What’s in a disease name? WHO has recommendations

Mad cow disease. The name alone strikes fear in the hearts of beef eaters and tourists. Following one of the numerous outbreaks in northern England in 2001, authorities had to urge visitors to return to the nation’s idyllic countryside-turned-ghost town.

It may be hard to soften the panic that already surrounds mad cow disease, or swine flu or West Nile virus. But if new World Health Organization recommendations take hold, the next time an infectious disease is identified, it could have a much more innocuous effect on the public psyche.

Last week, the WHO issued best practices for how to name a newly born or identified human infectious disease. Scientists and the public should strike from their list of disease names any mention of an animal species, such as avian flu and mad cow disease; type of food; cultural or occupational references; specific locations such as West Nile virus, Lyme (a town in Connecticut) disease and Ebola (a river in the Democratic Republic of the Congo); nor the names of people, such as Alzheimer’s, Lou Gehrig’s disease.

“I completely agree with the WHO in terms of eliminating [these] references,” said Dr. Robert Bristow, the medical director of emergency management at New York Presbyterian Hospital. “You don’t want people to be scared of birds or cows or traveling to a part of the world where there was a case or two,” he says.

The new naming practices aim to avoid those negative connotations. The WHO suggests that dubbing a disease should involve mention of the symptoms associated with that disease, and, if appropriate, the pathogen (such as the virus or bacteria) responsible for the disease and the season associated with it.

One example? Swine flu could go by A(H1N1)pdm09, a name the WHO put forth in 2009.

Bristow thinks this might be too much information. Just “new flu” could be enough, along with something such as “highly transmissible” to indicate that it is not your ordinary seasonal flu.

“When pandemic flu was around, we had so many people coming in with no or mild symptoms trying to make sure they didn’t have bird flu,” Bristow recalls. The same happened after mad cow outbreaks. He thinks there would be much less stir around “highly transmissible new flu.”

Including symptoms in the disease name could be a tricky matter, however. If mad cow disease went by just “mad disease,” the fear would probably still exist. As Bristow points out, the disease names must be accurate but ideally not sensational.

In one success story, the word “hemorrhagic” got dropped from Ebola’s name early in coverage of the disease because it turned out not to be a common symptom of infection. But the fact that the disease is named after the river where the disease was first diagnosed has probably ensured most tourists stay far away.

The task of assigning more subdued names to diseases will fall on the scientific community and the local communities where the first cases of the diseases occur. Mad cow disease, for example, got its name in the 1980s from the ranchers who first noticed their cattle stumbling around. When scientists arrive to try to identify the disease cause, they often just pick up the name that’s already being used.

As the WHO announcement stated, scientists as well as national authorities and the media should take care early on to give a name that is more responsible and accurate.

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