"Lesbian, gay, bisexual, and transgender (LGBT) individuals experience unique health disparities. Although the acronym LGBT is used as an umbrella term, and the health needs of this community are often grouped together, each of these letters represents a distinct population with its own health concerns."
"Furthermore, among lesbians, gay men, bisexual men and women, and transgender people, there are subpopulations based on race, ethnicity, socioeconomic status, geographic location, age, and other factors," is how the report opened.
That summary statement is not news to anyone familiar with the LGBT community. But the fact that it was made in a report commissioned by the National Institutes of Health (NIH) and written by the prestigious Institute of Medicine (IOM) adds new meaning and credibility to shaping health policy, which that heretofore had been lacking.
Traditionally IOM committees are asked to identify research gaps and priorities within a field. "But that paradigm does not fit for this area," Chair Robert Graham, M.D., said at the March 31 news conference releasing the report.
"There has been so little fundamental, across the board research with the LGBT communities that we couldn't just identify gaps, we really needed to base our findings upon a more broad and encompassing degree of needs in terms of research," continued the professor at the University of Cincinnati School of Medicine.
He said much of the research that does exist focuses on gay male adults, particularly with regard to HIV and other sexually transmitted diseases. And it has been conducted largely in urban environments, not suburban or rural ones. There is little research focusing on bisexuals and transgender persons or on issue of childhood or aging. Information on racial and ethnic groups, and lower income populations also is scant.
Some of these factors may confer additional health risks "and these sorts of crosswalks just have not been examined at all," Graham said.
Recommendations
Among the broad recommendations in the report are:
—Data collection: Most federal surveys should offer opportunities for people to self-identify as LGBT, should they choose to do so. Electronic health records should contain information on sexual orientation and gender identity.
—Methodologies: NIH should support developing standardized definitions and measures of sexual orientation and gender identity, to facilitate comparisons across studies.
—Training: NIH should create a comprehensive research training approach to strengthen LGBT research at NIH and among its grantees.
—Research: Researchers applying for grants from NIH and other federal agencies should identify how their research will meet the needs of LGBT Americans, in much the same way they do now along lines of race and gender.
—Committee members at the news conferences offered their own more focused research priorities toward meeting those needs.
—"We don't have a good understanding of the developmental processes that affect LGBT persons. I would love to see something that pulls together what we have attempted to piece together, the LGBT life cycle," said Brian de Vries, a gerontologist at San Francisco State University.
—For Robert Garofalo, a pediatrician and professor at Northwestern University, "HIV is the number-one health disparity that affects our community. If I were to design a study it would be to focus on intervention research for underserved populations, like young African American men in this country who are facing exorbitant amounts of HIV."
The past president of the Gay and Lesbian Medical Association said very little has been done in the area of intervention research that has been proven effective in reaching this community. He is particularly interesting in structural and community-based rather than medical interventions.
Judith Bradford, with Fenway Community Health in Boston, would focus on behavioral risk factor surveillance that includes sexual orientation and gender identity. Only 13 states currently measure it, "so if you look across the country you have a patchwork of places in which this data are collected." She also would extend the questions to include adolescence through older age.
Other areas
A second-year medical student in the audience noted the spotty nature of education on LGBT issues in medical schools—some offer little to no training while a few are doing "a fantastic job"—and asked how the report addresses that training.
The NIH plays only a small role in medical education so that was not a major focus of the report. Garofalo said, "The report does an incredibly good job of condensing the available literature. I think that will help medical schools develop curriculum."
Graham said a similar first report on Black and minority health disparities in the 1980s "worked its way into medical school curriculum as a sourcebook. We have some hope this report will do the same thing for the LGBT community."
Bradford said many of these recommendations "are not a big deal" to implement, but she acknowledged that there are barriers, including political barriers to doing so.
For Garofalo, "This is something we have done for other populations and we think we should be doing it now for this population. This document goes a long way in framing it from a very scientific perspective. It is entirely now a matter of political will."
The day prior to release of the report the New England Journal of Medicine published an article in its clinical practice section entitled "Care of Transsexual Persons." It is the first time it has dealt with the subject so extensively. Garofalo said we have much to learn from the Dutch in this area.
Graham said the journal article, this report, inclusion in surveys and electronic health records are important because they create opportunities for self-reporting of sexual orientation and gender identity. And for others, including physicians, "seeing those questions legitimates the fact that it's okay to be that way. ... It is a sensitizing experience."
The NIH has appointed a liaison to coordinate implementation of the report's recommendations within that agency.
"The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding" is available at www.iom.edu/lgbthealth.
