CDC refuses to identify state of third measles death, alarming transparency experts

Agency cites privacy laws but critics say no personal information would be disclosed as outbreak accelerates

By LineZotpaper

Published22 October 2026

Read Time3 min

The US Centers for Disease Control and Prevention added a third measles death to its dashboard this week but declined to reveal which state it occurred in, drawing sharp criticism from infectious disease and legal experts who say the agency is being less transparent than in the past. The decision comes as the outbreak continues to accelerate, with 4,410 confirmed cases so far this year, nearly double last year's count and an 8% increase in a single week.

The CDC has not disclosed the location of the third measles death, citing privacy laws. In a statement to the Guardian, a spokesperson for the Department of Health and Human Services said that "due to privacy laws and legal restrictions, NCHS [the National Center for Health Statistics] cannot identify a state or provide additional details about the third individual." The spokesperson did not respond to follow-up questions about which specific laws or restrictions prevented the information from being shared.

Legal experts disputed the reasoning. Dorit Reiss, a professor of law at UC Law San Francisco, said: "I don't buy it. Naming a state won't be giving personal details, and they give the number of cases in each state." Reiss added there was "nothing to prevent giving numbers of deaths in each."

Lindsay Wiley, professor of law and faculty director of the Health Law and Policy Program at UCLA Law, noted that the CDC is not governed by HIPAA but by the Federal Privacy Act, which usually prohibits disclosing government records about specific individuals. "But this general prohibition only applies to information that reveals an individual's identity," Wiley said. "It's hard to see how identifying the state where a death occurred would allow the public to identify the patient." Wiley added that it is "not unheard of" for agencies to use an "overly broad, unwarranted interpretation of privacy protections to decline to share information that they prefer not to share anyway, because it may be seen as damaging to their reputation or agenda."

The CDC switched in September to using the National Center for Health Statistics rather than the National Notifiable Diseases Surveillance System, which typically reports deaths quickly along with the state of occurrence. The agency has not provided a clear reason for the change. Debra Houry, former chief medical officer at the CDC, said that when only a few deaths have occurred, NCHS usually does not say where they are happening, which is one weakness of using that system. Houry noted that the agency still has access to other reporting systems to know which state has deaths.

Pennsylvania has reported a total of six deaths from measles, with the most recent still under investigation by state officials, but the CDC dashboard lists only three. The agency has not explained the delay. Paul Offit, an infectious diseases physician at the Children's Hospital of Philadelphia, said the secrecy made it hard to understand risk levels. "You'd like to know what the activity is in your state," Offit said. He questioned whether the lack of transparency was "coming from the top" after reports that HHS Secretary Robert F. Kennedy Jr. and CDC Director Erica Schwartz had given orders to decrease the measles death count. Offit also expressed doubt about the accuracy of case numbers and said the decision not to include all deaths was "notable" with wide-ranging consequences.

Analysis

Why This Matters

Measles is a highly contagious, vaccine-preventable disease; accurate death and case data are essential for public health response and risk communication.
The CDC's opacity may erode trust among state and local health officials already battling the outbreak, and could hamper efforts to reach unvaccinated adults.
The decision sets a precedent for how the agency handles mortality data during public health emergencies, undermining decades of transparency norms.

Background

The CDC has historically reported measles deaths and cases through the National Notifiable Diseases Surveillance System, which provides state-level details quickly. In September 2025, the agency shifted to using the National Center for Health Statistics, a system that is often slower and less granular for small numbers of deaths. The change was made without a clear public explanation. Meanwhile, the current measles outbreak in the US has spread to multiple states, with Pennsylvania reporting the most fatalities. Experts note that the CDC still has access to NNDSS data internally but is choosing not to publish it.

Key Perspectives

Public health and legal experts: They argue that identifying the state of a death does not violate any privacy laws and that the CDC's interpretation of its obligations is overly broad. They see the move as a deliberate reduction in transparency that makes it harder for the public and local officials to assess risk. CDC/HHS: The agency has stated that privacy laws and legal restrictions prevent it from naming the state. It has not specified which laws apply or why identifying a state would reveal an individual's identity. The CDC has offered to send a support team to Pennsylvania but has not clarified its data reporting practices. Critics and skeptics: Some physicians suspect political interference from senior HHS and CDC leadership who may want to downplay the outbreak. They worry that inaccurate data could lead to under-vaccination and further spread, particularly among adults who are not captured by school-based immunization mandates.

What to Watch

Whether the CDC releases the state of the third death or provides a legal justification for withholding it.
Whether Pennsylvania or other states publicly challenge the CDC's data and begin reporting their own death counts separately.
Any further uptick in case numbers or additional deaths that may force the agency to change its reporting policy.

Sources

Experts alarmed by ‘less transparent’ CDC as US measles deaths rise · World news | The Guardian

Checked

9 claims in this story checked against 1 source: 6 supported.

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SupportedThe CDC added a third measles death to its dashboard and would not identify the state where it occurred.World news | The Guardian: “The US Centers for Disease Control and Prevention (CDC) added a third measles death to its dashboard on Wednesday, but the agency would not reveal whether the death occurred in Pennsylvania or another state”
SupportedThe CDC cited privacy laws, while experts said naming the state would not disclose personal information.World news | The Guardian: “The CDC cited privacy laws in not sharing the name of the state, but experts say there are no privacy concerns in doing so”
SupportedMeasles cases reached 4,410 so far this year, nearly double last year’s count and up 8% in one week.World news | The Guardian: “growing by 8% in one week to 4,410 confirmed cases so far this year, nearly double last year’s count.”
SupportedLegal and infectious-disease experts criticized the CDC as less transparent than in the past.World news | The Guardian: “[The] CDC is being less transparent than in the past.”
SupportedThe spokesperson said: “due to privacy laws and legal restrictions, NCHS [the National Center for Health Statistics] cannot identify a state or provide additional details about the third individual.”World news | The Guardian: ““Due to privacy laws and legal restrictions, NCHS [the National Center for Health Statistics] cannot identify a state or provide additional details about the third individual,” a spokesperson with the US Department of Health and Human Services (HHS) told the Guardian”
Partly supportedDebra Houry said NCHS usually does not say where deaths are happening when only a few have occurred.World news | The Guardian: “When only a few deaths have occurred, NCHS usually does not say where those deaths are happening, which is one of the weaknesses in using it to report information like this.”
SupportedPennsylvania reported six measles deaths, with the most recent still under investigation, while the CDC dashboard listed three.World news | The Guardian: “Pennsylvania has now reported a total of six deaths, with the most recent case still under investigation by state officials. ... The CDC dashboard only lists three deaths from measles this year”
Partly supportedOffit questioned whether the secrecy was “coming from the top” after reports that both Kennedy and Schwartz had ordered a decrease in the measles death count.World news | The Guardian: “Offit said he wondered if the secrecy was “coming from the top”, since officials such as Robert F Kennedy Jr, HHS secretary, or Erica Schwartz, CDC director, have reportedly given orders to decrease the measles death count.”
Partly supportedOffit said the decision not to include all measles deaths was “notable” and had wide-ranging consequences.World news | The Guardian: “The decision not to include all deaths from measles is “notable” and will likely have wide-ranging consequences, Offit said.”