After Donald Trump signed executive orders ordering for mentions of race, gender, sexual orientation, disabilities and other terms to be scrubbed from US health agency websites, experts say the implications for health and scientific research are vast.
All pages at US health agencies were told to take down these mentions after Trump signed certain executive orders on his first day in office.
The orders were couched in terms of women’s safety and DEI (or diversity, equity and inclusion) policies, but in fact they work to undermine broad swathes of the American public: trans and intersex people, people of color, LGBTQ+ people, women, disabled people and more.
The deletions needed to happen on Friday 31 January, employees learned. In response, thousands of webpages were taken down entirely. Some have come back online, but they have been scoured of the terms.
A note at the top of all webpages for the US Centers for Disease Control and Prevention (CDC) now reads: “CDC’s website is being modified to comply with President Trump’s Executive Orders.”
“This absence or erasure of really vital information is going to have a really harmful effect on many of these communities,” said Oni Blackstock, a primary care and HIV doctor and the founder and executive director of Health Justice.
“It’s really devastating.”
Decades’ worth of health data is vanishing overnight – and there are questions about whether data collection on these issues will continue.
Researchers receiving federal funding have been ordered to remove words such as “woman”, “disability”, and “LGBT” from their proposals and studies.
The US Food and Drug Administration removed its guidelines for recruiting diverse participants into research, which makes it more difficult to discern a medication’s effects, both good and bad, on patients who are not white men.
The gag order even extends to internal communications. Employees at the CDC and the US Department of Health and Human Services have been told multiple times to remove their pronouns from email signatures.
“The public deserves to understand what’s happening, whether it’s bird flu or maternal mortality,” said Rachel Hardeman, a professor and director of the Center for Antiracism Research for Health Equity at the University of Minnesota. “Not having that knowledge is a disservice to all of us.”
The Social Vulnerability Index, which tracks how disasters affect health down to the local level, is still offline. The Youth Risk Behavior Survey, which has tracked high school students’ behaviors since 1990, has been reinstated, but key parts are still down. The website for the Office of Research on Women’s Health at the US National Institutes of Health is a shade of what it once was. CDC pages that once referred to “pregnant people” now talk about “pregnant women” only.
Nearly all information about HIV for health providers and the public temporarily vanished in the purge.
“There was only one page that was up, a few days ago, that was about HIV. Every single [other] HIV page was down,” said Blackstock.
For the pages that have come back up, there are columns of information that have been removed, she said.
Target HIV, part of the Ryan White HIV/AIDS Program, is still unavailable, for instance.
Guidelines for healthcare providers providing PrEP, the medication to prevent contracting HIV, are still gone, Blackstock said, adding: “Providers can’t reference it so that we can take evidence-based, informed care of our patients.”
There were also many public materials taken down of pertinent information about, for instance, health disparities for trans people, she said, which creates “a vacuum of information” with direct effects on individuals’ health behaviors.
Without this information, researchers and policymakers will struggle to make informed decisions around public health and healthcare, she said.
The CDC did publish annual data on maternal mortality on Wednesday. Black women are three times more likely than white women to die in childbirth – a rate that has not fallen over time, even as white, Hispanic, and Asian mortality has fallen slightly, the data shows.
Soon, the CDC is due to release data about these causes of death, but it is not clear if that publication will move forward given the new restrictions – or if the data will even be collected in the future.
“It’s a lot of question marks at this point,” said Hardeman. “Even as an adviser to the director of the CDC, we’ve received zero information about what’s coming … That’s actually part of the concern. The silence is quite loud.”
The uncertainty is particularly alarming because experts expect mortality rates to increase after the Dobbs v Jackson Women’s Health Organization decision reversed federal access to abortion. More people are now staying pregnant, which increases the chances of dying during pregnancy or childbirth.
“Understanding that landscape is incredibly important for how we proceed,” Hardeman said.
Hard data on maternal mortality has been “instrumental” for forming policies to prevent deaths, 80% of which are preventable, Hardeman said.
“How do we honor the lives lost if we’re just going to move on and not even collect that data?” she asked.
Blackstock noted: “If you’re removing information about the groups at highest risk, then that information is incomplete. It’s actually potentially misinformation.”
Removing information could also diminish trust in science and scientific agencies.
“Is this still accurate? Is there data missing that’s going to prevent us from drawing valid conclusions?” Blackstock asked.
These gaps will make existing disparities worse, the experts said.
“If people are not able to get information in order to be able to protect themselves, it’s just going to make matters even worse,” Blackstock said.
Omissions in research and data mean that it could be harder to spot – and respond to – new patterns, which is a particular concern given outbreaks of bird flu, tuberculosis, measles, mpox and more.
“We don’t really have a map or situational awareness of what is going on, and so that would potentially delay responses to any emerging health issues,” Blackstock said. “We then don’t know how to allocate healthcare and public health resources in the way that we need to.”
The approach harks back to Trump’s Covid response in 2020, when he said that cases would go away if no one was tested.
“It’s the issue of ‘no data, no problem’,” Blackstock said.
“It almost allows the government to abdicate any responsibility, because they don’t have to act on anything – because there’s nothing to act on.”
