The Maine Center for Disease Control and Prevention is proposing a rule change that would allow it to more easily withhold information on the locations of outbreaks of communicable diseases like measles, chicken pox and pertussis.

A rule is the same as a regulation, would have legal force behind it and implements an agency’s interpretation of a law.

Contacted Wednesday, CDC spokesman John Martins said the agency does not comment on pending rule changes.

The proposal comes a year after the Portland Press Herald filed a lawsuit in July 2015, when the Maine CDC denied the newspaper’s request for information about chicken pox outbreaks at three schools and a day-care facility during the 2014-15 school year. An outbreak is defined by the Maine CDC as a place where there are three or more cases of an infectious disease.

In a settlement agreement, the information was released to the Press Herald in October 2015, and the newspaper published the outbreak locations.

There were 84 chicken pox cases at Maine schools in 2014-15. Of those cases, 57 affected unvaccinated or undervaccinated children, according to CDC data.

In another case where public health advocates criticized the CDC for being unnecessarily secretive, the agency refused in 2014 to name the restaurant where a hepatitis A outbreak had occurred.

The Maine agency’s policy runs counter to recommendations by public health experts, who say that knowing where outbreaks occur is beneficial to the public health because some people – including infants, the elderly and those with compromised immune systems – are more susceptible to communicable diseases.

The CDC argued when denying the newspaper’s request last year that releasing the school names could jeopardize personal privacy because “indirect information” about the outbreaks could result in the public being able to identify people who had fallen ill.

But Sigmund Schutz, the Press Herald’s attorney, countered that the newspaper was not requesting personal information, and state law did not permit the CDC to deny the request.

Schutz said the new rule, if adopted, also would be in conflict with state open records laws, which do not give the agency latitude to deny requests based on unlikely scenarios that an individual could be identified.

Schutz said the newspaper will be lodging official comments objecting to the proposed rule. The public comment period ends Monday.

“If it was public information last summer, it would be public information this summer, too,” Schutz said. “The law hasn’t changed. If they want to make these types of changes, the proper body to make them is the Legislature. They could pass a law.”

Schutz said the law does say that the CDC could refuse to disclose “personally identifying medical information,” but that naming where an outbreak had occurred does not give out individual medical information.

“Under this (new) definition, all but the most extreme disease outbreaks could be considered confidential,” Schutz said.

In July 2015, attorneys representing the CDC cited a 2012 administrative policy that they said gave the agency substantial leeway to deny records requests. But Schutz noted that administrative policies are “merely advisory and do not have the force of law behind them,” unlike an administrative rule change.

The Maine Attorney General’s Office will review the proposed rule change within 150 days of the end of the public comment period, in part to determine whether the change is legal.

Dr. Lisa Ryan, a public health advocate and past president of the Maine Medical Association, said she doesn’t know the CDC’s reasoning behind the chicken pox denials, but it’s difficult to see how naming a school would jeopardize patient privacy.

“If we start to restrict information that’s important to public health, that’s concerning,” said Ryan, a pediatrician. “It’s important that the public knows about outbreaks.”

Ryan said people who are immune-compromised may avoid certain areas or social settings if they knew there was a disease outbreak nearby.

While state laws and procedures regarding public notices about disease outbreaks vary around the country, national guidelines recommended jointly by three public health advocacy groups advise health agencies to disclose 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 joint statement 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.

By contrast, the CDC’s internal policy says the agency should release “only the minimum amount of data necessary” to protect public health, because of privacy concerns. The 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.”

Officials with MaineHealth, the parent company of Maine Medical Center, indicated that they would be filing public comments on the proposed rule change. MaineHealth officials said the comments were still being discussed internally and they had no public statement to make at this time.


Only subscribers are eligible to post comments. Please subscribe or to participate in the conversation. Here’s why.

Use the form below to reset your password. When you've submitted your account email, we will send an email with a reset code.