Should diseases be renamed?

Updated: Sep 6

Monkeypox is in the news for lots of reasons, including the controversy around its name. For some, like the World Health Organization (WHO), the name has racist connotations, and may risk stigmatizing certain groups. That’s why the WHO is now working to officially change the name of this disease.

The intention is admirable, and not without strong arguments in its favor. But at the same time, in a compelling article in The Atlantic, Dr. Benjamin Mazer asks, will it really change anything?

Other disease names have led to confusion or given an incorrect impression that only certain portions of the population could be affected by them. For example, AIDS was initially called GRID, short for “Gay-Related Immune Deficiency”. And yet, Mazer points out, even after the name change, AIDS continued to be strongly associated with the gay community throughout the epidemic, and still is today.

In recent years, another reason for disease renaming has become popular. A number of conditions whose names come from scientists and doctors who were involved with the Nazi party have been changed, or a change has been strongly encouraged.

But despite the good intention behind them, these name changes aren’t always easy or universally agreed upon.

For one thing, Mazer notes, the new name might be harder to say than a simple last name. This is the case for blood disease Wegener’s granulomatosis, which was changed to “granulomatosis with polyangiitis”. Most of the doctors Mazer knows prefer “Wegener’s”, a shortened version of the former name.

Of course, patients also have strong opinions about this issue. Some have to change the name of their condition. For instance, a group of patients fought to change the name of neurological defect Hallervorden-Spatz disease, whose namesakes were Nazi doctors. After ten years, many medical professionals in the US now refer to it as Neurodegeneration with Brain Iron Accumulation (NBIA).

But some groups don’t want to give up the way they’ve referred to their condition for years, no matter how controversial its moniker might be. A notable example is the Asperger’s community. Asperger’s is no longer listed separately in the DSM but is instead considered a form of autism. Additionally, the condition’s namesake condemned many autistic children to death under the Nazi regime. But by the time the DSM had “erased” it in 2013, the name had become something that united its sufferers, maybe even made them feel proud. And so, many people with this condition continue to refer to it as “Asperger’s” and identify themselves as “Aspies”.

Other conditions’ names are hard to change for a different reason: simple staying power. Leprosy, for instance, was renamed “Hansen's disease” by certain groups, but most people today still have no idea what this newer name means. The disease is often seen as a bygone condition, but it still affects hundreds of thousands of people in 161 countries. Many of them feel stigmatized - after all, the word “leper” has come to mean “outcast” in everyday language. Unfortunately, their disease’s name seems hard to change because it’s been called that since the middle ages. Even the day devoted to Hansen’s disease awareness is still called “World Leprosy Day”.

When it comes to renaming diseases, not only is public name recognition an issue; as medical journalist Helen Branswell points out, changing the name of a disease can also make medical research more difficult. If a condition has had one name for a long time, that means it’s been referred to that way in countless research papers, manuals, and other resources.

Monkeypox is a good example of this. The condition was first named in 1958 and has been referred to that way without contest, until recent months. Changing the name of a disease means medical researchers will still have to keep the old one(s) in mind when searching through earlier scholarship and surveys.

That’s not impossible to get around, but Mazer asks if we really even need to do it in the first place. The name “monkeypox” has been blamed for various things, including sounding racist or making the disease seem like a joke. Many also cite its inaccuracy, since the condition didn’t start in monkeys and can be spread by humans and a wide range of animals. There are reports of “monkeypox” being used as a slur against gay men in recent months. And yet, would things be different if the name were changed? Would the new name simply replace the old in terms of stigma, like what happened with AIDS?

One thing Mazer and other health experts can agree on is that whatever ends up happening to monkeypox’s name, the disease hasn’t been given proper attention where it counts: patient education, prevention, and treatment.

Maybe we’re paying too much attention to the name and not enough to what’s really important. “Sure, monkeypox sounded odd when I first started hearing it in conversation”, Mazer writes, “But that feeling quickly went away as doctors had to deal with the scourge itself, and with a public-health failure of actions.”

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