Jia Lissa
By Debra Houry, MD, MPH
October 24, 2026
As a physician, I have spent my career treating the individual patient in the exam room. But as a public health leader, my perspective has necessarily broadened: my patients are entire communities. In this capacity, I am constantly asking fundamental questions that require precision to answer: Who is currently falling through the cracks of our healthcare system? Where should we strategically deploy resources to prevent outbreaks of vaccine-preventable diseases like measles or whooping cough? How do we ensure that vulnerable populations are adequately protected and resourced when a natural disaster strikes?
The foundation for answering these questions is the decennial census. It provides the baseline population data upon which all modern public health planning rests. However, a series of sweeping, proposed changes to the census rules—currently under review—threatens to fundamentally erode the accuracy of this data. By rendering certain segments of our population invisible, these proposals risk creating a fragmented picture of American health, making it increasingly difficult to plan for health needs, address systemic disparities, and maintain national emergency preparedness. We must be clear: leaving people out of the census count does not make their health needs disappear; it merely makes our collective responsibility toward them impossible to fulfill.
The Mechanics of Exclusion: Understanding the Proposed Rule
The proposed regulatory changes, introduced in September 2026, represent a radical departure from established decennial census methodologies. Historically, the census has functioned as a "total population" count, capturing the entirety of the residents within the United States. While the count has always excluded transient groups like tourists, it has historically included the broader resident population regardless of legal status.
The new proposal shifts the paradigm by intentionally excluding large cohorts of long-term residents from the data used for congressional apportionment. Under these rules, individuals on work or student visas, refugees, asylees, and other non-permanent residents would be effectively erased from the official tally. Furthermore, the proposal signals a reliance on administrative tax records rather than direct enumeration for significant portions of the count. This reliance on tax data is inherently flawed; it risks missing the most vulnerable, low-income, or marginalized individuals who may not file traditional returns, thereby codifying a "manufactured undercount" that will skew data for the next decade.
A Chronology of the Policy Shift
The path toward these proposed changes did not happen in a vacuum. To understand the gravity of the situation, we must look at the timeline of events leading to this moment:
- 2020–2024: During this period, intense political debates surrounding the use of citizenship questions and administrative data usage began to reshape public discourse regarding the purpose of the census.
- Early 2026: The Census Bureau began internal reviews of methodologies aimed at "streamlining" the 2030 process, citing budgetary constraints and the desire for "modernized" data collection.
- September 10, 2026: The federal government officially published the proposed rules regarding residency criteria and census methodology in the Federal Register. This initiated a 60-day public comment period.
- October 2026: Public health organizations, medical associations, and civil rights groups began mobilizing, sounding the alarm that the changes would lead to catastrophic data gaps.
- November 2, 2026: The critical deadline for public comments to be submitted to the Census Bureau.
The Cascading Consequences for Federal Healthcare Funding
The public health consequences of these manufactured undercounts will be both immediate and severe. In the United States, hundreds of billions of dollars in federal healthcare resources—spanning critical programs such as Medicaid, the Children’s Health Insurance Program (CHIP), community health center grants, and emergency preparedness funding—are distributed using population-based formulas derived directly from census data.
When the census count is inaccurate, the funding distribution is inevitably flawed. This creates a ripple effect that touches every household. If a community is undercounted, it will receive less federal support than it requires to maintain its local infrastructure. For families, this may manifest as longer wait times for pediatric checkups, a reduction in the number of primary care physicians in their vicinity, or the shuttering of local clinics. In the event of a natural disaster, such as a hurricane or wildfire, an undercounted community may find itself with insufficient resources to open adequate shelters or provide emergency medical supplies. The math is simple: fewer people counted equals fewer dollars allocated, which equals a less resilient, less healthy community.
The Demographic Blind Spot: Why Categorization Matters
Perhaps the most alarming component of the proposed rule is the plan to ban specific demographic questions, including those pertaining to race, ethnicity, and sexual orientation. In the world of epidemiology, these data points are not just "boxes to check"—they are the denominators we use for tracking health outcomes.
Without reliable demographic data, we are effectively flying blind. We rely on these variables to calculate rates of maternal and infant mortality, cancer incidence, chronic disease prevalence, and vaccine coverage. When these categories are removed, we lose our ability to identify where health disparities are widening. For instance, we know that American Indian and Alaska Native populations suffer from significantly higher rates of diabetes than the general U.S. population. We use demographic data to ensure that interventions are targeted specifically at these high-risk groups. If we lose the ability to track these populations, we lose the ability to assess whether our public health programs are actually working or if they are failing to reach those in the greatest need.
Implications for Public Health Surveillance
Major public health surveys, such as the National Health and Nutrition Examination Survey (NHANES), are entirely dependent on census data for "weighting." Weighting is the process by which researchers adjust their sample data to ensure that it accurately reflects the broader population.
If the underlying census data is tainted by significant undercounts or a lack of demographic nuance, the quality of these national estimates erodes. If we cannot accurately estimate the prevalence of high blood pressure or obesity at a national level, health departments cannot effectively plan for long-term prevention programs. Health systems, in turn, will struggle to project patient volume, leading to staffing shortages and supply chain vulnerabilities. The erosion of this data quality puts the health of every American at risk, not just those who were left out of the census.
Addressing the Maternal Mortality Crisis
Consider the current maternal mortality crisis in the United States—a significant issue compared to our peer nations. To address the persistent, documented differences in maternal mortality across racial and ethnic lines, we need granular, reliable information. We need to know who is dying and where.
With this data, we can develop and scale evidence-based interventions like the deployment of community-based doulas, "promotoras" who provide health education in underserved neighborhoods, or patient navigators who assist families in accessing complex healthcare systems. Without the demographic context provided by an accurate census, we are left trying to solve a puzzle with half the pieces missing. We cannot direct resources where they are needed most if we refuse to acknowledge the demographic realities of our patient populations.
The Call to Action: A Critical Window
The Census Bureau’s proposal is not yet law. There remains a narrow, critical window for public health professionals, healthcare providers, and concerned citizens to voice their opposition. Before the November 2 deadline, it is imperative that we submit public comments to the Bureau.
These comments should be specific and impactful. I urge my colleagues in the medical field to share concrete examples of how these changes will hinder their work. Whether you are a pediatrician planning for a surge in childhood illnesses, an emergency department director preparing for the next climate-driven disaster, or a public health official striving to lower maternal mortality, your voice matters. Explain how an inaccurate count directly impacts the patient outcomes you are responsible for.
Conclusion: Data as a Public Good
We must reject the notion that a census is merely a political tool for legislative apportionment. A census is, first and foremost, a public health tool—a record of who we are and what we need. When we make decisions that prioritize administrative convenience or political maneuvering over the accuracy of our data, we are choosing to leave our communities less prepared and less healthy.
We all share a common goal: we want our neighborhoods, cities, and states to be capable of supporting our patients’ health and well-being. We want our systems to be ready when disaster strikes. To achieve this, we must demand transparency and precision. We should not accept any methodology that intentionally obscures the reality of our diverse, complex, and vital communities. The integrity of our future health depends on the accuracy of our count today.
Nila Kartika Wati
Neng Nana
