When Public Health Data Disappears

When Public Health Disappears

On January 31, 2025, the Centers for Disease Control and Prevention (CDC) quietly removed several critical public health datasets from its website. No press release. No explanation. Just gone.

Among the missing: the Atlas of HIV, Hepatitis, TB, and Social Determinants of Health, the Social Vulnerability Index, the Environmental Justice Index, and the Youth Risk Behavior Surveillance System—datasets that have long been the bedrock of public health policy, community advocacy, and scientific research. Also missing or altered are web pages dedicated to LGBTQ+ health, gender-based violence, racism in healthcare, and even vaccine recommendations.

This isn’t just a bureaucratic reshuffling. It’s a deliberate act of erasure.

The Disappearance of Data Is the Disappearance of Accountability.

Public health data isn’t neutral. It reflects power—who is counted, who is visible, and who gets to decide what’s worth measuring. When these datasets vanish, so too does the evidence that justifies funding, shapes interventions, and protects the most vulnerable.

Why would a government choose to hide this data? Early reports suggest ties to executive orders banning certain words and topics in government communications. Words like “racism,” “LGBTQ+,” “climate,” and “equity”—terms that have become ideological battlegrounds rather than public health imperatives.

Let’s be clear: this is not just censorship. This is disinvestment. This is cancellation—of science, of truth, of entire communities.

Here’s the deeper question we must confront: Who owns public health data? Is it the scientists who collect and clean it? The federal agencies that host it? The political appointees who can delete it? Or is it the public who funds it, contributes to it, and whose lives are directly affected by what it reveals?

In a just society, the answer is clear: the people own the data. Especially the people who have historically been marginalized, surveilled, and rendered invisible by the same systems that now seek to erase their realities. Black mothers fighting for safer births. Trans youth seeking affirming care. Communities navigating poisoned air and toxic water.

The data belongs to them. It should be protected for them.

When Science Is Politicized, Lives Are Put at Risk.

Removing datasets is not a passive act. It’s an aggressive maneuver to discredit science, suppress advocacy, and sever the relationship between truth and policy. Without these tools:

• Health inequities can no longer be tracked—or addressed.

• Disaster response becomes slower, less targeted, more deadly.

• Schools and communities lose insight into youth mental health crises.

• Communities lose the very evidence they need to hold systems accountable.

This erasure invites a chilling precedent: that data can be rewritten or vanished by political fiat. And once public trust in science is broken, rebuilding it becomes a generational task.

The Future of Public Health Requires Public Ownership.

We are at an inflection point. As the infrastructure of science is gutted under the guise of politics, we must ask ourselves: What kind of public health future are we fighting for?

One where data is proprietary, disposable, and manipulated? Or one where data is democratized, protected, and used to build a healthier, more equitable world?

Scientists cannot be the only ones raising the alarm. Policymakers, activists, educators, and everyday people must demand data sovereignty1—where communities have not just access to, but power over, the information that shapes their futures.

This Fight Is Bigger Than Science.

The erasure of public health data is not an isolated incident. It is part of a broader movement to undermine science, restrict speech, and deny the realities of systemic harm. When we lose the evidence, we lose the argument—and the ability to make change.

But this moment also invites resistance. Radical imagination. Collective action. A new vision of science rooted not in the whims of power but in the lived truths of people.

Because this isn’t just about datasets. It’s about who gets to be seen. Who gets to be safe. And who gets to survive.

And we will not go quietly.

Kukutai, Tahu, and John Taylor. Indigenous Data Sovereignty: Toward an Agenda. ANU Press, 2016.

Want to see how the Advisory Committee to the Director of the CDC has mobilized?

Read the powerful letters demanding transparency, accountability, and action: 

1. February 1, 2025

2. February 17, 2025