- This national survey has been running since 1990, tracking everything from chronic diseases to bullying to mental health through surveys asked to Americans every year. However, the data has remained offline for the past four days. This is likely because it includes questions about gender identity, sexuality, and drug use. Changing a column header (e.g., from “gender” to “sex”) could break decades of continuity, skewing our ability to detect trends and protect public health.
It’s reassuring that CDC scientists are ensuring data validity, even if the datasets haven’t been online for some time.
How do we ensure data integrity?
Without clear explanations, it’s hard to assess what’s real, what’s missing, and what might be manipulated in data.
This is why independent groups, like the Harvard Data Vault, swiftly archived key datasets—providing a reference point before any alterations occurred.
Also, over the weekend, we at YLE stealthily monitored real-time data shifts via a GitHub tracking system created by ProPublica. Over the past four days, 40,074 additions and 39,931 deletions have occurred. We observed mass column removals, renamings, and reappearance, but all seem aligned with the EO scope. A full analysis of this would be incredibly useful, as there are thousands of lines of code. Here are a few examples:
The same goes for communication
Federal health agencies like CDC, FDA, and NIH initially paused all communications. While transitions bring temporary freezes, this level of shutdown is unprecedented.
After pushback, limited updates resumed:
- Allowed: H5N1 data, select partner updates on Ebola, weekly high-level respiratory illness updates, and FDA food recalls (though not actively communicated).
- Restricted: MMWR publication halted for the first time in 70 years, no routine disease surveillance updates (e.g., FluView), outbreak dashboards (measles, tuberculosis) frozen, and CDC staff barred from communicating with WHO or state health departments.
Scientists remain in limbo—unsure of who they can talk to, what they can say, or who is in charge. This lack of clarity is dangerous, especially during emerging threats. For example, there is an Ebola outbreak in Africa right now. What happens if it lands in the U.S.?
Why is this such a mess?
This situation is spiraling for a few key reasons:
- No transition team between administrations, so processes and updates to current health problems just never happened. This is happening now, resulting in the freezing at the moment.
- Lack of capacity. Under the new administration, HHS is running with a skeleton crew. Downsizing government sounds good in theory, but with only 10 people overseeing a $1.3 trillion agency, capacity is a serious issue, resulting in a bottleneck of approvals.
- Loyalty over logic. Decision-making seems driven by political allegiance rather than public health consequences. It’s stunning that the fallout from removing data and guidelines wasn’t anticipated. A fantastic example played out over the weekend: vaccine pages were back up quickly after the blackout. HHS likely freaked out overnight because it created additional noise around the RFK nomination, again highlighting the lack of forethought behind decisions.
- Potentially something worse. There is always the possibility of more deliberate interference at play. As of right now, everything seems to be following the EO orders.
What does all this mean to you?
In the short term, not much.
States still hold considerable power in communication and data. This is because the United States has a decentralized public health system. This was a disadvantage during the Covid-19 emergency when we needed coordination, but it is a strength when the federal government is in disarray. Local health departments and universities continue tracking and communicating data trends. Stay connected to your local health department for updates.
And we know this is happening. We aren’t getting updates on the CDC website, but several states have communicated outbreaks in the interim:
- Georgia has a confirmed measles cases.
- Texas has four measles cases in unvaccinated children and adults.
- Kansas is seeing its largest tuberculosis outbreak in years.
Depending on how long this mess takes to get sorted out, there may be long-term implications for your community. The federal government plays a vital role in health guidance, rare disease knowledge, coordination gaps during outbreaks, technical expertise, and finding health gaps in populations. Prolonged instability could erode the health of Americans.
When do we really start worrying?
Right now, we’re in a holding pattern. There are signals that the administration may approve more communication and data reinstatement, but no clear timeline. It could take until March for key HHS leadership positions to be filled.
Scientists and the public must watch closely with a steady head when that curtain lifts for a number of things:
- Scientific integrity. If data changes extend beyond EO scope or scientists are pressured to alter evidence or numbers, we have a huge problem.
- Disappearing datasets and guidance. If critical datasets or clinical guidance never return, we lose essential tools for protecting all Americans.
- Compromised data privacy. If agencies like DOGE gain access to protected health information, the trust that allows data collection in the first place could erode.
- Weaponized propaganda. If CDC channels start promoting political agendas, such as backing RFK Jr., that signals a dangerous shift from science to state-sponsored messaging.
This may all happen. But regardless, these weekend acts have already damaged many people’s trust in institutions’ data.
Also, Americans, like LGBTQ+, are already getting left behind with these data changes. Data specificity and compassionate communication are critical to understanding how environments, genetics, and our complicated world interact with each other. They are also crucial to understanding whether all people are being served by health systems. This is what public health means.
Bottom line
Public health communication and data integrity aren’t just technical issues—they are the backbone of biosecurity and economic stability. Like gold, data and communication must remain untainted to retain their value.
This situation is alarming, but uncertainty remains. Many organizations are clearly activated and ready to fill gaps. But the longer federal transparency is delayed or distorted, the greater the damage. Unfortunately, it’s already doing damage to specific groups of Americans.
Stay vigilant, push for transparency, and continue advocating for data integrity because public health isn’t just about numbers and words—it’s about lives.
Love, YLE
Your Local Epidemiologist (YLE) is founded and operated by Dr. Katelyn Jetelina, MPH PhD—an epidemiologist, wife, and mom of two little girls. Dr. Jetelina is also a senior scientific consultant to a number of organizations, including CDC. YLE reaches over 320,000 people in over 132 countries with one goal: “Translate” the ever-evolving public health science so that people will be well-equipped to make evidence-based decisions. This newsletter is free to everyone, thanks to the generous support of fellow YLE community members.