06/13/2013 11:14 am ET Updated Feb 02, 2016

Déjà Vu: National Surveys Leave Trans People Behind

You know your salary, right? But until you have proof of it on a W-2, it'd be pretty hard to do your tax return. What many people don't realize is that national data collection works the same way. LGBT health disparities, housing challenges, access to care problems, hate-crimes -- all the flotsam and jetsam of discrimination is effectively invisible if national surveys don't count us. Even though many smaller or regional surveys have shown beyond a doubt these problems exist, citing them is often like trying to tell the government your salary. Those data just don't carry the same authority as federal data in grant applications, policy decisions, and resource allocation. That is why I am one of hundreds of people at the national level who just keep beating this drum for data collection.

These drum beats have been heard. Exactly two years ago we were extremely pleased to celebrate U.S. Department of Health and Human Services Secretary Kathleen Sebelius' announcement that LGBT data collection was going to be added to the most frequently referenced federal health survey, the National Health Interview Survey. Data wonks everywhere jumped up cheering (pocket protectors flapping in the wind). They just had to figure out how to ask the question. I know it seems crazy, but it is not as straightforward as you may imagine.

The feds understood the delicacy of phrasing the questions well. By the time they made this announcement, they'd already started testing the best way to ask LGB and T. By today, we should have been resting easily in the knowledge that LGBT data collection was on track on the most influential federal health survey.

Once these data from the National Health Interview Survey start to hit the street, they will literally unleash a new wave of knowledge about LGBT health. Survey people talk about it being a "data holiday" when you first get new data; well, this would have been the biggest data holiday of my lifetime. Scientists would be analyzing that first data set every which way from Tuesday, slicing and dicing it to fill in so many holes in our knowledge base. Even the things we already knew will now have the authority of being supported by federal data.

While those data are on track to come out, unfortunately our data holiday will only include LGB but not T data. Ironically, this is despite the fact that some of the loudest voices in this advocacy are, like me, openly trans. I'll cheer for all the LGB people I love, but it will be an empty data holiday for me.

Why won't we see trans data? HHS decided to add LGB data collection to the National Health Interview Survey but instead of adding T there, they are only suggesting states add it to the Behavioral Risk Factor Surveillance System surveys, and most states said, "No, thanks."

Should we be satisfied with this situation? I would respectfully say no. No one can deny that the need for trans health disparity interventions is high; trans studies consistently report even higher levels of discrimination and related health problems than in the LGB population. But as the wave of LGB-only data rolls out in future years, it will create an LGB-only foundation for more proposals, more research, more interventions. Leaving T data collection out fundamentally cleaves these overlapping communities apart and leaves the effort to eliminate trans health disparities at a great disadvantage.

HHS has absolutely taken great steps to address long-overlooked LGBT health disparities. I commend them highly for each of those steps. But this is one area where I can't in all honesty praise their work. As a trans scientist, I'm tired of the feeling of déjà vu I get every time I see LGB and not T move forward.

What can be done? Several things can redress this omission. T could be added alongside LGB data collection to the National Health Interview Survey. LGB and T data collection could be made mandatory for the Behavioral Risk Factor Surveillance System. LGBT data collection could be added to other key surveys. The National Center for Health Statistics could quickly adopt a best practice T question (or questions) so people who manage other federal health surveys and want to collect T data can do so, as in the case of the National Adult Tobacco Survey. Adopting a best practice question may require more testing, but the LGB testing was accomplished in a matter of months, not years.

Ideally LGB and T data collection would be mandatory for all federal health surveys, but right now it would be progress to add it to even one.

Just as openly trans people loudly championed the push for LGBT data, I hope LGB leaders stay by our side now, because LGB data collection might be moving forward but déjà vu, T is being left behind.