Kenneth Johnson and James Massey met on June 28, 2000, and within four years they had become domestic partners and finalized the joint adoption of their son. Then in 2006, James suddenly collapsed from a cerebral hemorrhage at a CVS drugstore in Southwest D.C. and was rushed to Howard University Hospital.
Kenneth frantically tried to locate James upon arriving at the emergency room moments later, explaining to the nurse on duty that he was James’ partner of six years. The nurse responded, “You’re just the friend; I can only release information to immediate family members.” As a result, Kenneth was forced to leave his partner and dash home in rush-hour traffic to retrieve James’ living will and medical power of attorney documents to prove both their relationship and that Kenneth had the authority to make medical decisions on his partner’s behalf. But during his absence those critical decisions were made without Kenneth’s consent – counter to James’ wishes.
James died the next morning and all of the unnecessary suffering that occurred during the waning moments of his life could have been avoided were LGBT people treated the same as heterosexuals in the eyes of the American healthcare system.
Similar stories, affecting countless LGBT Americans, play out in large and small ways each day in hospitals throughout the country. According to the Human Rights Campaign’s most recent 2010 Health Equality Index (HEI), sexual minorities are still commonly omitted from most hospitals’ patient non-discrimination policies, with 93 percent of 200 of the nation’s largest healthcare facilities failing to include “gender identity” and 40 percent leaving out “sexual orientation.” The HEI also revealed that a majority of the 178 American hospitals and clinics evaluated fell woefully short in addressing the health needs and basic rights of LGBT people on four key measures: patient non-discrimination, visitation rights, cultural competency training and employment non-discrimination.
Compounding this problem, LGBT youth are more than three times as likely to commit suicide as their heterosexual counterparts and are at a significantly increased risk for smoking, abusing drugs and alcohol and engaging in unprotected sex. Recently, the CDC revealed that gay and bisexual men are 44-86 times more likely to become HIV-positive in their lifetimes than heterosexual men and account for 53 percent of new infections nationwide. As a result of this confluence of disparities, when LGBT people are misunderstood or ignored when they are in greatest need of compassion and are at their most vulnerable, the yawning divide only widens between the care LGBT people disproportionately need and the care they actually receive.
However, after last week’s release of a new report by the Institute of Medicine (IOM), “The Health of Lesbian, Gay, Bisexual and Transgender People: Building a Foundation for Better Understanding,” this reality may soon change, as health officials begin to research the magnitude of LGBT health disparities and close the gaps identified.
Although the IOM has been previously commissioned to review the state of health of various sub-populations, this report marks the inaugural comprehensive assessment of the entire LGBT community – establishing a baseline on which to establish a future research agenda. In 1999, the IOM released its first report on a sexual-minority population, “Lesbian Health,” which demonstrated a glimpse of the disproportionate toll that cancer, obesity, depression and substance abuse take on this population.
However, in the years since the release of the 1999 report, health disparities suffered by lesbians – as well as gay, bisexual and transgender Americans – have remained common, from accessing care at a clinic where registration forms and electronic medical records lack options to identify as having a particular sexual orientation or relationship status to overt acts of discrimination, such as health providers refusing to treat patients because of their gender expression.
LGBT advocates welcomed the commissioning of this IOM Report by the National Institutes of Health (NIH). At the formal report release on March 30, the IOM hosted a panel of committee members who were responsible for authoring the report and determining its seven key recommendations.
The 17-member committee’s five-fold charge was to: conduct a review of the state of the science on the health status of LGBT populations; identify research gaps and opportunities; outline a research agenda; discuss research methods; and consider research training needs to foster the advancement of knowledge about LGBT health. The committee held three public meetings over 18 months in San Francisco and Washington, D.C., to solicit feedback from the community and undertook a literature review of the available evidence on LGBT health.
The findings were synthesized and discussed by committee members to determine their priority recommendations. Fourteen external individuals, chosen for their diverse perspectives and technical expertise in LGBT health, reviewed the final report in effort to minimize bias. In short, the process through which the IOM assembled the report was rigorous and scientific, ensuring its integrity as a guide to improving LGBT health research and, by extension, LGBT health outcomes in America.
The primary recommendation instructs the NIH to “implement a research agenda designed to advance knowledge and understanding of LGBT health.” Importantly, the committee acknowledged that in meeting its charge to identify existing gaps in LGBT research, it found the holes to be so extensive that a complete conceptual overhaul of the existing research agenda was in order. Also of note, most of the research performed to date was on adult lesbians and gay men, with a dearth of evidence available on bisexual and transgender individuals that would need to be addressed.
As such, an approach was prescribed to provide a new conceptual model for how research should proceed. This model delves beneath the traditional four LGBT monoliths, to explore more nuanced sub-populations and cross-cutting perspectives shared by these groups. In particular, use of a “life course framework,” which focuses on the continuum from childhood to death and emphasizes inclusion of longitudinal studies and age groups that have been historically ignored, ensured greater representation of youth and elderly populations.
Additionally, an emphasis was placed on including a minority stress perspective, meant to incorporate the role that stigma plays in LGBT health, as well as an intersectional examination of LGBT people in the context of racial, socioeconomic and geographic diversity. Finally, committee members also stressed the need to examine the social ecology of the LGBT community and its interplay with health outcomes. Layered on top of this conceptual framework, five priority areas of research were identified to include: social influences; healthcare inequities; intervention research; transgender-specific health needs; and perhaps most importantly, demographic research.
The struggle to improve our health and safety every time we interact with the healthcare system hinges on us being counted. In our data driven world, ensuring LGBT Americans can demographically identify as such is at once a simple and monumental step in improving the quality of care LGBT patients receive. Addressing this matter, subsequent recommendations include collecting data on sexual orientation and gender identity in federally funded surveys administered by the Department of Health and Human Services (HHS), as well as enabling health providers to include this information in patients’ electronic health records.
One of the committee members for the IOM report, Dr. Robert Garofalo, Associate Professor of Pediatrics at Northwestern University’s Feinberg School of Medicine and Director of Adolescent HIV Services at Children’s Memorial Hospital in Chicago, stated that the “inclusion of sexual orientation measures into federal surveys, such as the National Health Interview Survey, would signify a sea change for the LGBT population, because it will allow us with some degree of precision to finally be counted in a way that makes assessing our health needs and disparities feasible.” He continued, “The science is at a place where the inclusion of such questions could be done with relative ease, if there were the political will to do so. If this occurred it would be the biggest game changer in LGBT health imaginable.”
Above the IOM seal, emblazoned across the cover page of this report, runs Goethe’s quote, “Knowing is not enough; we must apply. Willing is not enough; we must do.”
To this end, the federal government has already taken some encouraging steps forward on behalf of LGBT Americans. Last year, the passage of the Affordable Care Act dramatically increased health coverage for disproportionately uninsured LGBT individuals. More specifically, President Barack Obama also issued a Presidential Memorandum on Hospital Visitation, which addresses the rights of patients to designate visitors regardless of sexual orientation or gender identity.
On April 1, Secretary Kathleen Sebelius issued a new policy explicitly requiring HHS employees to serve all individuals who are eligible for the department’s programs “without regard to any non-merit factor, including… sexual orientation [and] gender identity.”
And now, on the heals of the release of the IOM Report, Dr. Meredith Temple O’Connor, the newly appointed Acting LGBT Coordinator at the NIH, who also spoke at the panel last week, said she is poised to establish an internal structure to deliberate on the report’s findings and begin to fill the identified gaps of the report’s prescribed LGBT health research agenda.
At this critical juncture, the scientific community has spoken, backed by evidence presented in the IOM Report. As a consequence, policymakers will now have the knowledge and tools they need to continue to target and expand resources to improve the health of LGBT communities. But as Dr. Garofalo pointed out, it is now a matter of political will to ensure that LGBT Americans receive the sensitive, quality care they deserve.