During the month of June, I had two root canals, a filling, and a tooth extraction. Only the first root canal was planned — the rest were either emergency events (the tooth extraction for a broken canine tooth) or urgent events (the filling and the second root canal). (These are on top of the tooth extraction I had of a few months ago — the one where I had that incredibly tough case of dry socket.)

In August, I’m currently scheduled to receive two crowns and a bridge the a bridge for tooth extraction of a few months ago) — still to be scheduled is a dental implant for the latest tooth extraction.

My first comment: “Ouch!” My dental problems have left me in pain, and painkiller haze, for much of the past month. For me, it doesn’t take much external stress (such as physical pain) to combine with my cyclothymia — something Dr. Akiskal, the psychiatrist who developed the bipolar spectrum (as well as my diagnosing psychiatrist), as bipolar type II ½ — to limit my ability to fully function in society. So for me, my dental issues triggered issues with my chronic, underlying, healthcare condition.

Thumbnail Link to HHS Media Release: Affordable Care Act to improve data collection, reduce health disparitiesThe Veterans Healthcare Administration (VHA) — part of the Veterans Administration (VA) — is my dental care provider. This is because I’m a Navy, 20-year retiree and disabled veteran. I fell into a huge safety net. The VA is my dental provider because I’m a disabled Persian Gulf War veteran; this is because when my service connected disabilities were evaluated by the VA in 2004, I was awarded a 100% VA Disability Rating.

In other words, I’m lucky. As the health impact of my bipolar condition, diagnosed while I was in the U.S. Navy, has progressed, I fell into a huge safety net. You can’t imagine how thankful — how grateful — I am for that huge safety net.

I’m certainly not unique in being a transgender veteran accessing healthcare through the VHA. But when I talk to people about being a transgender veteran, accessing healthcare from the VA, questions that frequently comes up are “How many transgender veterans accessing the VA healthcare system?” and  “What kind of healthcare are transgender veterans receiving?”

Nobody really knows at this point. There has been no systematic, mandated collection of healthcare assessment data related to gender identity, or the sexual orientation either for that matter, of patients accessing the VA’s healthcare system.

Or for that matter, any U.S. department. No federal agency had been collecting data on lesbian, gay, bisexual, and transgender (LGBT) community as a matter of agency policy.

Well, that just recently changed. On Wednesday, June 29, 2011, the Secretary of the Department of Health And Human Services (HHS), Kathleen Sibelius announced that it’s going to begin collecting data on lesbian, gay, bisexual, and trans people.

That’s right, the HHS is going to begin counting and collecting data on trans people. This is in accordance with SEC. 4302. (Understanding Health Disparities: Data Collection And Analysis) of the Affordable Healthcare Act.

The National Center for Transgender Equality (NCTE) described how this is going to impact transgender people in this way:

[More below the fold.]

  • Public health data has never really been collected by the federal government.
  • Federal public health data is the gold standard in public health data.
  • Thumbnail Link To NCTE Email Blast: We Are Being Counted

  • Without such data, getting the federal government to focus on a public health problem is extremely difficult or impossible.
  • Soon (or at least in a few years), we will have good public health data we can use to advocate with the federal government for programmatic focus on trans health disparities.

Mara Keisling, the executive director of NCTE, added:

“In other words, if there is no federal population-based study data identifying and quantifying a public health issue, there will be no governmental focus to solve it. Because of the HHS announcement [on June 29, 2011], there will soon be federal population-based public health data on a variety of trans public health issues.”

NCTE reports that the timeline, as it currently stands, to collect data related to gender identity and sexual orientation:

  • June – December 2011: Continue cognitive testing and begin field testing of sexual orientation data collection.
  • Summer 2011: Conduct first roundtable on gender identity data collection. development. Complete initial development of sexual orientation data collection questionnaire.
  • Winter 2011: Conduct follow-up roundtable on gender identity data collection.
  • Spring 2012 Conduct and complete initial field testing of sexual orientation data collection. HHS Data Council presents a strategy to include gender identity data collection in HHS surveys.
  • Winter 2012: Conduct and complete large scale field test of sexual orientation data collection.
  • 2013: If the field test is successful, implement new data collection on sexual orientation into the full NHIS data collection.

The full plan for how the HHS is going to implement this policy is outlined in the HHS factsheet, entitled Improving Data Collection for the LGBT Community.

NCTE identified who was instrumental in getting this initiative started in their blog post U.S. Dept of Health and Human Services To Begin Counting Trans People:

NCTE and our allies have been working with the administration for several years to get to this point. We especially thank the Coalition for LGBT Health, the Center for American Progress, the Williams Institute, the Network for LGBT Health Equity and a lot of individual researcher for this important work.

NCTE also thanked Secretary Sibelius.

I wholeheartedly agree with NCTE’s conclusion about this HHS initiative: “This is a very big deal.” This is the how and why this is “a very big deal”:

  • It reiterates the Obama Administration’s commitment to collect and use public health data about the disparities (inequalities) faced by trans and LGB people when seeking access to healthcare.
  • It provides a commitment from the federal government to work with the right researchers and provide sufficient resources to all develop and test the kinds of questions necessary to accurate study LGBT people.
  • For the first time, it lays out a plan for developing, testing and implementing gender identity research questions.
  • The working group of researchers, of which we have been a part, will now be called upon as subject matter experts to help implement the research we would never be able to conduct on our own.

Research identifying issues results in federal funding to address the issues. This research by the HHS will no doubt result in some federal acton in the future.

I have no idea if the VA will follow suit in collecting data on lesbian, gay, bisexual, and transgender patients, but it is something that this HHS data collection plan could easily spur discussion about data collection within the VA. Frankly, I believe that would also be extremely helpful to collect data on actual trans people accessing healthcare, and what healthcare outside of transgender specific care (specific care such as endocrinology and mental health services related to hormones and transition) are actually accessing.

Who knows, something like the dental care I access through the VA my teeth might at some point be interesting to healthcare data collectors.

And who knows — maybe the Census Bureau will embrace data collection on LGB & T people based on the HHS model, and include data collection on LGB & T people for the 2020 Census.

There is no doubt that the Obama Administration has been the most forward thinking and action oriented presidential administration regarding trans people and trans issues — ever. I’m personally looking forward to what comes next from this administration. It seems to me to be just one “very big deal” we’ve seen anounced in past weeks and months from the Obama Administration regarding trans people and trans issues — it’s as if we’re being considered by the U.S. Goverment to be American citizens.


Autumn Sandeen

Autumn Sandeen