RFK Jr. pledged more transparency. Here’s what the public doesn’t know anymore

Federal Health Data Access Diminishes Despite Transparency Promises

One year after U.S. Health Secretary Robert F. Kennedy Jr. pledged “radical transparency” to rebuild trust in federal health agencies, many Americans are experiencing the opposite. Numerous health datasets and information resources that were consistently available for years or decades have been delayed, deleted, or discontinued entirely under the current administration.

The reduction in publicly accessible health information stems from widespread layoffs at federal agencies and the effects of the longest government shutdown in U.S. history. Many health agency websites were taken offline to comply with an executive order from President Donald Trump, prompting outside researchers to archive federal health datasets and eventually leading to legal action. A judge ultimately ordered the restoration of these websites following a lawsuit.

“We pay taxes to hopefully have good, inclusive public health practice and data,” said Ariel Beccia, a researcher at the Harvard T.H. Chan School of Public Health who focuses on LGBTQ youth health. “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.”

When questioned about the unavailability of previously accessible data, Kennedy’s spokesman Andrew Nixon rejected the premise, stating, “Secretary Kennedy is leading the most transparent HHS in history, with unprecedented disclosure and openness aimed at restoring public trust in federal health agencies.” Nixon referenced an HHS webpage highlighting transparency efforts, including canceled government contracts and repackaged information.

The impact of these changes is evident across multiple critical health domains. The CDC failed to publish its annual abortion surveillance report in November, traditionally a key resource for understanding reproductive health trends nationally. Officials blamed former CDC Chief Medical Officer Dr. Debra Houry, claiming she directed staff to return state-submitted abortion data rather than analyze it. Houry, who resigned months before the report was scheduled for release, denies this accusation, instead pointing to HHS funding and staffing cutbacks as the cause for the delay.

In addressing the nation’s overdose crisis, the administration has continued collecting and reporting death certificate-based information but shut down the Drug Abuse Warning Network (DAWN), which tracked emergency department visits related to drug use. DAWN had served as an early warning system for identifying emerging drug trends. Officials stated the program was discontinued “as part of a broader effort to align agency activities with agency and administration priorities.” Public health experts have likened these changes to cracks spreading across a windshield, obscuring visibility into the evolving epidemic.

Anti-smoking initiatives have also suffered. For decades, the federal government monitored tobacco use and ran successful public education campaigns like the FDA’s “Real Cost” and the CDC’s “Tips from Former Smokers.” Both campaigns were terminated last year, though Nixon indicated the FDA campaign would return. Additionally, staff reductions at the CDC halted the release of an important survey on youth smoking and vaping, typically published in the fall, and stopped work on a Surgeon General’s report on smoking.

Food safety monitoring has been significantly scaled back. After thirty years of tracking foodborne illness infections caused by eight pathogens through the Foodborne Diseases Active Surveillance Network (FoodNet), the administration reduced required reporting to just two: salmonella and Shiga toxin-producing E. coli. Monitoring for six other pathogens is now optional for the ten states participating in this joint federal-state program. Food safety experts warn this undermines the nation’s ability to identify and respond to risks in the food supply.

LGBTQ health resources have been particularly affected. Following executive orders from President Trump to roll back protections for transgender people and terminate diversity, equity, and inclusion programs, the CDC removed information about HIV and transgender people from its website. The government also stopped collecting and reporting survey data on transgender students, which had previously documented higher rates of depression, drug use, bullying, and other challenges faced by this population.

“Without the data, we can’t systematically show the harm that’s being done” by restrictive policies affecting transgender youth, Beccia noted. Nixon responded that data collection and reporting now aligns with agency priorities.

Questions regarding conflicts of interest have also emerged. Before becoming health secretary, Kennedy was a vocal critic of what he perceived as conflicts of interest among federal health advisers with vaccine manufacturers. In June, he dismissed the entire Advisory Committee on Immunization Practices and appointed his own replacements. Despite promises to release ethics forms for new members, this information has largely been withheld from public view.

A CDC website listing disclosures by committee members includes information for only one of Kennedy’s appointees among more than 200 entries. Notably absent are disclosures from Martin Kulldorff, initial chair of Kennedy’s reconstituted committee, who had been paid as an expert witness in legal cases against vaccine maker Merck, and current member Dr. Robert Malone, who also received compensation as an expert witness in vaccine litigation.

As this pattern of reduced transparency continues across federal health agencies, researchers, healthcare professionals, and the public are left with significant gaps in information that had previously guided public health policy and practice for decades.