If You Don’t Count Us, We Don’t Count

Our guest bloggers are Kellan Baker, LGBT health care analyst at the Center for American Progress.

A decade ago, the Department of Health and Human Services released a comprehensive plan to guide its role in addressing the health care needs of lesbian, gay, bisexual, and transgender Americans. Of the plan’s five major goals, stocking the storehouse of knowledge about health disparities related to sexual orientation and gender identity was a central priority.

A steering committee with members from almost every agency within the Department developed the plan. It came on the heels of a groundbreaking 1999 report from the Institute of Medicine on lesbian health that exposed huge gaps in knowledge not only about the health of lesbians but also about women and sexual minorities in general. At the time the steering committee was developing its recommendations, Healthy People 2010 (the nation’s blueprint for a healthier America for the decade between 2000 and 2010) had just come out with its first-ever objectives related to the health of lesbian, gay, and bisexual people, and LGBT health advocates were compiling the Healthy People 2010 LGBT Companion Document.

The Department began developing the plan in the waning months of the Clinton presidency, but it was not released until April 2001. By then George W. Bush’s Administration had assumed power, and LGBT health was not only taken off the priority list, it was shoved firmly back in the closet. The next eight years delivered little more than rollbacks of reproductive health programs and the rise of abstinence-only funding linked to programs imposing views of sexuality and gender that entirely erase the lives of LGBT youth. Those years did see dramatic increases in funding for HIV and AIDS as part of the President’s Emergency Plan for HIV/AIDS Relief (PEPFAR), but almost nothing went to help track or stop the epidemic among gay and bisexual men and other men who have sex with men, as well as among transgender women.

Where have all the data gone?

The 2001 strategic plan, as novel and relevant now as the day it was released, was one of the first documents presented to the Obama Administration transition team in 2008 by LGBT health advocates. Since then, the Department of Health and Human Services has created a Department-wide interagency work group dedicated to advancing LGBT health. This group provided the internal coordination that led to the release last April of a list of recommended actions to improve LGBT health, again with a central priority of stocking the storehouse of LGBT data through inclusion of sexual orientation and gender identity questions on federally supported surveys. Healthy People 2020 debuted in a new online format at the end of 2010, with a brand-new LGBT Health topic area.

But something wasn’t right: the LGBT Health topic area, unlike the majority of the other 42 topic areas in Healthy People 2020, has no objectives yet. And why not?

The Institute of Medicine, in its groundbreaking March 2011 report, The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding, holds the answer. Charged with identifying research gaps to plug in our understanding of LGBT health, the IOM committee soon found itself staring not at a decorous assortment of gaps but into a yawning void. Data on LGBT health – conclusions drawn from rigorous research and informed by such basic concepts as how many LGBT people live in the United States – remain shockingly absent.

The absence of LGBT data is not an accident. The researcher Ulrike Boehmer, in a 2002 study, examined 3.8 million citations from articles in the National Library of Medicine published between 1980 and 1999. Of those 3.8 million articles, just 3,800 (0.1 percent) were related to any aspect of LGBT health. During the George W. Bush Administration, researchers submitting proposals to the National Institutes of Health were routinely told to remove words like “lesbian” or “gay” from their proposals if they had any hope of receiving funding.

In the ten years since the steering committee at the Department of Health and Human Services first announced its recommendation to improve nationwide data collection on sexual orientation and gender identity, a handful of public and private surveys have attempted to collect enough data to paint a clearer picture of the health of LGBT people. But without a consistent nationwide strategy of designing good survey questions on gender identity and sexual orientation, actually putting them on surveys, and analyzing the responses, there is little that can be done to explore even the general health issues affecting large segments of the LGBT population or to say anything meaningful about the experiences of smaller groups like LGBT communities of color or transgender people.

Data geeks unite

Last year’s Affordable Care Act (the health reform law) includes no explicit reference to data collection among LGBT populations. The law’s main data-related provision, Section 4302, required the Department of Health and Human Services to collect better data on five categories associated with health disparities: race, ethnicity, sex, disability, and primary language. Fortunately, LGBT health advocates helped keep open a small window in the law that allowed the Secretary of Health and Human Services to add any other categories that she deems appropriate.

To recap: the Department’s LGBT work group provided the recommendation. Healthy People 2020 asked for the data to develop its LGBT health objectives. The Institute of Medicine urged action. And under the leadership of Secretary Sebelius and the Office of Minority Health, health care reform provided the key. With this small key, the door to LGBT data collection clicked open.

On June 29, 2011 the Department of Health and Human Services released its new plan for data collection on the health disparities that affect lesbian, gay, bisexual, and transgender people, alongside those impacting communities of color, people whose primary language is other than English, people with disabilities, and women.

These disparities, despite the lack of data to help us fully understand them, are so glaring that they have leapt from obscurity and the rare scientific or medical article into the media consciousness of America. LGBT youth face relentless bullying and harassment at schools across the country. LGBT elders often have to go back into the closet when they enter nursing homes that don’t train their staff to treat gay and transgender people with dignity and respect. LGBT people and their families are discriminated against in jobs, relationship recognition, health care, and housing. As a result, issues like depression, smoking, and drug use take a high toll on LGBT communities. Gay and bisexual men and transgender people, particularly people of color, continue to bear the brunt of the HIV/AIDS epidemic in the U.S.

Numerous leading health organizations, including the American Medical Association, the American Psychological Association, the American Public Health Association, and the Joint Commission on hospital accreditation, have called for better data collection on these health disparities in surveys and health care settings. The Human Rights Campaign’s annual Healthcare Equality Index, which was just released on June 30, is using its survey of LGBT-inclusive policies and practices at more than 200 health care facilities across the country to explore how best to provide opportunities for LGBT people to safely talk about their sexual orientation and gender identity with their health care providers. Only when providers know who their LGBT patients are can they provide care that truly speaks to all aspects of their lives.

Shining a light

The biggest health topic that has dominated the Obama Administration thus far is the passage of the Affordable Care Act. Much of the success of the health care reform effort rests on data, because good data – including a clear understanding of what our nation’s biggest health challenges are and a rigorous evaluation of what really works in tackling them – are essential for developing good health policies. As long as we lack comprehensive national data on the health of LGBT people and the diversity of the LGBT population, all of the debates about issues like health care access, quality of care, and health disparities will continue to happen largely without any consideration of their impact on LGBT people and their families.

The recent commitment from the Department of Health and Human Services to add questions on sexual orientation and gender identity to its largest nationwide survey, the National Health Interview Survey, is a vital investment in advancing the health and well-being of LGBT people across America. The inclusion of these questions on the National Health Interview Survey and other health and demographic surveys will be the foundation for the development of Department-wide standards for collecting high-quality data on the health of LGBT people. And where the Department of Health and Human Services leads, other agencies can follow.

In 2001, we had a plan, urgency, and hope. Now, in 2011, we also have leadership and action. Working together, the Department of Health and Human Services, the White House, LGBT health advocates, and the LGBT community can finally begin to shine light on the real struggles and resiliency of LGBT people in creating healthy lives and communities for themselves and their families.