From the Milwaukee Journal Sentinel (6/27/09)
By Mark Johnson of the Journal Sentinel
In Chicago, the swine flu killed a 20-year-old woman with an underlying risk factor who had been admitted to the hospital a week before she died.
In Maricopa County, Ariz., the swine flu killed a woman in her late 40s with lung disease.
In Milwaukee, the American city with the most confirmed swine flu cases, the virus killed someone local health officials described as “an adult who had a common underlying medical condition that made them more at risk of influenza complications.”
At a news conference called to announce the city’s first swine flu death, Health Commissioner Bevan K. Baker would not disclose the person’s gender, underlying medical condition or age range beyond “adult.” Nor did he say when the person was admitted to the hospital.
Three deaths. Three different communities. Same disease.
The still-growing swine flu pandemic has illuminated sharp differences in the way health agencies handle two sometimes competing goals: protecting the privacy of a person’s medical records while releasing information of importance to the public at large.
Those favoring greater disclosure argue that even small pieces of information transform victims from statistics into real people, which ensures greater attention. More attention, in turn, increases public awareness and ultimately helps people protect themselves.
“I’ve always argued that privacy concerns should perhaps take a back seat to public health needs in gathering this data,” said Alexander Ozonoff, an associate professor of biostatistics at Boston University. “I’m very much a believer in the public having available information so that collectively we can make good decisions.”
In particular, Ozonoff suggested that the age of swine flu victims could be useful in persuading young adults to visit a doctor when they have flu-like symptoms, something people of that age are less inclined to do.
Those in the privacy camp argue that release of gender, age and other information can damage the trust patients place in public health agencies, a crucial factor when it comes to investigating and fighting the spread of diseases. Some privacy advocates also fear that the public could use some information to stigmatize certain groups, or create a false sense of security.
“We don’t want to make people overly anxious when they don’t need to be. On the other hand, we don’t want people to relax their disease-control practices, like hand-washing, because they don’t think it applies to them,” explained Jeanne Matthews, who teaches public health nursing at Georgetown University.
Baker said the health department has been withholding even gender and age information to comply with state and federal law and to protect the privacy of grieving families. He said he has treated victims of the novel H1N1 virus no differently than he would victims of HIV and tuberculosis.
“Aside from the law, we believe if we release information on any specific case it would cause the public to be distracted from the broader message,” Baker said in an interview Thursday. “We believe the absence of age and gender does not impede their ability to understand a specific threat.”
Baker added that with a novel strain of influenza no one has immunity. As of last Monday, Wisconsin had 3,472 confirmed cases of H1N1 flu.
Stephanie Marquis, spokeswoman for the Wisconsin Department of Health Services, echoed Baker, saying that state law prohibits the disclosure of the specific ages and genders of swine flu victims because any details obtained as part of a patient’s health record are considered protected information.
Marquis said health officials must seek the permission of relatives before releasing the age and gender of swine flu victims, information that in small communities could give away their identity.
So far, however, three of the four swine flu deaths in Wisconsin have involved Milwaukee residents; the fourth involved a Wausau resident.
“It seems to me, it’s an excessive amount of caution,” said Lucy Dalglish, executive director of the Reporters Committee for Freedom of the Press. “I would think it would be an interest of public health. I would think age is relevant to this. Gender might be relevant.”
And even when a family has been willing to talk – the mother of Wisconsin’s third victim, Tiara Mosely, spoke openly – Children’s Hospital and the local and state health departments refused to shed any light on the case.
In Chicago, officials have come to a very different conclusion about the best policy in a pandemic. Tim Hadac, the city health department’s director of public information, said he releases the following information about swine flu victims: age, gender, area of the city, date of onset of symptoms, date of hospitalization and date of death. City officials do not ask the permission of families before releasing the information.
“We always want to put a face on public health,” Hadac said. “Those numbers are not just numbers. They’re people. If there’s a public health threat out there, we want people to read about it and think about it.”
Chicago’s policy has been in place for 18 years.
“We didn’t start by looking at a law book,” Hadac said. “We considered the public’s right to know with a sensitivity to patient privacy.”
When people can put a face on swine flu victims, he said, “they’re more apt to learn and practice prevention. There’s no proof of that, but that’s our feeling.”
Hadac and others acknowledged that the disclosure of information is a balancing act, one that sometimes presents difficult choices.
At the Maricopa County, Ariz., Department of Public Health, spokeswoman Jeanene Fowler said she provides an age range, gender and general information about any underlying medical conditions that may have made a person more vulnerable to swine flu.
“The idea behind it is that we give enough information so the public understands what we are dealing with,” she said.
“People want to know, are we dealing with a young child? We want to paint as accurate a picture as we can while still keeping confidentiality.”
A key part of the picture health officials have been painting on swine flu involves the age of the most severe cases. The H1N1 virus appears to be killing higher-than-expected numbers of children and adults in their 20s, 30s and 40s. By contrast, relatively few adults over 65, one of the at-risk groups for seasonal flu, have died during the H1N1outbreak.
Fowler believes disclosing the age of swine flu victims advances the cause of public health in this pandemic.
“We’re going to make a really big push this fall for school-age children to get their seasonal flu vaccines,” she said.
Meg Kissinger of the Journal Sentinel staff contributed to this report.