Since the first day of his presidency, Donald Trump has targeted transgender communities with executive orders that attempt to limit access to medical care, restrict how people identify on government documents, curb gender-inclusive research, and more. Two months later, Trump’s directive to eliminate “gender ideology” in particular is still reverberating through federal health agencies.
The Centers for Disease Control and Prevention confirmed a few weeks ago that it would no longer process transgender identity data, including in critical health surveys like the Youth Risk Behavior Surveillance System and the Behavioral Risk Factor Surveillance System.
“Those are some of the most important surveys in the nation,” said Ankit Rastogi, the director of research at Advocates for Trans Equity (A4TE). Major research organizations that focus on LGBTQ+ people, like UCLA’s Williams Institute, use that CDC data in their reports. “We’re going to really have to fill in the gaps with our work,” said Rastogi.
Filling the gap isn’t a new endeavor for groups like A4TE. Beginning in 2015, the nonprofit has administered the periodic U.S. Transgender Survey, which focuses on drawing a picture of the day-to-day lives of trans people, including their health and well-being. There’s long been a dearth of health data on LGBTQ+ populations, and trans people in particular. The 2015 USTS was the largest survey of trans adults ever done in the country, with more than 27,000 respondents. The follow-up survey, fielded to people ages 16 and older in 2022, more than tripled the number of respondents, to around 93,000.
The data from that survey is still being analyzed, with early insights released last year. A4TE plans to make the data available to researchers who focus on trans health, and have few other sources to draw from. Further, Rastogi said, even though it’s difficult for small nonprofits and advocacy groups to undertake surveys like these, the group hopes to do another comprehensive survey in 2027.
“Data is only one prong in the fight for trans rights and liberation. But it’s important to show how gender-affirming care impacts people,” Rastogi said. Data from both the 2015 USTS and preliminary reporting from 2022 show that, overwhelmingly, people who take hormones and get surgery are “a lot more satisfied” with their life. “If people aren’t collecting those data, then we can’t make those same arguments,” Rastogi added.
STAT spoke with them about the challenges that nonprofits and community groups face in data-gathering. The conversation has been edited for length and clarity.
What was the impetus for starting this survey in 2015?
The survey started with the National Transgender Discrimination Survey in 2008-2009, that was the first iteration. And then it transitioned to being the U.S. Transgender Survey in 2015. So it became more comprehensive than just discrimination. The impetus was that there’s just so few data out there on trans people. And there are so few data produced by trans people for trans people. And so the big strength of this survey was that it is the largest survey of trans people ever. And it’s so foundational to creating the knowledge base that we have on trans people, both nonbinary and binary, in the United States.
Why do you think it is that there have been so few other resources of data on trans people, and what are the effects of that?
There are probably a lot of reasons. There are a few things at play — that burgeoning awareness around trans issues nationally, and more broadly around gender justice. And then there’s also the idea that LGBTQ populations are small populations. But what we’re showing is that our populations aren’t that small. We had 93,000 people fill out this survey, and it was a survey where people elected to take it. So that was 93,000 people who wanted to take an hourlong survey with hundreds of questions, which I think is really incredible.
What are the challenges of trying to fill this data gap as an advocacy organization?
Those [government] surveys — they take millions of dollars to do. We advocates simply don’t have that kind of capacity. In an advocacy organization, we’re not all researchers. We have some researchers, and then we partner with other research organizations as well. The Census Bureau has a whole department, a whole army of Ph.D.-level researchers doing the census. And we don’t have that, unfortunately.
I believe the USTS is an incredible thing. And at the same time, it’s for people who opt into taking it. So we can’t necessarily say that the USTS is nationally representative. But what we can say is that we did have this massive sample of 93,000 people and we can speak to their experiences.
What’s the status of the 2022 survey results?
The biggest thing that we’re going to get soon — we’ll have a report out on the health of the respondents. That will cover things such as health care access, self-reported health, mental health and well-being, among many other issues. Sexual and reproductive health is another one. And then our big focus is getting the dataset in shape to release to the public so that scholars can use the data for their own analyses. So right now, the big push is democratizing the USTS so that advocates can use the data for their purposes, especially in a time where data is getting pulled left and right, and there are such explicit attacks on data and data transparency.
How is the current political climate affecting the way you think about research and this survey in particular going forward?
The current climate has definitely catalyzed us to pivot in ways to make sure that we can get the data out as soon as possible. That includes getting this health report out. That includes getting the data so that people can apply to use the data. And researchers and advocates who have data backgrounds can crunch the numbers that they need to support their communities. We’re also thinking about the future iteration. And it’s not set in stone, but perhaps we’ll have a survey as early as 2027. That’s five years after the 2022 survey, to make sure that we continue to have consistent data about trans communities — by trans people, for trans people.
