In the initial days of the Trump administration, officials scoured federal websites for any mention of what they deemed “DEI” keywords — terms as generic as “diverse” and “historically” and even “women.” They soon identified reams of some of the country’s most valuable public health data containing some of the targeted words, including language about LGBTQ+ people, and quickly took down much of it — from surveys on obesity and suicide rates to real-time reports on immediate infectious disease threats like bird flu.
The removal elicited a swift response from public health experts who warned that without this data, the country risked being in the dark about important health trends that shape life-and-death public health decisions made in communities across the country.
Some of this data was restored in a matter of days, but much of it was incomplete. In some cases, the raw data sheets were posted again, but the reference documents that would allow most people to decipher them were not. Meanwhile, health data continues to be taken down: The New York Times reported last week that data from the Centers for Disease Control and Prevention on bird flu transmission between humans and cats had been posted and then promptly removed.
Sign up here to explore the big, complicated problems the world faces and the most efficient ways to solve them. Sent twice a week.
Luckily, non-government groups had rapidly started downloading the existing data when rumors of a broad data purge started to circulate in Washington. Cynthia Cox, vice president of the health policy nonprofit KFF, told me the organization had saved the entire archive of the Department of Health and Human Services pages, as did other groups. Health analyst Charles Gaba has also said he grabbed all of the CDC’s data before it was swiped.
Thanks to the efforts of these groups, the effects of the purge will be blunted — but it’s an ominous harbinger for Trump and his top adviser Elon Musk’s approach to transparency and their willingness to take the health of marginalized groups seriously.
It remains to be seen whether Trump officials will fully restore the data and its supplementary materials; on Tuesday, a federal judge ordered the administration to do so. After speaking with several public health experts, what’s become clear to me is that these surveys will only continue to be valuable if they are continually updated — and that is no longer assured. The danger lies in what happens next: What public health data is the federal government going to collect now? How easily available will it be?
“The reason these surveys are updated is because they are used for health surveillance, new disease trends, access to care, risky behaviors,” Cox told me. “This is basic health information people take for granted.”
We don’t know what happens next, though the signals are troubling. What we do know is that for years, researchers have relied on this data to quantify and characterize the defining public health problems of our time, like the teen mental health crisis. They offer essential snapshots of some of our most urgent ongoing health threats.
In the age of the internet, when the government started publishing this data for anybody to access with ease, that transparency has facilitated more thorough research on marginalized groups, including LGBTQ+ people, and tracked the successes or failures of new policy interventions. But now experts fear the window may be slammed shut. And we simply can’t have effective health care policy without knowing precisely what we’re facing, even if the results are politically uncomfortable for some.
What all of this public health data gets used for
It is difficult to capture the sheer breadth and importance of the public health data that has been affected. Here are a few illustrative examples of reports that have either been tampered with or removed completely, as compiled by KFF.
The Behavioral Risk Factor Surveillance System (BRFSS), which is “one of the most widely used national health surveys and has been ongoing for about 40 years,” per KFF, is an annual survey that contacts 400,000 Americans to ask people about everything from their own perception of their general health to exercise, diet, sexual activity, and alcohol and drug use.
That in turn allows experts to track important health trends, like the fluctuations in teen vaping use. One recent study that relied on BRFSS data warned that a recent ban on flavored e-cigarettes (also known as vapes) may be driving more young people to conventional smoking, five years after an earlier Yale study based on the same survey led to the ban being proposed in the first place. The Supreme Court and the Trump administration are currently revisiting the flavored vape ban, and the Yale study was cited in at least one amicus brief for the case.
This survey has also been of particular use in identifying health disparities among LGBTQ+ people, such as higher rates of uninsurance and reported poor health compared to the general population. Those findings have motivated policymakers at the federal, state and local levels to launch new initiatives aimed specifically at that at-risk population.
As of now, most of the BRFSS data has been restored, but the supplemental materials that make it legible to lay people still has not.
The Youth Risk Behavior Survey: This report, published since 1990, has been particularly important in revealing and documenting the increase in unhappiness among America’s teens. It is particularly important because the questions are asked directly of the teens, rather than their parents.
Its results have informed research and debate about not only teen mental health, but also substance abuse, sexual activity, and domestic violence. Last year, CDC researchers used its data to try to quantify the correlation between social media and phone use and teens’ mental health, an ongoing, urgent area of concern and a growing focus for education officials, some of whom have cited the data to justify cell phone bans at schools.
Like the BRFSS survey, much of the raw data has since been restored, but the reference books have not.
The Social Vulnerability Index: a less well-known but no less important data set that breaks down the US into hyperlocal tracts and uses each region’s socioeconomic demographics, disability rates, and more to measure their vulnerability to natural disasters. Local, state and federal offices use it to plan for or respond to those emergencies.
Researchers can also use the data to evaluate disaster response after the fact: One group of scholars relied on the Social Vulnerability Index when examining how different communities had fared during Hurricane Helene and how much damage they sustained.
Can public health survive a data purge?
With all of these data sets, the question for the future is what data will get collected. “Are they still going to be collecting all the variables?” Jen Kates, who leads HIV policy at KFF, told me. If questions on sexual activity or orientation or gender identity are removed or altered, it may become harder for public health officials to track some of our most daunting health challenges. US HIV policy, an area of particular concern for the LGBTQ+ community, would be undermined if the federal data is no longer broken down at a more granular level.
Under federal law, the Trump administration could scale back on how much public health information is made available to the public — it’s not required to collect all of the data that has been collected by administrations past.
Historically, the CDC and its sister agencies have been trusted to be good stewards of public health for all Americans — something that can no longer be taken for granted. As the New York Times editorial board pointed out this week, the Trump administration’s early actions have aggressively attempted to erase transgender Americans from the public record and the public discourse.
We are what we measure. Recent decades have seen government officials and academic researchers more readily recognizing and cataloging the unique challenges of marginalized Americans, particularly LGBTQ+ people, and devising targeted ideas to help them. Now there is an unprecedented government effort underway to eradicate that information.
But no matter what, these health challenges will still exist. You can erase government data sources, but you cannot erase people. And all of us — not just the people directly targeted by the Trump administration— are at risk of being collateral damage in this crusade against “DEI.” The impetus will now be on the scientists, researchers, and policymakers to find a way forward against a federal government that is actively working against them.
