Top advisers to the Centers for Disease Control and Prevention are asking the agency’s acting director to explain the abrupt removal of information and data from CDC websites, and say when it will be restored.
In a sharply worded letter sent Saturday, the group asked Acting Director Susan Monarez what the rationale was for removing the data, if the consequences and legal authority of such a decision were considered, what was being done to safeguard the data sets that were removed, and when access to them would return. The letter asks for answers by Feb. 7 and also requests that Monarez convene the advisory committee as soon as possible, to discuss what it called “these unusual developments.”
“Silence is not an option right now,” said one advisory board member, Daniel Dawes, a health policy expert and the author of “The Political Determinants of Health.” “I try to use the term unprecedented sparingly, but I believe this is an unprecedented moment. There will be dire consequences if they do not restore this information and it may not come back if we do not speak out.”
The CDC’s advisory board was created by Congress and includes 12 physicians and public health researchers. Nine of those members signed the letter. Some were overseas or could not be reached, Dawes said.
CDC and the Department of Health and Human Services didn’t immediately respond to requests for comment sent Saturday evening.
The CDC on Friday began to remove websites and data sets “that inculcate or promote gender ideology,” in order to comply with a 5 p.m. deadline set by President Trump. Gone were pages related to transgender issues and medicine — a particular target of this administration.
CDC removal of databases on sexual orientation, gender identity sparks alarm
Also gone were pages dealing with HIV surveillance, a social vulnerability index that measures how well counties might respond to disasters, survey results from the Youth Risk Behavioral Surveillance System, long Covid data, and the agency’s Advisory Committee on Immunization Practices (ACIP).
Assessing and monitoring population health status is the CDC’s “essential public health service,” said the letter, adding “without warning, explanation, or justification from CDC, major datasets developed for this very purpose became inaccessible on the CDCs website.”
The letter specifically called for the restoration of the Atlas of HIV, Hepatitis, TB, and Social Determinants of Health Data; the Social Vulnerability Index; the Environmental Justice Index; and the Youth Risk Factor Behavioral Surveillance System.
It called these resources “tools that allow people all across the country to understand the health of their communities.”
“People might think ‘It’s just a data set,” said Dawes. “It’s more than a data set, it’s years and years of collecting data, analyzing data, and putting it into a format that communities can use, literally, to extend their lives.”
By Saturday, some government websites, like ACIP’s, had been restored. And atop the CDC’s website, a light yellow banner now stated: “CDC’s website is being modified to comply with President Trump’s Executive Orders.”
NIH clarifies restrictions on staff after Trump’s broad freeze sparked chaos
The letter cited numerous news reports suggesting the changes were related to executive orders by Trump that prohibit the use of certain phrases but said that “as far as we are aware, these unprecedented actions have yet to be explained by CDC.”
Some news reports Friday indicated more than 1,000 federal website pages had been removed.
Websites at other agencies were unavailable or stripped bare, including those related to climate and health and the National Institutes of Health’s Office of Research on Women’s Health.
“This is a five alarm fire,” Arghavan Salles, a clinical associate professor of medicine at Stanford said of the office’s nearly bare website, “If you’re a researcher and want to know what funding opportunities currently exist for researching women’s health? Page not found. If you want to know what the Office of Research on Women’s Health has been doing for the last 20 years? Page not found.”
The CDC’s action Friday led to a flurry of scientists attempting to archive data sets themselves and advising others to do so. Some were turning to the Wayback Machine, which has nearly 50 million government pages archived.
Concern about the removal of federal websites and access to government data extended beyond the CDC advisory group.
The Sierra Club called the deletion of websites and climate information “a modern day book burning” and said it could harm American families who rely on such taxpayer-funded data to stay safe during disasters.
National Science Foundation suspends salary payments, leaving researchers unable to pay their bills
The board of the Association of Health Care Journalists sent a letter to the acting heads of the CDC and Department of Health and Human Services urging access to health data be restored so journalists could “give the public essential and timely health information.”
According to its charter, the advisory board is authorized by Congress to make recommendations to the director on how to prioritize activities, improve performance, develop the agency’s strategic plan, provide advice on grants and contracts, and create subcommittees.
The group’s work and even existence has been subject to politics in the past. It was disbanded by Trump-appointed CDC director Robert Redfield in 2019 and reformulated by President Biden’s CDC director Rochelle Walensky in 2021.
Dawes said the advisory board members were fully aware of the politics swirling around them and the agency they have advised and that the letter they sent Saturday may be their final act.
“We all discussed that,” he said. “We expect to be fired.”
