‘Equivalent to book burning.' CDC gag order eases, but crucial data remain unavailable

Boston Globe

07-02-2025

Massachusetts and New Hampshire public health officials noted that state health agencies continue to communicate with each other about emerging health threats and have other sources for insight into the health of the nation.
But the precedent of freezing communication is troubling, Massachusetts officials said.
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The CDC is still providing information on emerging health concerns through other channels, Massachusetts DPH officials said. The federal agency shared information about an
The CDC on Thursday released its
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'Not being able to talk about ongoing health emergencies is a level of stifling that will imperil our communities,' said Jennifer Nuzzo, director of the Pandemic Center at the Brown University School of Public Health.
The latest issue of the weekly report included articles about the health impacts of wildfires and firefighting chemicals. Nuzzo and others, though, had expected new information about H5N1. A variant of the bird flu spreading among cows has raised concerns about the virus' capacity to adapt to spread easily among humans. The CDC is posting updated numbers tallying bird flu infections among animals and people, but that's not sufficient, Nuzzo said.
'Just knowing a count and what state it occurs in doesn't tell us if this virus has mutated to trigger another pandemic,' she said.
The CDC did not respond to a Globe question about the timing of future bird flu articles but told the Associated Press they
It's been a week since the CDC removed material that included vital information about the health of groups including young people, Black and Latino populations and LGBTQ+ Americans.
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'What's happening to the federal data that's being taken off web sites is equivalent to book burning,' said Carlene Pavlos, executive director of the Massachusetts Public Health Alliance and a former official with the Massachusetts Department of Public Health. 'It's real world facts that are being prevented from seeing the light of day.'
Scientists and health officials emphasized that failing to track health impacts based on race and gender will only succeed in blinding experts to emerging health threats.
'If people exist, simply declaring by fiat that they don't exist doesn't work,' said Nancy Krieger, a professor of social epidemiology at the Harvard T.H. Chan School of Public Health. 'They still have health needs.'
One of the paused datasets is the Youth Risk Behavior Surveillance System, which several scientists described as the country's best source of information about physical and mental health among American adolescents. By Friday, some of the links to the data had been restored, but not all.
The database anchors a trove of research and policymaking, said Dr. Steven Woolf, director emeritus and senior advisor at the Virginia Commonwealth University Center on Society and Health. His work on social justice and health disparities relies on the data, which includes information dating back to the 1980s about factors such as smoking, exercise, drug use, and suicidal behavior. He believes the database was removed because it includes a question on sexual and gender identity.
'Clinical trials have been forced to grind to a halt,' Woolf said. 'This delay in the scientific process and interference with the independence of science is only going to harm the health of Americans.'
Clinicians also use that dataset to keep abreast of trends in illnesses they treat, said Dr. Kenneth H. Mayer, medical research director at Fenway Health and co-director of The Fenway Institute.
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'It's helpful to know what are the emerging issues around sexually transmitted infections,' Mayer said. The CDC did not respond to questions about missing data, saying only that some communications were not subject to the pause, though a spokesperson did not say what communications were exempt. He also said the federal Department of Health and Human Services had provided guidance on how to 'seek approval for any other type of mass communication.' HHS spokespeople did not respond to questions about that guidance.
Some CDC web sites say they are 'being modified to comply with President Trump's Executive Orders.'
Researchers across the country are now trying to piece together the missing databases by sharing copies they've made. Some material, though, isn't available to download, Krieger said. And even researchers who have copies of the missing data aren't able to publish, since peer review requires that the data underpinning their work be available for fact checking.
'This is unprecedented, to my knowledge,' Krieger said. 'To lose that information, it's a crime against humanity, as far as I'm concerned, and against this planet.'
Jason Laughlin can be reached at