In swapping mpox for monkeypox, local advocates say names matter

Published 12/1/2022 6:00 a.m. EST

3D generated image of DNA spiral being attacked by monkeypox Virus.

Like many other long-time health care advocates, Cleo Manago bristled at the name monkeypox used to describe the infections that began climbing in Baltimore last spring.

“I was one of the people who was a pain in the neck to the health department when I first heard the terminology,” said Manago, CEO of the Pride Center of Maryland, a nonprofit advocacy group for the region’s sexual and gender minority community.

The infections locally were largely in Black and gay men, and he knew, “Words matter.”

Officials at the World Health Organization ultimately agreed. This week they cited the “racist and stigmatizing language” following the outbreak in changing the preferred term for the disease to mpox.

It was a swift change to the name of the disease, a move that WHO officials say normally takes years. It was quickly adopted by U.S. health agencies, including the Centers for Disease Control and Prevention.

The term monkeypox won’t be eliminated immediately. It will be phased in over the next year to reduce confusion while the outbreak continues. Monkeypox will also remain in published research because WHO only has authority to change disease names under the International Classification of Diseases but not the underlying viruses.

Still, observers say the push is notable.

“WHO will adopt the term mpox in its communications, and encourages others to follow these recommendations, to minimize any ongoing negative impact of the current name,” said WHO officials in a statement.

The importance of the move goes beyond those affected directly, said Nancy Kass, the deputy director for public health in the Johns Hopkins Berman Institute of Bioethics.

She said not only does it destigmatize infections, which can help uptake of testing and vaccinations to stem the outbreak, but it can also help others who are not gay, Black or male to understand their level of risk and to support others in their community.

“We saw with COVID, when a particular disease is new or at higher prevalence, it engenders a need for communication,” Kass said. “The name becomes shorthand for much of that communication and where the communication goes. It turns out the names are not necessarily neutral in terms of how the public interprets them.”

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A term like monkeypox has racist and other negative associations and interferes with public health messages, she said.

Kass said there are other historical examples of stigmatizing diseases by associating them with populations or locations, from associating syphilis with loose morals to the more modern association of COVID-19 with people of Asian descent, which she said led to “tragic consequences” including violence.

She said among the most notable examples is HIV, initially called GRID, short for gay-related infectious disease.

“That stigmatized people who were sick and reinforced stereotypes for people who had any predilection in thinking that being gay was dangerous or bad or associated with uncleanliness,” Kass said. “It said this disease is inherently gay-related and others weren’t at risk, and that is not the case.”

Public health officials believe mpox cases are coming down, but messaging remains important to continue to control the disease.

In Maryland, 732 people have tested positive, with about a third of cases in Baltimore, figures from the Maryland Department of Health show. Almost three-quarters are in their 20s and 30s, about two-thirds are Black and nearly all are male.

Most recover from an infection at home without treatment, though it can be serious and painful. Symptoms include fever, aches, swollen lymph nodes and a telltale rash that can take weeks to heal. It hits harder in people with weakened immune systems, such as those with advanced HIV or cancer. Two people in Maryland have died.

Officials in the Baltimore Health Department said testing has recently trended down in the city, which may be due to the Thanksgiving holiday.

Vaccinations have also declined after an initial burst of demand. The vaccine was initially in short supply and was restricted to those most at risk, forcing a frustrated public onto waiting lists. Restrictions have since been loosened and demand has waned.

City health officials recently partnered with Nomi Health in West Baltimore to offer walk-up and self registration for vaccination appointments, and the officials want more people to consider the two-shot regimen.

“We believe there are still individuals who remain at risk for MPX exposure who have not yet been vaccinated; we are encouraging those who may be exposed to MPX in the future to be vaccinated,” said Arinze Ifekauche, an agency spokesman, using an abbreviation for monkeypox.

He said officials acknowledged early on the importance of how they named diseases.

It was part of discussions with health partners and people in the community about how they could reduce stigma and reach people with important health information, Ifekauche said.

“We’ve taken great care to ensure that the public knows that anyone that has extended close physical contact with a person with MPX can contract the virus, while also providing direct outreach to the populations in Baltimore most impacted by the outbreak as indicated by local, state, and national data.”

Until this outbreak, cases were rarely found outside of Africa, but began spread rapidly in the spring around Europe and then the United States in men who had sex with men (though mpox is not considered a sexually transmitted disease). Infections do spread through close physical contact and contact with items that touched a rash or fluids.

Public health officials say informing everyone about how the disease spreads has been critical to controlling cases, which now top 29,000 across the country.

Lynda Dee, executive director of AIDS Action Baltimore, an advocacy group, said the name could overshadow the needed information.

The change is “extremely important given today’s climate of racism, stigma and hate speech,” she said. “Everything we can do to reduce stigma and promote linkage to care and treatment is essential to public health, especially in the area of infectious diseases.”

For Manago, the name is better, but he would have gone a step further and dropped the letter m, still closely tied to the word monkey, which can be used as a derisive term. Monkeys may not even be the main vector for the virus’ spread, he said.

WHO says many animals harbor the virus and may spread it to humans, but it’s rodents that are the most likely natural reservoir.

Manago said, “Why not rpox?”