Why was the medical condition “Wegener’s granulomatosis” renamed “granulomatosis with polyangiitis?”
Sixty-four years after celebrated German pathologist, Dr. Friedrich Wegener, identified the disease, it was discovered that he had been a Nazi.
This isn’t the only example of a problematic disease name.
“A good disease name is very difficult to create,” says Elizabeth Mumford, of the World Health Organization’s Department of Global Capacities. Back in May of 2015, she co-authored a report titled “World Health Organization Best Practices for the Naming of New Infectuous Diseases.”
When asked for an example of a poorly named disease, Mumford fingers Middle East Respiratory Syndrome, or MERS. The name, she says, is both misleading—there have been outbreaks in other parts of the world—and stigmatizing to the region.
When there is a new infectious disease outbreak, such as MERS, a name coined by literally anyone can be “circulating around the world within in hours,” Mumford says. “Those sorts of disease names tend to stick…They tend to be very catchy and very difficult to change after they’ve been released.”
A good name? Mumford says good disease names are difficult to create, but she points to SARS, or Severe Acute Respiratory Syndrome as an example of one that follows the WHO guidelines. It explains the symptomatology well, but even it had a downside.
“The only problem with that name was that the acronym SARS was also the acronym for Hong Kong Special Administrative Region. So there was also some problem with that acronym. But all in all, it was one of the better named diseases.”
The WHO’s International Classification System provides the official name. However, someone else usually gets to the disease-naming scene first, so the organization has released a set of best practices for giving a new disease a name.
Hear the full interview with Elizabeth Mumford above.