Nearly seven weeks after the World Health Organization said it will change the name of the monkeypox disease, agreeing with scientists who called it "discriminatory and stigmatizing," the controversial label doesn't seem to be going anywhere.
Critics say the name "monkeypox" plays into racist stereotypes about Black people, Africa and LGBTQ people — and, they note, it falsely suggests monkeys are the main source of the virus.
"Monkeypox should be renamed for two major reasons," said Dr. Ifeanyi Nsofor, a global health equity advocate and senior New Voices fellow at the Aspen Institute. "First, there is a long history of referring to Blacks as monkeys. Therefore, 'monkeypox' is racist and stigmatizes Blacks."
"Second, 'monkeypox' gives a wrong impression that the disease is only transmitted by monkeys. This is wrong," he adds.
Yet despite growing criticism of the name, the International Committee on Taxonomy of Viruses told NPR that even if the name is changed in the next year or two, the term "monkey" will likely still be part of any revamped name. While WHO names diseases, the ICTV determines the formal names of viruses.
In recent discussions held by the ICTV, "the consensus is that use of the name 'monkey' is sufficiently separated from any pejorative context such that there is no reason for any change," Elliot Lefkowitz, the organization's data secretary, told NPR via email.
And when asked for an update on WHO's name-changing process, WHO Chief Scientist Dr. Soumya Swaminathan said last week: "We, as far as I know, have not received any proposals for a name to replace monkeypox." The process, she adds, remains open for suggestions.
Nonetheless, the movement to change the name of the virus is continuing. Last Tuesday, New York City public health commissioner Ashwin Vasan sent a letter urging WHO Director-General Tedros Adhanom Ghebreyesus to act immediately to rename monkeypox, citing "potentially devastating and stigmatizing effects."
Vasan described how, in the early days of the HIV/AIDS epidemic in the 1980s, "misinformation about the virus led people to believe that it was spread to humans after people in Africa engaged in sexual activity with monkeys." With the monkeypox name linked to similar feelings of stigma and racism, Vasan said people of color and members of LGBTQ communities "may avoid engaging in vital health care services because of it."
As calls to rename the disease are growing, so is the current outbreak. In fact, the disease's spread prompted WHO to declare it an international public health emergency in July. When WHO announced its plan to rename monkeypox in June, there were around 3,100 confirmed or suspected cases worldwide. There are now 22,485 cases, according to the CDC — only 344 of them in countries with a history of monkeypox.
One of the worst outbreaks is in the U.S., which has reported 5,189 cases, including 1,345 cases in New York state, the CDC says.
The fact that the name change is still being debated presents a contrast to the urgency the agencies showed in labeling COVID-19.
Less than two weeks after WHO declared the novel coronavirus a public health emergency of international concern on Jan. 31, 2020, it announced the disease would be called COVID-19. The same day, the ICTV said the virus would be known as SARS-CoV-2. Early names for the disease had centered on Wuhan and China, raising concerns about sparking stigma, discrimination and repercussions against people of Asian descent.
There's been a desire to fix 'offensive and inaccurate' names
Even before COVID-19, there's been pressure to rename viruses and diseases, says Christin Gilmer, the global health lead at Global Health Labs, a nonprofit based in Seattle. Other candidates for new names, she says, include Ebola and the Spanish flu.
Monkeypox is making headlines right now, Gilmer told NPR via email, partly because some populations are being exposed to it for the first time. But, Gilmer added, "associating a disease with a region has much longer lasting, negatively impactful consequences than most people realize."
The WHO has embraced a similar idea, saying that when researchers name diseases, they should seek to minimize unnecessary harm to "trade, travel, tourism or animal welfare, and avoid causing offense to any cultural, social, national, regional, professional or ethnic groups."
Gilmer says she understands the psychology and human logic at work in naming a new disease in a way that connects it to details about its discovery, such as the animal or place in which it was found. But in her view, "if we can help, protect and improve the health equity of people by changing an offensive and inaccurate name, it makes sense to do so," she said.
What have global health agencies said so far?
Recognizing problems with disease names, WHO issued criteria in 2015, specifically telling researchers to avoid including animal terms or geographical places when they name new diseases. That criteria cited monkeypox as an example — but the WHO didn't call for revising the name.
And while the ICTV says a change to the monkeypox virus' formal name could come in the next year or two, the revision wouldn't be a response to the current outbreak. Instead, it's part of a broad review of naming conventions for all virus species, including monkeypox, after the ICTV adopted changes in 2020 to standardize its naming format.
For example, the formal name for the virus could change, Lefkowitz told NPR, from the current Monkeypox virus to Orthopoxvirus monkeypox.
Experts say to focus on what matters
It's important for stigma to be a focal point in the discussions around monkeypox, says Keletso Makofane, a public health researcher and activist who is a fellow at the FXB Center for Health and Human Rights at Harvard.
But changing the disease's name isn't a priority for Makofane, he says.
"At the moment, the things that are really standing in the way of a successful response are just having access to testing, to vaccine and to treatments," he said. "And if those things were fine, there'd be no monkeypox to talk about."
The government was too slow in mobilizing its monkeypox vaccine stockpile, Makofane says. "What [was it] imagining that [it was] waiting for? And why is that thing more important than people who are saying they are experiencing the worst pain of their lives right now? So, the naming of it is secondary to everything else."
The WHO's executive director for health emergencies, Mike Ryan, says the main problem isn't the name of the disease itself, but the way in which some people use it.
U.S. health officials recently urged people not to "propagate homophobic or transphobic messaging" when discussing monkeypox. And in May, a group of international journalists in Kenya called out U.S. and European media outlets for repeatedly using images of Black people to illustrate stories about monkeypox — despite the outbreak's fast growth in Europe and the U.S.
"No matter what names we use, if people are determined to misuse and to weaponize names in order to isolate or discriminate or stigmatize people, then that will always continue," Ryan said in the WHO's briefing last week.
It's the scientific community's job, he added, to reduce the chances for stigma to flourish.
The debate touches on another word: endemic
It wasn't until 1970 that the first human monkeypox case was recorded. In the decades since, most cases in people were reported in central and western African countries, where monkeypox had long been considered to be endemic.
And here we arrive at another word Makofane says is due for a closer look: "endemic," the term for a disease that's come to be constantly or normally present in a population or in a geographical region. It often implies a sense of equilibrium or stability — but it can also engender apathy, particularly among people who aren't directly affected by the disease.
The problem with the way the "endemic" is often used in the media and public discourse, Makofane says, is that it can create "the impression that those people's suffering [in Africa] is to be expected and is acceptable, whereas the suffering that's happening here as a result of monkeypox is highly exceptional and that we should be responding."
"And that's obviously racist," he said.