresh Challenges to State Exclusions on Transgender Health Coverage. National Public Radio. https://www.npr.org/sections/health-shots/2019/03/12/701510605/fresh-challenges-to-state-exclusions-on-transgender-health-coverage

Movement Advancement Project, National Center for Transgender Equality, Human Rights Campaign, and Center for American Progress. (2013, September). A Broken Bargain for Transgender Workers. https://www.lgbtmap.org/transgender-workers 

National Public Radio, Robert Wood Johnson Foundation, Harvard T.H. Chan School of Public Health. (2017, November). Discrimination in America: Experiences and views of LGBTQ Americans. https://legacy.npr.org/documents/2017/nov/npr-discrimination-lgbtq-final.pdf

Simmons-Duffin, S. (2020, June 12). Transgender Health Protections Reversed by Trump Administration. National Public Radio. https://www.npr.org/sections/health-shots/2020/06/12/868073068/transgender-health-protections-reversed-by-trump-administration

Ulaby, N. (2017, November 21). Health Care System Fails Many Transgender Americans. National Public Radio. https://www.npr.org/sections/health-shots/2017/11/21/564817975/health-care-system-fails-many-transgender-americans

U.S. Department of Health and Human Services (2021).  Lesbian, Gay, Bisexual, and Transgender Health. HealthyPeople.gov https://www.healthypeople.gov/2020/topics-objectives/topic/lesbian-gay-bisexual-and-transgender-health

Further Reading: 

List of LGBTQ healthcare resources including guides and manuals for healthcare professionals

CDC List of LGBTQIA+ Health Clinics 

VCU Libraries Research Guide on LGBTQIA+ Healthcare for patients 

VCU Libraries Research Guide on LGBTQIA+ Healthcare for Clinicians

The eQuality Toolkit: Practical Skills for LGBTQ and DSD-affected Patient Care

Documentary: How to Survive a Plague (2012)

ACT UP Digital Collection from the New York Public Library

© Laura Crouch, 2021.

Resources related to this topic may be found in the Social Welfare History Image Portal.