Gaps in LGBT Research and Health Care
LGBT people are subjected to prejudice and discrimination in healthcare.
Posted August 2, 2011
On April 1, 2011, the Institute of Medicine of the National Academy of Sciences (IOM) released a report called "The Health of Lesbian, Gay, Bisexual and Transgender People: Building a Foundation for Better Understanding." The report addresses "health" in a multidimensional way, including physical health, emotional health and social well-being. It identifies gaps and opportunities in health care for LGBT people.
As a group with minority status, LGBT people are subjected to prejudice and discrimination in health care. In the mid-1980s, I had just left my wife and daughters to begin the process of coming out. I had taken a new position as medical director of psychiatry at a large health care system in Iowa. My new position included an invitation to sit as the psychiatric representative on a committee of an HMO.
The committee was tasked with developing eligibility criteria for joining the HMO. The HIV/AIDS epidemic dominated early discussions. The woman chairing the meeting smugly announced that the HMO was designing the questions in their application questionnaire that would identify men who might be gay so that they could be denied coverage. One of the other committee members asked in a side comment spoken loudly enough for everyone to hear, "What did you ask them? 'Do you like to take it up the ass?'"
Although several committee members laughed, I sat there in stunned silence. I had not yet come out at work, because I was afraid that I would lose my position as psychiatric medical director if my newly admitted sexual orientation became public information. Faced with significant alimony and child support, I needed that job. I wanted to speak up, but fears of the consequences of doing so paralyzed me.
Similar discussions undoubtedly were taking place all across the United States. These deliberations assured insurance companies profitability while blocking access to health care for many gay men during the early AIDS epidemic. The LGBT community began to develop some of their own health infrastructure. Lesbians -- although not directly affected by the epidemic -- joined their gay brothers to advocate for equal treatment of the health care needs of the entire LGBT community.
Back to 2011. The Institute of Medicine was charged with identifying the state of the science of LGBT health, and with uncovering gaps in research. As I wrote in Finally Out: Letting Go of Living Straight, a Psychiatrist's Own Story, I began life believing that I was heterosexual, went through a brief period of thinking I might be bisexual, and finally realized that I'm gay, one gap immediately became apparent to me: Who is gay and who isn't?
The IOM report points out that "LGBT" is an umbrella term. The "L," the "G," the "B" and the "T" all represent distinct populations, even though they are frequently discussed together. Each group also has subpopulations defined by race and ethnicity, socioeconomic and educational status, geographic location, age and other factors. Each population and subpopulation has its own separate needs and its own distinct health care requirements. The term LGBT also doesn't address those who are standing outside the protection of the umbrella, questioning their sexuality and experimenting with same-sex behaviors.
Some have simply divided people into heterosexuals and non-heterosexuals. Non-heterosexuals include men and women, homosexuals and bisexuals, gays, lesbians and people who don't adopt labels. Some engage in same-sex sexual behaviors, while others only experience same-sex attraction. Are they heterosexual or non-heterosexual?
Although LGBT is an appropriate and useful term to use in some circumstances, the IOM report pointed out that "[in] some HIV research, study participants are combined in a single category that may include gay men, bisexual men, transgender women, and men who do not identify as any of the above but still have sex with other men. Combining these populations in this way obscures differences among them.
My research interest -- and the subject of my blog, MagneticFire.com -- has been a subpopulation of men who either come out later in life or who have sex with men (MSM) but do not identify as being gay. Some have a heterosexual self-identity; many are married, and almost all live hidden lives. Many are reluctant to give up heterosexual privilege and would never consider coming out.
The Centers for Disease Control and Prevention estimate that about 4 percent of the male population is gay but that 7 percent of men have sex with men. One can conclude that about 3 percent of men are MSM, or approximate 9 million men in the United States. This is a very diverse group of men whose lives have been shaped by their age cohort and the historical context of their lives.
MSM experience considerable stress and have higher incidences of depression and suicide, alcoholism and drug abuse, and HIV/AIDS than heterosexual men. When I first began to explore the medical literature, I found that in spite of their being a large group of men with serious public health risks, almost nothing is written about them. I became convinced that the coming out process for mature men is significantly different from the process for those who come out in their youth.
Each of us has multiple identities based on how our lives intersect with our families, our work, our communities, and society. Most MSM live their lives as heterosexuals, even though many of them have sex exclusively with other men. Lord Browne of Madingley, the former CEO of British Petroleum, lived a heterosexual lifestyle until after his retirement. The rich can afford their indiscretions.
Sexual orientation cannot be divided into only heterosexuals and non-heterosexuals; sexual orientation can be conceptualized in many ways: sexual attraction, sexual behavior, sexual identity, or any other combination of the three. MSM, along with many other subpopulations, are all encapsulated under the rubric of LGBT, but one thing these groups have in common is the stress created by their minority status. The stigma against same-sex orientation comes both externally (discrimination, hostility, violence) and internally (sense of difference, internalized homophobia).
Other factors obscure the distinctions within the LGBT community. Individual development is not the same for people of all ages. Coming out at age 15 is not the same as coming out at 50, and it is different for those born in 1950 than for those born late in the 20th century. Race and immigrant status blur distinctions and impact the coming out process and the availability of support; some immigrants feel that they must choose between their ethnicity and their sexuality. Coming out in rural areas where there are fewer LGBT people presents different obstacles. Religious affiliations also create barriers to coming out.
One man I spoke with said, "I can't be gay; I like sports too much." He had adopted society's negative attitudes about homosexuality and concealed his sexual orientation out of an expectation of rejection and discrimination. Concealment leads to a constant state of vigilance, always fearing that you will give away clues of your sexual orientation. The IOM reports said, "The experiences of individuals at every stage of their life inform subsequent experiences, as individuals are constantly revisiting issues encountered at earlier points in the life course. This interrelationship among experiences starts before birth and in fact, before conception."
Directly or indirectly, LGBT people experience discrimination in health care. For example, HIV prevention is targeted at the younger age group. Several years ago, during the onset of the HIV/AIDS epidemic, my husband developed acute and severe abdominal pain. The gastroenterologist came in to see him, and without taking a history, performing a physical examination or ordering any studies, he pronounced that my husband had AIDS. A second gastroenterologist ordered a series of testing and diagnosed his problem as a parasite acquired during a recent trip to Mexico.
Much of the research that has been done on the LGBT community has been done on young lesbians and gay men, ignoring the hidden mature community. Research on the non-heterosexual community is difficult, partly because it is so operationally challenging to define who belongs to which population or subpopulation. It becomes even more complex when, as it did it my circumstance, the way one identifies his or her sexual orientation changes across the lifespan.
Many MSM, for example, self-define as heterosexual and are reluctant to participate and answer questions related to same-sex activity. It is also complicated to develop randomized samples that would allow for generalizations to the larger population or subpopulation.
Large samples are necessary in order to generate hypotheses and formulate ideas about subpopulations like MSM. My story, as it is revealed in "Finally Out: Letting Go of Living Straight," is just that: my story. I have attempted to illustrate how age and historical context influenced the process of my coming out and impacted how my sexual identity evolved over time, but others living during the same time period had other experiences that were uniquely theirs. The IOM report stated,
"At a time when lesbian, gay, bisexual, and transgender (LGBT) individuals are an increasingly open, acknowledged, and visible part of society, clinicians and researchers are faced with incomplete information about the health status of this community."
This report from the IOM goes a long way in identifying the health care needs of the LGBT community and establishes priorities for areas of research. It will be particularly difficult to study those parts of the LGBT community and those questioning their sexual orientation but who are hidden. This report goes a long ways toward acknowledging their existence as well as their health care needs.
My husband and I are getting older. We have had recent reasons to need health care services. In Iowa, we have now had legalized same-sex marriage for two years, and I must say, everyone involved in our health care has been very respectful of our relationship. We both feel that we have been treated the same as any heterosexual spouse would have been treated. My memory of the unfortunate circumstance with the HMO has faded; unfortunately, the guilt I have for my failure to speak up has not diminished.
This article was originally posted on Huffington Post
Finally Out: Letting Go of Living Straight, a Psychiatrist's Own Story is available in paperback and in Kindle format on Amazon.com. Other electronic versions are available at FinallyOutBook.com and inGroupPress.com. It is also available in the United Kingdom at Amazon UK
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