Dismantling of Health Equity Research

A federal judge has ordered the Trump Administration to restore thousands of public health websites and datasets that were abruptly taken offline January 31, 2025. But the ruling, while important, addresses only the most visible aspect of a deeper transformation taking place in American public health research.

The order requires immediate restoration of critical resources like the Centers for Disease Control and Prevention’s (CDC) Youth Risk Behavior Survey, which has tracked adolescent health trends for over 30 years, and AtlasPlus, which provides essential HIV surveillance data. Yet even as some datasets begin to return, fundamental questions remain about their integrity and future usefulness.

New restrictions on research language and funding are reshaping how health disparities can be studied, documented, and addressed. At the National Science Foundation (NSF), grant proposals are now screened for over 70 terms related to equity and inclusion. Similar constraints are being implemented across federal health agencies, controlling not just what data exists, but how it can be analyzed and applied.

We've seen this strategy before. For over 20 years, the Dickey Amendment effectively halted federal research on gun violence - not through outright prohibition, but by using funding restrictions to make the research politically toxic. Today's policies follow the same playbook, using indirect means to reshape what questions researchers can ask and what problems they can study.

The implications for public health - and patient care - could echo for decades to come.

The Architecture of Erasure

The Trump administration's data purge made headlines, but the less visible transformation of research funding mechanisms will have far greater long-term impact. Under new NSF guidelines, grant proposals containing terms like "health disparities," "barriers to care," or "systemic inequities" trigger automatic review. These aren't outright bans - they're strategic barriers designed to make certain types of research more difficult to fund and publish.

Similar restrictions are being implemented across federal health agencies. The National Institutes of Health (NIH) and CDC must now screen research proposals for language that could be interpreted as promoting "gender ideology" or diversity initiatives. Even if researchers secure funding, their ability to frame findings around equity and access faces new constraints.

This reshapes research at every level. A study on maternal health outcomes might be funded if it focuses on individual behaviors, but not if it examines how systemic barriers affect Black maternal mortality. Mental health research could explore "personal resilience" but not structural obstacles to care access. Over time, these restrictions don't just limit what can be studied - they fundamentally alter how health challenges are understood and addressed.

The mechanism is subtle but effective. When researchers know their work will be flagged for examining disparities or structural inequities, many will self-censor to protect their funding. As one CDC scientist told Science magazine, "No federal employee was willing to risk his or her career or the agency's funding to find out" exactly where the new boundaries lie. This kind of suppression doesn't require explicit bans - just the implicit threat of losing resources.

For health systems dependent on federal grants, these restrictions create impossible choices. How can a hospital justify funding for language access programs if they can't document disparities in care? How can public health departments address racial gaps in health outcomes if they can't name those gaps in their grant applications? The system is being redesigned not just to ignore inequity, but to make studying it professionally toxic.

Learning from History: The Dickey Amendment's Legacy

The strategic use of funding restrictions to suppress research isn't new. In 1996, Congress passed the Dickey Amendment, which prohibited the CDC from using funds to "advocate or promote gun control." While this didn't explicitly ban gun violence research, Congress simultaneously slashed CDC's budget by the exact amount previously spent studying firearms - sending an unmistakable message about the political cost of pursuing such research.

The impact was immediate and long-lasting. For over 20 years, federal agencies avoided gun violence research entirely, creating a massive knowledge gap during a period when America's gun violence epidemic dramatically worsened. Even former Representative Jay Dickey, the amendment's author, later expressed regret, stating "I wish I had not been so reactionary."

When Congress finally restored partial funding in 2020, the research community's response was dramatic. The CDC and NIH awarded $149.5 million for firearms research from 2020-2022, leading to a 90% increase in clinical trials and an 86% increase in research publications. But two decades of lost research had already shaped a generation of health policy - or rather, the lack thereof.

Today's restrictions on health equity research follow a similar pattern. While the court has ordered data restoration, new language restrictions and funding mechanisms create powerful disincentives for studying health disparities. Like the Dickey Amendment, these policies don't need to explicitly ban research - they just need to make it politically and professionally risky enough that researchers and institutions avoid it altogether.

The parallels are striking: both policies use indirect means to achieve political goals, both rely on funding threats rather than outright bans, and both are likely to create long-term gaps in critical public health knowledge. However, today's restrictions on health equity research have potentially broader implications - they affect how we understand and address disparities across our entire healthcare system. The knowledge gaps we create today could take decades to fill, leaving us unable to effectively study or address systemic barriers to care.

Beyond Data: How Research Shapes Care

What happens when we can't study disparities in healthcare? The impact cascades through the entire system - from how research is funded, to who is selected for clinical trials, to what guidelines are written, to how providers make decisions, and ultimately, to whether patients receive appropriate care.

Consider HIV surveillance and prevention. The CDC's AtlasPlus tool wasn't just a database - it was the primary mechanism for tracking outbreaks and targeting prevention resources where they were needed most. Without this real-time mapping capability, public health officials lose their ability to respond quickly to emerging hotspots or evaluate which interventions are working. This particularly impacts PrEP outreach in Black and Latino communities, where research has shown targeted, culturally-responsive programs are most effective.

The restrictions on studying maternal health disparities are equally concerning. We know that Black women are three times more likely to die from pregnancy-related causes than white women. But without the ability to study why these deaths occur or evaluate which interventions help, maternal mortality review committees cannot make evidence-based recommendations for prevention. The data might show us who is dying, but research restrictions mean we can't effectively study how to save them.

Language access in healthcare settings presents another critical challenge. When 60% of healthcare workers report witnessing discrimination against non-English speakers, we need research to understand where translation services are most urgently needed and which interpretation models work best. But with terms like "culturally responsive" now flagged in federal grant proposals, who will study these issues? How will hospitals justify funding for language access programs if they can't document their impact?

jThe Youth Risk Behavior Survey's 30-year dataset on adolescent mental health has been essential for developing school-based interventions and suicide prevention strategies. Even if this data is restored, new restrictions on studying LGBTQ+ youth mental health could leave healthcare providers unable to identify which prevention strategies actually work for this high-risk population.

These aren't just academic concerns. When research is restricted, health systems lose their ability to identify problems, evaluate solutions, and implement evidence-based changes. The result? Providers make decisions without complete information, institutions lack data to justify needed programs, and patients - especially those already facing systemic barriers - suffer the consequences.

The Road Ahead

Despite the federal court order to restore health agency websites, serious questions remain about both compliance and data integrity. While some datasets have returned online, many lack essential documentation needed for analysis. The administration's response has been defiant, with Vice President Vance suggesting that "judges aren't allowed to control the executive's legitimate power."

Even if full compliance is achieved, researchers face a transformed landscape across all federal agencies. Under new government-wide directives, research proposals at the NSF, NIH, CDC, and other federal agencies must undergo scrutiny for language related to diversity, equity, inclusion, and accessibility (DEI/A). The impact extends far beyond health research - with similar restrictions at the Departments of Education, Housing and Urban Development, and other federal agencies, our ability to study and address systemic inequities across all social determinants of health is severely compromised.

The impacts extend beyond federal agencies. State health departments and research institutions rely on federal frameworks for standardization and analysis. When these systems are dismantled or restricted, it affects health surveillance and research at every level. Hospitals and clinics dependent on federal grants must align their programs with new guidelines or risk losing funding - even if that means ignoring documented disparities in their communities.

For patients, especially those already facing barriers to care, these changes could have profound consequences that don’t stay in academic journals. They play out in hospitals, emergency rooms, and community health clinics—in real people’s lives. They determine who gets care, who gets ignored, and who is left to suffer without accountability. For people living with HIV—particularly transgender women of color, who already face some of the highest levels of stigma and systemic barriers to care—these policies do more than entrench existing inequities. They manufacture new ones.

This is the reality we face: a healthcare system where evidence of disparities exists but cannot be named, where inequities persist but cannot be studied, and where patients suffer but their experiences cannot be documented in ways that drive change. In this climate, who will take the risk of researching these disparities at all?

Conclusion

These restrictions are not just an attack on data collection—they are an attack on the ability of marginalized communities to fight for their own survival. The ability to name a problem, to document its scope, to prove its harm—this is what drives change in public health. Put another way, it is a deliberate strategy to strip communities of the proof they need to demand better.

The Dickey Amendment's legacy shows us how research censorship can shape public health outcomes for generations. Twenty years of suppressed gun violence research contributed to policies based on politics rather than evidence and led to the worst gun violence epidemic of any developed country. Today's restrictions on health equity research risk creating similar knowledge gaps across every aspect of our healthcare system.

Research doesn't just generate statistics - it provides the evidence needed to develop effective interventions and drive meaningful change. Without the ability to study health disparities or document systemic barriers to care, healthcare providers lose essential tools for improving patient outcomes. When we can no longer collect data showing where problems exist or evaluate which solutions work, we risk perpetuating preventable suffering in communities that already face the greatest challenges accessing care.

The restoration of federal health websites is an important first step. But unless we also protect researchers' ability to study disparities, document inequities, and evaluate solutions, we risk creating gaps in public health knowledge that could take decades to fill. The consequences of these strategic policy decisions will be measured not just in datasets lost, but in human suffering and headstone counts.