The U.S. 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 — which is “notable” because the agency is slow to report other measles deaths, experts say.
The CDC cited privacy laws for not sharing the state’s name, but experts say there are no privacy concerns in doing so — and that information is important to the public as the outbreak continues to accelerate, increasing 8% in a week to 4,410 confirmed cases so far this year, nearly double last year’s number.
“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 person,” a spokesperson for the US Department of Health and Human Services (HHS) told the Guardian in response to questions about the location of death.
The spokesperson did not respond to follow-up questions about laws and restrictions that prevented the sharing of this information.
“I don’t believe it,” said Dorit Reiss, a law professor at UC Law San Francisco. “Naming a state does not mean giving personal details, but giving the number of cases in each state,” she said, adding that “there is nothing stopping you from giving the number of deaths in each state.”
The CDC is not governed by Hipaa like healthcare providers are. The agency is instead guided by federal privacy law, which generally prohibits the release of government records about specific individuals, said Lindsay Wiley, a law professor and director of the health law and policy program at UCLA Law.
“But this general prohibition only applies to information that reveals an individual’s identity,” Wiley said. “It is difficult to see how identifying the state in which a death occurred would allow the public to identify the patient.”
At the same time, it is “not uncommon” for agencies to use “an overly broad and unwarranted interpretation of privacy protections to refuse to share information that they would rather not share anyway because it could be seen as detrimental to their reputation or their agenda,” Wiley said.
The CDC in September opted for NCHS over the National Notifiable Diseases Surveillance System (NNDSS), a system that generally reports deaths quickly and indicates the state in which a death occurs. The agency did not give a clear reason for the change.
When only a few deaths have occurred, the NCHS generally does not specify where those deaths occur, which is one of the weaknesses of using it to report information of this type.
“But it’s also in the news, so it’s probably already identifiable,” said Debra Houry, former CDC chief medical officer. And the agency still has access to other reporting systems, like NNDSS, to know in which state there are deaths, Houry said.
Pennsylvania has strict privacy laws prohibiting disclosure of demographic or medical information, but “that still wouldn’t limit the condition and deaths,” she said.
Pennsylvania has now reported a total of six deaths, with the most recent case still under investigation by state authorities. By carefully tracing the cause of death before reporting it on the state dashboard, Pennsylvania officials are “doing the right thing,” Houry said.
The CDC dashboard lists only three measles deaths this year, despite five confirmed deaths in Pennsylvania. The agency did not give a reason for the delay; Typically, the NCHS system is updated a few days after states send information.
Reiss said it was “a change from past practices, and not a good one. (The) CDC is less transparent than in the past.”
Not having a clear picture of what’s happening in each state, including possible death from measles, makes it difficult to understand risk levels, said Paul Offit, an infectious disease doctor at Children’s Hospital of Philadelphia. “You would like to know what activity is in your state.”
Offit said he wondered if the secrecy “came from the top,” since officials such as HHS Secretary Robert F. Kennedy Jr. or CDC Director Erica Schwartz reportedly gave orders to reduce the number of measles deaths.
It’s also unclear whether the public is receiving an accurate number of cases, Offit said. A 39-year-old woman in Franklin County, Pennsylvania, died of an acute cardiac event, a known but very rare complication of measles infection, Offit noted.
“When you see something like this, you’re looking at the tip of a much bigger iceberg,” he said. “Are you actually monitoring the number of infected adults? I doubt it.”
It’s also harder to reach adults who might be at risk because they’re not vaccinated because most vaccination requirements are at the school level, Offit said. “What do you do for adults?” »
The decision not to include all measles deaths is “remarkable” and will likely have broad consequences, Offit said. The CDC has offered to send a support team to help Pennsylvania fight the outbreak, but state and local officials may be reluctant to work alongside staff from an agency that refuses to record accurate data, Offit said. “You ask yourself, ‘Can you trust them?’ It really is that bad.
Gn Health
