CDC adds a third measles death without identifying the state

Pennsylvania reports six deaths as the CDC dashboard lists three

The U.S. Centers for Disease Control and Prevention added a third measles death to its dashboard on Wednesday but would not say whether the person died in Pennsylvania or another state. The dashboard listed three deaths this year even as Pennsylvania reported six, five of them confirmed, with the most recent case still under investigation by state officials. Across the country, confirmed cases rose 8% in one week to 4,410 so far this year, nearly double last year’s count.

The gap between the two death counts follows a September change in how the CDC tracks the figures. The agency switched from the National Notifiable Diseases Surveillance System to the National Center for Health Statistics without giving a clear reason. NNDSS usually reports deaths quickly and provides the state where a death occurred; when only a few deaths have occurred, NCHS generally does not say where those deaths are happening, one of the weaknesses of using it to report information like this. The CDC dashboard lists three measles deaths this year despite five confirmed deaths in Pennsylvania, and the agency has not given a reason for the delay, even though the NCHS system is usually updated within days of states sending information.

A spokesperson for the U.S. Department of Health and Human Services 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.” The spokesperson did not respond to follow-up questions about which laws and restrictions prevented that information from being shared.

Dorit Reiss, a professor of law at UC Law San Francisco, rejected that rationale, saying, “I don’t buy it.” “Naming a state won’t be giving personal details, and they give the number of cases in each state,” she said, adding there was “nothing to prevent giving numbers of deaths in each”.

Lindsay Wiley, a professor of law and faculty director of the Health Law and Policy Program at UCLA Law, said the CDC is not governed by HIPAA as health providers are. The agency is instead guided 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 also said it was “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.”

Debra Houry, a former CDC chief medical officer, said a death already in the news was likely identifiable and that the CDC still had access to reporting systems such as NNDSS that could show which state recorded a death. Houry said Pennsylvania’s strict privacy laws bar demographic information and medical details but would not limit reporting the state or number of deaths. She said Pennsylvania officials were tracing the cause of death before adding it to the state dashboard and were “doing the right thing.”

Reiss said the reporting change was “a change from past practice, and not a good one. [The] CDC is being less transparent than in the past.”

Paul Offit, an infectious diseases physician at the Children’s Hospital of Philadelphia, said the absence of a clear picture of what was happening in each state, including a possible death from measles, made risk levels hard to understand. “You’d like to know what the activity is in your state,” he said.

Offit said he wondered whether the decision not to identify the state was “coming from the top,” noting that HHS Secretary Robert F Kennedy Jr and CDC Director Erica Schwartz had reportedly given orders to decrease the measles death count. He also said it was not clear whether the public was receiving accurate numbers of cases.

Offit pointed to the death of a 39-year-old woman in Franklin County, Pennsylvania, from an acute cardiac event, which he described as a known but very rare complication of measles infection. “When you see something like that, you’re looking at the tip of a much bigger iceberg,” he said. He asked, “Are you really monitoring how many adults are getting infected? I doubt it.”

He said adults who are not vaccinated can be harder to reach because most vaccination requirements occur at the school level. “What do you do for adults?” he asked.

Offit called the decision not to include all measles deaths “notable” and said it was likely to have wide-ranging consequences. The CDC has offered to send Pennsylvania a support team to help with the outbreak. Offit said state and local officials may be wary of working alongside CDC staff at what he described as an agency refusing to record accurate data. “You wonder, ‘Can you trust them?’ It’s really that bad.”

Earlier, Pennsylvania conditioned its request for CDC epidemic assistance on transparent recognition of four state-reported deaths. The CDC has now added a third death nationally but still has not reflected Pennsylvania’s total of six or identified the newly added death’s state.