Category: Health

In the last month, Pennsylvania health officials have announced four measles-associated deaths but have been tight-lipped about almost every detail, beyond sharing their county of residence and that all were unvaccinated.

Most of what the public knows about the four deaths linked to the outbreak — ranging in age from a newborn to a 40-year-old — has come from local coroners in Jefferson, Mifflin, and Lancaster Counties. In one case, a family also spoke to the media.

Pennsylvania’s health department has cited state privacy laws that they say prohibit them from releasing more information. Legal and public health experts acknowledge the state faces legal restrictions, but some argue that the state should do whatever it can to ensure more information about the deaths is made public.

More details about a death, they say, help the public to understand the risks of measles and the benefits of vaccination to prevent the spread of the highly contagious disease.

Transparency around how the state defines measles-associated deaths and unvaccinated people can also head off misinformation, they said, in a highly politically charged environment.

The spreading outbreak has sickened 767 people — now the largest outbreak in the United States — and hospitalized 150 people as of Friday. The deaths reported by the state mark Pennsylvania’s first in 35 years, and the most seen nationally from measles in three decades.

Here’s what to know about Pennsylvania’s privacy laws and how officials communicate in infectious disease outbreaks.

What is known about the measles-associated deaths in Pennsylvania?

State officials announced two “measles-associated” deaths in Lancaster County late last month, though they did not define the term in an initial news release on the cases. They did not provide any additional information, beyond saying both victims were unvaccinated and residents of Lancaster County.

Lancaster County’s coroner subsequently shared that he had investigated one of the deaths, involving an infant who contracted measles in utero and died shortly after birth. The baby tested positive for measles, but, the coroner said, died from a ruptured spleen. Physicians have pointed out that measles can damage a person’s spleen, putting it at higher risk for rupture.

The state has continued to characterize the Lancaster County infant’s death as “measles-associated,” meaning it occurred within 30 days of symptom onset in a person with clinical evidence of infection and a positive laboratory test for measles, and who did not die of another unrelated cause, like a car crash.

Lancaster’s coroner said a second death, in a 6-week-old Lancaster County baby, was caused by measles. The child also had Amish lethal microcephaly, a fatal genetic disorder that makes it especially risky to contract a respiratory illness like measles.

State officials confirmed two more measles-associated deaths last week.

Jefferson County’s coroner said measles led to the death of a 40-year-old unvaccinated woman with severe respiratory conditions. A postmortem test showed the woman had an active measles infection, and she had also been exposed to a person with a lab-confirmed measles case.

Mifflin County’s coroner also confirmed that an unvaccinated 18-year-old died of a rare neurological complication of measles.

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Why are state and federal officials clashing over the deaths?

Starting with the initial news conference to announce the first two deaths, Democratic Gov. Josh Shapiro has traded barbs with President Donald Trump’s Health and Human Services secretary, Robert F. Kennedy, Jr., over the outbreak.

Shapiro has accused Kennedy, a longtime anti-vaccine activist, of spreading misinformation contributing to a decline in vaccination rates. Kennedy said in a social media post that Shapiro’s staff may have “fabricated” the deaths, after the Lancaster County coroner’s comments, though Kennedy later acknowledged one infant’s death was caused by measles.

Federal officials said Tuesday they were aware of the third and fourth deaths reported in Pennsylvania but have not updated the federal website tracking measles cases to reflect any of the deaths reported by Pennsylvania. They have said they will record measles-related deaths when the National Center for Health Statistics “identifies measles as the underlying cause based on death record information submitted by the states.”

Democrats and public health experts have harshly criticized the decision, saying it’s a departure from established procedures for recording infectious disease deaths.

State health officials said they have discussed the details of each case with CDC professional staff, “at length.”

“At no point did CDC staff express any concern or issue with the data we provided,” they wrote in a statement.

Why is the health department not releasing more information on measles-associated deaths? Why can coroners give out more information?

Pennsylvania health officials have cited two state laws: one prohibiting public access to death records and another that requires the state to keep records of diseases confidential, except when it’s necessary to inform the public of the risk of communicable disease.

But coroners and medical examiners are county officials who operate by different rules, the state said in a frequently-asked-questions document posted online last week. Laws governing coroners’ duties and the state’s right-to-know statute allow them to provide the public with identifying details like a person’s cause and manner of death, the state says.

“Releasing additional details beyond what we did could have led to the unnecessary identification of individuals and their families. Further, the specific details of a single case do not change the important message that measles is a highly contagious virus that can cause severe illness and complications, and the MMR vaccine is the best protection against it,” state health officials said in a statement.

Legal experts say decision-making around what to reveal about a death during a measles outbreak is difficult, and privacy laws do apply to health departments.

Robert Field, a professor emeritus at Drexel University’s Thomas R. Kline School of Law, said health departments typically release aggregate data about disease outbreaks, not individual deaths.

“Confidentiality and privacy are major issues for any health department, which is why the regulations are stricter,” he said. With just a few measles-associated deaths reported, he said, releasing further details about the deaths could risk identifying families.

“A newborn dying with a ruptured spleen — there aren’t a lot of those,” he said, referencing one case in Lancaster County. “In terms of additional information, further details that would ID the patients — that would be off-limits.”

Why are some experts criticizing state officials over their communications strategy?

Releasing less information about a death risks creating an “information vacuum,” especially in a highly politically charged environment, said Amesh Adalja, an infectious disease physician at the University of Pittsburgh Medical Center.

Unlike the first two deaths, announced by the state last month without further detail, the public immediately knew more about the two disclosed last week, he noted, crediting coroners in Jefferson and Mifflin Counties who have been forthcoming with information about the deaths.

“Coroners talking in detail about cases they’ve been handling, as well as the parents of the neonate that died” provided “really important information that helped bring a lot of clarity to an information vacuum,” said Adalja, who is also a senior scholar at the Johns Hopkins Center for Health Security.

Adalja has said the state should have been clearer from the onset about how it defines measles-associated deaths, and could have provided information about the victims’ general age ranges — for example, whether they were adults or children. And the state could involve other officials who are not restricted by the same privacy laws, he said.

“If they assess they are bound by Pennsylvania state law in a way that county coroners are not, include coroners in the press conferences,” Adalja said.

He added that Shapiro and Kennedy’s political fight over the nature of the deaths risks overshadowing a serious measles outbreak that has sickened hundreds.

“The anti-vaccine movement has really made inroads here — people are calling this a hoax,” he said. “It’s obviously not a hoax. And there are real actions that need to be taken. It’s much harder to do that work when you [are] engulfed in some political problem.”

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Arthur Caplan, a New York University professor emeritus, wrote in an Inquirer op-ed Thursday that the state should provide “maximum information” about the deaths “in order to prevent further harm.”

He sharply criticized Kennedy, accusing the nation’s top health official of spreading misinformation about vaccine safety and the threat of measles: “[Nothing] the federal government has to say about measles is trustworthy,” he wrote.

In an interview, he said state should weigh privacy obligations with the need to inform the public about whether victims had exposed others to measles.

“In the middle of an epidemic, those laws need to be pushed as far as you can,” he said.

Drexel’s Field said the state could also have emphasized that “unvaccinated” does not necessarily mean that a person chose not to take a measles, mumps, and rubella vaccine. Some people, like newborns, pregnant women, and people with weakened immune systems, are unable to be vaccinated.

“People should know that if they choose not to be vaccinated and contribute to the spread, it could affect people who did not decline vaccination by choice but are in such fragile health that there is no choice,” he said.

State officials have said that even revealing that someone was too young to be vaccinated would be enough to identify the deceased in small communities.

It’s imperative that health officials balance the need to inform the public and maintain trust amid the growing outbreak, Field said, especially as vaccination rates drop.

“If the credibility of the state health department is questioned by the public, then I think we’re in big trouble. And that would be a very unfortunate outcome of this,” he said.

Leah Santos still wears a mask during her daily Regional Rail commute into Philly.

The 35-year-old nurse from Springfield, Delaware County, never stopped implementing COVID-19-era precautions. And she’s just as careful with her 1-year-old son.

So when Santos learned in May about the growing measles outbreak in nearby Lancaster County, she started asking a new question of friends and family who regularly make excursions around the region for shopping and dining: Have you been to Lancaster lately?

“I have a child to protect at all costs. So I’m making sure I’m not in contact with anyone who’s been traveling out to Lancaster,” Santos said.

A spreading measles outbreak in Pennsylvania has sickened 767 people already this year, and hospitalized 45 children under age 18. State officials have announced four deaths related to the outbreak: two infants in Lancaster County, a 40-year-old in Jefferson County, and an 18-year-old in Mifflin County.

Chester County remains the only Philadelphia-area county with confirmed cases — more than 65 this year, the third-highest in the state.

But in a densely populated region where crossing county lines for work and socializing is the norm, some worried parents are vaccinating babies early, delaying daycare, and weighing the risks of attending crowded festivals with their kids or visiting family in affected areas.

Measles can be more dangerous for some

Young children are especially at risk from the vaccine-preventable disease, which in severe cases can cause pneumonia, blindness, and brain swelling that can lead to brain damage.

None of the Pennsylvania residents who died were vaccinated against a virus so contagious that it will infect nine in 10 unvaccinated people who are exposed.

Measles deaths are rare, and the four deaths confirmed as “measles-associated” by Pennsylvania health officials, sparked a political standoff between Democratic Gov. Josh Shapiro and President Donald Trump’s Health Secretary, Robert F. Kennedy Jr., a longtime anti-vaccine activist.

Experts say that life shouldn’t change much for families whose children are vaccinated and otherwise healthy. But it’s important to take the disease seriously at a time when declining vaccination rates have left communities across the state increasingly vulnerable, including in the Philadelphia region.

Even as countywide immunization levels in the area remain relatively high, hundreds of kindergartens across Philadelphia and four surrounding suburban counties dropped below the “herd immunity” threshold — a vaccination rate of 95% or higher — for the 2025-26 school year, an Inquirer analysis of state data found.

This is the level at which a given population must be fully vaccinated against measles to prevent the spread of disease. In the Philadelphia region last school year, about 40% of kindergartens failed to meet that threshold, up from about a third the year before.

What are the pediatric guidelines to protect against measles?

Pediatricians typically recommend a child’s first vaccine for measles, mumps, and rubella at 1 year old, unless the child is likely to travel overseas, and then a second between 4 and 6 years old.

But Pennsylvania health officials are now encouraging a “dose zero” for children as young as 6 months old in counties affected by the state’s worst outbreak in three decades. Children can then get a second dose at 1 year old and another at 4 to 6 years old. The state is also recommending that children older than 1 who haven’t started their MMR vaccine series get two doses of the vaccine at least 28 days apart.

Santos said her son recently had his first vaccination, and her son’s pediatrician recommended he get his next shot at just 15 months old.

“We have gotten so far from knowing what vaccinations have done for us that we have no idea how terrifying this disease is,” Santos said.

‘One of those things you never think would affect you’

Caitlin Buttery of Kennett Square, in Chester County, recalls her trip, earlier this summer, to Lancaster when she was nine months pregnant, only to regret it after learning about the measles outbreak.

Now, with a healthy 6-week old baby, as well as an 18-month old, she’s avoiding the Lancaster area and also monitoring cases in her own county, where measles is circulating.

She worries about taking her children to public spaces like the YMCA or Kennett Square’s annual Mushroom Festival, which earlier this month drew thousands to the rural town.

“Measles is definitely one of those things you never think would affect you,” she said. “Now, I need to be a lot more cognizant of the chance that it could.”

The 33-year-old said she plans to get her youngest the measles, mumps, and rubella vaccine at 6 months old.

Public health experts have warned that there are likely far more measles cases circulating in Pennsylvania than have been recorded by the state. And the disease doesn’t confine itself to county or state borders. Across the United States, more than 3,100 people this year have tested positive for the disease, the CDC said last Thursday.

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Amina Lowery lives in Upper Darby. No cases have been reported in Delaware County, but health officials there did identify measles in a wastewater sample earlier this summer, meaning someone with the disease used a bathroom connected to the county’s public water supply.

Lowery opted to get her 6-month-old daughter vaccinated early. She also quit her job in the insurance industry to keep her daughter out of daycare, “since we can’t control what other parents decide.” She said the plan now is to enroll her child when she’s closer to 2 years old.

She feels safer having her child vaccinated ahead of a family trip later this year to Florida, which is also dealing with a measles outbreak.

“We have the research and documentation to show that vaccines work and are for the greater good. It feels like we are in the midst of societal decline,” Lowery said.

Like Lowery, Shelby Steele of Springfield opted to keep her daughter out of daycare. Her daughter is now nearly 2 years old, but Steele, a consultant who works from home, isn’t any closer to enrolling her.

“We obviously worry about the socialization aspect of things, but measles is no joke. We’d rather find more creative ways to socialize her safely for now,” Steele said.

Steele and her partner want to have another child if possible. But she said the measles outbreak “and just the current state of things overall” makes them think twice about the risks a child could face.

Steele said she’d like to send her daughter to school, but the outbreak even has her considering homeschooling. “We are having to reconsider a lot of things, schooling being one of them,” she said.

Physicians advise parents on navigating the outbreak

Pediatrician Katie Lockwood says parents coming to her Children’s Hospital of Philadelphia practice in Montgomery County say they’re changing childcare and vacation plans to avoid measles exposures.

Montgomery County has reported three measles cases this year.

“If you’re fully vaccinated and healthy, I don’t think there’s a change in how you need to operate right now,” Lockwood said.

“But if you have someone in your family who is particularly vulnerable, if they’re immunocompromised, pregnant, or unvaccinated because they’re too young, then you may want to change your behaviors.”

She advises parents to talk to school officials and daycare providers about their vaccination policies, keep sick kids home to avoid spreading illness, and make sure children are up to date on all recommended vaccines.

“It’s awful that now parents are having to make a decision between work and childcare for something that we can prevent safely with vaccination,” she said. “Not everyone has the ability to quit their job or stay home, and they may not have an alternative childcare resource.”

Like many practicing physicians today, most schools and daycares have never had to deal with a measles case. Lockwood recently had several childcare providers refer children with rashes to her practice, worried about measles.

None of the children had the disease, but “I would rather a school or a daycare overreact,” she said, explaining that keeping a child out of school to evaluate a rash that proves harmless prevents “potentially exposing a bunch of kids to measles.”

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In Bucks County, pediatrician Toni Richards-Rowley often counsels parents frustrated about having to navigate the outbreak.

She also serves as president of the Pennsylvania chapter of the American Academy of Pediatrics, which has been working to educate doctors about measles and how to recognize it.

In her own practice, Richards-Rowley is also offering “dose zero” shots for children whose parents work or plan travel to affected counties.

“If a parent asks for it, even though there’s not community spread in Bucks yet, we’re not going to turn a family away,” she said.

“Measles doesn’t respect borders. Just because we don’t have an index case doesn’t mean it’s not going to happen. You do have to be fairly vigilant wherever you go.”

Correction: This story has been updated to delete an incorrect reference to Upper Darby’s geography in the region.