Scientists, researchers, and private health organizations rushed to save federal public health data and guidelines last week after learning that the Trump administration intended to take down federal agency websites.
Many individuals have transferred this data to personal websites or Substack accounts, while others are still determining how to manage the information they have gathered.
These archivists, many of whom remain anonymous, now face the daunting challenge of coordinating their efforts to assess how much information has been preserved and to reestablish a centralized network of websites for public access.
“The deletion of information or just the threat of it should make us uneasy,” stated Candace St. John, who is collaborating with AltCDC, a collective of public health workers committed to data preservation. “It’s something that is really going to undermine a lot of communities across the nation.”
St. John, who describes herself as a “liaison” connecting health workers and tracking saved data, emphasized that federal public health data is particularly crucial in rural areas that lack their own health departments, unlike urban centers.
“We rely on these data sets to make important decisions up and down,” she said.
Following President Trump’s executive orders targeting “gender ideology” and diversity, equity, and inclusion efforts, federal health agencies began removing related content from their websites.
The scale of the impact has been significant. Since last Friday, more than 80,000 pages from over a dozen U.S. government websites have been taken down, according to an analysis by The New York Times. Among the removed materials are Centers for Disease Control and Prevention (CDC) resources on HIV and sexually transmitted infections (STIs) prevention and tracking, as well as guidelines for birth control and gender-affirming care. The National Institutes of Health (NIH) Office of Research on Women’s Health website has also been taken down.
Although some of these resources have been reinstated, such as the CDC’s Atlas Tool used for tracking HIV and STIs, they appear to lack the depth they previously had.
Confusion and concern over the deletions intensified when media reports suggested that even more government websites might be shut down as part of an effort to erase mentions of diversity. However, the Office of Personnel Management dismissed these claims as “false rumors.”
On Thursday night, virologist Angie Rasmussen received a call from a reporter inquiring whether she had heard that the Trump administration planned to delete the CDC website. Unaware of this, she immediately informed colleagues and took action.
“I immediately went to the data I would need and started downloading,” she said.
Using archive.org, she saved as much of the CDC’s website as possible. She then connected with Michigan-based data analyst Charles Gaba, who successfully downloaded the agency’s entire website. Gaba has since shared some of this information on a website he has maintained for years.
Others took similar steps. Reproductive health writer and activist Jessica Valenti created a website on her Substack containing CDC data on sexual health, contraception, and LGBTQ youth, which she managed to download before the webpage was removed. Her site also provides instructions for others to submit any deleted documents they have.
Some organizations have also joined the effort. The American College of Obstetricians and Gynecologists, for instance, has reposted CDC guidelines on its own website.
Despite these efforts, a vast amount of information appears to have disappeared overnight, and it remains uncertain how much has been lost.
Justin Gill, an urgent care nurse practitioner, relies on CDC guidelines when evaluating treatment options for patients. Last week, while discussing syphilis treatment with a colleague, he attempted to access the CDC’s STI treatment guidelines, only to find that the page had been removed.
“I was trying to look up guidelines because [I had] questions about first-line and second-line treatments … and that resource was completely gone,” he said.
Gill highlighted the significant consequences of federal public health data disappearing, noting that healthcare professionals nationwide, particularly those in remote areas, depend on CDC information for informed decision-making.
“The CDC was the gold standard for accurate, up-to-date health information, and it’s almost like, with great efficiency, it was turned into the laughing stock of health care resources,” he said.
While alternative sources exist for health guidelines, Gill pointed out that they frequently reference CDC data.
What made the CDC’s resources invaluable, he explained, was not only their accuracy but also their centralized nature, making them a convenient and reliable source for medical professionals.
Now, Gill warned, if doctors or nurses are unable to locate the necessary information on the CDC or NIH websites, they will be forced to search elsewhere, reducing the time they can dedicate to patient care.
Health professionals interviewed by The Hill expressed additional concerns about maintaining the accuracy of the information they are working to preserve. Public health data and corresponding guidelines require continuous updates to remain relevant.
Thus, while preserving existing data is vital, it does not entirely safeguard the public against emerging health threats, such as viral outbreaks.
In addition to removing information from websites, the Trump administration also directed federal health agencies to temporarily halt communications. As a result, the CDC ceased publishing its Morbidity and Mortality Weekly Report, a key source of new health-related data. Although the CDC resumed releasing the report earlier this week, other critical datasets, such as FluView, remain inaccessible.
Rasmussen underscored the importance of the CDC’s flu surveillance data, particularly in monitoring new disease developments. This information is especially crucial given the recent bird flu cases in the country, she noted.
“That puts all of us at risk because then you have a virus infection that is spreading uncontrollably in the population, and you’re not doing anything about it, and you’re not tracking it,” she said.