Removing information from the CDC website, as well as other federal health websites, is endangering both patient care and public health, infectious disease experts said Friday.
“Removing or altering infectious disease data doesn’t eliminate the diseases themselves or the risks they pose,” said Joshua Barocas, MD, of the University of Colorado Anschutz Medical Campus in Aurora, at a webinar sponsored by the Infectious Diseases Society of America. Doing this “puts every single person in the U.S. — whether they know it or not, whether they want to believe it or not — in danger,” he added.
The CDC began deleting some pages from its website in late January in response to an executive order from President Trump, but some of the pages have since been restored following an order from a federal judge.
“Infectious diseases continue to spread and evolve regardless of one’s personal belief, and without accurate and up-to-date data, we clinicians and public health experts — we cannot treat you effectively,” Barocas continued. “Disruptions in the flow of information, disruptions in the workforce, even brief, can have far-reaching consequences, delaying medical advancements for factory workers in Ohio, [hurting] targeted responses for farmers in Texas, and jeopardizing efforts to keep every single person in this country safe.”
“When we lose access to this knowledge, either because data are made inaccessible, or because the workforce is being dismantled, we lose the ability to act swiftly and decisively in protecting individuals and communities,” he said.
Pointing to data on Ebola that are not getting out, Barocas noted that “the risk of infection is low if strict infection prevention and control precautions are followed, if we have data to know where Ebola is or who it has infected … So where does the U.S. stand with Ebola? Quite honestly, we don’t know.”
“The CDC released an advisory on Feb. 6 about an outbreak of Ebola in Uganda, which said ‘there are currently no suspected, probable, or confirmed Ebola cases related to the outbreak that have been reported in the U.S. or outside of Uganda,'” he said. “Now that the U.S. is pulled out of the WHO [World Health Organization] and the administration is dismantling the workforce at the CDC and the NIH, I honestly can’t promise that Ebola isn’t in the U.S. For all we know it’s landed in Alabama, Arkansas, Missouri, or my state of Colorado, ready to strike an unsuspecting rancher, meat processor, or big-box retail employee who’s public-facing.”
Rachel Bender Ignacio, MD, MPH, of the University of Washington in Seattle, said the information provided on federal health websites is used by a variety of groups. “In addition to clinicians, the general public and public health professionals receive invaluable data and guidance on the CDC, FDA, and other [HHS] websites every day,” she noted. “While not all of that information was removed by recent executive orders, and much of it has since been reposted, what we have been experiencing is more than a temporary aberrancy. The type of information that has been removed represents carefully vetted, evidence-based information meant to help keep regular Americans safe.”
“Removing information and data about entire communities of people makes it harder for doctors to provide care,” Bender Ignacio added, apparently referencing the Trump administration’s orders to remove webpages that mention gender identity or sexual orientation. “We cannot rewrite carefully collected data. If we can’t say who is at risk of a disease or talk about disease disparities, then we will end up with a neutral messaging that led to people fearing that mpox … was going to spread throughout daycares or on buses. We need that specific demographic and technical language to keep people educated and also to understand who is at risk and then appropriately screen and treat people.”
“I shouldn’t need the assurance of a court order to help make sure that I had the data available on how to guide how we screen our patients that come into the emergency room with a fever,” she said. “Without FDA communication, how will the average person know if their medicine has been found to have elevated levels of lead and then is subsequently recalled, or which brands and origins of carrots were involved in the E. coli outbreak a few months ago?”
On Friday, the Trump administration ordered the CDC and FDA to put warning notices on restored webpages that dealt with topics touching on gender identity and sexual orientation. “Any information on this page promoting gender ideology is extremely inaccurate and disconnected from the immutable biological reality that there are two sexes, male and female,” the notice says. “The Trump administration rejects gender ideology and condemns the harms it causes to children, by promoting their chemical and surgical mutilation, and to women, by depriving them of their dignity, safety, well-being, and opportunities. This page does not reflect biological reality and therefore the administration and this department reject it.”
NIH grant funding has also been slowed by website disruptions, according to Barocas. “The NIH has a grants website where they list all of the release dates, all of the expiration dates for funding opportunities. Usually, we see somewhere between one and 40 announcements on a weekly basis. I’m on the website as we speak, and there has not been a new grant or notice of opportunity released since Jan. 22 — nearly a month ago.”
Allison Agwu, MD, of Johns Hopkins University in Baltimore, said she was concerned about the fate of infectious disease funding generally, especially because the Trump administration is so focused on chronic diseases. “Without recognizing the complete interplay between infection and chronic disease and removing that, I think all infectious diseases funding … is at risk,” she said.
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