States and medical societies are stepping up to fill the CDC’s data void

The Centers for Disease Control and Prevention has always been the pinnacle of public health in the United States. The agency has been a leading voice for evidence-based health guidance and a sentinel for deadly disease outbreaks for decades. But over the past year, Health and Human Services Secretary Robert F. Kennedy, Jr., and the Trump administration have stripped the CDC of its funding, programs, staff and leadership. Internal information and reports indicate that these changes have significantly disrupted operations – and a new report provides insight into the public health consequences. An audit published last week in the Annals of Internal Medicine revealed that dozens of public CDC databases had gone dark. Thirty-eight regularly updated datasets, most related to vaccines, have been suspended since at least spring 2025.

“We tend to assume that federal government data is robust. It’s reliable and consistent,” says study co-author Janet Freilich, a law professor at Boston University who has studied the evolution of government data in recent years. “At least in terms of consistency, we weren’t seeing that here.”

Today, state and local governments and independent organizations are trying to fill the void left by the CDC and other national public health agencies.

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Several states (mostly blue) have joined forces to create regional health alliances that help coordinate and preserve vaccine guidelines. Governors are joining together to help communicate public health information and strengthen policies and funding across states. Medical societies are also speaking out in favor of evidence-based health recommendations on topics ranging from vaccines to gender-affirming care.

“Confidence in federal health institutions has fallen under [Kennedy’s] observe to the extent that you’re now seeing these different regional coalitions forming,” says Jerome Adams, who served as U.S. surgeon general in the first Trump administration and as Indiana’s health commissioner from 2014 to 2017. Adams and other experts say such efforts can help mitigate some of the losses, but they worry that a disparate public health network could widen health care gaps and have other long-term effects.

“I think that these states coming together is an overall positive step,” says Jennifer Nuzzo, an epidemiologist and director of the Pandemic Center at Brown University. “But make no mistake: This will not replace what the CDC used to do, and Americans will suffer for it. »

The CDC hosts thousands of repositories of epidemiological data on everything from infection to mortality and vaccination rates. Real-time information is essential for an effective public health response. In the new report, the authors flag datasets that have not been updated at the stated frequency (i.e., weekly or monthly), plus an additional 30-day observational grace period. They found 38 databases that had been suspended, including 34 showing no new data entries for six months or more. In a follow-up analysis performed on December 2, 2025, only one of the 38 datasets had been updated.

The majority of suspended databases (87%) were for vaccines, such as monthly vaccination rates for COVID, respiratory syncytial virus (RSV), and influenza. A handful of databases covered emergency room visits due to respiratory illnesses and drug overdose deaths.

The study couldn’t pinpoint exactly why these data sets stopped being updated, but experts have several theories. The government shutdown from October 1 to November 12, 2025, for example, blocked the national declaration of the flu. But Freilich says most of the delays persisted beyond the shutdown. CDC reorganization and staff reductions may have made it difficult to maintain regular data entry. There’s also a particularly worrying possibility: “We wondered if there was a deprioritization of some of these data collections, particularly around vaccines, and we wondered if that might be political,” says Freilich.

Department of Health and Human Services spokesperson Emily Hilliard said Scientific American that “changes to individual dashboards or update schedules reflect routine data quality and system management decisions, not policy guidance.” Hilliard denied that the CDC had stopped reporting flu, COVID or RSV data. However, she did not respond to questions about the suspended vaccine data.

Kennedy has long expressed his anti-vaccine views and has taken several steps to reduce access to vaccines since taking over as head of HHS. More recently, the CDC reduced its childhood vaccination schedule, reducing the number of diseases covered from 17 to 11.

As data disappears and health recommendations soften, independent groups are stepping up to fill the void in public health data and leadership.

The American Academy of Pediatrics (AAP) has released its own childhood immunization schedule, which recommends all shots previously recommended by the CDC. Last week, 12 medical societies rejected the CDC’s new timeline and instead endorsed the AAP guidelines.

Some states have also joined forces to increase access to vaccines. In fall 2025, state leaders and local public health advisors created the West Coast Health Alliance and the Northeast Public Health Collaborative to establish regional vaccine recommendations after the Trump administration declared that healthy adults and children did not need to get COVID vaccines. The alliances have since rejected further CDC changes to vaccine and health recommendations and instead supported the AAP’s recommendations.

“There is no medically justified reason to lower recommendations for these dangerous diseases,” Sean O’Leary, chairman of the AAP’s infectious diseases committee, said at a recent press briefing. “We worked [alongside] enthusiastically government agencies,” he added. “Unfortunately, the environment we operate in today is different.”

The CDC has said all vaccines will still be covered by insurance, but the AAP and medical experts are working to verify that directly with insurers themselves.

Governors are also stepping up their efforts. Fifteen governors — so far mostly from blue states, such as California, Illinois and New York, as well as the U.S. territory of Guam — have formed the Governors’ Public Health Alliance, a pact to support and ensure access to health care across state lines.

These state and territory leaders have long been “leaders” on the front lines of health issues, says Raj Panjabi, the group’s public health adviser and former White House senior director for global health security and biodefense under the Biden administration.

“Governors have always been in the driver’s seat when it comes to responding to health threats such as infectious diseases such as bird flu, mpox or RSV,” says Panjabi.

Some of the suspended CDC databases have resumed updates since December 2025, Freilich says. But any interruption can delay action and cost lives. When the data gets darker, public health officials’ perspective on population vulnerabilities and disease threats also improves.

“What we’re seeing now, from this study and previous work, is that the federal government is not always a reliable source of this basic, granular information that we tend to use to develop a variety of policy tools and responses,” Freilich says.

During major health threats, states have historically asked the CDC to deploy federal epidemiologists and scientists to help trace sources of infection and provide tools, such as vaccines, to vulnerable communities. Sharing information about infection rates, symptoms, and prevention measures can be essential during a multistate outbreak.

Fortunately, Freilich points out, “a lot of public health data comes initially from state governments.”

Nuzzo and Adams generally agree that recent public health efforts at the state and regional level have some strengths. Exchanging data and jointly planning response efforts or vaccine deployment can maximize staff power and resources. Local leaders have a more intimate understanding of their communities, which can lead to more effective policies.

“Culturally, what works in Boston is not the same thing that will work in Boise,” Adams says.

Panjabi emphasizes, however, that these new collectives, including the Governors Public Health Alliance, do not replace the federal government. This becomes extremely evident during national or global health crises, such as pandemics.

Adams agrees. “Who do people turn to if we face another pandemic and there is no central authority that people trust? he said. “It doesn’t matter what policies are in effect in Indiana if every spring and fall a third of your state’s population travels to other areas.”

Adams worries that such a fragmented public health system will end up worsening health disparities and that people from marginalized communities and populations will have a harder time accessing care. “You’re going to see different standards of care and practice in different parts of the country,” he said, “and that’s deeply concerning.” »

Nuzzo shares similar concerns about growing divisions in health care as states and Democratic governors largely lead the charge: “It doesn’t matter where you live or what political party your governor or legislative representatives belong to, whether or not you have access to vital tools like vaccines and information. »