A year after Health Secretary Robert F. Kennedy Jr. said he wanted to rebuild trust in federal health agencies through “radical transparency,” an Associated Press investigation found that researchers and public-health advocates have been dealing with health data that is harder to access than in prior administrations. AP said many categories of government health information that had been released steadily for years have instead been delayed, deleted or stopped altogether, including material that researchers say they use in day-to-day work.
AP’s reporting tied the shift to a combination of sweeping layoffs at federal agencies, the longest government shutdown in U.S. history, and actions taken to comply with an executive order by removing health agency websites. The outlet said outside researchers archived federal health datasets during the disruption and that those archives supported a lawsuit in which a judge ordered the sites to be restored.
Ariel Beccia, a researcher at the Harvard T.H. Chan School of Public Health who focuses on the health of LGBTQ youth, said she has been frustrated by what she described as disappearing access to information. “We pay taxes to hopefully have good, inclusive public health practice and data,” Beccia said. “The past year it felt like every single day, something that I and my colleagues use daily in our work has just been taken away” by federal officials, according to AP.
When asked about now-unavailable data and information, an HHS spokesman for Kennedy said AP’s premise was flawed and relied on selective and inaccurate characterizations. Andrew Nixon said Kennedy is “leading the most transparent HHS in history” and pointed to an HHS webpage describing transparency efforts, including a list of canceled government contracts and the repackaging of previously available information, AP reported.
AP then laid out examples across multiple health areas in which the information available to the public changed. In abortion-related surveillance, AP said the CDC did not post its annual abortion surveillance report in November. Nixon told AP that the report would arrive this spring, while AP reported that HHS officials blamed the delay on the CDC’s former chief medical officer, Dr. Debra Houry, saying she directed staff to return state-submitted abortion data rather than analyze it.
Houry disputed that explanation. AP said Houry resigned months before the report was slated to come out and told AP her claim that she had directed staff to return state data was false. Houry said the report was derailed because of HHS cutbacks to the funding and staff needed to complete the work, according to AP.
On overdose surveillance, AP said the federal government has continued to collect and report death-certificate-based information on drug deaths. But AP reported that the Trump administration curtailed other overdose work by shutting down DAWN, which tracked emergency department visits and provided an early alert about drug-use trends. Officials posted that DAWN was discontinued as part of a broader effort to align agency activities with agency and administration priorities, AP said, while Nixon said past DAWN data will remain available.
Some experts, AP reported, said that keeping only past DAWN records is not enough. AP described the closure and other changes as similar to “spreading cracks in a windshield” that make it harder to see what lies ahead in the overdose epidemic.
For smoking and tobacco-related work, AP said the federal government has long tracked tobacco use and ran public education campaigns. AP reported that those campaigns were ended last year, though Nixon said the FDA campaign will return. AP also described how CDC layoffs affected the release of a key survey on youth smoking and vaping that is normally published in the fall, and how those layoffs stopped work on a report for the Office of the U.S. Surgeon General.
Food safety monitoring also changed, AP said. For three decades, federal health officials tracked food-poisoning infections caused by eight germs, AP reported. In July, AP said the Trump administration scaled back required reporting in the Foodborne Diseases Active Surveillance Network, known as FoodNet, reducing monitoring in participating states to just two pathogens: salmonella and Shiga toxin-producing E. coli. Under the change, AP said tracking is optional for infections caused by campylobacter, cyclospora, listeria, shigella, vibrio and Yersinia, with CDC officials describing the shift as a way to steward resources effectively.
AP reported that food-safety experts said the change undercuts the nation’s ability to accurately monitor risks in the food supply.
AP also described changes affecting LGBTQ-related public-health information. It said that even before Kennedy was confirmed, Trump had signed executive orders to roll back protections for transgender people and to terminate diversity, equity and inclusion programs. AP reported that CDC removed from its website a range of information about HIV and transgender people and that the government stopped collecting and reporting survey findings on transgender students, data AP said had shown higher rates of depression, drug use, bullying and other problems.
AP said that the data help fund and focus suicide-prevention efforts and other programs and that the changes are occurring as federal and some state governments try to discourage gender-affirming care, ban transgender youth from sports and dictate which bathrooms they can use, Beccia said. Beccia told AP, “Without the data, we can’t systematically show the harm that’s being done” by these policies.
Nixon, AP said, responded that data collection and reporting now align with agency priorities.
The AP report also addressed conflicts-of-interest disclosures connected to immunization policy. It said Kennedy, before becoming health secretary, had been a leading voice in the anti-vaccine movement and had repeatedly accused federal health advisers of conflicts of interest aligned with vaccine makers. AP reported that in June, Kennedy dismissed the entire Advisory Committee on Immunization Practices and named his own replacements, and that a federal official had said the government would release ethics forms for the new members, but that AP found they were not released.
AP also reported that a CDC website compiling disclosures by past and current ACIP members had more than 200 entries of former panel members, but information on only one Kennedy appointee. AP said information was missing for some appointees, including Martin Kulldorff, identified by AP as the initial chair of Kennedy’s reconstituted committee and described as paid to be an expert witness in legal cases against Merck, and Dr. Robert Malone, identified by AP as a current member who AP said was paid as an expert witness in vaccine litigation.