The CDC’s latest measles update still doesn’t include Pennsylvania-reported deaths

The Centers for Disease Control and Prevention’s latest update Friday on the toll of measles outbreaks nationally continued to omit two measles-related deaths reported last week in Pennsylvania, extending an unusual standoff between federal and state health authorities.

The agency instead placed an asterisk in a column where, if reported, the Pennsylvania deaths would be recorded as the first in the nation this year. A note below stated that ”available information does not establish whether measles caused or contributed to the deaths or whether the individuals died from other causes while infected with measles.”

The omission marked a clear departure from the agency’s normal operating procedure, as President Donald Trump’s administration and Democratic Gov. Josh Shapiro continue to clash over how the deaths were characterized.

States report to the CDC cases and deaths for dozens of infectious diseases, such as hepatitis, influenza, and measles. The CDC has long compiled the data into reports that help epidemiologists monitor outbreaks and risk, and can inform lawmakers’ efforts to improve public health policy.

In a rare break from that norm, Health and Human Services Secretary Robert F. Kennedy Jr. asked the CDC’s newly appointed director, Erica Schwartz, to omit the Pennsylvania deaths, according to Reuters.

The move escalated a spat between Kennedy, a longtime anti-vaccine activist, and Shapiro, which began when the governor announced the deaths last Tuesday at a news conference in Lancaster County.

Shapiro accused Kennedy of spreading vaccine misinformation that has contributed to declining measles vaccination rates, and Kennedy suggested that Shapiro’s office had fabricated the deaths to win political points.

Public health experts warned that the ongoing political controversy sows doubt in what was designed as an unimpeachable health resource — national disease surveillance — and detracts from the ultimate public health goal of limiting the spread of illness.

“Every data point is a broken family, a mother crying, a future that’s lost. Instead of grieving that and making sure it never happens again, you’re debating the mechanism of death,” said Brian C. Castrucci, an epidemiologist and president and CEO of de Beaumont Foundation, a community health philanthropy outside Washington, D.C.

» READ MORE: What do we know about the deaths reported in Pennsylvania’s measles outbreak?

The Pennsylvania Department of Health reported the two deaths to the CDC the morning of Aug. 25, and professional staff at the CDC “did not express any concern regarding the information,” Neil Ruhland, a department spokesperson, said in an email.

He described the communication that followed as an extension of the department’s ongoing communications around the state’s outbreak:

The next day, the state health department discussed the details of each case with CDC professional staff. The CDC requested records containing identifiable information, which the health department did not share, consistent with its past practices.

Shapiro has cited state privacy laws, and the need to protect the privacy of the families involved to ensure community trust, with limiting his ability to release more information.

Instead, the health department asked the CDC for a case report form to provide de-identified information. The health department says it has not yet received that form.

Pennsylvania health officials have a measles outbreak response meeting with the CDC every other week, and most recently met on Tuesday.

“CDC professional staff have repeatedly made it clear that it has been supportive of DOH’s measles outbreak response,” Ruhland said.

The CDC’s website says the agency plans to update its measles death count once it has completed its review of Pennsylvania’s cases. But officials have not said what additional information they need from Pennsylvania or when they expect to complete their review.

The agency did not respond to a request for comment in time for publication.

Joshua Sharfstein, a physician who served as Maryland’s Health Secretary from 2011 to 2014, said he has never heard of the CDC omitting disease surveillance data reported by states.

“I wouldn’t say it’s off the table for the CDC to want more information,” but the way the agency went about it in Pennsylvania’s case is unusual, said Sharfstein, who also served as Baltimore’s health commissioner and currently works as a health policy professor at Johns Hopkins University.

He said he would expect the agency to report Pennsylvania’s data, while alerting officials they are looking for more information. “It’s supposed to be a collaborative relationship,” Sharfstein said.

Pennsylvania officials initially provided no additional information to the public about the two people who had died, other than they were unvaccinated Lancaster County residents.

The state’s decision to call the deaths measles-associated came after the state health department’s “epidemiology team thoroughly investigated and verified both individuals tested positive for measles,” Pennsylvania Health Secretary Debra Bogen said in a statement.

Pennsylvania defines a measles-associated death as deaths of people where evidence of measles is present, even when the disease may not be assessed by the coroner as the immediate cause of death.

Lancaster County’s coroner, Stephen Diamantoni, added confusion last week when he contradicted the state’s account.

Diamantoni, a physician and elected Republican, said his office was investigating one death involving a newborn and said postmortem testing showed the infant had a measles infection acquired before birth. But he said he did not believe measles contributed to the child’s death.

The child died shortly after birth of a lacerated spleen with trauma to the torso, Diamantoni said. He did not know what caused the lacerated spleen or trauma.

He later said measles was noted on the infant’s death certificate as a significant condition “contributing to death but not resulting in the underlying cause,” because the baby tested positive for measles.

On Friday, he said a 6-week-old Amish infant who was being treated for a deadly genetic disorder had died of measles in mid-August. He said he did not know if the case was the second measles-related death Pennsylvania reported, saying that he reported the death to the CDC on Friday.

Pennsylvania’s health department said it was aware of the information the coroner reported Friday and had “no new measles-associated deaths to report at this time.”

Shapiro reshared a news article about the death on X. In his post, he blamed Kennedy for creating “a firestorm of conspiracy theories that denied these families’ pain, invaded their privacy, and undermined public health.”

“It’s long past time for RFK to stop playing games with people’s lives, report these deaths accurately on the CDC dashboard, and heed the guidance of actual medical experts so people get accurate information to discuss with their trusted healthcare providers and can best protect themselves and their children against this deadly disease,” he wrote.

Kennedy fired back, highlighting the Lancaster coroner’s disclosures, in another X post later on Friday: “The facts emerging now demonstrate why CDC waited for the evidence rather than allowing political grandstanding to dictate its reporting.”

Fixating on whether a patient died “because of” or “with” measles inevitably politicizes the issue and does not benefit people’s health, Jake Scott, a clinical associate professor of infectious diseases at Stanford University, wrote in an opinion piece published online by the Center for Infectious Disease Research and Policy at the University of Minnesota.

Measles usually kills through the complications it causes, such as pneumonia, encephalitis, secondary bacterial infections, and pregnancy complications, he wrote.

“A death tally that can be altered by officials whom it embarrasses will not be trusted by anyone, including the officials who edited it,” Scott wrote.

Diamantoni, Lancaster’s coroner, told The Inquirer earlier this week he did not want “to be dragged into a political fray.”

“Our role in our office is not political in any way. We’re focused on determining the cause and manner of death, and using objective and scientific methods to do that,” he said. “We’ve worked hard to be sure that the information we’re providing is based on objective things.”

More than a week into the controversy, lawmakers continue to take political jabs.

“I am disgusted the Trump administration is putting Pennsylvania families at risk by spreading dangerous misinformation and politicizing these tragic deaths,” U.S. Rep. Brendan Boyle (D., Phila.) said in a statement.

Pennsylvania’s highest-ranking federal lawmakers — U.S. Sens. John Fetterman, a Democrat, and Dave McCormick, a Republican — did not respond to a request for comment Thursday about the state’s standoff with the CDC. McCormick voted to approve Schwartz as the new CDC director; Fetterman voted against.

U.S. Rep. Brian Fitzpatrick (R., Bucks), the only federal GOP lawmaker in the Philadelphia region, also did not respond to a request for comment. Neither did U.S. Rep. Lloyd Smucker, the Republican who represents Lancaster County and who blasted Shapiro last week for not providing more information about the measles-associated deaths.

Public health leaders, doctors, and epidemiologists say that finding a path forward has become an increasingly partisan issue at a time of rising vaccine hesitancy.

Medical experts will be tasked with trying to rebuild trust in health authorities in order to contain a rapidly spreading outbreak.

“How can any American citizen begin to make decisions about their health right now, in the milieu of misinformation and falsehoods we’ve created?” said Castrucci, de Beaumont’s CEO. “We have to get back to a point where at least the data can be trustworthy.

As of Friday, there have been 577 measles cases in Pennsylvania, including 115 reported within the last week, according to the state health department’s online measles dashboard.

Only South Carolina has reported more measles cases than Pennsylvania so far this year, according to the CDC’s measles webpage. There have been 3,134 cases nationally this year, the agency reported in its latest update Friday.

Pennsylvania’s measles-associated deaths remain an asterisk.

Inquirer staff writers Sam Janesch and Aubrey Whelan contributed to this article.