Institute of Medicine landmark report: More info needed on health of LGBT community

The Fenway Institute contributed to release of "historic" medical document.

The Institute of Medicine (IOM) on Thursday, March 31 released a groundbreaking report on LGBT health titled "The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding." The report is an important reminder that the unique health needs of LGBT people are often not met under current programs.

The IOM, an independent, non-profit organization, released the report in response to a request from the National Institutes of Health (NIH) for guidance on and information about LGBT health. The report will help steer the NIH as the organization creates and funds health programs designed for the LGBT community.

Boston's own Fenway Health played an integral part in the creation of the report. Judith B. Bradford, PhD, and Harvey J. Makadon, MD, of The Fenway Institute both sit on the 17-member IOM Committee that issued the report -- The Committee on Lesbian, Gay, Bisexual, and Transgender Health Issues and Research Gaps and Opportunities.

"It was a great privilege to participate in the IOM process. At The Center for Population Research in LGBT Health at The Fenway Institute, we are constantly trying to centralize and improve data on the health of LGBT U.S. residents so that there is a better understanding of the health needs of our community," said Judith B. Bradford, PhD, Director of the Center for Population Research in LGBT Health and Co-Chair of The Fenway Institute. "The IOM report assembles existing research and makes recommendations for next step priorities. This provides a framework for identifying and reducing health disparities among sexual and gender minorities and directly supports the health of our community. It is truly historic."

"It is incredibly gratifying to be part of the team that helped assemble this historic Institute of Medicine report," added Harvey J. Makadon, MD, Director of Education and Training at The Fenway Institute. "This effort is clearly an important first step to creating an agenda that will advance the health of LGBT individuals. Aside from a research agenda, we must recognize the importance of educating health professionals about LGBT issues and creating welcoming environments for care. Studies show a reluctance to care for LGBT individuals and education about LGBT health issues in medical schools and schools for other health professionals is minimal."

Local and national LGBT advocacy organizations also contributed to the report, and lauded its release.

State GLBT Youth Commission chair Arthur Lipkin praised the report for its attention to the needs of LGBT youth. "The IOM recognizes the unique health risks faced by LGBT youth and its recommendations could lead to better science-based interventions to keep our young people healthy. I am especially happy to see that the report acknowledges the impact of race/ethnicity and socio-economic status on the well being of LGBT youth. The Commission recognizes the impact of the multiple and intersecting components of youths' identities on their health trajectories."

"In detailing just how little is known about the health issues confronting lesbian, gay, bisexual and transgender people, the Institute of Medicine report exposes the disturbing fact that our community has been largely ignored in most medical and health services research," read a statement from Rea Carey, Executive Director of the National Gay & Lesbian Task Force.

The Task Force contributed survey results to the report, revealing that 19 percent of respondents had been denied medical care because of their gender identity and that 50 percent of respondents had to teach their medical providers about transgender health care. The Task Force survey, called "Injustice at Every Turn," also revealed that 41 percent of respondents had attempted suicide. Survey results also indicated that transgender people of color experienced poorer health outcomes across the board, and that transgender people in general experienced four times the rate of HIV infection as the entire United States population.

"The startling statistics and personal stories in 'Injustice at Every Turn' are just a few examples of the distressing state of LGBT health in this country that must be directly addressed by federal policies and programs," Carey said. "We are pleased our survey was able to help inform the committee as it created the IOM report on gaps and opportunities in LGBT data and research, which shines a critical light on the health disparities facing LGBT people and provides recommendations to assist researchers in identifying and addressing these needs."

"Stigma underlies all of this."

The report comes as the result of an 18-month study, and explored three major areas, Judith Bradford told Bay Windows -- problems surrounding current population information; access to culturally competent healthcare; and certain health disparities faced by the LGBT community -- all, Bradford said, the result of social stigma against lesbian, gay, bisexual, and transgender people.

Health information about LGBT populations that's already available is flawed because of the absence of crucial information. "Most of what we know, most of our research has been about gay men and lesbians," Bradford said, "very little around bisexuals and almost nothing about transgender people. ...The knowledge base, in other words, was not well developed." This lack of information led to a specific report recommendation that measures be added to all federal surveys to capture data around sexual orientation and gender identity.

The second major area explored by the report, Bradford said, is access to healthcare for those who identify as lesbian, gay, bisexual, or transgender. "Healthcare providers may not have been trained and most are not trained in [working with LGBT patients] so they may not understand what LGBT people are like, and that we have different health concerns from heterosexual people," Bradford said. She named "cultural competence" as one important element of healthcare training that many medical representatives lack -- the ability and knowledge to interact with LGBT people in a way that best serves the patient. The IOM report includes "recommendations about getting the training programs in place so that LGBT people have access to care and feel able to trust the provider," Bradford said.

The third major area examines the health disparities suffered by the LGBT community in comparison to the general population. "We have these rates of health disparities [that when] compared to heterosexual people, are statistically significant," Bradford said. Access to culturally competent healthcare aside, Bradford said, this list also includes behavioral concerns, high rates of tobacco and alcohol use, mental health concerns, and HIV/AIDS. "Stigma underlies all of this," Bradford said in reference to the healthcare disparities, and indeed, each major issue explored by the IOM report.

Bradford chose the recent spate of suicides and suicide attempts among young people who identified as LGBT -- or were perceived to be -- as an example of one of the health disparities faced by the LGBT community. "This would be one of the things that would cause people to be more scared, depressed, or anxious," Bradford said. The report makes clear that this particular health threat is a problem for LGBT populations as a whole and a direct result of social stigma. "Unless things are targeted that need to get done," Bradford said, "these health disparities are going to stay."

How healthy are we?

Overall, Bradford said, the LGBT community overall appears to be in generally good health -- but that estimation varies significantly within the community. "Some of us are more privileged -- we live in areas like Boston, or areas where the gay community can be more open," Bradford told Bay Windows. LGBT people who live in urban areas where the community may be more socially accepted, she said, "are a lot more fortunate than LGBT people who may live in areas where discrimination and misunderstanding is higher. ...We really need to be looking more carefully at the subgroups of LGBT communities who are most disadvantaged."

Those subgroups, Bradford said, include transgender people "across the board"; racial and ethnic minority groups; members of the LGBT community who have not had access to comprehensive education; and those living with a low income.

While the report refrained from clinical or research information pertaining to HIV/AIDS, the virus was certainly not absent from the discussion. Bradford said that the report uses the HIV/AIDS epidemic as "a lens through which to look at how the gay community as a whole has responded over time...and have pulled together and demonstrated the resilience we have as a community to face a measured threat."

Several Institute of Medicine and National Institutes of Health studies have examined the progress of HIV/AIDS research from clinical or scientific standpoints, but this newest report uses the epidemic as an example of an important, ongoing challenge weathered by the LGBT community -- "the primary example of how it is that the gay community responded to a major threat."

The future of IOM recommendations

Praise for the groundbreaking report came quickly. "I want to thank the Institute of Medicine for conducting this important study, at the request of the National Institutes of Health (NIH), on the state of the science regarding the health of lesbian, gay, bisexual, and transgender people," Department of Health and Human Services Secretary Kathleen Sebelius said in a public statement March 31.

According to Bradford, the first place the LGBT community can expect to see the affects of the IOM recommendations is in healthcare training fields. "I think that we'll see action from healthcare training organizations -- medical schools, ongoing online training for practitioners," she said. Several healthcare programs have, in fact, already initiated the kind of culturally competent training to which Bradford referred. In addition, she said, "the Joint Commission is preparing to require hospitals and other programs that it accredits to treat LGBT people equally to everyone else."

"The report provides the scientific community with the first comprehensive overview of health-related research in this important area," Sebelius said. "It concludes by recommending that NIH develop and implement a comprehensive research agenda to advance our knowledge and understanding of LGBT health, including demographic studies and inequities in health care, and the social contexts in which LGBT people live. The report also calls for federally funded surveys and electronic health records to collect data on sexual orientation and gender identity while protecting patient confidentiality. In addition, the report recommends enhanced training to strengthen LGBT health research at NIH, and asks NIH to encourage grant applicants to address explicitly the inclusion or exclusion of sexual and gender minorities in their clinical studies."

Bradford said she's "very optimistic" about the future of the report's recommendations -- in particular a specific recommendation that will be implemented by the NIH, requiring funding "applicants to address why LGBT people are included in their studies, or not included in their studies," Bradford said. "That means people will have to think about it. Right now, there's nothing in grant applications that requires you to say anything about it. So pieces like that that may seem small can have a very large impact if they're implemented at the level of the National Institutes of Health."