Dan O'Neill

Counting on Being Counted

Filed By Dan O'Neill | August 29, 2011 7:00 PM | comments

Filed in: Politics, The Movement
Tags: Barack Obama, Department of Health and Human Services, health disparities, LGBT health, public health, Sibelius, White House

Groups that are not counted do not exist in the eyes of our federal and state governments; and as a consequence, no monies flow their way to meet their health needs. LGBT people, in particular, continue to go uncounted, leading us to suffer some of the worst health disparities faced by a minority population.

LGBT_Health_Data.jpegAs such, addressing health disparities has become increasingly in vogue, and yet the LGBT community somehow continues to fall short on this front. Case in point: the Affordable Care Act, which passed in March 2010, invests in the improvement of health data collection and analysis strategy. Section 4302 contains provisions to improve health disparities by requiring that all federal data collection efforts "gather information on race, ethnicity, sex, primary language, and disability status." Unfortunately, LGBT data requirements were not specifically included, but the law does provide HHS the opportunity to remedy this shortfall through collecting additional demographic data, as needed, to further improve our understanding of healthcare disparities.

HHS now intends to use this foothold to take the necessary steps to collect data on our lives - but that's only if we have the political will to do so and follow through with pressuring HHS to extend its reach on our behalf. I remain skeptical, despite recent encouraging news from the White House and the Secretary of Health & Human Services (HHS), Kathleen Sebelius, that we will soon move forward on collecting LGBT health data to the extent we've been lea to believe. At this moment, when we should be accelerating our efforts on this matter, the pressure from the LGBT community seems to have noticeably waned.

The Response by HHS

In early June, I had a brief opportunity to speak with the Sec. Sebelius, during which I asked the question burning on the minds of so many in the LGBT community: "When will we be counted? And when will questions about LGBT Americans be included in HHS-sponsored health data collection systems, especially in the National Health Interview Survey?"

The National Health Interview Survey (NHIS), after all, is the grand-daddy survey of our public health data collection system, to which most other national and state-level surveys look for data comparison. Getting questions on the NHIS typically causes a chain-reaction, driving inclusion of those questions on numerous other public health surveys at all levels.

Sec. Sebelius responded by saying that collection of LGBT health data is a priority of HHS and that researchers are currently vetting questions to ensure that information will be gathered most efficiently, minimizing false positives and bias.

When a reporter from The Washington Blade, Chris Johnson, posed a similar question on June 21, Sec. Sebelius echoed publically her previous claims, saying that LGBT health data collection "is definitely a commitment." She continued, "We will be adding data questions to the National Health Surveys. And right now we are looking at developing a slew of questions, market-testing them, coming back and making sure we have the right way to solicit the information that we need." President Obama bolstered her remarks a week later, when he stated, "[HHS] has begun planning for the collection of LGBT health data."

Additionally, HHS also released a fact sheet that outlines clear steps for developing better questions on gender identity along with a timeline, indicating the earliest possible implementation of sexual orientation data collection into the NHIS would happen in 2013. Of course, this implementation is contingent on successful cognitive testing of questions and multiple rounds of field studies - all of which strikes me as peculiar, since a wealth of rigorous studies already exists on how to ask questions accurately about sexual orientation.

In the wake of these announcements, I've heard multiple LGBT advocates suggest our work on this issue is done; that now it's only a matter of time. However, planning and actually implementing are too separate actions; and I'm not so convinced this matter will pan out as well as we hope, especially if we stop the pressure now. It is important for us to remember that this work is being done not because it's required by law; but rather, because it's by the discretion of the current administration at the behest of our community. And that dynamic can easily change the longer we wait, especially if our goals are not met before this upcoming election cycle.

The Question(s)

I'm all about doing what's necessary to strengthen the quality of data we collect; but there comes a point at which the benefit of ensuring that data collection is marginally more accurate is no longer worth the cost of further postponing collection of real data on LGBT people. All surveys are imperfect and can be improved in years following their initial implementation; however, nothing can undo the injustices LGBT people currently face in our healthcare system except starting to document those disparities now.

The current challenge Sec. Sebelius faces is not a new one. On Oct. 24, 1997, then-HHS Secretary, Donna Shalala, faced an analogous situation, when she mandated "the inclusion of information on race and ethnicity in all HHS-sponsored data collections systems." Within a week the HHS-wide policy went into effect, sans the unnecessary field testing that is now required for sexual orientation questions.

So what's different between now and 1997? Nothing really; as Sec. Sebelius could just snap her fingers, make a call over to the head of the National Center for Health Statistics, directing the inclusion of questions to appear in next year's NHIS. At present, one of those questions should be none other than: "Do you identify as heterosexual or straight, lesbian or gay, or bisexual?"

Although less inclusive than many would hope, such an identity-based question would go a long way as a first step in data collection. I believe a yet-to-be-determined gender identity question could also be included in this timeframe, if we push to hasten the process already outlined in the administration's timeline. We must also redouble our efforts to educate the public about gender identity; current data suggest an appalling lack of understanding by the general public about what it means to be transgender.

Consequences of Delays and Roadblocks to Implementation

My fear is that if we wait for the completion of this "market-testing," which will take until beyond winter 2012 at earliest, as per the HHS timeline, the LGBT community will be too preoccupied with upcoming elections to notice any loss in momentum on developing gender identity questions or unnecessarily restrictive preconditions placed on how sexual orientation questions are asked on the NHIS. Such restrictions would likely trickle down to future federal and state-level surveys that look to NHIS as the gold standard, hindering the broader roll-out of our LGBT data collection agenda.

Importantly, inclusion of LGBT questions on the NHIS is not as much an issue of the direct costs of adding new questions, as it is one of the opportunity costs of which existing questions to remove to make room for ours. There are certain limits on how much time federal employees can spend interviewing subjects, resulting in a cap on the number of questions that can be asked for the NHIS. As a result, the likelihood that the LGBT community will receive more than two questions - at least for this first go around - is highly unlikely. So despite what many of us may believe about a "whole slew of questions" being market-tested to include in one fell swoop; that's not likely to happen.

This realization presents another ENDA-like conundrum for our community, whereby the initial question asked will address only sexual orientation, if a separate gender identity is not ready for inclusion. At present, this problem seems unavoidable due to the dearth of data available on how to ask questions that accurately identify transgender people, compounded by the public's ignorance of the concept gender identity and how it's separate from sexual orientation. Moreover, the current transgender questions available are in terrible disarray and in much need of refinement and further testing before they're ready for primetime. Thus, we should now push much harder to hasten the timeline on transgender question development. Otherwise, I fear this situation may pose strife within our own ranks that could hinder initial efforts to collect data.

What to Do Now

In sum, waiting for completion of the "market-testing phase" of LGBT questions in the pipeline risks our effort being side-tracked in the middle of 2012 elections or that questions may be ultimately saddled with unnecessary restrictions. As such, I believe we need to increase pressure on Sec. Sebelius to include at least one identity-based question on sexual orientation this year and to lobby for an accelerated development of a gender identity question. These actions would be small but critical steps to lay the foundation for a future suite of questions to fully address the health needs of the entire LGBTQ community. Otherwise, there's no chance that inclusion of LGBT-related questions into the NHIS will happen this year or next - critical time lost that will negatively impact the lives and well-being of our community.

We have come together many times before to somehow overcome formidable challenges throughout our history wrought with public health crises. Now this final challenge of collecting data on our lives may be one the most important battles we face to improving the health of LGBT people and bring us out of obscurity. And in the process, we will not only promote a society more accepting of LGBT people - we will also become a healthier community.


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It is a huge challenge to design questions for the trans communities that will satisfy the extremely polarized identities and viewpoints we include. I'm afraid this is yet another very good example of where indulging rancorous, uncompromising disagreements and virulent competition for legitimacy and priority between trans people of different persuasions will seriously hinder our progress in obtaining concrete benefits and rights to our share of the pie. We remain at unbending odds with each other, and unable to agree on language or priorities, never mind strategy, and our internecine fury holds us back.

Can't we take steps to come to some very basic consensus about language, enough to ask reasonable questions on a public health survey? We need health care provisions sooner, not later. Please. let's not let the perfect stand in the way of the good. Lives are at stake.