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Health journalists cite uneven disclosure of H1N1 deaths across country Date: 12/02/09

An informal poll of AHCJ members from across the country, as well as a review of press releases and news reports, reveals that there is a wide variation in what information local and state health officials are disclosing about H1N1 deaths. Some examples:

When a child died of H1N1 in Billings, Mont., local health officials held a press conference, according to an AHCJ member. They revealed the child's exact age, gender, city of residence and the place and time of death. They added that the child had no underlying illnesses. But when children died in New Hampshire and in Beaver County, Pa., the Associated Press reported that health officials refused to reveal the child's age or gender.

AHCJ members say that when someone dies of H1N1 in Kansas or Florida, the state issues a press release, while Oklahoma and Alabama update tallies on their Web sites. Other states and counties release information only if asked, and some are silent even when asked.

In North Carolina and Tennessee, AHCJ members are finding that officials give out little information beyond the number of deaths that have occurred in the state, leaving the public in near-complete darkness about the toll of the H1N1 pandemic in their own communities.

If someone dies of H1N1 in Iowa or Illinois, public health officials reveal only that it's a "child," "adult" or "elderly adult." In Rhode Island and Washington, an age range is disclosed, such as "in his 20s" or "age 45 to 55." Some states give the exact age.

A press release from Delaware provides helpful details: "Delaware's Division of Public Health (DPH) was notified this morning that a 52-year-old Kent County male, who was admitted to the hospital on October 21 with H1N1 flu-related complications, died on Saturday, November 7. The patient did have a very serious underlying healthy condition prior to contracting the flu."

But when a child died in North Carolina, state officials said, "To protect the family's privacy, the child's hometown, county, age and sex are not being released."

"We understand the need for health officials to protect the privacy of those with H1N1," says Felice J. Freyer, chair of AHCJ's Right-to-Know Committee. "But, in some places, officials are withholding more information than necessary, perhaps because of a lack of clear guidelines about what should be revealed. This comes at a high cost; health officials lose the public's trust when they hide information. Anyone may wonder: If they won't even say how old the victim was, what else are they concealing about the sicknesses affecting my community?"

AHCJ is preparing a guide for journalists who have difficulty getting basic information about deaths that are of public interest. The organization also hopes to work with public health officials on national level to encourage greater openness.