Say My Name: LGBT Health Starts to Count

While people cheer over marriage equality finally arriving in New York, I have watched a much quieter victory unfold.

The U.S. Department of Health and Human Services rolled out plans last week for adding LGBT data measures to the leading federal health survey. This huge milestone for our communities is a moment to be celebrated. And although HHS secretary Kathleen Sebelius announced her commitment to collect LGBT data, those of us who were advocates for years knew how long it could take for the federal government to go from promise to reality, so we were waiting for a little more than good intentions. And we got all that and more.

Secretary Sebelius and the Office of Minority Health have a plan.

Their time line includes not only adding the tested LGB question to health surveys but also developing and adding much needed gender identity questions. The section of health care reform that requires better race and ethnicity data collection also allowed HHS to suggest new populations to measure. So HHS has now committed to developing a full standard for the routine measurement of LGBT data over the next few years. Again, this may seem small and unimportant to many, but as someone with more than a few pocket protectors in my drawer, for whom the label "data geek" isn't foreign, I know this is a moment I'll talk about well into my retirement.

Think what it would be like if you opened your dictionary and couldn't find the words lesbian, gay, bisexual, or transgender. What if the only place those words even existed was in some online urban slang dictionary? The truth is that when it comes to federal and state funding, priorities and resources are all driven by the "dictionary" of what data agencies can cite. Without those data, they don't say our name, don't include us as prioritized populations in funding announcements, don't allow us to have the same vocabulary to prove why we need to be included in grants. We just don't exist.

Hate crimes against us wouldn't get counted, and we wouldn't even know how many service members were released under "don't ask, don't tell," how many same-sex couples might want to marry, how many of us are parents, and myriad other information about LGBT people.

Now one of the largest agencies in the federal government has announced that it is introducing the words lesbian, gay, bisexual, and transgender into the dictionary. It is doing it publicly, with millions of dollars of internal resources being spent to make sure it is done with every possible scientific validation. The research it does to find the best way to ask the questions is work that can be replicated by every other agency and should be quickly. Someday soon, we will be on the U.S. Census as well.

A friend emailed me, wishing me "Happy Data Day! I presume it's already a national holiday, right?" Yes, I think this moment really is our holiday, because many things can come and go in this world, but data are forever.


Dr. Scout is a transgender father of three kids and works as an adjunct assistant clinical professor at Boston University School of Public Health, the director of science policy for the National Coalition for LGBT Health, and as the director of the Network for LGBT Health Equity. The Network is a project of The Fenway Institute at Fenway Community Health in Boston, MA.