Worries over stigma are driving a push to rename monkeypox, but the process is slow


CNN
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Since the beginning of the monkeypox outbreak, scientists and activists have pushed for the name of the virus and the disease to be changed to something “non-discriminatory” and “non-stigmatizing.”

Public health experts have worried that stigma could steer people away from getting tested and vaccinated. A new name can help slow the spread of the disease, they say, but it needs to come quickly.

Globally, nearly 60,000 cases have been identified, placing the name “monkeypox” in individuals’ medical files. The World Health Organization’s director-general promised in June that a change in the name was coming “as soon as possible,” and WHO said it was working with experts to change the name of the virus, its variants and the disease it causes.

But that was months ago.

Typically, the scientist who isolates a virus gets to suggest a name. The naming of the species is the responsibility of WHO’s International Committee on Taxonomy of Viruses.

Scientists have been calling this virus “monkeypox” for 64 years.

In 1958, researcher Preben von Magnus and his team in Copenhagen, Denmark, discovered two outbreaks of a “pox-like disease” in a colony of crab-eating macaque monkeys that their lab used for polio vaccine production and research.

The first human case of monkeypox wasn’t documented until 1970. Scientists discovered a case in a 9-month-old boy in the Democratic Republic of Congo. The child recovered from the monkeypox infection but died six days later from measles. After that, cases of the painful disease were documented in West and Central Africa.

Cases in other places were almost all linked to travel, according to the CDC. But in 2018, the agency noted that over the previous decade, more human cases had been reported in countries that had not seen the disease in several decades. This emergence, it said, was a “global health security concern.”

The global push for the name change started this year, when an outbreak took off in countries where monkeypox was not commonly found.

The naming process had already been underway to reconsider the names of all orthopoxvirus species, WHO said in an email to CNN, including cowpox, horsepox, camelpox, raccoonpox and skunkpox, as well as monkeypox.

According to WHO taxonomy committee member Colin McInnes, the panel has a mandate to bring “virus species nomenclature into line with the way that most other forms of life are named.”

Traditionally, poxviruses were named after the animal in which the disease was first spotted, but that created some inconsistencies, he said.

Monkeypox probably didn’t start in monkeys. Its origin is still unknown. The virus can be found in several other kinds of animals like Gambian giant rats, dormice and a couple of species of squirrels.

McInnes, who is deputy director and principal scientist with the Moredun Group, which develops vaccines and tests for livestock and other animals, studies squirrelpox – which also may be in line for a name change. He has been looking into the feasibility of producing a vaccine against the virus, which can be fatal for red squirrels in the UK.

The current species known as “monkeypox virus” and the others would then be renamed to “orthopoxvirus ‘something,’ ” he said in an email to CNN.

“It is the ‘something’ that is currently being debated,” McInnes wrote.

He said some scientists would prefer that the monkeypox name be kept in order to retain the link to 50 years of published research. Others would like a totally different name.

The WHO committee has until June 2023 to suggest changes.

In August, WHO announced that a group of experts had come up with new names for the clades, or variants, of monkeypox. Prior to more modern conventions about names, scientists would name a variant for the region where it emerged and was circulating.

Now, to remove any stigma that comes with naming a disease for a region or country, the Congo Basin clade will be called clade I. The former West African clade is clade II. A subvariant, clade IIb, is what is primarily in circulation in the current outbreak.

Many scientists say WHO needs to work with more urgency.

In July, after weeks had gone by no action, the New York City health commissioner sent a letter to WHO, urging it to “act in this moment before it is too late.” It cited “growing concern for the potentially devastating and stigmatizing effects that the messaging around the ‘monkeypox’ virus can have on these already vulnerable communities.”

Since the outbreak has largely affected gay and bisexual men and other men who have sex with men, stigma has been an ongoing concern for WHO Director-General Tedros Adhanom Ghebreyesus.

“Stigma and discrimination can be as dangerous as any virus,” Tedros said when he declared monkeypox a global health emergency in July.

In the US, the virus is disproportionately affecting Black and Hispanic people, according to the CDC. Local public health data also shows that fewer members of either community are getting the monkeypox vaccine.

Experts are concerned that in addition to the barriers that make access to any kind of health care difficult, some people may not get the vaccine or get tested because of the stigma associated with the disease.

In the WHO 2015 naming conventions, the organization encouraged those who name diseases to avoid places, names, occupations and animals due to stigmatization.

In August, WHO encouraged people who want to propose new names for monkeypox to submit suggestions to its website. More than 180 ideas have been suggested, some with a wide mix of creative explanations.

Some – like lopox, ovidpox, mixypox and roxypox – had no explanation.

A handful – like rodentpox, bonopox and alaskapox – may have been facetious.

Johanna Vogl, who submitted “greypox,” wrote that the name “refers to a phenotypic mark of the disease, greyish blisters and is not associated with human skin color nor a location, group or animal.”

Other suggestions come with more robust scientific explanations. Dr. Jeremy Faust, an emergency medicine physician at Brigham and Women’s Hospital in Boston and an instructor in emergency medicine at Harvard, suggested changing the name to opoxid-22.

“While the monkeypox virus causing the current outbreak is not a novel pathogen, I propose that due to its designation as a public health emergency of international concern, renaming it is warranted,” Faust wrote in his proposal. He added that although this particular lineage of the virus seems to have originated before 2022, using this year may “limit confusion.”

Opoxid-22 reflects what’s known about the virus while removing “monkey” from the name.

Faust said he was bothered by the inaccuracy of the monkeypox name and the stigma it conveyed. But he said he submitted the name when he was waiting for some other work to finish.

“Honestly, I was just procrastinating,” Faust said.

He said that if WHO picked his name, it could help more people seek treatment, testing and care.

“This is important,” Faust said. “The right name should sound dry, technical, boring, so people aren’t afraid to say that they have that problem, right?”

Rossi Hassad, a professor of research and statistics at Mercy College and a fellow of the American College of Epidemiology, submitted a few names including zpox-22, zopox-22, zovid-22, hpox22 and hpi-22.

His proposal argues that given the uncertainty over where the virus originated, a more general name derived from a zoonosis – meaning a disease that can be transmitted from animals to humans – would eliminate the word “monkey” and be more inclusive.

Adding “22” would reflect the year in which scientists learned about this “outbreak with unusual and worrisome human-to-human transmission,” the proposal says.

Hassad said he was motivated to submit names because the word “monkey” can carry a lot of negative connotations.

“It has been used in racial and racist slurs against certain groups. I think it will be disingenuous not to recognize the damage that that word has done,” he said. “It is also scientifically incorrect. It’s a misnomer. If we want to be scientific, we have to be correct.”

Some US health departments aren’t waiting for WHO, but the change is inconsistent.

San Francisco’s Department of Health calls it MPX. Chicago’s calls it MPV. Other cities hit hard by the outbreak, including Houston, New York City and Philadelphia, have stuck with the traditional name, as has the CDC.

Daniel Driffin, an HIV patient advocate and a consultant with NMAC, a national organization that works for health equity and racial justice to end the HIV epidemic, said he hopes the name will change. At the same time, he is disappointed that it wasn’t until this outbreak, when people outside of Africa were widely affected, that the pushing for the change started.

“It’s a name steeped in racism. It’s a day late and a dollar short. But I support the change and think it will help,” Driffin said. “Think about the populations who will continue to be impacted disproportionately with this disease. It’s been Black and brown folks, so if we can strip racist oppressive tendencies from the nomenclature, I think we have to do that.”