U.S. Dept of Health and Human Services To Begin Counting Trans People

Today the Secretary of Health and Human Services Kathleen Sebelius announced a plan to develop and use survey questions to collect public health information on trans people.  This is the culmination of a lot of work from a lot of people.  Why is it so important?

  • Public health data has never really been collected by the federal government.
  • Federal public health data is the gold standard in public health data.
  • 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.

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 today, there will soon be federal population-based public health data on a variety of trans public health issues.

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.

This announcement today does several things:

  • 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.

This is a very big deal.

Many readers may be confused about now, wondering what I mean by developing and testing questions. I’ll explain.  Let me put on my researcher hat; many people don’t know that prior to my work at NCTE, my profession was opinion research, so, though I don’t have direct public health survey experience, I have some expertise that has been useful for me to understand this topic.

I think generally trans people would assume we know how to ask questions about trans people on surveys.  Indeed we sort of do, but not in a solid, confirmed scientific way. Here are some of the considerations about which we are not sure.

In any given study, do we want to be asking about people’s gender identity or expression?

Who do we want to study? Transsexuals? Medically transitioned transsexuals? People who may face discrimination or bullying because of their gender identity or expression? Just people who are out of the closet? This isn’t settled and probably depends on the study being conducted.

How do we ask a question so that it makes sense to both trans and non trans respondents?  For instance, a government researcher in one of our meetings once suggested we ask “Are you male female or transgender?” Non-trans people would probably answer that question easily, but it is a practical and political mess for many trans people. Something that has worked for trans people such as a two-part “What was your sex assigned at birth and what is current gender identity?” would be easier for trans people, but non-trans people would have little understanding of what was really being asked.

Real theoretical and concrete discussions have been underway for several years, but we haven’t had the federal government research apparatus fully engaged.  That should change now. This is a really big deal.

Read our full statement here.

Read the full statement from HHS and their plan here.

7 Responses to U.S. Dept of Health and Human Services To Begin Counting Trans People

  1. Paula says:

    I think that a string of questions for trans ppl receiving health care at federal healthcare facilities would be very informative.
    For instance questions like these would be informative.

    1. Do you use a federal healthcare facility for health care?
    (check yes or no)

    2. What gender transitional related care do you receive at the facility or from a federal healthcare provider?
    (select all applicable responses)

    3. Have you been denied any gender related healthcare at a federal healthcare facility? (check yes or no)

    4. What is the federal agency that the healthcare facility is assigned to? (select all applicable from list of agencies IHS, VA, DOD, prisons, etc.)

    5. Are you treated with equal respect as the other ppl receiving care at this facility? (check one: always, mostly, sometimes, never)

    6. Do you use or show an agency issued ID card to receive service?

    7. Does the card have your preferred gender on your ID card?

    8. Have you ever filed a complaint about services or treatment at this facility?

    9.Were you satisfied with the response?

  2. Scott says:

    One really, maybe, dumb question which comes to my mind is why would any non-out transperson or post-transtion person reveal their status to any federal researcher and risk having their health insurance come under review and probably experienced denied claims, or worse, face reimbursement to the company? Since most health insurance plans, including FEHB plans, explicity exclude transition costs, all the anonymity in the survey could be lost when the insurance companies looks at the raw data and finds reasons to question the claims of suspected customers. This could be even more problematic for post-transition people who find their history of claims under scrutiny.

    It gets to the question if you trust HHS, and any contractors or researchers, to actually protect the data to ensure privacy and anonymity. I wouldn’t if I was in a transition or had transitioned without my health insurance company’s knowledge, and would answer, “I’m sorry, it’s none of your business.” To me, the price of an individual’s privacy outweighs the public’s interests, that is until the laws change to ensure protections for individuals with their health insurance companies, or better yet, real coverage, and rights when those protections fail because of actions by the federal government or actions against transpeople by the health insurance companies.

    The first questions I would ask anyone identifying as a current or past transperson is, “Does your current health insurance plan cover transition care, services, products, etc? If so, would you volunteer your experience, or if not, do you want to share your experience?” Give the individual an out from the start to simply forget they were even asked.

    Just some thoughts they should consider, and remember many transpeople may not cooperate for personal reasons.

  3. Tobi says:

    My partner does coordinates local hiv testing and came up with an intake form that I think captures things very well and is pretty understandable to both trans and cis people. It is two questions.

    1 – Gender? Male, Female, Other (fill in the blank option for other)
    2 – Are you trans? Yes, No, or Not Sure.

    Of course, after hir organization collects the data, then they have to change that data it into an answers that various government agencies want (apparently the county and the state want different things, which makes it more difficult). Of course, some people might not know what “trans” means, and that gets into all the questions of who you intend to count. Perhaps it could be “Are you transgender or transsexual?”

    I find this approach really useful because so often trans status is lumped in with gender or gender identity (such as “are you male, female, or trans”). But people of any gender identity could be trans or not – it really is a separate demographic category.

  4. I appreciate the separation of sex and gender. Male/Female/Other is great for tracking sex.

    Man/Woman/Other Is great for tracking gender.

    And, there are a lot of Other’s out there seeking gender related medical help who are not Trans identified.

    So, Tobi *Waves to Tobi* has two really well worded questions and some good points.

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