Roughly three months into an unprecedented outbreak in Colorado, here are some things we think we know about monkeypox:
- The virus can spread in a variety of ways and infect anyone given the right circumstances.
- Much of the transmission happening currently appears to be the result of intimate contact during sex.
- The large majority of cases so far are in men under the age of 45, and the large majority of those men are gay, bisexual or have sex with men.
- It’s entirely possible that the predominant transmission routes and the communities most affected could change.
- There’s plenty we don’t know, and some of what we think we do know will evolve.
Now, given that information, how would you craft a clear, targeted and effective message to the public while also conveying all the unknowns and all the ways this information could change? While focusing most on the groups currently at greatest risk for exposure but not stigmatizing those groups or cementing in the minds of others a false sense of safety? While accounting for people’s alarm-fatigue weariness with public health crises but also inspiring the public to yet again rise to the occasion to defeat a virulent pathogen?
That is the question public health officials in Colorado have been facing — and struggling with — for months now, as Colorado’s monkeypox cases have climbed to 203, with 129 of those reported in August.
“It absolutely is a challenging balance,” said Dr. Rachel Herlihy, the state epidemiologist.
But it’s a balance that public health organizations must get right if the virus is to be contained.
Avoiding the mistakes of the past
Before you get to vaccinations or contact-tracing or quarantines, the earliest prevention tool public health officials have is the one that seems the least complicated: communication.
Viruses often spread through the social connections of human communities. Providing people with clear, actionable information can break the transmission patterns.
“These issues are not unfamiliar to the public health community in terms of risk communication,” said Glen Mays, a professor at the Colorado School of Public Health and an expert on health systems. “They’re kind of always with us.”
That importance makes communications failures in public health especially consequential. And the monkeypox messaging puzzle lives in the shadows of two big ones: HIV and COVID-19.
With HIV, early messaging nationally focused on the community, not the virus, which was initially called GRID, for gay-related immune deficiency. Linking the virus to the gay community created a discriminatory stigma that made some people less likely to seek testing or treatment and made fighting the virus that much harder. It also created a false impression — that the virus was a disease that only attacked gay men, leaving the rest of the public unprepared for it to spread more widely.
With COVID, messaging didn’t adequately communicate to the public how understanding of the virus was evolving and how guidance would evolve with it. Masks didn’t work, then they did, then only certain types of masks did. The virus wasn’t airborne; oh wait, it is airborne. At one of his first news briefings on the virus, Colorado Gov. Jared Polis said it was believed to spread only when people were showing symptoms.
Those reversals, though understandable based on the changing information about the virus, also weakened some people’s trust in health agencies.
“With COVID a number of mistakes were made with early messages about how the virus was spread and what we knew and didn’t know,” Mays said.
Connecting with the community
Public health officials are trying to avoid those mistakes with monkeypox. In Colorado, Herlihy’s quotes on the virus are often dotted with phrases like “so far” and “based on the current data.”
But the effort to learn from the past has gone beyond that. Nadine Bridges, the executive director of One Colorado, one of the state’s most prominent advocacy organizations for the LGBTQ+ community, said CDPHE first contacted her organization to talk about monkeypox before the first case was even identified in the state.
Since then, One Colorado and another LGBTQ organization, The Center on Colfax, have been meeting with CDPHE officials regularly.
“Last week I was in three different meetings with them,” Bridges said.
Mostly, they talk about how to craft messages that accurately convey information without causing harm. Bridges said her team communicated the need to just share facts. She said it is important to emphasize that the virus can spread to anyone — more than 7% of Colorado monkeypox cases have been in people who identify as heterosexual — even if it is disproportionately impacting one community now.
“It’s really about putting out the facts and making sure people are prepared to make the most informed decision possible,” Bridges said.
As a result, CDPHE’s posters and flyers on monkeypox — distributed at events like June’s Pride celebrations — are largely informational, without specific calls to alter behavior. Both Bridges and Herlihy said it’s important not to shame or stigmatize the ways in which transmission is occuring.
“It’s been important for public health to make sure that we’re getting the critical information we need to get to the information who need it most,” Herlihy said. “But we also don’t want to add to the stigmatization of potentially marginalized communities.”
One Colorado also urged CDPHE to change some of the underlying basics in its approach. For instance, the agency’s vaccination criteria initially focused solely on men. At One Colorado’s urging, that criteria has now broadened to include people who are transgender and nonbinary.
Bridges said her organization also encouraged CDPHE to rethink using the term “monkeypox.” The origins of the virus’ name come from its initial discovery in monkeys, but monkeys are not believed to be its reservoir species. Meanwhile, an association with monkeys plays into bigoted stereotypes about LGBTQ people and also Black and African people — the virus is endemic in parts of Africa and many of the early images used in news stories about the latest outbreak were stock photos of lesions on Black skin.
At the state’s most recent briefing on monkeypox, Herlihy instead used the term MPV when talking about the virus, short for monkeypox virus. (The Colorado Sun continues to use the term monkeypox because we follow Associated Press style, which continues to use the name. The World Health Organization is exploring the possibility of changing the name of the virus altogether, though that effort appears stalled.)
Overall, Bridges said her organization is mostly satisfied with CDPHE’s efforts.
“Nothing’s perfect,” Bridges said, “but they have been open to really working with our health equity team and our communications director.”
But still the communication effort hasn’t always gone smoothly.
“A misleading phrase”
In the first news release the Colorado Department of Public Health and Environment sent out about a monkeypox case, it noted that men who have sex with men and people who have traveled internationally were “currently at a higher risk for monkeypox exposure.”
In its second news release, sent a day later, the agency tweaked the wording a bit, writing: “Epidemiological data on recent cases suggest there may be a heightened risk for people who have recently traveled to a country where monkeypox has been reported or men who have sex with other men.”
That change, essentially dropping the words “currently” and “exposure” when describing risk, led Colorado WINS, the state employee union, to issue a statement blasting the agency.
“This is a misleading phrase that may guide the public to believe this disease may only be spread between gay men,” the union wrote. “Language like this stigmatizes the LGBTQ community and stokes unnecessary fear which could isolate people from seeking treatment, or even incite violence against certain communities.”
“Everyone is very sensitive to that,” said Dr. Daniel Pastula, a professor of neurology, infectious disease and epidemiology at the University of Colorado School of Medicine. “We want to make sure everyone knows that monkeypox is not a gay disease, it’s not isolated to the gay community.”
The messaging around monkeypox has been hotly debated nationally, as well — especially when it comes to whether public health officials should advise people to abstain from sex or reduce their number of partners.
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A senior epidemiologist in New York City spoke out publicly against the city public health department’s messaging on monkeypox, arguing that it should be more direct in telling men who have sex with men to reduce their number of partners. He was later reassigned, a move he called retaliation.
Both the World Health Organization and the U.S. Centers for Disease Control and Prevention have now urged people to consider limiting their sexual partners and avoiding sex parties. But for some activists, the focus on gay men especially has been a repeat of the mistakes of HIV, while for others, the messaging that “anyone can be infected by monkeypox” is dangerously imprecise.
“To avoid accusations of homophobia they didn’t send this message, which resulted in a lot of pain and suffering for gay and bi men,” the columnist, podcaster and LGBTQ community advocate Dan Savage wrote on Twitter last month, referencing the hesitancy by public health officials to advise gay men to limit their sexual partners.
CDPHE has mentioned the CDC guidance, but Herlihy and others have largely avoided the topic during media briefings, instead sticking to their approach of just providing facts.
Getting back to the basics
To step back from this sometimes heated debate, Pastula, the CU infectious disease professor, recommends returning to the basics.
He lays out a five-point plan: tell the truth; give preliminary information but make clear it’s just preliminary; promote action by people affected; involve input from the community; and combat misinformation as it arises.
“It’s always good to say, well, we have a problem,” Pastula said. “Now here are some suggestions on how to respond to that problem or prevent that problem from happening.”
That message could also vary based on the intended audience, said Mays, the health systems expert. When focused on communities specifically impacted, Mays said the messaging can be more direct and targeted. But when speaking to the community at large, he said it is best practice for the message to be inclusive.
“So framing it with an ‘all of us’ perspective is one of the recommended strategies to avoid stigmatization,” he said.
That explains why public health officials and LGBTQ advocates like Bridges have preferred the messaging on monkeypox to remain broad. While the virus is currently affecting the LGBTQ community disproportionately, that could change. And that makes the cost of focusing just on one community too risky, both in terms of public health and in terms of inclusion.
“We want people to know that everyone should be paying attention,” Bridges said. She added later: “What we don’t want is anyone to take this information and use it to harm our community.”