Maine’s policy of releasing “only the minimum amount of data necessary” during infectious disease outbreaks runs counter to recommendations issued by national public health organizations that believe being as open as possible is the best way to protect public health during outbreaks.
The Maine Center for Disease Control and Prevention has declined this week to release the names of the districts where four chicken pox outbreaks occurred this school year, despite having done so on at least three occasions during the 2000s. The Maine CDC doesn’t have to release the names of the schools, and has wide discretion on how much or how little information to release. Chicken pox has sickened 84 schoolchildren during the 2014-15 school year, according to the Maine CDC.
National guidelines recommended jointly by three separate groups emphasize openness and sharing of information.
“Public health officials should strive to release as much information as possible, within the limits of the law. Withhold information only when there is a clearly justified reason to keep it confidential,” according to the “overarching principles” of 2010 recommendations signed by the National Association of County and City Health Officials, the Association of State and Territorial Health Officials, and the Association of Health Care Journalists.
Maine’s policy, in contrast, says the Maine CDC should release “only the minimum amount of data necessary” to protect public health, because of privacy concerns. The CDC’s internal policy emphasizes the “negative consequences” of releasing information that leads to identifying someone, including “decline in property value, loss of job, legal prosecution, embarrassment, loss of health care and threats of physical violence.”
Trish Riley, executive director of the National Academy for State Health Policy and a longtime health advocate in Maine, said decisions on how much information to release about outbreaks must be at the discretion of each state. But, she said, as much transparency as possible is desirable to promote public health.
Deborah Deatrick, senior vice president of community health for MaineHealth, said Maine’s policy is shortsighted, and should instead be tilted toward releasing information. The state defines the infection of only three or more people in one place as an outbreak, and Deatrick said there’s no way that naming the school is identifying the sickened children.
The schools sent notes home with students about the chicken pox outbreaks, but Deatrick said the greater community should be notified to warn people who do not have school-aged children. Especially vulnerable during a chicken pox outbreak are infants, the elderly, unvaccinated adults who didn’t catch chicken pox when they were children, and those whose immune systems are compromised by a disease, such as cancer or AIDS.
“What they’re doing isn’t logical,” Deatrick said. “People have a right to know.”
When asked to explain why the Maine CDC did not provide the school names, Dr. Christopher Pezzullo, the CDC’s chief health officer, explained in an email that the names are released to the general public when the CDC determines there’s a need to do so to investigate the causes of an outbreak, or to help control the outbreak.
“In this case, the four schools were notified of the varicella (chicken pox) cases present in the school and letters were sent home to notify families,” he said. “These outbreaks are now resolved.”
Pezzullo didn’t respond to a series of follow-up questions Thursday, including what the threshold is for releasing the names of schools, and to specifically contrast the current cases with the ones in the 2000s when the school names were disclosed.
Deatrick said the Maine CDC should not withhold information from the public based on such vague guidelines.
“Who gets to make these judgment calls, to decide whether a disease is ‘serious enough’ for there to be public disclosure?” she said.
Deatrick said perhaps the Legislature should pass a law outlining more narrow circumstances for when the Maine CDC can withhold the names of places where infectious disease outbreaks occur.
Scott Briscoe, communications director for the Association of State and Territorial Health Officials, said in an email that there is no uniform policy on how to notify the public, and states have varying policies.
“Generally speaking, we defer to the decisions each state makes because only they know the unique circumstances around the issue,” Briscoe wrote.
Vaccines are an especially hot topic right now because Maine has one of the highest rates in the country of parents choosing to forgo vaccinations for school-age children. The Legislature is considering a law that would make it more difficult to opt out of vaccines, by requiring a consultation and written signature by a medical professional.
Although the Maine CDC has not been disclosing where disease outbreaks occur, last month the agency did, for the first time, release school-by-school vaccination rates for the 2014-15 school year. Previously, only a statewide average was released. State officials have said they released the information because it was in the public’s interest to do so.
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