Sometimes when a new or rare disease starts to spread, communication around it can become negative, causing stigmatization in certain groups. The onset of the COVID-19 pandemic found people often targeting Asian communities in the U.S., which shows us that as a society, we may not be past blaming some communities for disease outbreak.
The U.S Centers for Disease Control and Prevention reports 4,106 cases of monkeypox globally as of June 27. The U.S. has about 200 of those cases, 51 of which are in California.
While the virus can spread to anyone via close skin-to-skin contact, it is not a sexually transmitted disease.
The World Health Organization and the CDC have focused some of their messaging on gay and bisexual men, after some cases were identified in that community. But that opens a historically vulnerable group to becoming stigmatized once again.
Sacramento LGBT Center CEO David Heitstuman said the organization is doing outreach but feels parallels to the HIV crisis.
“We’re sort of coordinating and thinking about communicating with other LGBT organizations across the country who are sort of seeing what’s happening in their communities,” Heitstuman said. “A lot of people are harkening back to the beginning of the HIV epidemic when public health wasn’t paying super close attention.”
Heitsuman and Alexis Sanchez, director of advocacy and training at the Sacramento LGBT Center, met with Insight Host Vicki Gonzalez to discuss how to talk about monkeypox while reducing harm.
Note: The WHO is working on developing a new name for this poxvirus, given that name can be seen as discriminatory and stigmatizing.
This interview has been edited for clarity and length.
On how the outbreak is being communicated
Heitsuman:So for us, we’re sort of coordinating and thinking about communicating with other LGBT organizations across the country who are sort of seeing what’s happening in their communities.
And really, a lot of people are harkening back to the beginning of the HIV epidemic when public health wasn’t paying super close attention. People didn’t think they could get it.
And so, right now, we’re really focused on just doing some general education with communities members about what to look for and what the symptoms are, and how it spreads, and to make sure that if they are experiencing any symptoms or they suspect that they might have been in contact with someone, that they contact their health care provider … and really be a self-advocate for what might be going on.
On what stands out about how monkeypox is being talked about
Sanchez:I think it really is balancing community awareness with not perpetuating any negative stereotypes about the community and also communicating accurate information of how monkeypox is being transmitted and how it is prevented.
And the thing that I’ve been talking about with many of our community members is that the interventions that work to prevent HIV and the spread of COVID are going a long way towards preventing monkeypox.
There is a higher prevalence of COVID-19, especially in our community right now, and there is still a high prevalence of HIV in certain communities in Sacramento.
So if we are doing things such as getting tested regularly [for monkeypox], if we’re doing things such as using barriers and other forms of protection, that’s going to go a long way towards preventing monkeypox.
I think there’s space for nuance, right? With monkeypox, we have to talk about fomite transmission and sweat and other things like that, but generally broad strokes, we are really leaning into a general prevention message across all three diseases.
On how labeling a group as a potential vector can cause harm
Sanchez:So something that we saw in the early stages of the HIV/AIDS epidemic was the disease was labeled as a “gay disease,” right?
So we had bisexual men who were transmitting. We had cisgender heterosexual couples that were contracting HIV and not understanding that they could still spread it to other individuals.
So really talking about how [monkeypox] spreads from skin-to-skin contact, from sweat, and saying that it could really affect really anyone is really, really, really important.
On if there’s concerns that LGBTQ+ groups will be discriminated once again
Heitsuman:I want to be hopeful that that’s not going to be the case, and at the same time, I think it’s really important that there be a strong partnership between public health and community-based organizations that are really looking to ensure that we respond very quickly to these kinds of outbreaks.
Right now, most of the cases had been [with] folks who have been connected … to an LBGT-focused event in Europe … This isn’t a disease that discriminates, and so it can infect any person and very likely will if we don’t get it under control right away.
On how stigmatizing marginalized communities harms everyone
Sanchez:I think that I, as an advocate, can only do so much, but it really comes down to everyone really educating themselves and not perpetuating stigma towards particular groups and particular individuals.
When I talk about and do advocacy for transgender women and transgender women of color … my own background is in public health. I like to talk about the social determinants of health and why marginalized communities tend to have higher risks for certain illnesses.
It’s not because they have certain behaviors, but it’s more about the built environment and less access to primary care, less access to all sorts of resources that are going to keep a person healthy.
And so when I’m talking about prevention, not perpetuating stigma in communities, I’m also talking about what puts certain communities at higher risk as well and what we can do to address some of those things.