US health expert flying ‘absolutely blind’ as federal health data vanishes

President Donald Trump’s end of diversity, equity and inclusion language in federal agencies has caused U.S. health data to be removed or not be updated. Medical experts warn that the losses, even in areas like flu and COVID tracking where DEI isn’t central, make it harder to manage outbreaks and fix health disparities.

“When they take that data away, we’re absolutely blind,” said Georges Benjamin, executive director of the American Public Health Association. “The true impact is more people get sick and more people die.”

On Monday, a message on the website of the Centers for Disease Control and Prevention read: “CDC’s website is being modified to comply with President Trump’s Executive Orders.” The agency instructed its scientists to retract or pause any research manuscript under review by medical or scientific journals, not just its own publications, Inside Medicine reported. The CDC didn’t respond to a request for comment.

Outside the agency, a group of scientists began archiving the CDC website and organizing searchable links on GitHub, with plans to add missing datasets. After learning of the restrictions from a journalist, one participant started downloading key reports on flu surveillance and disease tracking. Others did the same, hoping to preserve critical information.

Web pages tracking flu cases and HIV statistics were among those taken down or frozen. Some datasets have been edited and re-posted with DEI references removed.

One dataset on COVID-19 vaccine coverage for “pregnant persons” now describes coverage for “pregnant women.” CDC websites are also eliminating the term “gender” to comply with the executive order.

As of Monday morning in Washington, 1,362 datasets were available on the CDC website, compared with 1,508 in December, according to the Internet Archive. It remained unclear how long the federal health websites will be down.

It’s not uncommon for the number of datasets hosted by government agencies to fluctuate over time. It’s also normal for a new presidential administration to put its own stamp on government goals. But the sheer number of disabled and stalled data sites took health officials aback.

‘Chilling’

“The removal of critical health information from governmental public health sites is chilling and puts the health of the public at risk,” said Richard Besser, a former acting director of the CDC. “While it is natural for administrations to differ in terms of policies, it is highly unusual and should be unacceptable to hide scientific information.”

HIV doctors were among the most concerned. “It is hard to even put into words how essential this information is for us to take care of people,” said Colleen Kelley, an infectious disease doctor at Emory University and chair of the HIV Medicine Association. She said the CDC data was “the most comprehensive website we have,” and she now must rely on data backed up by researchers.

Holden Thorp, editor-in-chief of the Science family of academic journals, said demands that CDC scientists rescind any unpublished papers that violate the executive order is unprecedented in the U.S.

“We see that frequently in other countries where there are scientists who are being threatened by their governments, but we never expected to see that in the United States,” Thorp said.

At-risk populations

Medical professionals and the general public visit federal websites to get authoritative, up-to-date information about a wide range of health topics. These websites include datasets used in research. They reveal trends in disease outbreaks. And they tell scientists what populations are most at-risk.

For example, the Youth Risk Behavior Surveillance System, a survey that monitors young people for health threats like HIV infection and alcohol use, has been taken down. Among the survey’s dozens of questions, at least two explicitly asked about sexual and gender identity.

The Trump administration has also made private several YouTube videos hosted by the Office of Women’s Health. The topics included ovarian cancer, menopause, osteoporosis and sexually transmitted diseases, according to an email viewed by Bloomberg News. A funding page for the Office of Research on Women’s Health was also taken down.

“If we don’t have any information about queer health or information about women’s health, do they even exist? Are there even any problems?” said Angela Rasmussen, a virologist and research scientist at the University of Saskatchewan.

Eileen Barrett, president-elect of the American Medical Women’s Association, said she was “gravely concerned” about the removal of information about women’s health from federal websites.

“The science shows us that there are sex and gender differences in disease processes, treatment effectiveness, and experiences with the health care system,” Barrett said. “The removal of information that acknowledges and seeks to address this suggests dangerous politicization of science and medicine.”

Race to archive

As the web pages disappeared, efforts sprang up to preserve crucial data. Some researchers and journalists worked to preemptively archive key CDC databases “at risk of deletion,” according to science journalist Maggie Koerth, who created an online form to help coordinate the effort.

Rasmussen said there are multiple online crowd-sourced efforts to publish archived CDC and National Institute of Health web pages, “something that we never imagined we would have to do.”

Some researchers are going to extreme lengths to gather data that was once easy to find. When she learned that the CDC’s main data repository was taken down, Caitlin Rivers, an epidemiologist at the Johns Hopkins Center for Health Security, visited the websites of all 50 state health departments to aggregate flu activity herself. The painstaking process revealed that influenza-like illness has rebounded.

Rivers analyzes disease outbreaks for her weekly newsletter, Force of Infection, which has about 40,000 subscribers. Many readers rely on her updates to protect themselves because they are immunocompromised or have other health conditions, Rivers said.

“People use it to make decisions about their everyday lives, like whether to attend an indoor birthday party or wear a mask on a subway,” said Rivers. “For flu, we need to know what’s happening here and now, so a brief unavailability does have consequences.”

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