Listen to article \u2022\u00a00:00 min<\/p>\n
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. <\/p>\n
Most of what the public knows about the four deaths linked to the outbreak<\/a> \u2014 ranging in age from a newborn to a 40-year-old \u2014 has come from local coroners in Jefferson, Mifflin, and Lancaster Counties. In one case, a family also spoke<\/a> to the media.<\/p>\n Pennsylvania\u2019s 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. <\/p>\n 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<\/a> of the highly contagious disease. <\/p>\n 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.<\/p>\n The spreading outbreak<\/a> has sickened 767 people \u2014 now the largest outbreak in the United States \u2014 and hospitalized 150 people as of Friday. The deaths reported by the state mark Pennsylvania\u2019s first in 35 years, and the most seen nationally from measles in three decades. <\/p>\n Here\u2019s what to know about Pennsylvania\u2019s privacy laws and how officials communicate in infectious disease outbreaks.<\/p>\n What is known about the measles-associated deaths in Pennsylvania?<\/p>\n State officials announced two \u201cmeasles-associated\u201d deaths in Lancaster County<\/a> late last month, though they did not define the term in an initial news release<\/a> on the cases. They did not provide any additional information, beyond saying both victims were unvaccinated and residents of Lancaster County.<\/p>\n Lancaster County\u2019s coroner subsequently shared that he had investigated one of the deaths<\/a>, 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\u2019s spleen, putting it at higher risk for rupture.<\/p>\n The state has continued to characterize the Lancaster County infant\u2019s death as \u201cmeasles-associated,\u201d 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. <\/p>\n Lancaster\u2019s coroner said a second death<\/a>, 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. <\/p>\n State officials confirmed two more measles-associated deaths last week. <\/p>\n Jefferson County\u2019s coroner said measles led to the death of a 40-year-old unvaccinated woman<\/a> 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.<\/p>\n Mifflin County\u2019s coroner also confirmed that an unvaccinated 18-year-old died of a rare neurological complication of measles.<\/p>\n Why are state and federal officials clashing over the deaths?<\/p>\n Starting with the initial news conference<\/a> to announce the first two deaths, Democratic Gov. Josh Shapiro<\/a> has traded barbs<\/a> with President Donald Trump<\/a>\u2019s Health and Human Services secretary, Robert F. Kennedy, Jr., over the outbreak. <\/p>\n 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\u2019s staff may have \u201cfabricated\u201d the deaths, after the Lancaster County coroner\u2019s comments, though Kennedy later acknowledged one infant\u2019s death was caused by measles.<\/p>\n Federal officials said Tuesday they were aware of the third and fourth deaths reported in Pennsylvania but have not updated the federal website<\/a> 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<\/a> \u201cidentifies measles as the underlying cause based on death record information submitted by the states.\u201d<\/p>\n Democrats<\/a> and public health experts have harshly criticized the decision, saying it\u2019s a departure from established procedures for recording infectious disease deaths.<\/p>\n State health officials said they have discussed the details of each case with CDC professional staff, \u201cat length.\u201d<\/p>\n \u201cAt no point did CDC staff express any concern or issue with the data we provided,\u201d they wrote in a statement.<\/p>\n Why is the health department not releasing more information on measles-associated deaths? Why can coroners give out more information?<\/p>\n Pennsylvania health officials have cited two state laws: one prohibiting public access to death records<\/a> and another that requires the state<\/a> to keep records of diseases confidential, except when it\u2019s necessary to inform the public of the risk of communicable disease.<\/p>\n 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<\/a>. Laws governing coroners\u2019 duties and the state\u2019s right-to-know statute allow them to provide the public with identifying details like a person\u2019s cause and manner of death, the state says.<\/p>\n \u201cReleasing 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,\u201d state health officials said in a statement.<\/p>\n 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.<\/p>\n Robert Field, a professor emeritus at Drexel University<\/a>\u2019s Thomas R. Kline School of Law, said health departments typically release aggregate data about disease outbreaks, not individual deaths.<\/p>\n \u201cConfidentiality and privacy are major issues for any health department, which is why the regulations are stricter,\u201d he said. With just a few measles-associated deaths reported, he said, releasing further details about the deaths could risk identifying families.<\/p>\n \u201cA newborn dying with a ruptured spleen \u2014 there aren\u2019t a lot of those,\u201d he said, referencing one case in Lancaster County. \u201cIn terms of additional information, further details that would ID the patients \u2014 that would be off-limits.\u201d <\/p>\n Why are some experts criticizing state officials over their communications strategy?<\/p>\n Releasing less information about a death risks creating an \u201cinformation vacuum,\u201d especially in a highly politically charged environment, said Amesh Adalja, an infectious disease physician at the University of Pittsburgh Medical Center.<\/p>\n 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.<\/p>\n \u201cCoroners talking in detail about cases they\u2019ve been handling, as well as the parents of the neonate that died\u201d provided \u201creally important information that helped bring a lot of clarity to an information vacuum,\u201d said Adalja, who is also a senior scholar at the Johns Hopkins Center for Health Security.<\/p>\n