Backstory, win, & work ahead: Secty Announces HHS Will Collect LGBT Data

by Scout

Director, Network for LGBT Health Equity

A project of The Fenway Institute in Boston, MA

 

**Wanna cut to the news? Skip down to Today’s News section**

Have we mentioned data yet?

Folk know how we’ve been part of the science advocacy block asking for LGBT data collection for years now. Way back in 2008 we first prepared our Surveillance Briefing Paper marshaling the evidence to help states and feds add LGBT measures to their surveys (that paper was developed at the request of West Virginia no less). Excerpts from that paper have been asked for by feds as recently as yesterday. Then we actually ran a big project to cognitively test possible T-inclusive surveillance questions at the behest of Minnesota (who balked at adding just LGB questions to their surveys, kudos them!).

Well since then, we’ve been bold in continuing to speak up and endlessly meet with federal officials from CDC to the White House and ask for data collection. We’ve prepared more briefing papers on the subject; created many talking point sheets for feds; submitted plenty of testimony; helped states add LGBT questions; announced when the National Center for Health Statistics started testing questions; set up meetings with their staff and community experts; advised HP2020 staff on data issues; ran a community petition with Join The Impact; helped plan and execute joint data advocacy efforts with the most excellent National Coalition for LGBT Health and New Beginnings Initiative; helped with a widespread community effort to add T questions to YRBS; co-hosted the recent Williams Institute Gender Identity Surveillance Roundtable; and ran plenty of action alerts telling folk when and how to speak up. (It still makes me chuckle to think of the time years ago when HHS called on Friday to request a LGBT data briefing paper for the White House by Monday. Weekend data geeks unite!)

You probably saw CDC just recently sent a letter in response to our action alert on data collection at Creating Change. Then just two weeks ago, we worked with National Gay and Lesbian Task Force to do something we haven’t even mentioned yet, create a health data cover letter for their 60k signature Queer the Census Petition and submit it all to Secty Sebelius. (Proud of that).

So, suffice it to say, data’s been on our mind for a while. And a few others too…

Who are some of the many leaders and allies in this push?

The National Coalition for LGBT Health has been an early and stalwart leader in pushing LGBT data collection (kudos to Rebecca Fox, Kellan Baker and Hutson Innes). NGLTF and the New Beginnings Initiative (yay Bradley Jacklin) have jumped in with strong focus on this issue (and inspired work around the Census, thank you Jaime Grant). Of course Gary Gates from The Williams Institute is happily everpresent in data discussions. Other excellent individuals and organizations have done great work here, including Judy Bradford and other scientists at our own Fenway Institute. The gaydata founder, Dr. Randy Sell, famously said he’d retire when the feds finally collected LGBT data (we’ll all have to visit him on whatever FL golfcourse he chooses). Special shout also to Allison Gill and GLSEN for starting the big community push that got a T question added to YRBS. And I would be remiss if I didn’t also give thanks to the efforts of the many non-LGBT internal allies at the state and federal level who have really gone to bat to add LGBT data (many of whom I bet would prefer to stay low profile). So have our five sister tobacco disparity networks, the 4 racial/ethnic disparity networks and the poverty network. In fact, overall, of special note are the many non-LGBT racial/ethnic disparity leaders who have really stepped up and helped advance this issue. The Network for LGBT Health Equity is honored to work with each and every one of you.

Why is data so important?

Why? I could give you plenty of reasons, but the most profound is back around 2002, when Dr. Rosie Henson, the then head of Office on Smoking and Health at CDC (now she’s all fancy and moved pretty far up the ladder), came to several of us at the first LGBT Tobacco Summit and said (something like) “Please come testify about how LGB* needs to stay in the tobacco section of Healthy People 2010, because without data from the major surveys you might be kicked out as a disparity population.” (*=T wasn’t in then).

Well, with plenty of evidence even back then that we smoke at rates that are from 35% – almost 200% higher than the general population, that plea really drove it home… there’s scientific evidence, then there’s scientific evidence the government will accept. And in order to get in the second group, you need to have LGBT data collected on major surveys.

The wins and the work still needed

There have been many tangible outcomes from all this work, in fact I should really go through and document them in detail. But some fast ones that come to mind are: we obviously stayed in HP2010, and with plenty of work with them, we got much bigger focus in HP2020; data collection was called for in CDC recent disparities report; in the National Partnership for Action Plan to Eliminate Disparities; in the Tobacco Action Plan; they even added LGBT measures to the National Tobacco Survey; and they started testing measures for inclusion in the National Health Interview survey last year. But while that’s all well and good, we still don’t have those measures on any other federal instruments.

Working with our friends & new(ish) media

Well, last week we jumped up our game a little more. With the help of our old friend (and staunch tobacco control advocate) Mike Rogers, we got to the LGBT Pre-Con to the big Netroots Nation conference (aka #NN11LGBT). This conference is all about creating social change through online action. As I reported earlier, it was great that we got to be in the room with a bunch of LGBT bloggers, esp when they asked, “what isn’t being covered?” Well, obviously we stood up and said, health, tobacco, and right now in health the data collection issue is hot. Well, it was great that by the end of that event, Chris Johnson of the Washington Blade said he’d be happy to do a story on data collection. Score! (I know, I know, next to marriage we’re practically overrun with stories about LGBT data collection, right?) But the wonderful news doesn’t stop there. Yesterday Chris, in a burst of amazing efficiency just stood up at the White House in front of Secty Sebelius and asked her (with quite a lot of intelligent detail), what she was doing about LGBT data collection.

Today’s win

This all gets us to our delightful denouement (or climax for us english speakers). When Chris asked that Sebelius went on record saying:

“We fully intend to collect LGBT data… So it is definitely a commitment.  We will be adding data questions to the National Health Surveys.” – HHS Secty. Kathleen Sebelius

Full stop. *please take a moment to breathe deep, savor the beauty of this, and thank the buckets of friends and allies who helped this happen*

On behalf of the Network for LGBT Health Equity and in fact, every single LGBT person who is affected by health, thank you Secretary Sebelius. You are the first of the many cabinet members being asked who has publicly committed to ending our invisibility, which is probably the largest single step that can be taken to ending discrimination against us.

Full stop, another deep breathe. Wonderful really.

Secretary Sebelius, we will assist you in every way possible to make this commitment a reality.

What will make it a touchdown?

Now, without one iota of disrespect to the magnitude of that step, we’d also like to say the following. You know the health and lives of the most discriminated against LGBT people literally hang in the balance as we wait for more federal efforts to eliminate our health disparities. So, we look forward to hearing the real plans for how and when this LGBT data collection will begin. 

And be sure to see the excellent Washington Blade story by Chris Johnson on this all.