Protecting Our Data is Protecting Our Future

In a time when our health data is more critical than ever,  recent funding cuts across federal public health agencies threaten to erase the experiences of many Americans from various backgrounds. And it’s not just funding—it’s people. Entire teams at federal agencies (CDC, NIH, and HHS) that collect and analyze data on various health topics have been laid off or silenced. Without them, the numbers that tell our stories—and guide solutions—are disappearing.

At the CDC, for instance, the Center for Surveillance, Epidemiology, and Laboratory Services—the backbone of public health tracking—has seen significant staff losses. The National Center for Health Statistics, the agency that tracks maternal mortality data, has experienced delays in reporting that directly affect how and when interventions happen. Key data systems have been scaled back or frozen, including those that track racial disparities in COVID-19, STI rates, and chronic disease burdens.

This quiet dismantling of public health infrastructure makes it harder to answer questions we know matter—questions like: Why are Black women still more likely to die from pregnancy-related causes? Why do Black girls face higher rates of asthma or experience puberty earlier than peers? Why is mental health support so inaccessible for us? Without data, we can’t measure these problems, let alone solve them. And if we can’t measure it, policymakers won’t fund it.

Here’s Why We Can’t Ignore This:

• The Data Gap Hurts Us: Black women are three to four times more likely to die from pregnancy-related complications than white women. Yet, our health data is often underfunded, misrepresented, or missing altogether. Without accurate data, the issues we face remain invisible—and so do the solutions.
• Our Needs Are Unique: Whether it’s the higher rates of fibroids, maternal mortality, heart disease, or mental health struggles—we carry a disproportionate burden. But if the data doesn’t reflect our realities, the care won’t either.
• No Data = No Policy: No data means no funding, no policy change, and no progress Lawmakers rely on this data to drive legislation. When it’s missing, outdated, or incomplete, they cannot craft effective policies that address our needs—or worse, they assume there isn’t a problem at all.

What We Can Do:

1. Speak Up & Show Up: Demand that public health agencies be fully staffed and fully funded to do the work that protects our communities. Make your voice heard at public hearings, community forums, and through your vote.
2. Support Data Equity: Push for policies that protect race-based data collection and invest in culturally competent public health research. Our lives should never be a rounding error.
3. Tell Our Stories Loudly: From surveys to community conversations, every experience matters. Sharing your experience helps fill the gaps. When data disappears, our stories become even more essential.

Our health data isn’t just statistics—it’s our story, our legacy, and our future. By taking action now, we ensure that future generations of Black women and girls are seen, heard, and supported.