Lancaster, Pennsylvania – A familiar and unsettling phrase has re-emerged from the shadow of the COVID-19 pandemic, now casting doubt on the reporting of measles fatalities: "They died with measles, not from it." This linguistic distinction, which became a flashpoint in public discourse during the global health crisis, is once again at the center of a contentious debate surrounding public health data, definitions, and trust.
n
The controversy was sparked on August 25, when Pennsylvania health authorities reported two measles-associated deaths in Lancaster. Almost immediately, a county commissioner publicly relayed the coroner’s position that one of the individuals, an infant, had died "WITH measles, but not FROM measles," attributing the death to a ruptured spleen. This assertion immediately drew parallels to the early days of the COVID-19 pandemic, where similar statements fueled skepticism about the true lethality of the virus and the accuracy of official death tolls. The Centers for Disease Control and Prevention (CDC) initially omitted both deaths from its national measles update, placing an enigmatic asterisk in the deaths column, signaling an ongoing review or disagreement.
n
Since then, Pennsylvania has reported two additional measles-associated deaths, bringing the state’s total to four. The CDC eventually added one of these later reported deaths to its national data on a Wednesday, yet the initial three reported deaths, including the infant’s, remain conspicuously absent from the agency’s official tally. This discrepancy has ignited a broader discussion about how public health agencies define and report mortality, particularly for infectious diseases that can lead to complex cascades of health complications.
n
The heart of the matter lies in the precise, yet often misunderstood, science of death certification – a process that translates the final moments of a life into a structured medical and legal record. The distinction between dying with a disease and dying from it is not merely semantic; it underpins the very foundation of epidemiology, public health policy, and the public’s understanding of disease burden.
n
n
Main Facts: Pennsylvania Measles Deaths and CDC Discrepancies
n
The recent measles deaths in Pennsylvania have brought to the forefront a critical debate about the methodology of reporting disease-related fatalities. On August 25, the Pennsylvania Department of Health announced two measles-associated deaths in Lancaster County. This announcement was swiftly followed by a statement from a county commissioner, referencing the coroner’s preliminary finding regarding one of the deaths – an infant – as having died "with measles, but not from measles," attributing the cause to a ruptured spleen. This initial characterization immediately echoed the fraught discussions that surrounded COVID-19 mortality reporting.
n
The federal response from the Centers for Disease Control and Prevention (CDC) further complicated the narrative. In its subsequent national measles update, the CDC notably omitted these two reported deaths, instead placing an asterisk in the deaths column, indicating a pending classification or ongoing investigation. This omission suggested a disagreement or a higher bar for inclusion in national statistics compared to the state’s initial reporting.
n
The situation escalated when Pennsylvania later reported two additional measles-associated deaths, raising the state’s total to four. While the CDC eventually updated its data to include one of these newly reported deaths, the initial three, including the infant’s death, remained excluded from the national count as of the latest reports. This selective inclusion has fueled questions about the transparency and consistency of national public health reporting, especially in the context of a highly contagious and vaccine-preventable disease like measles.
n
n
Chronology of Events: A Timeline of Dispute
n
The sequence of events highlights the evolving nature of the dispute and the challenges in harmonizing local and national public health reporting.
n
- n
- August 25: Pennsylvania Department of Health confirms two measles-associated deaths in Lancaster County. Simultaneously, a county commissioner, citing the coroner’s office, publicly states that one of the individuals (an infant) died "WITH measles, but not FROM measles," attributing the death to a ruptured spleen.
- Shortly thereafter: The Centers for Disease Control and Prevention (CDC) releases its national measles update. The two Pennsylvania deaths are not included in the national count, with an asterisk appearing in the deaths column, signaling an unresolved status.
- September 16: In her first public interview as the new CDC head, Erica Schwartz is questioned about the decision to exclude the Pennsylvania deaths. She references the COVID-19 pandemic, stating that "often that was called a Covid-related death" even if someone with COVID was hit by a bus, and emphasizes that "definitions matter."
- Following weeks (exact dates unspecified in original text, but prior to CDC’s partial inclusion): Pennsylvania reports two more measles-associated deaths, bringing the state’s total to four.
- Wednesday (exact date unspecified, but after Pennsylvania’s additional reports): The CDC updates its data, adding one of the four Pennsylvania deaths to its national count. The other three, including the initial infant’s death, are still not listed in the CDC’s official national statistics.
n
n
n
n
n
n
This timeline reveals a slow and cautious approach by the CDC to officially recognize these deaths, contrasting with the more immediate reporting by state authorities and raising concerns about timely public health communication during an outbreak.
n
n
Supporting Data: The Unseen Language of Death Certificates
n
To truly understand the "with, not from" debate, one must delve into the meticulous, yet often arcane, process of death certification. This isn’t merely a bureaucratic formality; it’s a critical tool for medical, legal, and public health purposes. The form itself, particularly the U.S. standard death certificate, is designed to capture the intricate chain of events that leads to a person’s demise, distinguishing between the immediate cause and the underlying condition that initiated the fatal sequence.
n
The Cascade of Death: Beyond the Immediate Event
n
Literally speaking, every human death culminates in cardiac arrest – the cessation of heart function. However, listing "cardiac arrest" as the cause of death is medically uninformative and epidemiologically useless. Both the CDC’s handbook for physicians and Pennsylvania’s death certificate manual explicitly instruct certifiers not to list terminal events like cardiac or respiratory arrest without specifying the underlying conditions that led to them. This fundamental principle acknowledges that death is rarely a singular, instantaneous event, but rather a cascade of physiological failures.
n
The standard death certificate is structured in two parts, designed to unravel this cascade:
n
- n
- n
Part I: The Chain of Events
n
- Line (a) Immediate Cause: This is the final disease, injury, or complication that directly preceded death. It’s what happened right before the heart stopped.
- Line (b) Due to (or as a consequence of): This line lists the condition that led to the immediate cause (a).
- Line (c) Due to (or as a consequence of): This line lists the condition that led to the condition on line (b).
- Line (d) Underlying Cause: This is the most crucial entry for public health. It represents the disease or injury that initiated the chain of events leading to death. It’s the original "root cause" – the condition without which the subsequent events would not have occurred.
-
Part II: Other Significant Conditions
This section is for other diseases, injuries, or conditions that contributed to the death but were not part of the direct chain of events leading to the immediate cause listed in Part I. For example, a patient with diabetes might die from pneumonia. If the diabetes significantly worsened the pneumonia or made the patient more susceptible, it would be listed here.
Illustrative Examples: Tracing the Underlying Cause
Consider the example used in Pennsylvania’s training for certifiers: A patient dies from bleeding esophageal varices (a), which were caused by portal hypertension (b), which stemmed from liver cirrhosis (c), which was a consequence of hepatitis B (d). In this scenario, while the immediate cause of death is the bleeding, the underlying cause is hepatitis B. The virus initiated the entire pathological sequence that ultimately led to the patient’s death. Without hepatitis B, the subsequent conditions would likely not have developed.
This logic is not unique to infectious diseases. In homicide law, for instance, if a gunshot victim dies months later from complications directly attributable to the wound (e.g., intractable infection, organ failure), the original gunshot is still considered the cause of death, even if the immediate event was sepsis or organ failure. Similarly, in a car crash, if a victim sustains severe internal injuries and dies days later from internal bleeding or organ failure, the car crash remains the underlying cause. Applying this consistent reasoning, a child who contracts measles, which then leads to fatal pneumonia or encephalitis, has died from measles, even if pneumonia is the immediate cause listed on line (a). Measles is the condition that initiated the entire deadly chain.
The "Bus Story" and COVID-19: A Misunderstood Narrative
The infamous "hit by a bus" scenario, invoked by CDC Director Erica Schwartz, gained traction during the pandemic as a supposed example of COVID-19 overcounting. The narrative suggested that individuals who tested positive for COVID-19 but died from unrelated traumatic events, like a bus accident, were being falsely attributed to the virus. While this scenario made for a compelling soundbite, it largely misrepresents how official mortality statistics are compiled.
Early in the pandemic, some federal and state officials indeed stated that anyone who died with a positive COVID-19 test would be included in preliminary tallies. These initial counts often came from "case surveillance" – rapid, preliminary reports from health departments to the CDC. These fast reports were crucial for real-time situational awareness during an escalating public health crisis. However, these preliminary figures were always understood to be subject to later verification and correction by more definitive death certificate data, which can take weeks or even months to finalize.
A specific incident that likely fueled the "bus story" involved a Florida motorcyclist who had tested positive for COVID-19 and died in a crash. This individual was briefly included in a county’s preliminary COVID-19 death tally but was subsequently removed after a medical examiner reviewed the case and determined COVID-19 played no role in the death. As the CDC’s mortality statistics chief explained, this correction demonstrated the system working as designed, not a systemic flaw in overcounting.
On the death certificate itself, if a person tests positive for COVID-19 but dies from injuries sustained in a bus crash, the chain of events in Part I would begin with "injuries from motor vehicle accident" as the immediate cause, followed by the specific traumatic injuries. Unless COVID-19 caused the accident, contributed to the severity of the injuries, or complicated recovery in a fatal way, it would not belong in Part I. The CDC’s certification guidance explicitly states that COVID-19 should be listed on a death certificate only when it played a role in the death. A CDC review of COVID-19 mortality data further clarified that a contributing cause (Part II) must be judged significant by the certifier, not merely an incidental finding. Therefore, the claim that such trauma deaths were "often" counted in official COVID-19 mortality statistics lacks credible evidence.
Were COVID-19 Deaths Overcounted? The Role of Excess Mortality
While the "bus story" was largely a distortion, the concern about incidental findings had a more legitimate basis in hospitalization data, particularly during the Omicron wave. When hospitals implemented universal testing for all admissions, individuals admitted for entirely unrelated conditions (e.g., a broken leg) could test positive for COVID-19 and subsequently be included in "COVID-19 hospitalization" counts. As physician Jake Scott described, this led to a distinction between being hospitalized with COVID and for COVID.
However, this dynamic in hospitalization data does not translate directly to death certificates. Official mortality statistics reflect the certifier’s medical judgment. Data from death certificates show that COVID-19 was listed as the underlying cause on 88% of certificates that mentioned it from 2020 through mid-2022. This figure fell to 76% for 2022 as a whole, indicating that certifiers more often listed it as a contributing cause (Part II) as the pandemic evolved and population immunity increased, leading to less severe outcomes in some cases. This adjustment reflects the nuanced application of the death certificate guidelines.
An independent check on the accuracy of COVID-19 death tolls comes from "excess mortality." This metric compares the total number of deaths from all causes in a given period to the number expected in a typical, non-pandemic year. Excess mortality doesn’t rely on individual death certificate classifications; it simply measures the overall increase in deaths. The CDC estimated approximately 299,000 excess deaths in the U.S. from late January through early October 2020. While about 198,000 of these were attributed directly to COVID-19, the remaining excess deaths likely represent a mix of unrecognized COVID-19 fatalities (e.g., people dying at home without testing) and indirect effects of the pandemic (e.g., delayed medical care for other conditions). Crucially, excess mortality data demonstrates that overall deaths rose significantly beyond the number attributed to COVID-19, strongly suggesting that official counts were not inflated; if anything, they might have been an underestimate.
Official Responses: CDC’s Stance and the Measles Quandary
On September 16, in her first interview as the new head of the CDC, Erica Schwartz addressed the agency’s decision to exclude the initial Pennsylvania measles deaths from its count. Schwartz, who also emphasized the safety and efficacy of the measles, mumps, and rubella (MMR) vaccine, reiterated the importance of precise definitions, drawing a parallel to the COVID-19 era. "When someone with COVID was hit by a bus," she stated, "often that was called a Covid-related death," underscoring her view that such classifications could be misleading.
Schwartz accurately described the severe complications measles can cause, including pneumonia and the fatal brain disease subacute sclerosing panencephalitis (SSPE). These complications are the mechanisms through which measles kills. Consequently, measles itself will rarely be the immediate cause (line a) on a death certificate. If a child contracts measles, develops pneumonia as a complication, and subsequently succumbs to respiratory failure, measles is unequivocally the underlying cause because it initiated the entire fatal chain. As the American Academy of Pediatrics has clarified, a child can die from complications of an infectious disease even if that disease isn’t the final condition listed.
Schwartz indicated that the CDC is awaiting confirmation from the National Center for Health Statistics (NCHS) that measles is indeed listed as the underlying cause on the death certificates before officially including these fatalities in national statistics. She also mentioned that the CDC has requested a formal definition of a measles death from the Council of State and Territorial Epidemiologists (CSTE). While seeking the underlying cause as the standard for official mortality statistics is epidemiologically sound, and a clearer surveillance definition would be beneficial, this approach introduces a significant delay.
Final death certificate data can take months to process and finalize. Historically, outbreak surveillance for diseases like measles has not waited for this lengthy process. During the COVID-19 pandemic, fast surveillance reports of positive cases and associated deaths were issued first, with death certificates providing a more definitive, albeit delayed, correction. The CDC’s current stance on measles deaths, which appears to prioritize final death certificate confirmation before inclusion in national updates, effectively reverses this traditional order for outbreak reporting. This shift raises questions about the agency’s ability to provide timely and comprehensive information during an active outbreak, potentially impacting public perception and the urgency of public health responses.
Implications: Erosion of Trust and Public Health Challenges
The recurring "died with, not from" debate, whether applied to COVID-19 or measles, carries profound implications for public trust, public health messaging, and the effectiveness of disease prevention strategies.
Erosion of Public Trust and Vaccine Hesitancy:
When public health authorities appear to waver on definitions or present seemingly inconsistent data, it can inadvertently sow doubt and undermine public confidence. During COVID-19, the "with, not from" narrative was weaponized to downplay the severity of the pandemic and fuel vaccine hesitancy. The resurgence of this language concerning measles, a highly contagious and vaccine-preventable disease experiencing a worrying global resurgence, risks a similar outcome. If the public perceives that measles deaths are being "inflated" or misattributed, it could further erode confidence in the MMR vaccine, leading to lower vaccination rates and a higher risk of widespread outbreaks. Rebuilding trust, as CDC Director Schwartz has prioritized, requires not just accuracy but also transparent and consistent communication, especially when dealing with complex medical definitions.
Challenges for Public Health Policy and Resource Allocation:
Accurate mortality data is the cornerstone of effective public health policy. It informs our understanding of disease burden, identifies vulnerable populations, and guides the allocation of resources for prevention, treatment, and surveillance. If deaths are undercounted or ambiguously reported, it can lead to a false sense of security, insufficient funding for public health initiatives, and a delayed or inadequate response to emerging threats. For measles, specifically, an accurate count of fatalities reinforces the seriousness of the disease and the critical importance of vaccination campaigns.
Politicization of Science and Data:
The "with, not from" debate often becomes entangled in political narratives, where scientific definitions are cherry-picked or distorted to support preconceived agendas. This politicization can overshadow the fundamental medical and epidemiological principles that guide death certification. Public health agencies face the delicate task of navigating this environment, ensuring their communication remains grounded in scientific rigor while also being accessible and understandable to a broad public. The perception of inconsistencies between state and federal reporting, or between past and present CDC practices, can easily be exploited by those seeking to undermine public health efforts.
Timeliness of Outbreak Surveillance:
The CDC’s stated approach of waiting for the underlying cause to be confirmed on final death certificates for measles fatalities, particularly for an acute outbreak, presents a challenge for timely outbreak surveillance. While accuracy is paramount for official mortality statistics, real-time outbreak management often relies on faster, preliminary data to assess the immediate threat and guide rapid interventions. Delaying the inclusion of reported deaths until formal certification is complete could mean that national updates lag behind the reality on the ground, potentially hindering a swift and robust public health response. A system that clearly distinguishes between preliminary surveillance data and finalized mortality statistics, explaining the purpose and limitations of each, might offer a more transparent and effective approach.
Ultimately, every death represents a tragic event, and every death has a definitive cause – something that initiated the cascade of physiological failures. The ongoing debate over whether someone died "with" or "from" a disease often gets fixated on the immediate, final event, rather than the underlying condition that set the entire process in motion, as meticulously captured by the death certificate. Schwartz’s emphasis on rebuilding trust through accuracy and transparency is laudable. To achieve this, public health agencies must not only adhere to rigorous scientific definitions but also clearly articulate them, showing the public which deaths are being reported by states, which are under review, and what specific standards are being applied. Only through such comprehensive clarity can the public truly understand the gravity of diseases like measles and trust the data that guides our collective health.
Elana Pearl Ben-Joseph is a pediatrician and senior medical and scientific editor of Unbiased Science. Jess Steier is a public health scientist and founder of Unbiased Science.
