YORK — If Susan Murphy, who has leukemia and a separate autoimmune disease, gets an infection, it could send her to the hospital – or the grave.

So Murphy, 63, was upset to learn this past week that the Maine Center for Disease Control and Prevention refused to publicly release the names of the schools where an unprecedented number of outbreaks of chickenpox occurred. Four outbreaks at schools in one school year set a record since Maine began requiring the chickenpox vaccine for entrance to school in 2003. Overall, Maine has had 84 cases of chickenpox during the 2014-15 school year.

But not knowing where the four outbreaks happened is galling for Murphy because she lives every day afraid of infectious diseases. Maine defines an outbreak as three or more cases of infectious disease in one setting, such as a school or a restaurant.

“Every day is hard enough for me,” said Murphy, whose kitchen table at her home in York is full of medications she must take to control her diseases and symptoms. She said she’s usually exhausted by noon. “If I get an infection, in all probability my immune system won’t be able to protect me. I can’t believe the Maine CDC would do this. The public has a right to know.”

Without any school-age children, Murphy would have no way of knowing that an outbreak occurred at a nearby school. Schools, at the recommendation of the Maine CDC, do send home notes with students notifying parents of outbreaks.

But that doesn’t help people, like Murphy, who aren’t plugged into internal school communications.

Other Mainers and public health experts say the agency is putting people at risk by not publicly disclosing where outbreaks occur. Most at risk are the immune-compromised such as Murphy, the elderly and infants too young to get their vaccines. Chickenpox is “highly contagious,” according to the U.S. Centers for Disease Control and Prevention, and can be spread through the air or by touch. For instance, someone who is contagious with the virus could sneeze in a public place and spread it to others.

But the Maine CDC has said the four outbreaks did not meet the criteria needed to publicly disclose the schools. When asked, state health officials refused to spell out specifically what threshold needs to be met to release the locations of where infectious disease outbreaks occur. Without going into detail, Maine health officials said their protocol on handling outbreaks is similar to other New England states’.

Dr. Christopher Pezzullo, the Maine CDC’s chief health officer, referred all questions to the CDC’s communications department Friday. The CDC did not respond to questions asking for elaboration Thursday and Friday.

However, the Maine CDC appears to be contradicting its own actions from the 2000s, when on at least three occasions it named the school or town where an outbreak occurred, including a chickenpox outbreak in Brunswick in 2006.

A policy followed by the Maine CDC says that only the “minimum amount of data necessary” should be released to the public when an outbreak occurs, to protect personal privacy. In contrast, policy recommendations by national public health groups recommend disclosure whenever possible.

“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.

Murphy, a Brooklyn native, moved to Maine in 2011 after she was diagnosed with leukemia and Sjogren’s syndrome, an autoimmune disease. She said she relocated in part to get away from the crowds in New York so she would be less likely to contract an infection.

What she didn’t count on was the Maine CDC and the underlying reason the state is at risk of infectious disease outbreaks – the high numbers of unvaccinated children. Maine has one of the highest voluntary opt-out rates in the country for vaccines for children entering kindergarten, fifth-highest in 2013-14 at 5.2 percent. The rate has declined to 3.9 percent for the current school year, although that would historically still be among the highest in the country. The national data for 2014-15 haven’t been released yet by the U.S. CDC.

Most are choosing to forgo vaccines for their children on philosophic grounds, often citing unfounded fears that vaccines can injure children or cause autism. Numerous studies have proved that vaccines are overwhelmingly safe and do not cause autism.

The Maine CDC did decide it was in the public interest to release school-by-school vaccination rates so that the public would know the vaccine coverage by school. The Press Herald has published a searchable database so parents can look up their schools.

When the data were released last month, they revealed there were pockets of high resistance to being vaccinated. In about 60 elementary schools, kindergarten or first-grade classes had more than 10 percent of the students opting out of vaccines, including 20 percent of first-graders at Small Elementary School in South Portland and 13.2 percent of kindergartners at Pond Cove Elementary in Cape Elizabeth.

Murphy said she would change her behavior if she knew that there was an outbreak at a nearby school. She would avoid crowds and maybe make a special trip to the doctor’s office.

“It’s not just me. There’s a lot of people in Maine like me. You’ve got to tell people where this is happening,” Murphy said.

She said she’s not sure if she had chickenpox when she was a child. About 10 percent of the population, before the vaccine was introduced in 1995, never had chickenpox as a child. If they were to contract the disease as an adult, symptoms would likely be more severe, according to the U.S. CDC. In Murphy’s case, contracting chickenpox would be life-threatening.

She said now that she’s aware chickenpox is circulating in Maine, she will go to her doctor and see if she can get tested for it, and get the vaccine if needed.

While a chorus of Maine public health experts who don’t work for the Maine CDC criticized the agency last week after hearing the news that it wouldn’t disclose the names of the schools, the reality is that the decisions can be very nuanced, said Dr. Jeff Engel, executive director of the Council of State and Territorial Epidemiologists.

Engel – while not commenting on Maine’s decisions and policies – said depending on the particulars of each outbreak, health officials may determine that there’s no further risk of outbreak and no need to notify the general public.

“The duty to notify is to those who may have been exposed,” Engel said. “You tell who needs to know, and that’s situational.”

Engel said state agencies may be afraid of violating federal patient privacy laws or of lawsuits by people who may sue if their health history is compromised.

He said that’s why state laws typically give health agencies wide latitude on how much information to release to the public.

But critics of the Maine CDC have said that in the chickenpox cases – since there were at least three cases at every school where an outbreak happened – there’s no risk of identifying children. Also, the schools have already sent notes home with the students, so naming the school carries no additional risk of identifying sick children.

“Naming the school is not naming the individual,” said Deb Deatrick, senior vice president of community health for MaineHealth, the parent company of Maine Medical Center in Portland.

Bronda Niese, a Brunswick resident who does not have school-age children, said she was upset and surprised to learn the Maine CDC does not routinely notify the public of where disease outbreaks occur.

“There’s no way I would know if it happened at the schools here. There has to be a better way we can inform and protect the general population,” Niese said.

Joe Lawlor can be contacted at 791-6376 or at:

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